Out PDF

The Construction of a New Family Identity After a Child’s Autism Diagnosis
Presented to the Faculty
Regent University
School of Communication and the Arts
In Partial Fulfillment
of the Requirements for the
Doctor of Philosophy
In Communication
by
Sandra J. Romo
March 2016

ProQuest Number: 10107446
All rights reserved
INFORMATION TO ALL USERS

The quality of this reproduction is dependent upon the quality of the copy submitted.
In the unlikely event that the author did not send a complete manuscript
and there are missing pages, these will be noted. Also, if material had to be removed,
a note will indicate the deletion.
ProQuest 10107446
Published by ProQuest LLC (2016). Copyright of the Dissertation is held by the Author.
All rights reserved.

This work is protected against unauthorized copying under Title 17, United States Code
Microform Edition © ProQuest LLC.
ProQuest LLC.
789 East Eisenhower Parkway
P.O. Box 1346
Ann Arbor, MI 48106 - 1346
Regent University
This is to certify that the dissertation prepared by:
Sandra Romo
titled
THE CONSTRUCTION OF A NEW FAMILY IDENTITY
AFTER A CHILD’S AUTISM DIAGNOSIS
Has been approved by his/her committee as satisfactory completion of the dissertation
requirement for the degree of Doctor of Philosophy
John Keeler, Ph.D., Committee Chair

William Brown, Ph.D., Committee Member

Benson Fraser, Ph.D., Committee Member

March 2016
ii

© 2016
Sandra J. Romo
All Rights Reserved

iii
Abstract
The news of an autism diagnosis in the family is often shocking and bewildering to
family members left to deal with the life-altering implications of autism. The communicative
behaviors of families dealing with an autism diagnosis often result in the construction of a new
family identity. This phenomenological dissertation explored the family identity construction
process of 12 families with a member diagnosed with autism, the communicative experiences in
and outside the family, as well as the families’ autism stories. This study’s findings suggest how
families construct a new family identity after the autism diagnosis and that many types of
communication took place within and outside the family about autism. Additionally, the family
autism narratives provided a glimpse into the experiences families with a member on the autism
spectrum must navigate to construct, maintain and make meaning out of their new family
identity.
Keywords: family identity, identity construction, autism stories, family storytelling,
reframing, family communication, social abstraction
iv
Dedication
This dissertation is dedicated to my beautiful children Nicholas Mark and Emma Grace.
This study was inspired by each of you. I cannot begin to describe my love for both of you, and
desire to help you see individuals for who they are – uniquely made by God. My dear Emma
Grace, your strength and tenacious spirit is a testament that through faith in Christ anyone can
overcome anything. From a non-verbal lost toddler without a desire to engage with anyone to a
vibrant and talkative seven-year-old that is a little social butterfly, your autism story is nothing
short of miraculous. I will always hold close the feelings I felt when we learned about your
autism diagnosis and know that God has delivered our family from that dark place. Those feeling
were not forgotten but were the catalyst for this four-year exploration into the lives of families
struggling with autism daily. My charismatic Nicholas Mark, your compassion, confidence, and
acceptance has taught me that labels do not matter. I am constantly amazed at your natural
tendency to help, support and unknowingly advocate for your sister. Observing your experiences
and interactions with your sister’s autism inspired me to explore how autism influences the entire
family. Without each of you, this study would not have been possible.
v
Acknowledgements
There are several people that deserve acknowledgment for their support and assistance in
this project, as well as my entire course of study for this degree. Undoubtedly, this project and
degree would not be possible without God. Many years ago, I was a naïve young adult that
graduated high school in Colton, a small working class town in Southern California. I had a
desire to teach kindergarten. I had no idea I would ever have the opportunity to pursue a Ph.D.,
because of God I was afforded this opportunity.
I thank my family for their years of encouragement and support. Each and every member
of my family has been instrumental in shaping me to become the person I am today. Your love,
support, and dedication to me, Mark, Nicholas and Emma does not go unnoticed.
To my husband, Mark, this venture would not be possible without your unwavering
support and dedication to this project. Throughout the roller coaster of emotions I experienced
within this journey you resiliently stood by me, often with minimal sleep and after working 60+
hours in a week, as I finished this project. Your undying confidence in me kept me going each
and every day to achieve this milestone. We are like two halves of a circle that are only
completed when attached to each other and this journey equally involved both of us. Now that
this project is finished, I promise to resume a regular cooking schedule so you and the kids do
not have to fend for yourselves like wild animals in the forest searching for food. To my
children, Nicholas and Emma, thank you for being resilient fun-loving children that enjoy being
regularly babysat by family and friends while I worked on homework and this project.
Throughout the course of my Ph.D. studies, I watched you grow from energetic toddlers to
vibrant school-aged kids. Please remember that you can achieve anything you want with hard
work. Nicholas, always remember Mom is watching and that I know everything you are doing!
vi
Emma, Mommy’s “IS-ER-A-TION” is finished so now we have plenty of time to play. My
faithful miniature dachshund, Stevie, has spent 13 of his 14 years of life sitting next to me while
I completed homework. It goes without saying that his loyalty was not unnoticed, but also
appreciated during the many times I worked late into the night. I am so proud he has lived to see
this degree completed.
To my mother, Dr. Mary Ann Pearson, you instilled the value of education into my life at
an early age. When you made the decision to go back to school to finish your bachelor’s degree
and subsequently your masters and doctorate degrees, I had no idea what you endured doing that
while raising three children, including an ornery know-it-all teenage daughter. Today, I know
that was not an easy feat. I am honored to be known as your daughter and want you to know that
you inspired me to achieve my dreams. You have fought for me since I was in your womb and I
am grateful for your endless love and support. This project was completed as a testament to your
dedication to educational pursuits and confidence in me to pursue my dreams. To my father, Big
Ed Pearson, I am honored to be your daughter and am grateful for our many conversations about
autism as I navigated my own autism journey. Thank you for being the father I needed, stepping
up when others did not, and always encouraging me to accomplish my dreams. Your continued
support and willingness to help along the way did not go unnoticed.
To my second parents, my father-in-law and mother-in-law, Mark and Roxanne Romo, I
am honored to bear your family name and appreciate your continual support. I am so thankful
you raised Markie to become the husband he is today – he assumed his father’s work ethic and
mother’s faith because of your unwavering support in his life. Your prayers and support during
this journey was needed and appreciated, as well as your desire to spend time with your
grandchildren, as I was able to get away and finish this project. I am so privileged that my
vii
children have both of you as Godly examples in their lives, and am grateful for the relationships
you have with each of them.
To my compadre, Mark Sandoval, and comadre, Aja Sandoval, I am so grateful precious
Emma has each of you as her godparents, as well as Deanna and Darla as godsisters. Little did
we know the unique abilities and difficulties Emma would face in the last seven years, but I am
honored she has each of you as an extra layer of support in her life. The influence each of you
had on her throughout her life is nothing short of a gift from God. I appreciate the countless
times both of you let Nicholas and Emma play at your house and fed Romo while I worked on
this project. I couldn’t have asked God for better compadres to have in my life. I am honored we
are able to raise our beautiful children together.
I’d like to acknowledge the many dear friends that were instrumental in the completion of
this project. To The Fab Five qualifying examination study group, Dr. Melissa Tingle, Dr. Pete
Kenney, and soon-to-be Drs. Mark Paustain and Shannon Leinen, each of you were instrumental
throughout this entire program. I am grateful that I had each of you as support during the last two
years during the qualifying examination period and throughout the dissertation process. From our
endless chats about the struggles within this program to in-depth conversations about whether
communication studies is a field or a discipline, I am honestly not sure if I would have finished
this project without your near daily encouragement.
Dr. Melissa Tingle, who knew that four years ago I would meet a tenacious and sassy
kindred spirit staring back at me during our first residency? I am so grateful that a lifelong
friendship has blossomed out of this venture. You have no idea how much our endless
conversations and continual text messages have supported and reassured me to know that I was
not neurotic throughout this process. Your reassurance, support and ability to just listen to me
viii
vent about my dissertation struggles and successes did not go unnoticed. I am excited to see
where our future scholarly pursuits take us. I am so honored to call you my sister and friend.
Soon-to-be, Dr. Shannon Leinen, I am so glad I sat next to you four years ago in our first
residency. You were my first friend to emerge out of this program and your support and faith in
me gave me confidence early on within the program to keep plugging along and to not give up
this journey. Markegaard, your faith in God and this journey were an inspiration to me at every
step during this process. I may not have been able to write as much as you, but I am grateful for
the wisdom you had in many of our scholarly discussion along the way. Because of you, I now
think more deeply about topics I never knew I had an interest in. Dr. Pete Kenney, I am blessed
to call you my friend. Your compassionate nature and common-sense approach to this venture
allowed me to be real with myself each step of the way. Watching your journey throughout the
last year has shown me that God is faithful and will provide strength regardless of the struggle
one is facing.
Dr. Heather Stilwell, God uniquely placed you in my life. Just when I thought I did not
need the support of others as I navigated my own path as a special needs mom, he brought me
you. I am so grateful that each day our conversation can vary from a deep scholarly discussion to
a vent session about how the IEP process is such an annoyance in our lives. If there is one thing
you have taught me, it is that there is nothing an almond milk latte cannot fix! I am honored to
say that you are not just a scholarly buddy but also a life-long friend. I cannot wait to see where
we go within the next twenty years, and only hope we can fulfill Mark and Steve’s dream of
never having to work again!
Last, but not least I would like to thank my doctoral dissertation committee. Dr. John
Keeler, I am grateful you took me under your wing early on in my doctoral studies and
ix
encouraged me to pursue this understudied area. I am appreciative of your support and
encouragement as a fellow autism parent. Dr. Benson Fraser, thank you for serving on my
dissertation committee. Your passion for qualitative research encouraged me to pursue this area
of study in my dissertation. Storytelling is not an easy task, and your instruction along the way
has made this venture go smoothly. Dr. Bill Brown, thank you for stepping in at the last hour to
serve on my dissertation committee. I am grateful for your dedication to this project and to see its
completion.
To the families dealing with autism daily, I am inspired by your support to your children
on the autism spectrum. As fellow autism mommy I know the struggles experienced with raising
a child with autism. Your tenacious spirit and undying dedication to your children constantly
amazes me. Stay true to your pursuit and with God’s support you will move mountains for your
angelic children.

x

Table of Contents
Chapter One: The Introduction ...................................................................................... 1
Autism the Tragedy ..................................................................................................................... 1
Communication and the Autism Diagnosis Process ................................................................... 3
Autism the Epidemic ................................................................................................................... 5
History of Autism ........................................................................................................................ 8
Autism and the Family .............................................................................................................. 14
Communication Research and Autism ...................................................................................... 16
Purpose Statement ..................................................................................................................... 17
Significance of the Study .......................................................................................................... 18
Chapter Two: Literature Review .................................................................................. 20
Public Perceptions and Autism ................................................................................................. 21
Neurodiversity ........................................................................................................................... 25
Stress and Autism ...................................................................................................................... 27
Information needs and coping ................................................................................................... 31
Family identities and autism ..................................................................................................... 34
Quality of life and autism .......................................................................................................... 34
Friendship, Bullying and Autism .............................................................................................. 41
Family Communication and Narratives .................................................................................... 43
Research Questions ................................................................................................................... 47
Chapter Three: Methodology ........................................................................................ 51
Phenomenology ......................................................................................................................... 51
Narrative Inquiry ....................................................................................................................... 53
xi
Life Story Interview .................................................................................................................. 54
Reflexivity ................................................................................................................................. 55
Sample and Approach ............................................................................................................... 56
Recruitment Methods ................................................................................................................ 58
Interview Methods..................................................................................................................... 59
Data Analysis ............................................................................................................................ 60
Chapter Four: Autism Stories ....................................................................................... 64
The Coleman Family ................................................................................................................. 65
The Gonzalez Family ................................................................................................................ 67
The Jade Family ........................................................................................................................ 70
The Juarez Family ..................................................................................................................... 74
The Miles Family ...................................................................................................................... 77
The Perez Family ...................................................................................................................... 81
The Peterson Family.................................................................................................................. 84
The Ramos Family .................................................................................................................... 87
The Rodgers Family .................................................................................................................. 90
The Rodriguez Family............................................................................................................... 93
The Smith Family ...................................................................................................................... 98
The Thompson Family ............................................................................................................ 101
Chapter Five: Findings ................................................................................................. 105
Research Question #1 .............................................................................................................. 106
xii
Chapter Six: Discussion................................................................................................ 151
Experiential Communication................................................................................................... 152
Discussion of Major Findings ................................................................................................. 153
Family Storytelling as a Social Construct to Identity Construction ........................................ 153
Reframing the Autism Family ................................................................................................. 158
Factors that Influence how Families Communicate about Autism ......................................... 153
Theoretical Implications .......................................................................................................... 163
Contributions to Scholarship ................................................................................................... 170
Limitations of the Study .......................................................................................................... 172
Directions for Future Research ............................................................................................... 173
Heuristic Comments ................................................................................................................ 175
Conclusion............................................................................................................................... 176
References ...................................................................................................................... 178
Addendum 1 – Recruitment Flyer ............................................................................... 194
Addendum 2 – Sample Social Media Posts ................................................................. 195
Addendum 3 – Online Participation Survey .............................................................. 196
Addendum 3a – Online Family Participation Email ............................................................... 198
Addendum 4 Interview Guide ..................................................................................... 199
xiii
Chapter One: The Introduction
Autism the Tragedy
Autism, a spectrum of disorders that are not fully understood by the medical community
and often misunderstood by the general public, has been a rapidly growing problem in the United
States and elsewhere in recent years. It can devastate families unlike any other developmental
disorder. Fear of the unknown typically is the first feeling a parent has when they find out their
child has autism. It can be the scariest kind of news some parents ever receive (Neely-Barnes,
Hall, Roberts & Graff, 2011). Caurso (2010) contended learning about the diagnosis of a child’s
autism ignites tragic feelings of loss and engagement with a person you love and compares this
experience to a scene out of the classic 1950s film ‘The Invasion of the Body Snatchers’ (p.
484). The lack of knowledge about the etiology of autism, questions about the quality of life for
someone with autism, and the unknown future for a newly diagnosed autistic child and those
who will be caring for them fosters this fear within families. I know this is true.
Feelings of fear and a sense of tragedy hit my family when our experience with autism
and an autistic child began. My husband and I learned about our daughter’s autism diagnosis
shortly after her second birthday. Instantly, everything we thought about our daughter was
tainted and labeled as autistic. She was no longer the quirky, independent, low maintenance,
quiet child we had loved since before her birth. She was viewed initially as broken and damaged.
Everything about her was wrong and not considered ‘typical.’
At first, we were shocked by the news. Then the multidisciplinary team that had assessed
her over the better part of a year continued to shatter the dreams we had for her and our family at
each subsequent assessment appointment. It got to the point that I went to the appointments alone
because I could compartmentalize the pain – push it away as I heard the prognoses, and not think
1
of my beautiful daughter. My husband, well, he wanted to negotiate doctors’ prognoses and
attempt to try to convince them she was not autistic, and then go home and try to ‘fix’ her. He
also was in pain, broken-hearted and could not figure out how he could help his little girl.
As time passed we learned that we had to navigate this journey together, but take
different routes to arrive at a new normal for our family. I decided to immerse myself in the
scholarship about autism, bragged about becoming an ‘expert’ in a matter of months, and braved
unchartered territory as I wrestled with my insurance for coverage of various therapeutic options
and doctors’ appointments. My husband willingly sat and listened to me talk about my newfound
knowledge, but took a more hands-on approach by assisting therapists in helping our daughter
learn how to become a ‘typical’ child. We also relied on our various extended family members to
provide support and love. We accepted our fate for what it was and assumed the role of special
needs parents. Eventually, we accepted that we would never fulfill our desire to have a third
child because of the care our daughter required. We came to terms with the idea that Emma
would never have the life we dreamed about, but we learned that it did not matter that she was
autistic. We loved her more after her diagnosis than was ever possible in the time before we
knew about autism. Ultimately, we decided not to tell her older brother she had autism. This was
an attempt to teach him that each person is uniquely designed and loved by God. We are to
accept people for who they are and love them for their own characteristics and abilities. We
stopped caring if she was or was not considered a ‘typical’ child. She was our child. We
accepted her for who she was and knew God had special purposes for her and would help her
along the way. We started living again and pursued a normalcy that came to fruition. We did not
let autism defeat our family. Instead, we embraced it.
2
It was my family’s experience with our daughter that inspired this study. This study
provided a glimpse into the experiences families have had with a child who has an autism
spectrum disorder. It explored how these families have communicated during their experiences
with autism from the point of diagnosis onward in an effort to better understand autism as a
significant communication experience that influences family relationships and shapes family
identity. The study examined these families’ communication patterns and their effects within
both the nuclear and extended family, as various members have experienced and adjusted to life
with a child with autism. It will also look at how these families have communicated with those
outside the family regarding autism and their child with this disorder. At the same time, it
explored how communication from those outside the family has influenced communication
within the family and family identity.
Communication and the Autism Diagnosis Process
Autism is not a disorder that is routinely discussed in many pediatric medical offices. The
American Academy of Pediatrics (AAP) recommends pediatricians screen for autism at two-
year-old physicals (American Academy of Pediatrics, 2012). However, many recent research
studies state the earlier autism is diagnosed the better prognosis for a child (Autism Speaks,
2013). Many pediatricians follow the AAP’s recommendation and screen for autism at age two
even though most parents do not learn about their child’s autism until the age of three (Halle &
Graff, 2011). Recent research also has determined that there are key markers that infants
exhibited as young as four months (Autism Speaks, 2013). However, tools to diagnosis autism at
such a young age are unreliable and not widely used.
Hall & Graff (2011) discussed that many parents know little about autism at the time of
their child’s diagnosis, and health professionals, usually, give parents little information about
3
their child’s prognosis (p. 22). Even after gaining some understanding of the child’s condition, a
stigma typically continues to exist among parents and families affected by autism. As the autistic
child’s parents struggle with fear and uncertainty, family members, friends and even those in the
medical community often react in ways that are insensitive or uncomfortable leading to silence
about the subject of autism and the affected child (Giallo & Gavidia-Payne, 2006). The lack of
communication only further exasperates the confusion about autism, its etiology, the quality of
life that can be expected for those with the condition, and general understanding of the disorder.
Despite the confusion and lack of communication about autism within the medical
community and society, the opposite is the case among autism advocacy groups. A plethora of
these autism advocacy groups exist and each group communicates its own message about autism.
Some, like Autism Speaks, focus on building awareness about the disorder and current and
further needed research to determine its causes (Autism Speaks, 2013). Other groups, like
Generation Rescue, communicate information to their audience about biomedical approaches to
treating autism (Generation Rescue, 2014). Other groups are established to help those that have
autistic disorders and disseminate messages about inclusion and acceptance of autistic persons
(Caurso, 2010).
Some groups have concentrated on possible specific causes of autism and efforts to
remedy them. The most controversial of these have focused on vaccines as a cause for autism
problems and have been quite active and visible in their advocacy. Offit (2010) and others have
countered this by insisting autism is not caused by thermisol or mercury in MMR vaccines (p.
78). Offit (2010) instead points out rhetoric claims autism is the result of childhood vaccinations
has largely been perpetuated by agenda setting through various media worldwide (p. 45).
Regardless, there is a plethora of confusing and conflicting communication about autism.
4
Parents of newly diagnosed children are charged with the task of sifting through vast
amounts of this conflicting information from a variety of sources that collectively still does not
fully address what autism is and how to deal with, including in the case of the individual child.
They face the challenge of trying to discern what is true or false about autism generally and with
regard to their own child. Adding to the problem is that the medical community and most
therapeutic programs provide little help to parents navigating their way through this great
amount yet unclear and conflicting about autism. One reason for the inadequate help given to
parents by the medical community seems to be that much of the scholarship they depend on is
psychiatric in nature. It is designed to help practitioners and medical professionals understand the
state of mind of parents and which therapeutic programs are best for the variety of children on
the autism spectrum (Jolly, 2015, & Fewster & Gurayah, 2015). As previously discussed,
communication scholarship about autism is sparse. The scholarship that does exist is within the
area of health communication and most of it deals with parental and sibling stress, as well as
coping with the stresses of a person with autism (Karst & Kecke, 2012 & Hall & Graff, 2011).
Despite such a great deal of information about autism provided by the medical
community and advocacy groups, what is largely missing is meaningful information designed to
help families during their experiences with autism and their autistic child.
Autism the Epidemic
Children are diagnosed with autism at alarming rates and data indicated that one in sixty-
eight children are affected by autism – a rate that has increased by 78% in the last decade (Falco,
2012 & CDC, 2014). More specifically, one in thirty-eight school-aged children have an autism
diagnosis. On average one child with autism is in every school classroom. Autism in its many
forms is now a global health crisis that does not discriminate based on nationality, ethnicity or
5
social status (Kopetz & Endowed, 2012). Diagnoses also tend to occur in epidemic-like
proportions creating panic and fear in parents. This sometimes causes them to try unorthodox
treatments in attempts to prevent the disorder from being exhibited in their children (Neely,
Amatea, Echevarria-Doan & Tannen, 2012). According to the American Psychiatric Association
(2013), autism is a neurological developmental disorder that is characterized by severe and
pervasive deficits in social interaction associated with impairment in either verbal or nonverbal
communication skills or stereotyped repetitive behaviors. It is genetic and diagnoses cannot be
prevented with unorthodox treatments and lifestyle behaviors from parents (American
Psychiatric Association, 2013). Many within the medical community and some outside it
commonly accept the APA’s general view that children are born with autism today.
It is quite clear that autism involves improper brain functioning that negatively affects a
child’s social interactions, communication skills, and ability to engage in imaginative play. For
the family of a child receiving this diagnosis, it is often devastating both socially and emotionally
(Neely et. al, 2012, p. 211). Although autistic individuals share many unique characteristics
caused by the disorder, it has been found that any two people with autism are not the same.
Therefore, general medical diagnoses for autism can exasperate the devastation a family feels
about their child with autism and their confusion about how to treat or cope with the child and
their condition (Hall & Graff, 2010). While there is much speculation and different opinions
within the autism community about the specific causes of autism, generally it is a phenomenon
whose etiology is not really known. This also is responsible for most of the inaccurate
perceptions of autistic people held by medical professionals, advocates for specific ways to deal
with the problem, families and the general public (Neely et. al, 2012, p. 213). There also is much
debate about the reasons for the substantial increase in autism spectrum diagnoses in more recent
6
years. Some speculate that this was primarily the result of using broad definitions and diagnosis
criteria (Autism Speaks, 2013).
In contrast, some contend that because of increased sophistication of early diagnosis and
awareness of autism, the medical community is able to more accurately diagnosis children with
autism. They assert that this has led to more accurate diagnoses instead of children with autism
being diagnosed with other disorders (Feinstein, 2010 & AAP, 2012).
The debate about vaccine-related injury leading to the onset of autism also fueled more
diagnoses and confusion. In 1998, Andrew Wakefield published a study in The Lancet that
contended thimerosal and mercury in MMR vaccines caused autism (Wakefield, Murch,
Anthony, Linnell, Casson, Malik, Berelowitz, Dhillon, Thomson, Harvey, Valentine, Davies, &
Walker-Smith, 1998). Wakefield’s contention about the MMR vaccine and autism led many
parents to not vaccinate their children out of fear of their child contracting autism (Offit, 2010).
However, The Lancet retracted Wakefield’s article in 2010 and stated in the retraction that his
1998 study was unsubstantiated (The Lancet, 2010). Since the retraction of Wakefield’s
unsubstantiated research, the Center for Disease Control (CDC) published many studies that
refuted speculation that vaccines cause autism (Offit, 2010). However, speculation still exists
about the relationship between vaccines and the onset of autism. Neither the specific genetic
abnormality nor etiology of the assumed genetic abnormality is known (NIMH, 2013). Limited,
conflicting or distorted information about autism that comes from the medical community and
other sources can create confusion amongst parents of newly diagnosed children and make
adjustment to their situation much more difficult.
7
History of Autism
Autism was unknown, in America, until Leo Kanner identified and recognized it as a
disorder over 70 years ago (Hall & Graff, 2011). He released the first paper that identified autism
as a disorder that was rooted in psychoanalytic theory in 1943 (Caurso, 2010). Specifically, he
noted that children he observed had an innate desire for aloneness or to retreat from the world
and displayed significant delays in socialization, communication, as well as similar ritualistic
behaviors (Kanner, 1943, p. 243). Prior to Kanner’s paper, autistic children were diagnosed as
idiots, mentally retarded, feeble-minded or with infantile or childhood schizophrenia (Caurso,
2010). Despite much greater, although still limited understanding about autism today, many still
have severe misperceptions about the disorder. Neely-Barnes et. al (2011) found that the general
public is unaware about autism and what it looks like. They typically view autistic children as
idiots, mentally retarded or feeble-minded (p. 211). However, Kanner (1943) recognized there
was something peculiar about these children and through research determined these children had
unique similarities that were not evident in any other disorder and should be classified as autistic
(p. 220). He carefully noted he did not know the etiology of autism but hypothesized it was
caused by a lack of love and affection from mothers. He contended that distant, unemotional or
detached mothers caused autism. They were known as ‘refrigerator moms’ – the first negative
and inaccurate perception of the disorder (Kanner, 1943, p. 250).
Kanner argued that genetic factors played a role in autism, but he was strongly influenced
by psychoanalytical theory. The idea that lack of love and affection from mothers also provided
an etiology that was easier for psychiatrists, mental health professionals, and doctors to explain
to parents (Neely-Barnes et. al, 2011, p. 218). In the 1950s, Kanner was quoted as stating that
parents of autistic children were so unemotional that they only showed emotion long enough to
8
conceive a child. This further perpetuated negative stigma towards autistic children and
prompted the spread of negative rhetoric about the disorder (Greydanus & Toledo-Pereyra,
2012).
One year after Kanner’s publication of his paper on autism, Hans Asperger identified and
described ‘autistic psychopathy’ as a disorder where children exhibited significant delays in
social interaction, repetitive, and ritualized behaviors, but were able to think and act in typical
ways by age five (Firth, 1991). Ironically, both Kanner and Asperger studied medicine at the
University of Vienna; however, Kanner returned to the United States after his studies were
completed and neither knew about the research each pursued. Asperger’s paper also did not
receive the notoriety and popularity of Kanner’s paper about autism, because it was published in
German and because of the contentious environment during World War II (Firth, 1991, p. 89).
Asperger’s 1941 paper presented observations of autistic children that were similar to
those of Kanner (Asperger, 1941, p. 238). However, Asperger’s sample of study participants
were able to speak at relatively typical rates compared to those in Kanner’s study. Specifically,
Asperger’s sample exhibited severe and sustained impairment in social interaction and the
development of restricted, repetitive patterns of behavior, interests and activities (Firth, 1991, p.
37). Asperger also noted that those he studied had profound social problems that overshadowed
every other aspect of life, but were compensated by a high level of original thought and
experience that would often lead to exceptional achievements in later life (Asperger, 1944, p.
80).
Whereas Kanner concluded that individuals such as those he studied would have
debilitating behaviors that would greatly impair their quality of life, Asperger offered a more
promising outcome for those he studied. Firth (1991) pointed out that Asperger’s syndrome is
9
significantly different than Kanner’s autism. He asserted that this has fostered debate about the
relationships between Asperger syndrome and autism that has been hampered by ignorance for
decades (p. i). The differences between the affected children observed initially by Asperger and
Kanner caused the psychiatric community to consider two different types of developmental
disorders – autism spectrum disorder based on Kanner’s findings and Asperger’s disorder based
on Asperger’s findings (Feinstein, 2010 & Siklos & Kerns, 2007). These two contrasting
perspectives of and labels for a developmental disorder continue to perpetuate confusion among
families with children diagnosed with either autism or Asperger’s disorder.
In America, children affected by autism in the 1950s and 1960s tended to be diagnosed
with childhood schizophrenia with autistic disturbances of affective contact characteristics based
upon Kanner’s work. The Diagnostic and Statistical Manual of Mental Disorders - First Edition
(DSM-I) provided the first recognition of Kanner’s 1943 paper by placing it within the diagnosis
of schizophrenic reaction, childhood type. It was defined as a psychotic reaction in children
before the onset of puberty that was primarily autism (American Psychiatric Association, 1952,
p. 28). The DSM-II continued to classify Kanner’s autism as childhood type schizophrenia but
explained the disorder as a condition that may manifest by autistic, atypical, and withdrawn
behavior, as well as an inability to develop an identity (American Psychiatric Association, 1968,
p. 35). This led to confusion among parents and medical professionals and many misdiagnoses.
Since the DSM-II was the most prevalent diagnostic manual of mental disorders, children with
autism were often diagnosed with everything but autism. Some children were classified as
having elective mutism or narcissus. Others were diagnosed as mentally retarded, or as idiots
(Feinstein, 2010).
10
A childhood type schizophrenia diagnosis meant that the child had autistic symptoms,
and these symptoms were thought as the earliest forms of schizophrenia (American Psychiatric
Association, 1980, p. 87). So if a child was diagnosed with childhood type schizophrenia they
did not receive treatment for autism. This diagnosis often meant that children were doomed to an
isolated life in a psychiatric facility, away from their families and with no hope for inclusion in
society. They were left untreated and isolated from society out of fear that their autistic
tendencies would manifest into adult type schizophrenia (Feinstein, 2010, Caurso, 2010 &
Grandin, 1996). Not only did this heighten the level of fear among those who had a child with
autism, but it led to years of misconceptions about autism, including the perpetuation of the
“refrigerator mother” myth (Caurso, 2010, p. 485).
Bernard Rimland put forth another possible etiology for autism in 1964. He contended
that it was rooted in neurobiology and not psychodynamics (p. 491). However, his research was
not widely accepted until after a reclassification of autism in the DSM-III in 1983. At this time,
autism was included as a distinct diagnostic category labeled as ‘infantile autism’, which was
designated as the only form of autism. It included six characteristics, which had to be exhibited
in affected children (American Psychiatric Association, 1980). These six characteristics were
onset before 30 months of age, pervasive lack of responsiveness to other people, gross deficits in
language development, if speech is present, peculiar speech patterns such as immediate and
delayed echolalia, metaphorical language, pronominal reversal, as well as bizarre responses to
various aspects of environment, and absence of delusions, hallucinations loosening of
associations and incoherence as in schizophrenia (American Psychiatric Association, 1980).
In the DSM-III-R, released in 1986, The American Psychiatric Association provided even
more concrete and observable diagnostic criteria for specified behaviors must reflect
11
abnormalities in the individual’s level of development. Both editions of the DSM recognized the
separation of autism from childhood type schizophrenia and acknowledged that early onset
autism is not a precursor to a diagnosis of schizophrenia later in life. Specifically, children with
autism did not experience delusion or hallucinations; research established that diagnosing
children as schizophrenic is difficult and extremely rare (American Psychiatric Association, 1980
& 1987 pgs. 37 & 87). The revised diagnostic criteria in the DSM-III-R brought forth a rapid
increase in the number of autism diagnoses. This led to increased efforts to find the etiology of
autism. However, it is not known if the rise in autism diagnoses from this time on was because
of refined diagnostic criteria or because of the etiology of autism (Factor, Freeman & Kardash,
1989).
The DSM-III and DSM-III-R defined autism in broad terms. It was described as a
neurological pervasive developmental disorder with which individuals exhibited severe
disabilities in the area of communication, socialization, and behaviors where individuals
exhibited ritualistic and repetitive behaviors. In addition, individuals had to exhibit two of the
characteristics within each area to be considered autistic, (American Psychiatric Association,
1980 & 1987 pgs. 38 & 87). It was during this time period when that various autism advocacy
groups described earlier in the chapter arose. They emerged to build awareness of autistic
persons and promote inclusion of autistics within society (Caurso, 2010, p. 486 & Feinstein,
2010, p. 89). Groups like American Society for Autism actually began in 1965 under the
direction of neuro-psychiatrist Bernard Rimland but received resurgence in popularity in the
1980s in conjunction with the changes to the DSM-III and DSM-III-R (Caurso, 2010). Since the
1980s, many autism advocacy groups also have emerged to help caretakers, family members and
persons with autism.
12
The DSM-IV, which was published in 1994, contains much of the same diagnostic
criteria as the DSM-III-R. However, the DSM-IV recognized Asperger’s disorder as a distinct
disorder from autism, but within the categorization of the autism spectrum and pervasive
developmental disorders. Specifically, the DSM-IV stated a stark difference between autistic
disorder and Asperger’s disorder is the lack of delay in language development (American
Psychiatric Association, 1994, p. 69).
In the DSM-V that was released in 2015, Asperger’s disorder was removed as a
diagnosable pervasive developmental disorder. The DSM-V also made significant changes to
the diagnostic criteria for autism. To be diagnosed as autistic, required individuals to exhibit all
of the markers for impairment of social interaction under the diagnostic guidelines instead of
two, as required in other previous editions of the DSM (American Psychiatric Association, 2013,
p. 50). The changes in criteria in the DSM-V was met with much criticism from various
advocacy groups and concerned parents, however, the APA stated the changes were brought
forth in efforts to unify the diagnostic markers of autism and avoid misdiagnoses because of
confusion about language and the ambiguous nature of diagnostic criteria in older editions of the
DSM (Baker, 2013, p.1089). Kite, Gullifer & Tyson (2013) explored the perceptions of changes
to the DSM-V and autism diagnoses and found that 22 percent of the 547 participants supported
the changes (p. 1692). Furthermore, the study found that an analysis of the responses supported
an increasing stigma associated with autism diagnoses, as well as concern of less affected
children being accurately diagnosed as autistic (Kite et. al, 2013, p. 1694)
In the last 70 years, affected persons with autism went from living isolated from society
in psychiatric institutions to a life of inclusion within society. Much of this progress is in large
part because of the refinement of diagnosing autism, as well as the advances made in autism
13
research. The changing nature of the diagnostic criteria over the last thirty years in the DSM was
in large part because of the research efforts made regarding the disorder. This sophistication
provided better opportunities for people with autism and allowed more public acceptance of the
disorder and those who have experienced it to occur. However, the turbulent history of autism
has created a legacy of confusion within the public about the etiology of autism, those afflicted
with autism, and their potential for a high quality of life that still lasts to a considerable extent
today. To say the least, the history of autism has provided much-needed information about the
disorder for those affected by autism but demonstrated there is still much to learn about autism to
help families who have experienced it.
Autism and the Family
In most cases, autism prompts tragic feelings in the hearts of parents. One of these is that
having a child with autism meant that your child, a person that you have had the closest possible
connection within the world, would never understand that you loved them (Caurso, 2010).
Today, many autism advocacy groups are trying to dispel this rhetoric. However, many still
believe that those notions are the reality when their child is diagnosed with autism (Ramisch,
2012). Usually, this occurs because meaningful information about autism is rarely included in
packets of information that new parents receive as they leave the hospital. Autism also typically
is not discussed in parenting and pregnancy books. It is often thought of as taboo and
mentioning the word might strike fear in the minds of parents expecting a child. As noted earlier
in the chapter, most pediatricians routinely screen for the disorder at a 24-month physical
(NIMH, 2013). If something appears to be abnormal during the autism screening process,
pediatricians usually refer parents for a formal diagnosis of the child that is completed by a
multidisciplinary panel (American Academy of Pediatrics, 2012). This autism diagnosis process
14
can have a profound influence on married couples and have a great influence on their families as
a whole (Romo, 2015).
Scholarly research that deals with how autism diagnoses and subsequent coping with an
autistic child affect family life are rare (Karst & Van Hecke, 2012). Some research has indicated
there is a significant increase in divorce rates among married couples with a child on the autism
disorder spectrum (Hartley et. al, 2010). Specifically, there is a 70% increase in the chance of
divorce in a family with an autistic child (p.234). This strongly suggests that a family member
with autism has a profound influence on marriages, family life, and family identity. Specifically,
a married couple with an autistic child must find new meaning and resolve in their relationship
and seek a new family identity and related attitudes, beliefs and behaviors that accommodate
raising a child with autism (Caurso, 2010). This can prove to be difficult because couples must
work to establish new cultural norms within the family and work together to do so (Edwards,
2012). This process can accentuate stress levels all parents and families tend to experience and
involve new and difficult forms of stress that are unique to raising autistic children.
Research has demonstrated raising a child with autism creates stress not only on the
martial relationship but also on each of the parents raising a child with autism (Graff, 2011).
Karst & Van Hecke (2012) pointed out parental stress in raising a child with autism affects
mothers more often than fathers (p. 248). Specifically, the study found that stress associated with
raising autistic children fell on the primary caregiver, and mother’s reported overwhelmingly
they provided primary care of their autistic children when compared to their husbands (Karst
&Van Hecke, 2012, p. 250). Some research indicates that negative public perceptions associated
with the disorder specifically increases stress rates among mothers of children with autism
(Ehlrich, 2012). Mothers also have reported the stress they experience is profound. Research has
15
demonstrated that stress levels in mothers with autism are often similar to those with
posttraumatic stress disorder (Seltzer, Greenberg, Jinkuk, Smith, Almeida, Coe, & Stawski,
2010). The diagnosis and early stages of adapting to life with a child that has autism also has a
great influence on the family as a whole.
Communication Research and Autism
Scholarly research has demonstrated to some degree how a child with autism influences
the quality of marital life, family dynamics, and parental stress. Most of the scholarship that
examines autism in this way is rooted in psychology, medicine, and family counseling. Much of
the research that focuses on communication as it relates to autism is concerned with the effects of
public perceptions of autism on the family, as well as information needs and coping with autism.
Manning Wainwright & Bennett (2011) explored family isolation among families with autistic
children (p. 322). Families with a child with autism are more likely to become socially isolated
from other families with the same-aged children. This isolation can lead to lower self-esteem and
increased depression in parents of children with autism (p. 323). Specifically, Manning,
Wainwright & Bennett (2011) utilized the Double ABCX model family communication crisis
model to determine family stress related to raising a child with autism. In this model, a family
utilizes a process to communicate through crisis or new family stressor. Specifically, the family
analyzes the stressor (A), considers available resources to them to meet the communication needs
of the crisis (B), defines the event/crisis (C), and comes up with a family change to accommodate
the aftermath of the crisis (X) (p. 330). It was found that raising an autistic child significantly
affects stress within the family and the quality of family life (Manning, Wainwright & Bennett,
2011). It could be inferred that communication in these families would reflect this. It also has
been discovered that parents of children with autism often seek out information to help cope with
16
the stress of the diagnosis (Offit, 2010 & Caurso, 2010).
There is a great deal of information related to parents’ experiences with autism available
in trade books and publications, on blogs and at various social media outlets. Autism advocacy
groups also have also provided significant information and advice about adapting to life with an
autistic child, therapeutic options and how to cope with the diagnosis. However, much of this and
other questions and issues regarding family’s perceptions, experiences, and communication when
dealing with an autistic child have not been examined in formal research studies. A great deal of
health communication scholarly research and information also exist, but very little is related to
the area of autism. In the area of family communication, only one scholarly research study was
found that was related to autism. This was the previously noted study by Manning, Wainwright
& Bennett (2011) that used the Double ABCX model while examining the quality of family life
when raising a child with autism (p. 321). In summary, scholarly research studies dealing with
communication as it relates to autism are scarce. Studies that examine family communication
when and after a child has been diagnosed with autism are nearly missing altogether. Further
research would provide communication and other scholars with much greater insight into the
area of autism and how communication both reflects and shapes how parents, other family
members and the general public perceive and cope with autism and an autistic child.
Purpose Statement
The purpose of this phenomenological study examined the construction of family identity
after receiving a formal autism diagnosis of a family member. The lived phenomenal experience
of family members in this study provided a full description of what it is like to have an autism
diagnosis in the family. This study qualitatively explored the individual narratives of family
members who have experienced the diagnosis of an autistic school-aged child in their family.
17
Using in-depth interviews, this study sought to uncover how the family communicates about the
autism diagnosis, copes with it on a daily basis, as well as how they constructed a new family
identity while experiencing daily life with someone on the autism spectrum. Overarching
research questions related to this study purpose and addressed in this study are presented at the
end of chapter two, a review of scholarly literature related to the study.
Significance of the Study
This particular study helped meet the need for the dearth of studies that deal with autism
and their effects on families. As previously mentioned, much of the scholarship about autism is
rooted in medical or psychological studies. There is a significant lack of studies that deal with
the social scientific implications of autism on the family. More specifically, research is sparse
within the area of the communicative behaviors within and outside the families dealing with a
family health crisis, let alone an autism diagnosis of a family member. Raising and supporting an
autistic child appeared to have negative effects on families regardless of the severity of
symptomatology or time since diagnosis (Shtayermman, 2013). Research that examined family
communication yielded meaningful detail about not only the difficulties that were involved in
families and relationships within them and with those outside them when receiving an autism
diagnosis and raising an autistic child. It also provided greater insight into the ways families have
positively coped with such circumstances. The study helped fill a significant void of scholarly
studies about family identity it is influenced by and reconstructed in the midst of a family health
crisis. Studies that deal with family communication, stressors and influences are sparse within
health communication.
This study also provided greater insight into family life with an autistic child. Scholarly
studies about family communication and autism generally are missing from the autism literature
18
as a whole and the family communication area or study. Much of the scholarship that deals at all
with family members and autistic person also is limited to the immediate family. This study
examined both immediate and extended family members. In all, this study provided a unique
perspective of and related findings important to the study of family communication, as well as
made a valuable and unique contribution to autism scholarship.
19
Chapter Two: Literature Review
In this chapter literature in a number of areas of study that pertain to this study will be
reviewed. Scholarly studies that deal directly with communication as it relates the subject of
autism and various issues associated with it are scarce. Scholarly literature concerned with
autism, autistic children, and communication in the family context are even more difficult to
find. Most of the literature about autism and identity is rooted in medical, psychological,
sociological and socio-psychological scholarship. There is a sizeable body of literature that deals
with health and disability communication but it tends to address this in broad and general terms.
Most scholarship related to autism in some way also discusses disability and health
communication in a broad tone or is specific to other disorders or disabilities that have a
profound influence on communication in some way. In the family communication area of study,
health, trauma, disability and its effects on the family has gained scholarly attention, but studies
are limited in number and broad in scope.
The goal of this literature review is to critically examine the existing scholarship about
autism, family communication, and identity to contextualize this study and formulate research
questions based on this literature and tied to the specific purpose of this study presented in the
previous chapter. Subject areas and related literature pertinent to this study that are discussed in
the remainder of this chapter include public perceptions and autism, autism advocacy messaging,
the neurodiversity movement, stress and autism, information needs and coping, family identity
and autism, quality of life and autism, friendship, bullying and autism, as well as trends in family
communication.
20
Public Perceptions and Autism
This body of literature and scholarship related to autism discusses trends in advocacy
work, rhetoric and public communication about the disorder. The section provides a historical
overview of how the public perceived autism to the present and discussed the implications of
public perceptions of autistic persons and their family. Autism advocacy messaging provides an
in-depth examination of literature related to trends in autism rhetoric and persuasive messaging
in public awareness campaigns. This theme considers the implications persuasive message about
autism can influence the family dynamic and identity construction after an autism diagnosis in
the family.
Since the recognition of autism as a disorder in 1943, has endured many different public
perceptions. Those who are affected by the disorder, their families, and those outside the family,
typically, have held various negative perceptions regarding the disorder. As we learned from this
brief history of autism discussed in Chapter 1, public perceptions were initially and for many
years afterward shaped by the rhetoric on autism surrounding Kanner’s research on autism in the
1940s. The idea that ‘refrigerator moms,’ women who were emotionally turned off by their
children to the point where they showed very little love and affection towards them, were the
cause of autism was widely accepted (Feinstein, 2010). Kanner later recanted his statement in
1969 that ‘cold or refrigerator-mothering’ caused autism (Caurso, 2010). Nonetheless, the
message that unaffectionate mothers caused autism haunted families for decades. It was further
fueled by the fact that the majority of children with autism were institutionalized and provided
with few, if any, rehabilitative therapeutic options (Covey, 1998). Many other families did not
know autism existed or how to identify the disorder in a public setting unless their own family
happened to be affected by the disorder. If the family was affected by autism they often lived in a
21
life of shame and denial about their autistic child. Typically, these children were institutionalized
and not included in family life or society (Covey, 1998, p. 89).
For much of the 1960s and 1970s autism was known as novel and exotic condition, little
known in the world of medicine let alone to the general public (Langan, 2011). Perceptions about
autism began to change in the 1970s with the advent of autism awareness and advocacy groups
that provided favorable messaging and public awareness campaigns about autism (Caurso,
2010). Specifically, the public perceptions about autism began to change when Rimland (1964)
contended that autism was a neurological disorder and not caused by ‘bad parenting’ (p. 34). His
contentions about autism became widely accepted and he later founded the National Society for
Autistic Children. This advocacy organization launched a public awareness campaign against the
notion that ‘refrigerator mothers’ caused autism. It was at the National Society for Autistic
Children’s inaugural meeting in 1969 meeting that Kanner finally recanted his notion that
“refrigerator mothers” caused autism (Feinstein, 2010).
Rimland’s advocacy work and his publications about autism as a neurological disorder
began to change the way some health professionals thought about autism in the 1970s and 1980s.
His organization later became the Autism Research Institute in 1967 and is the nation’s largest
autism advocacy and research center to date (Caurso, 2010). During the 1970s the Disabilities
Act, signed by President Gerald Ford, also helped dispel negative rhetoric associated with autism
and provided persons with disabilities – including autism – the opportunity to receive public
education in the least restrictive environment. This provided an opportunity for the general
public, educators and other professionals to interact with autistic children more meaningfully and
provided a viable alternative to institutionalization (Feinstein, 2010). The efforts of Rimland and
22
the passage of the Disabilities Act – later known as IDEA – began a shift in public perceptions
about autism.
The efforts from many autism advocacy groups, during the last forty years, have made
great strides to build awareness about autism. Advocacy groups have communicated messages
about inclusion in society of those with the disorder and explanations of what the disorder entails
that and others have changed public opinion. These autism advocacy groups and parents of
autistic children also worked at conveying positive messages about autistic people to others. This
rhetorical effort, in turn, changed the rhetoric about autism disseminated by the mainstream
media (Langan, 2011). Autistic children not only were more widely accepted within schools,
they were they were portrayed in a number of dramatic films, television series and made-for-TV
documentaries. Specifically, the American Broadcasting Company released a television series
titled “Parenthood” and the Public Broadcasting System released a television series and made-
for-TV documentary titled “Refrigerator Moms,” portraying families dealing with a child on the
autism spectrum (National Broadcasting Corporation, 2012 & Public Broadcasting System,
2006). Hacking (2009) found, these media depictions further increased autism awareness,
interest, and understanding of the disorder and acceptance of those afflicted with it (p. 124).
Within the last twenty years, there had been a significant increase in the number of well-
known autism advocacy groups and the size of the audiences they collectively reach. For
example, there are over twenty widely known advocacy groups in the United States and
countless other less known organizations (Autism Speaks, 2013). Some of the prominent groups
are Autism Speaks, Talking about a Cure for Autism (TACA), National Autism Society, Autism
Society of America, and the Autism National Committee. Each group holds a unique message
about autism awareness, but work to provide positive messaging about autism to keep public
23
perceptions favorable. McDonald, Pace, & Blue (2012) explained the effects of these persuasive
efforts, “Information regarding autism and autism intervention is readily available through
multiple media sources (i.e., newspapers, television, publications, film, Internet blogs), providing
novel ideas and approaches for a very receptive audience” (p. 293). These multiple media
sources allowed advocacy groups and parents of autistic children to begin to mobilize and send
messages in a variety of ways. Specifically, with the advent of digital media technologies in the
last ten years, there has been an increased rate of interaction with various communities online
(Qualman, 2009). Social media provides advocacy groups with the ability to instantly connect
with their followers. This allows for unprecedented access to a community to share news, entice
support for a cause or to fundraise (Qualman, 2009, p. 245). Historical misperceptions about
autism considerably disappeared as a result of a multimedia approach to message dissemination.
However, this multi-group, multi-media effort also created a conundrum because the
public began to receive multiple messages about autism that conflicted with each other. Hacking
(2009) stated, “Autism is a highly contested field, and there are many collectives with quite
distinct agendas” (44). For example, Autism Speaks supports funding research and looking for
the cause of autism, whereas Generation Rescue is dedicated to building awareness about
biomedical approaches to cure autism and TACA is devoted to providing support for parents and
caretakers of autistic individuals. Regardless, the autism advocacy group movement, especially
through its use of media to promote the cause, provided opportunities for public perceptions to
change (Feinstein, 2010). Kopetz & Endowed (2012) contend that the ability to communicate
through various media is the primary reason for the success of social movements such as autism
(p.199). These media-facilitated public perceptions about autism also can influence family
identity in families affected by autism and the communication that takes place in that setting.
24
Public perceptions about autism have varied since Kanner’s first publication about autism
in 1943, and while there are a number of autism advocacy organizations working to build
awareness of autism in America approximately 55% of Americans admit they have awareness
about autism, but do not have knowledge about what is autism (NAAR, 2007). Specifically,
knowledge was defined in the study as understanding key characteristics of the disorder and how
impairments found in the disorder influence affected individuals. The NAAR (2007) study also
reported that 87% of Americans feel that autism is a serious problem and learned about autism
from an advocacy group (p. 7). Messages from advocacy groups are helping people that are not
affected by autism learn about the disorder. Public knowledge about autism is still lacking
according to the NAAR study. Lack of public knowledge about autism may influence how
families deal with autism. This study considers this contention in research question three, by
examining how communication from outside the family influences the construction of family
identity.
Neurodiversity
This section includes literature about the desire for societal inclusion of autistic persons
as persons and not ‘autistic.’ The literature demonstrates the importance of inclusion and
acceptance of all people regardless of ability as an important marker towards identity
construction within the family. Neurodiversity is a term used to describe human brains as
biological entities. The term seems to appreciate the uniqueness of individual brains. Armstrong
(2011) contended that neurodiversity supported that people should not be labeled disabled or
disordered, and should be accepted for who they are (p. 134). Each person has a unique
neurological make-up. Bauminger, Solomon, Avierzer, Heung, Brown & Rogers (2008) stated,
“I encountered the word neurodiversity, and it just sang to me. I thought, what a beautiful way to
25
frame autism. It encompasses the idea that God has many different ways to build a brain” (p.
1215). Neurodiversity is a term also often used in the autism community to encourage
acceptance of autistic individuals and to understand that autism is a way of being and not an
illness, disability or preventable condition. Just as a deaf person would not be asked to try to
hear, according to neurodiversity activists, autistic people should not have expectations to
conform to the social mannerisms and perceptions deemed important in a culture generally
(Sinclair, 1993).
Neurodiversity began as a movement by autistic individuals and their families, as well as
advocates for autism to change the way they were viewed in the public. Specifically, autistics
desired the public view them as individuals and not as disabled or disordered (Armstrong, 2011).
Judy Singer and Harvey Blume, who were instrumental in beginning the movement, coined the
phrase, neurodiversity, to help bring the acceptance of autistic individuals (Solomon, 2008).
Singer wanted the public to understand that autistics are not disabled but different and society
should understand them from a diverse approach. The negative implications of viewing an
autistic person as disordered or disabled as a call to not mourn for people affected by autism, but
rather embrace them (p. 1215). Sinclair (1993) explained that autism is not an appendage,
something a person has, or a ‘shell’ in which they are trapped. Specifically, he stated, there is no
normal child hidden behind the autism, it is a way of being. Autism is pervasive. It colors every
experience, every sensation, perception, thought, emotion, and encounter, every aspect of
existence. It is not possible to separate the autism from the person. If this were possible, the
person you would have left would not be the same person you started with (5).
Therefore, the neurodiversity movement is an effort to move beyond mere acceptance
autistic individuals, but rather to encourage an understanding that autism is a part of a person.
26
Previous studies have demonstrated that when a child is labeled in some way, automatically
certain public perceptions are assumed about the child (MacLeod, Lewis & Roberston, 2013).
These perceptions of a child may perpetuate negative or positive implications of a particular
disorder or disability. Cettina (2012) explained, “But once a kid is labeled, parents accept that
something’s ‘wrong’ with her, the child feels ‘broken,’ and families tend to turn too quickly to
meds” (82). Neurodiversity has fought against this ‘broken’ feeling or labeling of people since
the inception of the word in 1999 (Solomon, 2008). Neurodiversity has sought to remove labels
of autistic people and to gain acceptance of them from a diversity perspective in society. In this
study of family communication and identify involving autistic children, this perspective plays a
part because it may influence the perceptions families have about their children with autism and
how they communicate about the disorder to those within and outside of the family.
Stress and Autism
This section explores the effects of stress on caretakers of autistic people, specifically
parents, and discusses the implications of stress on intimate relationships of parents of autistic
children, as well as families with a family member affected with autism. The influence of stress
on the family can affect family communication (Manning & Wainwright, 2011). Stress is the
body’s natural reaction to threatening situations. It affects everyone and is experienced at least
once in a person’s life (Ehrlich, 2012).
Stress profoundly influences parents and caretakers of autistic people (Ehrlich, 2012). In
light of this study, it is important to examine scholarship about stress and caring for a person
with autism. For parents of a child with autism, the uncertainty surrounding the initial diagnosis
is combined with great emotional distress when trying to cope with not only the news but also
the need to adjust family life accordingly. (Mulligan, Steel, MacCulloch & Nicholas, 2010, p.
27
114). The influence of stress related to autism may be significant in the construction of family
identity and characterize family communication associated with this. It can be especially extreme
after the initial diagnosis of a family member. The stress induced by initial and ongoing autism
diagnoses in the family is typically associated with the ambiguity of the disorder and fear of the
unknown (Avdi, Griffin & Brough, 2000).
Stress related to traumatic experiences, like being told one has an autistic child or dealing
with the many special needs of one, often leads to chronic stress and has a negative physical
influence on the body (Keenan Dillenburger, Doherty, Byrne & Gallagher, 2010). Chronic stress
is taxing on intimate relationships generally. It can be specifically characteristic in the lives of
spouses dealing with their child’s autism diagnosis and prognosis (Ehrlich, 2012). This may have
a profound influence on a family with an autistic child and construction of their identity.
It was reported that mothers experienced greater stress immediately following the autism
diagnosis period than fathers. This stress was reported to be equivalent to post-traumatic stress
syndrome for many mothers (Seltzer, Greenberg, Jinkuk, Smith, Almedia, Coe & Stawski,
2010). Flippin & Crais (2011) explained fathers are significantly underrepresented in autism
research, and as participants in therapeutic service for their autistic children. Typically, mothers
assume the role as primary caretaker for autistic children and are the primary participants in
therapeutic services and management of said services. This may lead to increased stress between
parents of an autistic child (p. 25).
Many scholars have found that stress can influence family dynamics greatly and create a
toxic environment for interpersonal communication (Whitson, Bernard & Kaufman, 2015, &
Sheidow, Henry, Rolan & Strachan, 2014). Maternal stress related to the experience of caring for
a person with autism commonly has been found (Sheidow et. al, 2014). In addition, Sheidow et.
28
al, (2014) has found that lack of parental involvement in therapeutic services for autistic children
is a result of the onset of stress on parents caused by the therapeutic setting (p. 256). However,
scholarly studies that have examined the characteristics and effects of therapeutically induced
stress on family communication and family identity have not yet been explored.
Researchers have speculated, however, that lack of paternal involvement in therapeutic
services for autistic children is one factor of marital stress for couples with an autistic child
(Flippin & Crais, 2011). Deficiencies in communication and social interaction from the child
with autism were reported as a core concern of parents of autistic children and a primary area for
marital stress (Davis & Carter, 2008). Martial stress, in general, is the accumulation of
difficulties in a marriage and the lack of communication between spouses (Shatyermman, 2013).
In fact, Hall & Graff (2010) found marital stress was one of the highest reported experiences
between couples with an autistic child (p. 200). The news of an autism diagnosis is traumatic and
life changing for many parents and depending on how partners within a relationship handle the
news, this may lead to increased stress in the relationship. While past scholarship demonstrates
marital stress is typically present after the diagnosis of a couples’ child with autism, again what
is missing is studies dealing with the effects of stress on the family with an autistic child as a
whole. Every person copes and adjusts to traumatic news differently. How individuals cope with
traumatic news within a relationship can be a source stress if partners reacted differently to the
traumatic news (Twoy, Conolly, & Novak, 2007).
Families also experience normative stress – stress that is related to typical family
behavior and interaction. In the majority of families that experience normative stress, the family
communicative process is not disrupted. But when families experience non-normative stress –
stress that is induced through non-normative situations in a family – families must work together
29
to adapt and remain cohesive during the periods of non-normative stress (Olson & McCubbin,
1982). Hall & Graff (2010), Findler (2014), and Whitson et. al (2015) determined to raise a child
with a developmental or intellectual disability caused non-normative stress in the family setting
(p. 206, p. 36, p. 1142). Communication allows for the continual adaptation to situations and
cohesion in families. It also assists in the creation, maintenance, and adaptation of family identity
(Olson & McCubbin, 1982). Friction and disruption in the family can occur during the induction
of non-normative stress among family members. Non-normative stress typically consists of a
situation that disrupts the typical flow of communication and interaction in a family and
influences the family’s quality of life (Pearce, 1976). Olson & McCubbin (1982) stated the
family’s adaptability to non-normative stressors is indicative of the ability of marital/family
systems to change its familial norms to respond to a situation, which, in turn, has an influence on
family identity (p. 42).
Stress had an influence on family communication and identity. However, there is not
much literature about family stress and communication related to health. There is a significant
void in scholarship that examines the relationship between stress and communication, and the
role stress plays in the communicative process within the family. As discussed previously, it has
been discovered that mothers of autistic children experience a unique form of stress and this can
have an effect on marriages and other intimate relationships when a child had been diagnosed as
autistic (Hall & Graff, 2010, Findler, 2014, & Whitson et. al, 2015). This study will further
examine stress in stress in the context of marriages and families with autistic children but will
also consider communicative issues related to such stress and its influence on the families and
the way they view themselves.
30
Information needs and coping
This section considers the connection between information needs about autism and its
relation to coping and construction family identity. It provides an examination of literature and
scholarship that is related to the area of information needs, in particular, of parents or caretakers
of people with autism while considering how families cope with an autism diagnosis of a family
member.
Information needs. Information gathering is not a new task. Humans have gathered
information to cope with their environment and learn for thousands of years. When dealing with
a traumatic situation like an autism diagnosis of a child it is natural to seek information to learn
about how the situation will have an influence on the family (Romo, 2015). Hall & Graff (2010)
explained having an autistic child could have negative influences on the family system,
especially between the mother and father of an autistic child (p.192). In order to cope with an
autism diagnosis of their child, married couples must make adjustments to their daily lives and
long-term plans that they had for their family (Neely & Amatea et. al, 2012). Hall & Graff
(2010) stated parents of autistic children sought out information about autism to relieve stress,
cope with the diagnosis and for resources and support for their autistic child (p.193). There is a
need for families to gather information as they make sense of their child’s autism diagnosis
(Romo, 2015). The desire to seek out information seems to be part of a coping and sense making
process as the family constructs a new identity after their child’s diagnosis of autism.
Families with an autistic child desire not only to understand how autism will influence
their family, but are anxious to know the long-term prognoses for their affected child. It is
important to understand and know the cause of the disorder for parents to cope and adjust to their
child’s diagnosis of autism (Offit, 2010). Twoy et. al (2007) stated that nurse practitioners
31
needed to educate parents of autistic children on sound therapy approaches to help boost the
confidence of parents as they cope and adjust to the diagnosis of their child (p. 251).
Individuals are motivated to seek information to satisfy a need and they will search for
information until “satisficing” has occurred. Satisficing is defined as, “An information
competency whereby individuals assess how much information is good enough to satisfy their
information need” (Prahba, Connaway, Olszewski & Jenkins, 2007). Satisficing occurs amongst
parents of children that have autism until they are satisfied with the amount and quality of
information they have attained. Prahba et. al (2007) explained that, “When individuals satisfice,
they compare the benefits of obtaining ‘more information’ against the additional cost and effort
of continuing to search for information” (p.4). Essentially, Prabha et. al (2007) stated, people
will look until they find information that is good enough to make them feel good about what they
found (p.4). In the case of an autism diagnosis in the family, information gathering within the
family and outside the family will take place until the entire family is content with their
newfound information.
Satisficing information needs to make sense of autism. Once parents receive news of
an autism diagnosis, they are forced to make sense of their situation. Many parents attempt to sift
through mounds of information to satisfice information needs (Offit, 2010). Dervin (1983)
explained that satisficing information needs is an attempt to make sense of a situation (p. 45).
Sense-making is a communicative behavior where information seeking is central to make sense
of a situation. Specifically, people make sense of a situation beginning with the assumption that
reality is neither complete nor constant but rather filled with fundamental and pervasive
discontinuities or gaps (Manusov & Kelly, 2015). Sense-making considers the individual
construction and reconstruction of meaning based on information and experiences (Weber,
32
Thomas & Stephens, 2015). Manusov & Keely (2015) found relational messages, emotional
expression, and social support as important factors in the making sense of traumatic
communication at the end-of-life (p. 387). Similarly, families made sense of traumatic end-of-
life news collectively and through recalling family stories, in addition to satisficing information
needs (p. 400).
Families are important in the sense-making process, as people tell their stories in ways
that reflect their lives as they have come to understand them (Koenig Kellas & Kranstuber
Horstman, 2015). Families dealing with an autism diagnosis seek information to make sense of
their child’s autism diagnosis (Neely et. al, 2012). Some will observe others; construct pictures
of how they perceive their reality should appear and try to fit that picture into their new reality
after the autism diagnosis (Preece, 2014). Sense-making becomes part of the survivors’ stories
about their loved ones and their relationship that they can tell to others (Manusov & Keely,
2015). Sense-making identifies cognitive gaps and contends people will seek out information to
fill these gaps to reduces dissonance (Pratt, 2000). This individual construction process is
utilized when someone is faced with a life-changing situation. An autism diagnosis in the family
is a profound event within the family that requires the use of information needs to make sense of
the situation.
Coping with autism. In order for parents to adequately cope with their child’s autism,
they must have information and understand that information to help them make informed
decisions about treatment methods for their children (Neely, Amatea, Echevarria-Doan &
Tannen, 2012). Health professionals often have provided minimal information to parents about
autism and their autistic child’s prognosis to avoid giving false hope and because the etiology of
autism is unknown (Feinstein, 2010). This adds to parents’ difficulties and levels of stress in
33
coping with their child children’s disorders (Gray, 2006). This can be reduced with sufficient
information and understanding regarding theories about the etiology of autism and research
concerning available therapies and services for their children.
As parents cope with and adjust to the diagnosis of their autistic child, stress is likely to
be reduced (Twoy et. al, 2007). When stress is reduced parents feel better about their child’s
diagnosis and more satisfied about the information they find about autism. Parents receive this
information about autism from media outlets, books, movies, autism advocacy organizations,
social media and online communities, blogs and the Internet (Feinstein, 2010). The news of a
diagnosis is traumatic and creates unique feelings in all families affected by autism. However,
there is a commonality in the notion that most families seek information about autism as a way to
cope and understand better how the disorder will have an influence on their family (Gray, 2006).
How this influences communication within families with autistic children in other ways and
influences their family identity needs to be further explored.
Family identities and autism
The idea of “being a family” is a collective venture that is central to lived experiences
within the framework of society, however, this idea is called into question because of constantly
changing societal norms of family and when the influence of an individualistic society begins to
prevail (Finch and Mason 2000; Gerstel, Clawson, and Zussman 2002; Giddens 1992;
McGoldrick and Giordano 1996; Morgan 1996; Smart and Neale 1999). The goal of this study
was to consider how families construct a collective identity after the news of an autism diagnosis
in their family. Much of the literature deals with scholarship that considers individual identity
management. How it relates to the family deals with cultural, societal and relational factors that
34
influence identity and the construction of individual identities (Pei-Wen, 2008, Nagy & Theiss,
2013 & Cupach, Tadasu, & Imahori, 1993).
This section of literature examines existing scholarship about family identity within the
scope of personal, social, cultural identity, as well as family identity in the wake of a family
crisis. This section will also provide an operational definition of family identity to consider
within the framework of this study.
Identities are established, maintained and changed within a relationship through
communication (Imahori & Cupach, 2005). Additionally, it is argued that families are discourse
dependent and family identity is based on communication both within and outside the family
(Galvin, 2006). Families construct and manage their identity as a family through everyday
communication with each other, but always with an awareness of the potential for public
evaluation (Huisman, 2014). Family identity is constructed through the communication that
manages contradictions between ability and disability. This is especially the case in families
dealing with the diagnosis of an “invisible” disability (Canary, 2008 & 2012). While family
identity is constructed internally among family members, the perceptions of outsiders based on
observable family behavior and communication can contribute greatly to its development (Reiss,
1981). Epp & Price (2008) mentioned families build their notions of collective identity in
relation to a “familial gaze,” referring to conventions or dominant ideologies of family that they
inherit or see within society (p. 52). Essentially, family identity is the family’s subjective sense
of its own continuity over time, its present situation, and its character. Family identity also is the
gestalt of qualities and attributes that make it a particular family and that differentiate it from
other families (Bennett, Wolin & McAvity, 1988).
35
Family identity is considered a social construct of their reality (Gergen, 2000 & Reiss,
1981). Many families hold a sense of individualism and autonomy within society and identity is
constructed and maintained through social interaction and interpersonal communication (Bellah,
Madsen, Sullivan, Swidler & Tipton, 1985). Identity is not necessarily an individual pursuit, but
often something to which one belongs. It involves collectively managed thought and ongoing
interaction with a group of members (Mokros, 2003). Families construct identity through their
own understanding of their internal and external place within society and the family (Galvin,
2006, Reiss, 1981, Blum-Kulka, 1997).
Family storytelling social constructs collective family identity (Huisman, 2014). Family
narratives can preserve ethnic, relational and social history of the family; therefore, stories are a
means of understanding and constructing family identities (Langellier & Peterson, 2004).
Huisman (2014) posited family identity is not static or permanent, but something that evolves as
family members jointly adapt and construct their stories of the group. Specifically, family
identity is an internal relational process, as well as an external process wherein family members
construct their identity within the contextual cultural expectations in which the family associates
with (p. 145). However, families experienced social abstraction, wherein the midst of a family
crises typical cultural assumptions of the family are abandoned until the family has recovered
from the crises (Reiss, 1981).
The traumatic nature of the autism diagnosis in the family is disruptive to the attributes
and qualities that make up a particular family. Parents of autistic children can seek a new identity
and social group to associate with since previous identities and social groups are foreign to their
new family norms after an autism diagnosis (Cuaraso, 2012). As spouses sift through mounds of
information about autism and try to adjust to new stressors in their family, they reportedly
36
assume new identities since the dynamic of their relationship has changed (Skilos & Kerns,
2007). The news of child’s autism diagnosis is traumatic because parents no longer can identify
with the typical path of development for their child. Prior familial norms are abandoned as they
try to make sense of a new situation. (McCarthy, 2009 & Reiss, 1981).
Parents with an autistic child must seek a new identity for themselves and their family to
maintain a meaningful role in society (Caruso, 2012). The processing of a child’s autism
diagnosis within a marriage and family may affect the familial culture and relational patterns
within the family. Spouses must work together to establish a new family identity and learn
cultural norms in the autism community that are new to them (Shtayermman, 2013). In other
words, families experiencing an autism diagnosis of a child go through a period of reframing
(Swinth, Tomlin & Luthman, 2015). Reframing family involves restructuring their familial
expectations for parent-child interactions, family routines, and the structure of their home to
adapt to an autism diagnosis (Altiere & Von Kluge, 2009 & DeGrace, 2004). For example, in
one study families fought to resist stigma experienced by their teens who were diagnosed with
Asperger’s Syndrome, a form of autism. This led reframing their family identity (Farrugia,
2009).
Social abstraction, as described by Reiss (1981), is taken into consideration within this
study, as an autism diagnosis of a child is a profound and life-changing event for the family and
may influence how they construct a new identity. Also, a need exists to further explore the
influence of communication on the identities of children with a disability and their families
(Kelly, 2005). Discussing disability within the family setting is important for moving better
understanding the family system in the wake of traumatic news (Canary, 2012). In the context of
this study, family identity is operationally defined as a dynamic communicative experience
37
involving the creation and maintenance of a collectively shared sense of the meaning of who the
group is amongst themselves and within society (Huisman, 2014 & Langellier & Peterson,
2006).
Quality of life and autism
This section considers the implications of identity and autism, as well as cultural factors
that influence the quality of life. It explores social stigma and the influence this has on family
identity, socialization, and quality of living with a person in the family that has autism. The
section also considers the implications of the quality of life for persons with autism, families
affected by autism and how societal perceptions of autism may influence family identity.
Manning, Wainwright and Bennett (2011) stated societal perceptions about autism
created challenges. One of these is that families with a child with autism are more likely to
become socially isolated from other families with the same-aged children. This isolation can lead
to lower self-esteem and increased depression in parents of children with autism (p. 320). Autism
is a disorder hidden behind ‘normal’ appearance providing an extra layer of stressors when
autism behaviors are exhibited in social settings. This results in unsolicited parenting advice,
staring, and alienation from peers or society (Randall & Parker, 1999). The consequences of this
can be greater family stress and can undermine the quality of life of both the autistic child and
their families. Among disabilities affecting children, autism is in many ways unique. According
to Manning, Wainwright & Bennett (2011), “Autism has a substantial influence on family life
presenting challenges that are different from other child disabilities,” (p.253). Parents of children
with autism are willing to try anything to ‘cure’ their child’s condition and improve the quality of
life (Offit, 2010).
38
As presented in the ‘public perceptions and autism’ section in this literature review,
society associated autism with ‘refrigerator mothers’ until the l970s. Refrigerator mothers were
thought to have caused their child’s autism due to an inability to properly show their child
affection in the first year of life (Feinstein, 2010). While this notion was dispelled and the rise of
advocacy groups improved public perceptions of autism, it still affected the way the public
viewed autism for nearly thirty years. In addition, children with autism often were
institutionalized until the 1970s, making their integration into society difficult (Caurso, 2010).
Parents with autistic children still experience social stigma because of the invisible nature of the
disorder and because of perceived ideas about autism that are rooted in historical fallacies. They
and their children’s quality of life can be inhibited because of this.
Social stigma and isolation are not limited to family life – autistic persons also experience
it, too. Feinstein (2010) mentioned that since the passing of the IDEA act over 30 years ago; the
quality of life of autistic children has improved with their inclusion in public schools (p. 87).
Caurso (2010) also concludes that more inclusion of autistic persons in society has improved
their standard of life considerably (p. 478). However, Randall and Parker (1999) found that it is
difficult for autistic persons to function in society, again because autism is often masked behind
‘normal’ appearances and there also is not a unifying physical feature that autistic children or
adults display. Also, it was determined this affected the family of an autistic child’s quality of
life (p. 235).
Culture and quality of life. Culture helps us make sense of what we know and frames
our worldview (Romo, 2015). It is a dynamic yet stable set of goals, beliefs, and attitudes shared
by a group of people, (Ravindran & Myers, 2012). Communities and societal norms play a vital
role in the influence of and, often, shape culture. Communication shapes culture and aides in our
39
attempts to construct, maintain, repair and transform identity (Carey, 1985). Cultural norms and
values directly influence the quality of life of families and members of specific cultures
(Ravindran & Myers, 2012). Specifically, culture plays a role in how families process the
diagnosis and the acceptance of the child’s autism diagnosis. Cultural views about disability and
acceptance of disability in the family can influence the family’s perception of autism and their
own identity (Ennis-Cole, Durodoye & Harris, 2013). Parents of typically developed children are
a part of a different parental culture than parents of children with autism (Caurso, 2010).
Since children are diagnosed with autism as toddlers, parents of autistic children
culturally identified with parents of typically developed children prior to the diagnosis. When
they found out about their child’s autism, they lost that identity. New identity construction and
cultural association with the disorder typically happens when parents reach the level of
‘acceptance’ of their child’s autism, but it is solidified when parents learn to appreciate the
diagnosis of their child (Poyadue, 1993). Furthermore, parents of autistic children must transition
through four stages to arrive at a ‘new normal’ to accept the autism diagnosis of their child
(Romo, 2015). These include diagnosis, frustration, become informed, and new normal. The
diagnosis stage is where a parent begins to realize something is wrong with their child and they
desire to seek help. The frustration stage is a chronic stage of dissatisfaction with unfilled needs
or unresolved problems largely because parents are not seeing results they desired for their
children or they are struggling to get their child help. Becoming informed deals with a shift in a
couples’ journey with autism where they begin to advocate for their autistic child and see
breakthroughs in services or in their child’s prognoses. Lastly, they arrive at a new normal where
they have adapted to the autism diagnosis of their child and, generally, feel positive about their
place in life (p. 75-79).
40
Social stigma is the extreme discontent with a person or group based solely on social
characteristics that are perceived significantly different from other members of society. This
stigma may be affixed to persons, by the greater societies, who differ significantly from the
society’s cultural norms. As a result, society has fought to institutionalize and hide the disabled
population from society for quite a while (Covey, 1998). This led to years of poor quality of life
among affected persons and their families because of social isolation and little public
understanding of those affected by various disabilities and disorders (p. 267). While past
research on the quality of life, culture and social stigma around autism provides some insight
about implications this has had on the families of autistic children, scholarly studies that examine
communication as it relates to culture, autism and family identity are needed.
Friendship, Bullying, and Autism
“Friendship is a significant social experience for children, enabling them to develop and
practice fundamental prosocial behaviors, such as mutual caring, emotional support, empathy,
liking, intimacy, and sharing” (Bauminger & Shulman, 2003). Daniel & Billingsley (2010)
reported that children with autism thought the friendship making process was difficult and
parental support was a key factor in the development and maintenance of peer relationships for
autistic children. (p. 220). Mothers of children with autism reported that they sought peers that
had similar interests and were willing to go on ‘play-dates’ and outings with their children
(Hartley et. al, 2010). Friendships are maintained through the mutual enjoyment of activities and
interests, social interactions and communication (Bauminger & Shulman, 2003).
Children with autism have limited abilities to make appropriate social interactions and
communicate with others. This can create difficulties in maintaining friendships with peers.
Davis & Carter (2008) explained that children with autism are often rejected by their peers and
41
are often excluded in social situations settings. The diagnosis of autism was consistent with great
social rejection (p. 1278-1275). In certain situations, children can break through the
communication and socialization barriers experienced by the disorder of autism and develop
mutually beneficial friendships between peers. If friendships between children with autism and
typical-developed children are developed, there is extra friendship work required to maintain the
friendship (Rossetti, 2011). Friendship work was described as maintenance within the friendship
beyond the scope typical friendship maintenance in typically developed children. For example,
modes of communication like difficulty initiating or maintain conversations or significant social
anxiety represent work that is beyond the scope of ‘typical’ friendships (Rossetti, 2011, p. 27).
However, friendships between autistic children and typically developed children that did develop
were perceived as successful (p. 29).
Bauminger, et. al (2008) reported high-functioning autistic children, according to their
mothers, were more responsive in social interactions and had higher receptive and expressive
language levels after increased peer interaction and friendships (p.1211). Friendship
development in the elementary school years led to higher quality friendships in adolescence.
Autistic children that failed to establish strong friendships in elementary school reported high
feelings of loneliness and more peer rejection than children with autism that made strong
friendships in elementary school (Lasgaard, Nielsen, Eriksen & Goossens, 2010). The ability of
an autistic child to make and maintain independent friendships could have a significant influence
on the family and their identity. Social stigma from peer groups also can influence the
socialization of the entire family and shape how they construct identity post-diagnosis.
Bullying was experienced by 28% of children between grades 6-12 in 2011 and 46% of
adolescents with autism, according to one study (CDC, 2011 & Roekel, Scholte & Didden 2010).
42
Roekel et. al, (2010) explained the bullying of autistic children existed in both special education
classrooms and general education classrooms, (p.63). Bullying was widely defined as a
systematic abuse of power (Humphreys & Symes, 2010, Smith, 2004 and Roekel et. al, 2009).
Cappadocia, Weise & Pepler (2012) said that autistic children experienced verbal and social
victimization among peers when bullied (p.271). Verbal and social victimization was described
as peer social rejection and verbal abuse (Rossetti, 2011). Teachers, educational support staff or
parents reported most incidents of bullying that took place in a school setting (Roekel et. al,
2009). While bullying affects all children and has alarming results on the well-being of the entire
family, families with autism experience this to a greater degree (p.66). Bullying can have a great
effect on an autistic child’s personal identity and self- worth. It also can affect the entire family,
how they cope with the disorder, and what and how they communicate as a result of it. It also
can affect their family identity.
Family Communication and Narratives
Family communication. Family groups, whether legal or fictive, involve immediate and
extended family. Immediate family consists of an immediate partner and/or a child, whereas the
extended family extends beyond the immediate family connection to form a family group (Segrin
& Flora, 2011). This might include cousins, aunts, spouses or friends whom with some share a
close connection to. Within these family units or systems, communication is ritualistic – focused
on creating a shared belief. James W. Carey defined ritualistic communication as directed not
toward the extension of messages in space, but toward the maintenance of society in time; not
the act of imparting information but the representation of shared beliefs. The ritual view of
communication – typically, experienced in families – is the sacred ceremony that draws persons
together in fellowship and commonality (Carey, 1985).
43
Families – immediate or extended – develop mini-cultures where each culture has their
own symbols and members of the mini-culture are the only individuals that understand the
symbols as a form of commonality (Whitchurch & Dickson, 1999). Communication defines the
family’s present reality and constructs family relationships. Family identity is constantly
renegotiated as their reality changes into the future (Segrin & Flora, 2012). Difficult
conversations with a family member can be stressful, and possibly threaten family identity A
difficult family conversation consists of a topic, like health situations or child’s behavior issues,
that entices strong emotion or uncertainty by another family member (Russell, Keating,
Cornacchione & Smith, 2012). Keating, Russell, Cornacchione (2013) found most family
members predicted negative consequences from their family before communicating having a
difficult conversation with a family member, and this anticipated consequence caused stress
(p.160). It was also determined that when you place the family in a high-stress environment
where family members do not know how to respond it could disrupt the family unit and
potentially their identity (p. 161). For example, a teenage family member communicating that
they are sexually active or child’s undesired behaviors
Families are social constructs and rely on each other to socially create meaning and
reality from what they experience and observe (Leeds-Hurwitz, 2005). Jorgenson (2004) stated,
“Family research undertaken from the constructivist perspective…is directed toward elucidating
the shared understandings that form the basis for social interaction in everyday life,” (p. 515).
Specifically, we develop a concept, and then figure out ways to make it concrete. If we stop
displaying a concept, like family identity, it will dissipate, dissolve and cease to exist over time
(Leeds-Hurwitz, 2005). Families are also pressured by social norms outside the family to
maintain a certain identity. For example, an autism diagnosis in the family may hinder existing
44
family identities, because of public scrutiny and stigmas associated with raising an autistic child
(Cridland, Jones, Magee & Caputi, 2014).
Social pressures are also evident in other areas of family communication. For example,
Yadav & Patil (2014) determined families in India felt extreme pressure to have small nuclear
families, because of rapidly changing social norms in India and the distortion of social
correctness that smaller families are perceived as having lesser family conflicts (p. 429). In
families dealing with an autism diagnosis isolation was experienced in affected families that
resulted in a loss of family identity (Preece, 2014). Specifically, Preece (2014) found a recurring
theme of loss of friendships that existed between parents of autistic children and other adults
prior to the diagnosis of autism in their family, as well as isolation from extended family
members (p. 83). Most of the friendships parents held with other adults consisted of other parents
with autistic children, as it was easier for these parents to relate to each other after the diagnosis
of their child (p. 84).
Narratives. The concept of family narratives as a mechanism of communication within
the family is not new. Scholars have extensively conducted narrative research across many
disciplines, using a variety of theoretical approaches and methods. This study will focus on the
family narratives about their experiences with their autism and their autistic child, including the
family communication experiences they have had and how their family identities have been
constructed or reconstructed as a result.
Families use stories as a resource through which family members create shared realities
and identities (Jorgenson & Bochner, 2004). From the narrative exploration of families, their
realities and identity construction is found (Harter, 2012). People are storytelling beings, and
everyone has a story to tell – families included. Our life stories connect us to our roots, give us
45
direction and validate our experiences (Atkinson, 2005). Historically, social groups and families
have communicated through stories. They have used narratives to pass down traditions, social
norms and educate other family members in pure oral cultures (Ong, 1982). Narratives are social
phenomena that describe experiences and feelings, particularly within a family, about something
that has profoundly affected them. In the area of health communication, stories of coping
strategies circle around the ailment and their experiences with a health ailment affects their story
of the health issue (Harter, 2012). This is not any different with autism. The ‘autism story’
involves the meaning and experiences each family member contributes to it. Each family
member brings their own story about autism as they cope with a family member’s autism
diagnosis. In turn, their story about autism is shaped by others in the family and by people, media
and other experiences outside the family. So each family has their own autism story they have
constructed and a family identity that reflects it.
Harter (2012) describes experiences with a traumatic health condition as one of shared
vulnerability, a relational process constructed within and constrained by the matrix of
assumptions, expectations, and values common to cultural life (p. 4). Preece (2014) also used
parental narratives about autism to identify stressors experienced by families with an autistic
child (p.81). Similarly, narrative studies were used to gain insight into the perspectives of
spouses that lived with their disabled adult sibling-in-law (Vanhoutteghem, VanHoeve, D’Haene
& Soyez, 2014). Narratives can shape what family members and families, as a whole perceive,
about what they communicate and behave. It is the goal of this study to examine the construction
of family identity after receiving an autism diagnosis of a family member. The next section will
provide relevance of the literature to the specific research questions in this study.
46
Research Questions
Based on the specific purpose of this study stated in chapter one and what has been
discussed in this literature review, a number of overarching research questions that were
addressed in this study are posed below:
RQ1: How do families construct their identities after the autism diagnosis of a family
member?
Public perceptions about autism that the family holds may influence how they develop a
new family identity. Specifically, Hacking (2009) mentioned messages about autism vary
significantly from various advocacy groups, media, and the government. The rhetoric from
various groups in this highly contested field can create confusion among those within and outside
the autism community (p. 46). Thus, autism rhetoric may influence how families construct their
identities after an autism diagnosis. Also, a 2007 National Alliance for Autism Research
(NAAR) study that people want more credible information about autism and that they have are
not sure where to find reliable information about the disorder from publications, media and
groups they trust (p.10). Information like this indicates that the public may be confused about
autism in general, this can influence the way a family is perceived in public and how they shape
their family identity. Additionally, Mulligan et. al (2010) determined parents with a child on the
autism spectrum experienced uncertainty about the diagnosis and that this caused great emotional
distressed that influenced their adjustment to the autism diagnosis of their child (p. 114-115).
Public perceptions and uncertainty can greatly influence how a family adjusts to a diagnosis of
autism in the family.
47
RQ2: What communication takes place among family members about autism that
influences the construction a new family identity after the autism diagnosis of a family
member?
Factors related to communication that takes place among family members about autism
are worthy of exploring within the study. Specifically, Whitson et. al (2015) and Sheidow et. al
(2014) determined that stress within the family can create a toxic environment for interpersonal
communication (p. 1148 & p. 1360). Parents of autistic children reported having high levels and
frequent stress due to the amount of care required to raise a child on the autism spectrum. It was
also determined that this chronic stress greatly influenced communication within the family
about the autistic family member (Avdi et. al, 2010, p. 245). It is important to acknowledge that
this may influence family communication about autism. Ambiguity around the autism diagnosis
of a family member can be an ongoing source of stress for family members caring for a person
with autism (Avdi et. al, 2000). McCarthy (2009) also reported that the news of a child’s autism
is traumatic because the parents no longer can identify with the typical path of development for
their child and they are forced to learn a new way of life (p. 78). Also, families develop mini-
cultures where each culture has their own symbols and rituals for communication (Whitchurch &
Dickson, 1999). Additionally, Russell et. al (2013) determined difficult family conversations can
be stressful and threaten the family’s identity (p.161). Maregtts, LeCoutuer & Croom (2006)
found grandparents of children with autism hold a strong desire to keep the family intact, as
much as possible, after the diagnosis (p.568). A grandparent’s desire to keep the family intact
after the autism diagnosis of their grandchild may influence family communication. Exploring
what families communicated about autism and how that communication may influence their
family identity can provide valuable information to the autism community.
48
RQ3: What communication outside of the family influences the construction of family
identity after a family has received an autism diagnosis of a family member?
There are numerous factors that affect quality of life after an autism diagnosis. For
example, friendship is a significant social experience for children. Children with autism have
stated that the friendship making process is difficult for them (Dainel & Billingsley, 2010). Many
friendships for autistic children require facilitation by the parents of the child with autism, which
can influence parental communication about their child’s autism to those outside the family
(Howard et. al, 2006). Specifically, Neely et. al, (2012) found many parents sought information
to adequately cope with the diagnosis. The information these parents sought helped them
communicate about autism, as well as make informed decisions about treatment for their autistic
family member (p. 213). Additionally, families experience isolation and loss of identity because
experience public scrutiny and stigmas associated with raising an autistic child (Preece, 2014).
Also, seeking information about autism helps parents reduce stress and feel better about their
child’s autism diagnosis (Twoy et. al, 2007). Ultimately, it helps parents adjust to their lives
raising a child on the spectrum (p. 260). However, there is a dearth amount of research related to
the communication families gather about autism.
RQ4: How do families communicate about autism and/or the autism diagnosis of a family
member to those outside the family?
Cultural views and acceptance of autism can influence how a family’s perception of
autism and how they construct their own identity (Ennis-Cole et. al, 2013). Caurso (2010) found
parents of typical and autistic children each subscribe to their own parental culture (p.490).
When families are forced to shift from one parental culture to the next, as in the case with an
autism diagnosis in the family, this can greatly influence the family identity and how the family
49
communicates with society (p. 492). Meyers et. al (2012) determined the ability to communicate
through various mediums has helped the autism community build awareness about autism
(p.546). However, the NAAR report found that most Americans have awareness about the
disorder, but do not have knowledge about autism (p. 7). Additionally, Caurso (2010) found
parents with a child on the autism spectrum seek a new family identity to maintain a meaningful
role in society (p. 489). Social pressures influence family communication (Preece, 2014). When
families feel social pressures it influences their actions and communication outside the family
(Yadav & Patil, 2014). Conversely, there is little research about how families communicate
outside the family to maintain their role in society. The next chapter will detail the
methodological exploration for this study and correlation of those explorations to the research
questions.
50
Chapter Three: Methodology
In this chapter, the qualitative research methodology that was used in this study is
presented. Qualitative research has been described as the pursuit of recording lived experience,
within culture or group, to share the group’s communication behavior (Van Manen, 1990). This
research perspective often involves in-depth explorations of the quality of social life in attempts
to interpret human phenomena (Clandinin, 2007). Qualitative inquiry encompasses and can
require choosing from a wide range of interconnected interpretive practices and the use of
multiple methods, or triangulation to gain an in-depth understanding of the phenomenon under
consideration (Denzin & Lincoln, 2005). This study explored the construction of family identity
after receiving an autism diagnosis of a family member. The interpretive nature of qualitative
research, particularly phenomenology, provides the best means to answer the study’s overarching
research questions that were posed at the end of chapter two. It was the goal of this study to let
families share their ‘autism stories.’ This approach yielded a better understanding of how
families adjusted to an autism diagnosis in their family and ultimately constructed a new family
identity. Additionally, each of the families’ narratives provided the opportunity to step inside
their lived experiences and gain an intimate understanding regarding the daily struggles of those
walking life with someone on the autism spectrum. This chapter, therefore, explains how data for
this study was gathered and triangulated through four phenomenological means: interviewing,
online questionnaires, and narrative inquiry, and reflexivity of parent-as-researcher.
Phenomenology
Specifically, this study employed a phenomenological approach to qualitative research.
Phenomenology is an interpretive qualitative research approach that provided in-depth
knowledge through the voices of the participants sharing their lived experiences (Patton, 2002).
51
While there are other valid types of qualitative inquiry, phenomenology considered the narratives
of the participants and conducted an analysis of the narratives to let their lived experiences
emerge from their stories (Van Manen, 1990). Particularly, phenomenological research did not
generalize data and remained true to the subjective nature of observations within qualitative
research methods (Patton, 2002). As a phenomenologist, I considered the culture and operated
through reflexivity in reporting their findings as a parent-as-researcher (Van Manen, 1990). The
study aimed at gaining a deeper understanding of the nature or meaning of the everyday
experiences for families with a family member diagnosed on the autism spectrum. A
phenomenological approach provided a particularly meaningful research framework to employ
since the study had the goal of gaining a deeper understanding of the nature of family identity
construction after an autism diagnosis of a family member.
Phenomenology is retrospective and not introspective in that it is a reflection on
experience that has already passed or been lived through (Van Manen 1990). The interpretation
is essential to our understanding of experience in phenomenology. The use of narratives in this
study allowed for an interpretation of familial experiences with an autistic child. Husserl (1980)
explained that to see the meaning or essence of a phenomenon is something everyone does
constantly in everyday life, but a reflective determination is a more difficult task in
phenomenological research (p.22). In this study, phenomenological research provided insight
into the essence of phenomenon by reflectively appropriating, or clarifying, and making explicit
the structure of meaning of the lived experience (Van Manen, 1990, p. 77).
Phenomenological research studies suggest a different way of looking at phenomenon or
reveal dimensions of meaning that had not been considered before the study (Patton, 2002). As
was discussed in the previous chapter, very little past scholarly research has dealt with the
52
communication aspect of dealing with an autism diagnosis in the family and phenomenological
studies dealing with autism generally are rare. In fact, most research about autism is rooted in
behavioral and psychological studies about family well-being or therapeutic options for those
affected by an autism diagnosis. This study examined the nature and influences of
communication in families affected by autism, as well as the communication patterns that
families used to communicate about the diagnosis within and outside the family.
Narrative Inquiry
This study also utilized narrative inquiry as a phenomenological methodology. Narrative
inquiry captured the study of experience as a story. It entailed a view of experience as a
phenomenon within qualitative research (Clandinin, 2007). This phenomenological methodology
provided a way to understand experience through collaboration between the researcher and study
participants in various social interactions (p. 20). Narrative inquiry provided a glimpse into the
conversations in relationships that influenced identity construction. For example, Walker
examined the narratives of twelve black students about growing up in South Africa. Within this
study Walker (2005) was able to examine pertinent social and historical contexts of South
African society and was able to find moments of transformation when new identities were
formed and even rejected (p. 129). This example of narrative inquiry suggested that exploring the
lived experiences shared through narratives of families who have had to adapt to autism should
bring forth new insights about how their family identities may have been reconstructed.
Narrative inquirers should attend to the sociality of the participants in the study. This
study desires to do such that. Sociality refers to the personal and social conditions experienced
by participants. Our identities are inextricably linked with our experiences within a particular
social condition or place. Communication that occurs relative to our experiences and the stories
53
we tell of these experiences may help construct our identities (Walker, 2005). Examining identity
construction, especially within the family, warranted a narrative inquiry as a type of
phenomenological research in this study. The narratives of the families that have adjusted to the
autism diagnosis of a family member provided an in-depth picture of the communication that
takes place as the family adjusted to the autism diagnosis and how this contributes to the
formation of a new family identity.
Life Story Interview
Life stories can fulfill important functions for us, and connect people to their roots,
provides direction, validation of personal experience and restores value to lives (Atkinson,
1998). The life story interview provided a practical and holistic methodological approach for the
sensitive collection of personal narratives that reveal how a specific human life is constructed
and reconstructed in representing that life as a story (p. 224). This type of narrative inquiry is
rooted in the phenomenological methodology of qualitative research and provided a multifaceted
role that seeks to bring forth voice and spirit within personal narratives in this study (Atkinson,
1998, p. 225). This approach to narrative inquiry provided the researcher with the opportunity to
step inside the personal world of the storyteller (p. 228).
Parents dealing with the adjustment of their child’s autism diagnosis want to be heard
(Caurso, 2010). This desire to communicate with the outside word provided the researcher with
the opportunity to hear and learn from the stories of those affected by the disorder. When parents
adjusting to the new role as a ‘special needs parent’ told their story it enabled them to be heard,
recognized and acknowledged by others (Atkinson, 1998). Specifically, “Stories make the
implicit explicit, the hidden seen, the unformed formed, and the confusing clear,” (p. 7). This
methodological approach allowed participants in this study to have a voice, describe what they
54
have experienced and provided a meaningful picture of how families communicate as they adjust
to the autism diagnosis of a family member. In addition, this methodological approach helped
determine how families construct a new identity after the autism diagnosis of a family member.
The life story is the essence of what has happened to a person – it is the story they choose
to tell about their lived experience (Atkinson, 1998). Life stories can focus on the entire life or a
specific period in a person’s life. In this study, this methodology focused on the entire autism
experience within the family. By examining, through life story interviews, the entire experiences
with autism in the family from initial diagnosis of the autistic child to the present, the
opportunity to gain insight as to how families construct a new identity and how they
communicate about autism was maximized.
Stories can affirm, validate and support our own experience in relation to those around
us. They enforce norms of moral order and shape the individual to the requirements of society, or
in the case of this study, within the family. Atkinson (1998) determined the life story is not the
life experience itself but is a way of organizing experience and fashioning or verifying identity. It
provided the researcher with information about social reality existing outside the story, as
described by the story. The story itself also can be examined as a social construct (p. 13).
Reflexivity
In this study, the researcher not only had a special interest in the subject of autism but
personal experience with it. As shared in chapter one, I belong to the autism community and my
family was affected through my daughter’s autism diagnosis. My association with the autism
community provided me with better access to community members. Participants were also more
comfortable during the interview process as it was easier to develop a rapport with participants
based on sharing my own experiences with autism. As participants shared their life stories with
55
autism and in the analysis of the recorded interviews, my own experience provided deeper
insight into their narratives, the communication that occurred, and family identity construction
process. However, because of my membership in this group and shared experiences, special
attention was given in the recruiting, interviewing, coding, and interpretation of results process to
avoid letting my perspective of and experiences with autism and an autistic child hinder or taint
study participants from openly sharing their own individual and family narratives about their
experiences with autism and its effect on family communication and identity within the context
of this study.
Sample and Approach
Purposeful sampling was used to select families to participate in this study. The logic and
power of purposeful sampling lie in the selection of information-rich cases for in-depth study
(Patton, 1990). This study interviewed twelve families with at least two family members from
each family. Specifically, 24 individual interviews were conducted with parents, siblings, aunts,
uncles and grandparents of autistic children. Participating families were prescreened through an
online questionnaire that was used to select the best participants to provide rich and in-depth
perspectives about their experiences with autism that were related to the research questions.
Family representation varied depending on the availability of family members in each family.
In this study, families with at least one family member diagnosed with autism were
recruited. Families that had received a formal autism diagnosis, from a licensed therapist or
psychiatrist, and were receiving therapeutic services for autism were only considered. Romo
(2015) stated that the autism diagnosis period consists of a multidisciplinary team and the
assessment process takes anywhere from six months to three years barring any difficulties (p.
93). The diagnosis process is stressful and full of uncertainty for many families (Hall & Graff,
56
2010). Since the study considered how families have adjusted to the diagnosis only families that
completed the formal diagnosis period and received a diagnosis of autism from a licensed
medical or psychiatric professional were selected.
Families that represented a variety of ages participated in the study. An effort was made
to include participants from a variety of ethnic backgrounds and geographic locations. Married
and divorced parents who had an autistic child and their families participated in the study.
Differences in marital status had an influence on how families responded and adjusted to an
autism diagnosis, as well as their family identity construction process. Additionally,
grandparents, uncles, and aunts, as well as siblings participated in the study. The study did not
have any stipulations about socioeconomic status, religious backgrounds, or the amount of
children in the family.
Particularly, only families that had a child with a formal diagnosis of autism, specifically,
school-aged children in grades kindergarten through high school participated in the study.
Children within this age range had dealt with and adjusted to the diagnosis for a significant part
of their schooling. Rossetti (2011) found that an autism diagnosis had a significant influence on
the child’s social experiences in school (p. 35). Also, the literature presented in the previous
chapter demonstrated that families experience social stigmas, diminished quality of life and
children on the autism spectrum experience bullying and difficulty making friendships. The
literature supported that families with school-age children experience many factors that could
influence the possible reconstruction of family identity. Thus, this study was limited to families
with school-aged children on the autism spectrum.
57
Recruitment Methods
The researcher utilized a variety of methods to recruit diverse group of families to
participate in the study. Specifically, word-of-mouth, collaboration with autism organizations
and developmental disability groups, and recruitment via social media were used. See addendum
one for a sample recruitment flier for autism and developmental disability advocacy groups, as
well as addendum two for sample social media posts for recruitment. Each recruited family
determined who would participate in the study. The researcher screened all family suggested
participants and purposefully selected all participants from an online questionnaire. The
researcher conducted a pre-screening interview after initial contact was made to participate in the
study.
Potential participants received an e-mail welcome letter about the study along with an
online family participation questionnaire (see addendum three) in order to prescreen the family
for participation. This questionnaire determined if the family qualified to participate in the study
based on the stated purposeful selection criteria and their willingness to solicit other family
members to participate in the study. This questionnaire was available online through
GoogleForms and the data was transferred into an Excel sheet to enable viewing individual and
group responses. The research completed some of the questionnaire online over the phone and in
person for some participants. Participants that were not qualified were notified via email.
Participants volunteered to participate in the study, and were not compensated for their
participation. Table one, located at the end of this chapter; provide a detailed participant family
overview.
58
Interview Methods
Selected families participated in the in-depth interviews. Each participant was
interviewed separately rather than together. The intent was to gain an objective, independent
perspective of each family member’s experiences with autism. Interviews were conducted in-
person and on the phone depending on the availability of each participant. Families were offered
an in-person interview first and ultimately the participated determined the type of interview
based on their preference, availability or proximity. Some families lived in other states. This
made in-person interviews difficult. In these instances, Cisco Connect WebEx Video
Conferencing software, as well as the phone was used to facilitate the interviews. Follow-up
interviews were conducted on a case-by-case basis and were dependent on the information
provided in the initial interview. Specifically, three families required follow interviews via phone
to clarify responses given at the initial interview, as well as to further expound upon assertions
made during the initial response.
An interview guide was used for all interviews (see addendum four). The interview guide
utilized detailed questions that were related to the overarching research questions presented in
chapter one and two but to let the lived experience emerge from the families as an ‘autism story.’
The interview guide began with asking the family member to share their story, or experience,
about how they found out about their family member’s autism diagnosis. Specifically, a narrative
is retrospective meaning making – the shaping or ordering of past experience (Denzin & Lincoln,
2005). Thus, gathering the autism narrative from the family member first will allow them to
reflect on their thoughts about the situation, but provided an opportunity for the researcher to
gather insight on how the family member made meaning from the adjustment to an autism
diagnosis in the family.
59
The interview guide was divided into two sections; a parent interview guide and an adult
family member interview guide. The parent guide asked questions that related to caring for their
autistic child. Specific questions related to family life prior to the diagnosis and after, as well as
what they decided to tell other family members about the diagnosis. The adult family member
interview guide asked questions that related to their observations of the nuclear family dealing
with the autism diagnosis, their experiences with the diagnosis, how the diagnosis has affected
them and their perceptions of their family’s identity.
Interviews were conducted in a conversational setting to be as minimally intrusive as
possible. Since the researcher is a member of the autism community, rapport building and
sharing stories about experiences with the diagnosis was used to provide a comfortable
environment for each participant. So, the interview questioning tried to maintain a conversational
flow, rather than involve point-by-point questioning. This means deviations from the interview
guide questions occurred to let the family narratives emerge as the participants shared their lived
experiences with autism. The intention was to ensure that key areas of questioning reflected in
the interview guide; which were critical to fulfilling the study purpose and addressing the related
overarching questions, were covered during the interview. Each question in the interview guide
was crafted to address in some way at least one of the four overarching research questions posed
in the study. Ultimately, the interview guide yielded insights about communication within each
family and how this communication provided some sense of how the family shaped their identity
after the autism diagnosis.
Data Analysis
All interviews were recorded using a Sony Digital Voice Recorder. Recorded interviews
were transcribed by a professional transcription service. All transcriptions and interview notes
60
were analyzed using NVivo, a qualitative research data analysis software program. Specifically,
this software provided a platform for the researcher to manage, shape and make sense of
qualitative data. The program analyzed interview transcripts and interview notes to identify key
findings and themes by searching for word-use frequencies within interview transcriptions. The
program provided a layer of organization for the researcher to examine and evaluate the data.
The researcher determined if the research questions were answered through the emergence of
themes or key findings in the data by utilizing the software program. For example, once
keywords are noted, within the software, the researcher examined the transcripts and determined
if a theme was found or if a research question was answered. The software allowed the
researcher to analyze the data more efficiently.
In addition to analyzing the data, the researcher provided a glimpse into each family’s
journey with autism. From the interview transcriptions the researcher constructed family
narratives of what each family’s journey with autism was like. This was designed to provide
relevance to each participating family and background to the nature of what families dealing with
an autism diagnosis are like. Sharing the individual family journeys will allow readers to see how
each experience with autism is unique. Family narratives about autism are organized in chapter
four by family to provide a unique profile of each of the participating families. Once the
individual family narratives are shared, key findings are discussed in chapter five.
It was the desire of this qualitative research study to provide insight into the lives of
families adjusting to an autism diagnosis in their family. The research questions presented in
previous chapters were designed to determine how families constructed a new identity after
adjusting to an autism diagnosis and how this is both reflected and influenced by the
communication that takes place in the family and between the family and those outside the
61
family. Ultimately, the researchers desired to share the narratives of the participating families to
give them a voice as the research questions were explored. Denzin & Lincoln (2005) determined
narrative researchers view stories as a way to enable possibilities for self and reality construction
that are intelligible within the narrator’s community and culture (p. 657). The methodology
outlined in this chapter revealed a great deal about the construction of family identity through the
narratives of families adjusting to an autism diagnosis. Table one below provides a detailed
overview of participant families.
62
Table 1.
Participant Family Overview

Family Members
Member with Autism (Age & Year Diagnosed) Family Form Ethnicity Location
Pseudonym (Child’s Age)
Coleman
*Sue Mother Sammy (son, 14) Single-parent Caucasian CA
*Shawn Adult Son Diagnosed: Age 3, 2004 Divorced
Sammy Son (14) Diagnosis: Autism Spectrum Disorder
Gonzalez
*Dan Father Daniel (son, 17) Nuclear Hispanic CA
*Liza Mother Diagnosed: Ages 2 (2006) & 6 (2004)
Addy Adult Daughter Diagnoses: Mental Retardation (2000) &
Daniel Son (17) Autism Spectrum Disorder (2004)
Jade
*Jan Grandmother Brent (son, 10) Blended/Extended Caucasian TX
*Emily Mother Diagnosed: Age 7, 2012 Mother is divorced.
Zoey Daughter (7) Diagnosis: Autism Spectrum Disorder Grandmother lives
Brent Son (10) with Emily.
Juarez
*Sonny Uncle Tilly (niece, 6) Extended Hispanic CA
*Pila Aunt Diagnosed: Age 3, 2012
Tilly Niece (6) Diagnosis: Autism Spectrum Disorder
Miles
*Richard Grandfather Gracie (granddaughter, 6) Extended Caucasian CA
*Ann Grandmother Diagnosed: Age 2, 2011
Gracie Granddaughter (6) Diagnosis: Autism Spectrum Disorder
Perez
*Pedro Father Rosie (daughter, 16) Nuclear Hispanic CA/
*Rosalba Mother Diagnosed: Age 11, 2010 Mexico
Carmen Adult Daughter Diagnosis: Autism Spectrum Disorder
Rosie Daughter (16)
Peterson
*Ed Uncle Mariah (niece, 8) Extended Caucasian CA
*Anya Aunt Diagnosed: Age 3, 2010 Japanese
Mariah Niece (8) Diagnosis: Autism Spectrum Disorder
Ramos
Marisa (daughter, niece, 5) Nuclear/Blended Hispanic CA
*Marcus
Father Diagnosed: Age 3, 2012 Divorced aunt lives
*Mari
Aunt Diagnosis: Autism Spectrum Disorder with Marcus.
Marisa
Daughter/Niece (5)
Rodgers
*Ron Father AJ (son, 17) Nuclear Caucasian CA
*Tracy Mother Diagnosed: Age 2, 1999
Amy Adult Daughter Diagnosis: Autism Spectrum Disorder
AJ Son (17)
Sam Son (15)
Mike Son (13)
Rodriguez
*John Father Johnny (son, 5) & Sarah (daughter, 4) Nuclear Hispanic CA
*Lee Mother Diagnosed: Age 3, 2013 & Age 2, 2014 Vietname
Leah Daughter (7) Diagnoses: Autism Spectrum Disorder se
Johnny Son (5)
Sarah Daughter (4)
Smith
*Rob Father John (son, 13) & Adam (son, 7) Nuclear Caucasian PA
*Julie Mother Diagnosed: Age 11, 2013 & Age 3, 2011
Kate Adult Daughter Diagnoses: Childhood Disintegrative Disorder
Bobby Adult Son (John) & Autism Spectrum Disorder (John &
John Son (13) Adam)
Adam Son (7)
Thompson
*Chris Father Rebecca (daughter, 6) Nuclear Caucasian CA
*Hailey Mother Diagnosed: Birth, 2009 & Age 6, 2015
Rebecca Daughter (6) Diagnoses: Craniosynsostosis Syndrome & Autism
Bryan Son (4)
Jordie Daughter (4)
Age is at time of initial interview. An asterisk (*) participant denotes they participated in the study. Not all listed family members
participated in the study. (The font size was decreased for this table in order for all the information to fit on one page.)
63
Chapter Four: Autism Stories
Stories are a bridge often used to connect people to their roots, provide direction, validate
their personal experience and restore value to lives. Atkinson (1998) stated that stories,
particularly life stories, provide multifaceted roles that bring forth voice and spirit within
personal narratives (p. 225). The nature of narrative inquiry is to capture experiences and present
them as stories. In this study, this approach provides a glimpse into participating families’
experiences with autism and brings forth their voices regarding it. It also serves as context for
addressing the research questions that guided this study. Sharing the lived experiences of
families affected by autism also offers new insights about how family identities are reconstructed
and communication influences this process among family members and with those outside the
family.
In this chapter, 12 families or various members of them who agreed to participate in the
study are introduced. Each family had a relative or child with autism. Each autism story provides
a brief overview of the family’s unique experience with autism. Families were assigned
pseudonyms, and all identifying features of each individual were removed to maintain
anonymity. Each family is first briefly described demographically. Families are organized in
alphabetical order by family name. Table one at the end of the previous chapter provides a
detailed overview of the family participants. This table can serve as a guide as each family
narrative is read. A portrait of each family’s experiences with a child diagnosed with autism
follows this. Providing a portrait of each individual family’s experiences in this chapter helps
contextualize and make more meaningful key findings and insights that emerged from the
interviews with family study participants as a whole which are presented in chapter five.
64
The Coleman Family
The Coleman family has four children, one on the autism spectrum. The oldest adult
child, Shawn, and the mother, Sue, participated in the study. The second oldest child, Sammy, is
a fourteen-year-old male child who is diagnosed with autism. The Coleman family declined to
state the ages and gender of the two younger siblings. However, they mentioned that the younger
two are each about five years apart in age from their autistic brother. Sue did not want to disclose
her profession or marital status either but noted that Sammy’s father did not help with raising
him. Shawn is a full-time college student. The Coleman family lives in California and began
their journey with autism twelve years ago.
Sue stated there was at least yearlong struggle to receive the autism diagnosis for her son.
After multiple assessments and referrals to a variety of medical specialists her son received a
diagnosis of autism at the age three (Sue & Shawn, personal communication, Sept. 18 & 24,
2015). Shawn noted, “My mom was pretty aggressive when it came to getting answers [about my
brother] and asking for referrals to see other doctors,” (personal communication, Sept. 24, 2015).
Sue said that within a couple months of knowing her son might have autism, services to treat his
symptoms began. However, he was still not formally diagnosed until a year after the initial
autism screening (personal communication, Sept. 25, 2015). When first finding out about the
autism diagnosis the family did not know much about autism. Sue stated, “I relied on
information given to me to learn about autism, at first. Soon I learned what resources were
helpful or not. Today, I tell people trying to learn about autism to rely on information from
autism non-profits, they have a lot of non-biased information,” (personal communication, Sept.
25, 2015). Sue stated that not only was Sammy’s father not involved at all with the diagnostic
process, she also has had to deal with the entire process and situation alone.
65
Sammy received a lot of intervention and help during his childhood to treat his autism
symptoms. That treatment and therapy helped him a lot. “My brother attends a normal high
school. He’s not in special education and plays on his school’s football team,” (Shawn, personal
communication, Sept. 28, 2015). Shawn credited his brother’s success to his mother, “She [Sue]
worked really hard to help Shawn. I remember all the appointments and stuff I went to with her
to help him. Everything he’s able to do today is because of her,” (personal communication, Sept.
28, 2015). Sue mentioned that early intervention helps children with autism learn to cope with
the disorder. She stated, “Therapy at a young age is critical for long-term success for autism kids.
That’s the one thing I tell everyone – get a lot of help for them and don’t wait to get it started,”
(personal communication, Sept. 25, 2015).
Shawn reported that communication outside his family about his brother’s autism was
difficult in the beginning, but has recently improved. “We found out who our real friends were.
When my brother had meltdowns, he really had meltdowns – kicking, screaming and everything.
A lot of people stopped talking to us and wouldn’t invite us places anymore,” (personal
communication, Sept. 24, 2015). Sue mentioned most of the social isolation was because other
people, “Just didn’t understand him or how autism affected him,” (personal communication,
Sept. 18, 2015). The Coleman’s concluded that social isolation in the beginning primarily was
caused by societal ignorance about autism. Conversely in recent years, Shawn stated, “My
brother is really lucky. He doesn’t have a lot of setbacks like most kids have with autism. He’s
very intellectual and outgoing. He just joined a football league and is doing well with it,”
(personal communication, Sept. 24, 2015). Sue supported this and said, “I just want him to be
comfortable and safe in his environment. I only tell people outside my family about his diagnosis
if they seem to not understand autism and say rude comments,” (personal communication, Sept.
66
18, 2015). The Coleman family experience illustrates that communication and social dynamics
within a family with a person on the autism spectrum can change considerably throughout the
years.
Overall, the Coleman’s perspective of living with a person diagnosed with autism
provided interesting perspectives. Sue’s contentions about early intervention and learning how to
adapt to people outside the family provided a perspective of how to shape a new family identity
while raising a child on the autism spectrum. Sue was able to maintain a sense of normalcy for
her children and protect them from ridicule received because of her son’s autism diagnosis.
Shawn’s brotherly perspective provides a glimpse into how siblings can cope with having an
autistic sibling and share in meeting their needs. Their story also shows exemplifies how people
outside the family often perceive a child with autism. However, Shawn’s insight as to how the
diagnostic process influenced him and his experiences growing up is helpful in understanding
now individual family members, a sibling in this case, contribute to the construction of a new
family identity, as family adjustments to the autistic child’s autism and related circumstances
take place over time.
The Gonzalez Family
The Gonzalez family has a 17-year-old male child with autism, Daniel. Both parents, Dan
and Liza, participated in the study. They live in California and have been married for 24 years.
They also have one other child who is an adult daughter, Addy. She is 23 years old and declined
to participate in the study. Dan works as a correctional officer and Liza is a licensed vocational
nurse.
The Gonzalez family found out about their Daniel’s diagnosis of autism in 2004 when he
was six years old. This was delayed because of a misdiagnosis of mental retardation in 2000.
67
Liza knew something was not right about Daniel’s behavior and refusal to speak. However, she
fought the mental retardation diagnosis because she believed her son was not intellectually
disabled and because the prescribed treatment did not help their son. For four years in the initial
diagnosis process, they were shuffled between various doctors, their local school district and
regional center for assessments that were of little help for Daniel. This led to a contentious home
environment and undue stress. When they finally received the diagnosis of autism from medical
professionals, it was a relief.
Initially, their experiences with autism and the lengthy diagnosis process also caused
great strain on their marriage and family well-being (Liza, personal communication, July 23,
2015). According to the Gonzalez family, during the 13 years since the autism diagnosis, there
were many ‘ups and downs’ in their communication with each other, often focusing on the initial
diagnosis and the struggles to deal with a child with autism since a correct diagnosis was made.
Dan shared, “Honestly, in the beginning, I resented my wife. She has a cousin with an
intellectual disability. So, in the beginning – before we knew it was autism – I blamed her for
Daniel’s problems. I needed to place the blame on someone and she took the brunt of it,”
(personal communication, Sept. 9, 2015). Liza discussed how her husband would not want to
talk about their son’s condition for a long time. She said she handled everything alone, in the
beginning, without any help from Dan. She explained, “For so long we were told it was an
intellectual disability, and my husband resented me. He was distant and cold, often. He didn’t
want to speak about our son and his needs. He pushed our son away, a lot. I was his primary
caregiver and it was very hard on our marriage for a while,” (personal communication, July 23,
2015). Dan stated that it was the hurt he felt from hearing the news about his son’s situation that
prompted his behavior; he did not care what was actually wrong with his son. He said, “I felt
68
crippled. I couldn’t go in there and help him… I couldn’t take it away, I just wanted him to be
normal – it took a really long time for me to accept who he was,” (personal communication, July
23, 2015). Liza also mentioned they were alone throughout most of this process, “My family and
my in-laws love Daniel, but they didn’t know how to help and didn’t think he had anything truly
wrong with him. They used to tell us to push harder to make him fit in. This did not help my
husband or our family at all,” (personal communication July 23, 2015). The Gonzalez family’s
experience with autism appears to be quite typical of the reality of what it is like to find out your
child has autism.
The Gonzalez family’s experience reveals the raw nature of first struggling to find out
from various professionals what is wrong with your child and then accepting the diagnosis of
autism. The strains it can put on marriage and other family relationships are evident. It also can
be an important part of the difficult process of forging a new family identity. In 2013, nearly ten
years after the initial diagnosis of autism, the Gonzalez’ decided to join a family support group
for families whose members include a child with a disorder on the spectrum. Everyone, including
Addy and Daniel, attended meetings. This was a last resort to try to save their family and
hopefully determine who they were as a family. Liza stated, “The support is great. It is the one
thing that I tell all newly diagnosed families. It’s great to know that we are not alone and a lot of
families go through this, too,” (personal communication, July 23, 2015). Dan supported Liza, “I
agree, the support group has really helped all of us. It is great to connect with other people going
through this,” (personal communication, July 23, 2015). The Gonzalez’ stated the sense of
community found within the support group was beneficial to all in their family. They credited the
improvements in their marriage and family life to the autism family support group.
69
Liza mentioned her only regret was that they did not join the autism family support group
sooner. “We were afraid of the stigma and what people thought of us for so long, we tried to hide
Daniel’s diagnosis,” (personal communication, July 23, 2015). Dan was reluctant at first,
perceiving joining a support group was a sign of weakness or that ‘it showed the world we
couldn’t handle it or Daniel.” But, “I was wrong, it helped us so much,” he confessed (personal
communication, July 23, 2015). Liza and Dan never tried to hide their son’s autism diagnosis but
never told many people about it. Liza credits this to the fact they tried for so long to get him
therapeutic services and their focus was on getting Daniel help, not telling people about Daniel’s
autism diagnosis. However, they mentioned other family members did know about the diagnosis,
although they often felt isolated from them because of Daniel’s condition (personal
communication, July 23, 2015, and Sept. 9, 2015). Joining the support group in 2013 helped
alleviate this sense of isolation and the stigma associated with their son’s diagnosis of autism.
The Gonzalez family’s story about autism is revealing about what life is like with a child
diagnosed with autism. The family communication struggles that resulted from their situation
with autism exemplify what can happen in other families that have to deal with this issue. Their
difficulties were compounded by the lack of initial support from Daniel’s father. However, the
Gonzalez’ had since fought to shape a new family identity and determine who they were as
parents with a child diagnosed with autism. It was clear that their joining an autism family
support group contributed to this new perspective and recognition that they were not isolated as
they raised a child with autism.
The Jade Family
The Jade family consists of a single mother (Emily) with two children and her mother
(Jan) who assists with raising Emily’s children. Emily’s 10-year-old son, Brent, has autism. She
70
also has a seven-year-old typically developed daughter named Zoey. Emily is a public
elementary school teacher and Jan works as a high school English teacher at a private Christian
school. Emily lives with her mother, Jan, in Texas. They had lived together since 2008 when
Emily divorced her husband. Jan mentioned she encouraged her daughter to move in with her
during the divorce, “The kids were so little and she needed the help. It was the best thing for all
of us at the time,” (personal communication, July 31, 2015). Emily explained that her mother
played an instrumental role in the care of her son, and they relied on each other for daily support.
Brent’s father lives in another state and did not assist with the daily care, especially the extensive
care required with Brent. The Jade family, Emily, Jan (maternal grandmother), Brent and Zoey
identified themselves as a nuclear family, since Emily is a single mother and Jan assisted with
raising both of Emily’s children and they all lived in the same home.
Emily noticed that there was something different about her son when he was about three
years old. He began to exhibit strange behaviors and act oddly in social situations. At first, she
thought it could not be autism stating, “Somebody had brought that up with me before and I was
just like, no, that’s not my kid because he doesn’t look like Rain Man you know. And I was just
ignorant that’s all,” (personal communication, July 31, 2015).
When her son was three years old she enlisted the help of medical professionals, and
Brent received play therapy to help with his behavioral issues, but deep down Emily felt there
was something more to Brent’s struggles (Emily, personal communication, July 31, 2015). Jan
stated, “I encouraged her (Emily) along the way to continue to push for a diagnosis; as a teacher
I knew there was something deeper to Brent’s struggle than just behavioral issues resulting from
the divorce,” (personal communication, July 31, 2015). With Jan’s encouragement and support,
Emily sought out multiple opinions from various doctors about Brent’s situation. She stated, “I
71
started seeking out more professional opinions because I just wanted him to get the services and
resources that he would need to, you know, help him have some better skills” (personal
communication, July 31, 2015). Throughout the diagnostic process for Brent, Emily began to
seek out information about autism and it eased her fears, (personal communication, July 31,
2015). In 2012, after a four-year struggle with medical professionals and their conflicting
opinions about her son’s behaviors, Emily received the news from their school district’s school
psychiatrist that Brent was diagnosed with autism. Again, the Jade family’s diagnostic
experiences are similar to those of many parents of children with autism. This includes being
persistent with medical professionals and seeking multiple opinions just to receive eventually a
formal diagnosis of autism.
The Jade family communicated openly within and outside the family about Brent when it
came to his autism diagnosis and needs. Jan shared, “It is important for our family to know what
my Brent is succeeding at or when he is having a hard time with something. He [Brent] knows
about his diagnosis and so does his sister [Zoey]. It is important for both of them know we are all
different and what is causing his struggle,” (personal communication, July 31, 2015). Emily also
declared she did not shy away from Brent’s struggle or the stigma that came with an autism
diagnosis, “It doesn’t matter what people think when they hear he has autism,” (personal
communication, July 31, 2015). Emily said her side of the family accepted the diagnosis, but
credited it to their close interaction with Brent and the need to get services to help him. Jan
stated, “I think, first of all, I was a little shocked when I found out but that followed very closely
by being relieved because we did want to get help for some of the behaviors that he was
experiencing,” (personal communication, July 31, 2015).
72
Brent was aware of his diagnosis and he openly shared when he needed a ‘break.’ His
mother mentioned that his need for a ‘break’ was typically related to some type of sensory
overload. Emily said that he would tell people that he had autism, and, “That’s ok, it’s up to him
to share that with others.” It was her desire to help Brent feel comfortable about the person he
was and not feel stigma towards the way he communicated or behaved (personal communication,
July 31, 2015).
Emily shared that her communication with her ex-husband about their son’s autism
diagnosis was difficult during and immediately after the autism diagnosis period. “When I told
his dad, his dad rejected the idea of it [autism]. That was really the first he heard of autism, and
he was pretty upset. So, it took him a while to come around to the reality that his son was
autistic, and also his side of the family,” (personal communication, July 31, 2015). Emily
expressed that since the initial diagnosis, Brent’s father and paternal relatives had made great
strides towards accepting the autism diagnosis. Particularly, she mentioned that her ex-husband
desired to talk about Brent’s struggles and progress more often. Since Brent’s father lives in
another state, this communication was important to continuing to build their relationship. Emily
explained that, “Brent and his sister spend the summer with their father. Since they’ve been with
their father this year, my ex has made a point to call me each week to share information about
how the kids are doing, but mainly to chat about Brent. It’s been nice that he’s making an effort
to know more about autism,” (personal communication, July 31, 2015).
The Jade family provides an example of a blended family situation and communication
struggles between divorced parents with a child who has special needs. The Jade’s were very
detailed in sharing their struggles to learn about autism and their challenges in dealing with
Brent’s autism diagnosis and condition. They sought out many medical opinions to arrive at an
73
autism diagnosis. They were very open in revealing how the autism diagnosis influenced family
life and ultimately helped shape their new blended family identity. The Jade family also
embraced the idea of openly communicating about autism to Brent, his sister Zoey and the entire
family. This approach helped the family adjust to Brent’s autism diagnosis.
The Juarez Family
The Juarez family consists of Pila and Sonny, an aunt and uncle too, Tilly, their six-year-
old niece diagnosed with autism. Pila and Sonny have three male children who are all under the
age of eight years old and have been married for nine years. Sonny’s older brother is the father of
his autistic niece. Pila works as an admissions and records clerk at a community college, and
Sonny works as a retail clerk for a grocery store. They live in California and interact with their
autistic niece a couple of times a week. The Juarez family desired to participate in the study
because they wanted to share their perspective of being relatives outside the immediate family to
a child on the autism spectrum.
According to Pila, there was an immediate change in their family and a desire for
closeness to their autistic niece’s family after finding out about Tilly’s diagnosis (personal
communication, Sept. 30, 2015). The Juarez family stated they learned about their niece’s autism
prior to it being formally diagnosed. Pila shared, “My sister in law came back from a routine
checkup and told me that her daughter’s pediatrician suspected my niece may have autism,”
(personal communication, Sept. 25, 2015). Sonny mentioned he and his siblings, particularly his
older brother had a close relationship, which helped explain why he and his wife took an active
part in their niece’s life after her autism was discovered. He explained, “Our kids are close in
age. Our oldest boys are eight months apart and we have been very close since we were kids,”
(personal communication, Oct. 15, 2015). He and Pila described their niece’s diagnosis process
74
as routine and not difficult, although it was upsetting. “My brother told me it was not hard for
them to get a diagnosis. They were shocked and hurt. I remember him saying that he wanted all
of us (family members) to accept and help in aiding my niece in as much growth as we could.
When I found out about her diagnosis, she [Tilly] wouldn’t speak or interact with any of us,”
(Sonny, personal communication, Oct. 15, 2015).
Pila mentioned that Tilly is a completely different child today than when she was
diagnosed. “Services have helped Tilly a lot. Since the diagnosis, she really is a new kid,”
(personal communication, Sept. 30, 2015). Pila and Sonny stated that they helped in this process
by always giving support, under the guidance of their niece’s parents (personal communication,
Sept. 30 and Oct. 15, 2015). “As a family we see her [his autistic niece] as a very intelligent
child with just as much potential as a child without autism,” (Sonny, personal communication,
Oct. 15, 2015). However, Pila noted that while, “Most of us were supportive and accepting of my
niece’s autism diagnosis. However, there was some denial by family members – that was
shocking, but they now accept my niece for who she is,” (personal communication, Sept. 30,
2015). Despite difficult circumstances, the family seemingly provided a supportive network for
Tilly.
The Juarez family felt that communication about autism and their niece had remained
positive since the autism diagnosis within their family. “I feel as though the diagnosis brought us
closer. We were able to show love and support to one another in a new way. It has been a life-
changing experience for our entire family – especially to see all the progress she has made,”
(Pila, personal communication, Sept. 30, 2015). The Juarez family also mentioned they sought
information out about autism through social media accounts, blogs, and magazines. This
information helped them understand what life was like for Sonny’s brother and his brother’s
75
wife, (Pila & Sonny, personal communication Sept. 30 & Oct. 15, 2015). Sonny declared, “As a
family we would praise my niece’s accomplishments,” (personal communication, Oct. 15, 2015).
Pila agreed, “It is important for us to show that we are proud of her (their autistic niece)
accomplishments and progress” (personal communication, Sept. 30, 2015).
Sonny did mention one instance where there was a communication breakdown between
him and his brother about his autistic niece, “One time I brought up odd behaviors my niece
constantly did, and without realizing it, I offended my brother. I saw this hurt them a lot. My
brother brought it to my attention and I realized how sensitive certain things are to parents
dealing with this,” (personal communication, Oct. 15, 2015). This was indicative of why and
how the Juarez family members that participated in the interview reportedly have strived to
maintain open communication about their niece’s autism in order to maintain their close-knit
relationship with their autistic niece’s parents.
Communication outside the family about their autistic niece had been minimal. Pila and
Sonny mentioned they hold conflicting views about sharing information about their niece’s
autism diagnosis. Specifically, Sonny mentioned:
At first, I never brought up that I have an autistic niece in my conversations. It
was out of respect for my brother and his wife’s wishes to not tell everyone in the
beginning. However, today I still feel the same way. It’s not fair to her [his
autistic niece] that she’s thrown around like a conversation piece outside our
family circle. She should be loved for who she is not her diagnosis,” (personal
communication, Oct. 15, 2015).
Pila had a different view, “I let people know that I have a niece with autism. I don’t hide it,
which is the opposite of my husband’s thoughts about my niece. She [her autistic niece] has done
76
so well with her therapy and progress that I want to share information about her. When I’ve told
others I receive overwhelming support,” (personal communication, Sept. 30, 2015).
The Juarez family offers another extended family perspective of dealing with children
diagnosed with autism. Experiences with autism quite often extend beyond the nuclear family.
Tilly’s aunt and uncle exhibited a positive, supportive approach in response to their niece’s
condition and needs, as well as the needs of her immediate family. They appeared to lovingly
support Tilly and her parents at the time of the diagnosis and throughout her progress. They
indicated that they had tried to communicate with the immediate family in a constructive and
meaningful way. In this way, they contributed to an evolving family identity associated with
Tilly’s condition, needs, and progress. Pila and Sonny were not only able to share their
experiences with the disorder but were able to recognize this new family identity that seemed to
take shape.
The Miles Family
The Miles family consists of the maternal grandparents, Ann and Richard, of a five-year-
old female grandchild, Gracie, diagnosed with autism. Ann is a department chair and associate
professor of communication at a university in Southern California. Richard is a retired
agricultural biologist. This couple lives in California and has been married for 30 years. They
have three adult children – Jenna who is 32 years old, Ethan who is 28 years old and Jewell who
is 25 years old. Jenna is the mother of their granddaughter, Gracie. Ann shared that Gracie was
diagnosed with autism at two years old in 2011. At the time, Ann and Richard did not suspect
that anything was odd with Gracie’s development but learned from their daughter that Gracie
was developmentally delayed. Eventually, they found out that Gracie had autism. The Miles
family assists with the Gracie’s care and plays an integral role in her specific needs that have
77
resulted from the autism diagnosis and its manifestations. In 2013, they decided to move one-
block from their daughter, Jenna, and Jenna’s husband, Henry, to assist with the needs associated
with Gracie’s autism diagnosis. For example, “Sometimes we help with rides to therapy for
Gracie or just take her older brother, Jake, so the therapists can work with Gracie at home,”
(Ann, personal communication, Oct. 22, 2015). The Miles Family decided to participate in the
study because they were compelled to share the perspective of grandparents affected by autism in
their family.
Ann mentioned she learned about their granddaughter’s autism within the first 48 hours
after their daughter found out about the autism diagnosis. She said, “Since the beginning we
were involved. We support each of our children in all they do, and this crisis was not any
different. We want to provide our daughter with the help she needed with Gracie,” (personal
communication, Sept. 16, 2015). Ann stated it did not seem as if there was much of a struggle to
get the autism diagnosis, but there, “Was a lot of red tape getting services going between all the
types of therapies that were needed for Gracie,” (personal communication, Oct. 22, 2015). Gracie
was diagnosed at two-years-old, and began services by two and a half; according to Ann, and
often times she’s in therapy for about 20 hours per week. Richard shared, “Sometimes it feels as
if it is too much. You know the therapy for Gracie. But then I see her play with friends, talk and
act like a typical child and I know it’s worth it, and I know Jenna’s done a great job,” (personal
communication, Sept. 16, 2015). The Miles family mentioned they were close with their
daughter’s family prior to the diagnosis of autism. “My grandchildren, Gracie and Jake, are 17
months apart in age. I have always helped my daughter with them,” (Ann, personal
communication, Sept. 16, 2015). In fact, in the last four years since the Miles family first learned
78
about the autism diagnosis, both grandparents felt it had only brought them closer to their oldest
daughter’s family.
While Ann and Richard are involved with their granddaughter’s care, they mentioned
they defer to her parent’s for critical decision-making involved with raising a child on the autism
spectrum. The Miles family was clear to say they provided a lot of support and care for their
granddaughter, but her parents were the primary caregivers. Richard shared, “I know my
daughter needs her space. It’s Jenna’s family and she has a great husband. I support them
whenever they need it, but I don’t interfere with their decision-making involving my autistic
granddaughter,” (personal communication, Sept. 16, 2015). Based on their experiences with
autism, the couple believed it was imperative to offer help for any child with autism and those
directly affected by the situation. According to Ann, “It seems a lot of people want to wait until
they’re asked to help. To be honest, my daughter was drowning and needed help. She wouldn’t
have asked. So, I offered and that was probably the best thing I could do for her family,”
(personal communication, Sept. 16, 2015). They communicated that Jenna and Henry had done a
great job helping Gracie reach her full potential, but as grandparents, they would be doing a
disservice by not providing support and help when it is needed, (Richard, personal
communication Sept. 16, 2015).
Richard did share that as a grandparent there were struggles dealing with the diagnosis,
“It’s really heartbreaking to see Jenna go through this. I wish I could take the pain and struggle
away. People are mean and they don’t know that Gracie has autism. No parent should see their
child or grandchild get the looks and ridicule they get from the ignorant people out there,”
(personal communication, Sept. 16, 2015). Ann was quick to add, “It is tough seeing our
daughter go through this, and while there is negativity from the public there is beauty in it, too.
79
Autism makes you appreciate the little things we take for granted all the time,” (personal
communication, Sept. 16, 2015).
The Miles family stated that Gracie attended a private Christian school because her
parents wanted to protect her from the ridicule, bullying, and stigma associated with autism they
saw in the public school system. “Jenna and Henry were adamant that they wanted to make sure
Gracie had the best and most typical school experience. They knew she wouldn’t get that at a
public school. So they sacrifice to send Gracie and Jake to private school,” (Richard, personal
communication, Sept. 16, 2015). Ann added, “Jenna calls it the ‘bubble.’ She’s told me keeping
them in a Christian ‘bubble’ at this time, protects them from the stigma associated with the
disorder,” (personal communication, Sept. 16, 2015). The Miles family mentioned Jenna and
Henry have not told their children that Gracie has autism. She explained, “Jenna is very
particular about describing Gracie as different, and she has different abilities and that’s the way
God made her. She’s accepted Gracie’s diagnosis, but as a mother she wants people to know
Gracie’s not a label but a person,” (personal communication, Oct. 22, 2015). Richard and Ann
supported their daughter’s perspective about telling Gracie and Jake about autism. They
mentioned, “Not telling Jake and Gracie about autism, helps them learn that all people are
beautiful and unique” and this also, “Helps reduce stigma associated with autism,” in addition to
keeping her in a Christian school. She added, “It seems Jenna’s biggest fear is the children
receiving stigma and social isolation because of Gracie’s autism diagnosis,” (personal
communication, Sept. 16 and Oct. 22, 2015).
The Miles family provided an extended family perspective related to raising a child with
an autism diagnosis. Richard and Ann provided a glimpse of what it is like to assist a family that
is going through this experience. So much consideration typically is given by scholars, medical
80
professionals and educators to the immediate family and their quality of life associated with
autism, that often how the extended family perceives an autism diagnosis and the care involved
with raising an autistic child is overlooked. Richard and Ann’s experiences show that
grandparents can be meaningfully involved in the lives of autistic children.
The Perez Family
The Perez family consists of two parents, Rosalba and Pedro, one adult daughter,
Carmen, and a sixteen-year-old daughter, Rosie, diagnosed with autism. Rosalba and Pedro have
been married for over 20 years. Both parents and Carmen participated in the study. The Perez
family are Mexican immigrants and moved to the United States five years ago. Rosalba is a
homemaker and Pedro works in construction. Carmen is a full-time college student. The Perez
family lives in California and lived in Central Mexico before they immigrated to America. When
they moved to California they received an autism diagnosis regarding Rosie.
The Perez family stated that they fought to find out what was wrong with Rosie for
eleven years. Carmen explained, “In Mexico, they don’t diagnose autism like they do here. A lot
of the doctors told my parents my sister just acted spoiled and needed to be disciplined better.
My sister has a lot of behavioral issues that we know now is caused by the autism. But in
Mexico, they would tell us that nothing was wrong,” (personal communication, Sept. 29, 2015).
Pedro mentioned that at a young age his daughter exhibited poor speech, behavior and would not
listen. He did not know what autism was but knew there was something different about Rosie
that was not right when he compared her to Carmen (personal communication, Sept. 20, 2015).
Rosalba added to the discussion about how autism is not diagnosed in Mexico as it is in America.
“There is a lot of negativity towards disability in Mexico. Doctors just told us she is bad and we
didn’t discipline her enough. They didn’t listen to me at all,” (personal communication, Sept. 20,
81
2015). Pedro agreed, “Mental illness is not good in Mexico. People don’t talk about it or even
know what it is. None of us knew what autism was before we got to America. We were happy to
learn that there was something causing Rosie to behave this way,” (personal communication,
Sept. 20, 2015).
When Rosie began school in California, she was diagnosed with autism soon after her
teacher referred her to the school psychiatrist. She was then referred to the local regional center
that provides services for children and adults with autism, epilepsy, cerebral palsy, as well as
down syndrome for the community and this was confirmed. Carmen described the impact this
had, “The diagnosis process was fast once we got to America. However, we had to learn about
autism and it changed the way we thought about my sister – for so long we were told she was
bad,” (personal communication, Sept. 29, 2015). The various services provided by the local
regional center served as a relief for the family. Rosalba declared, “For so long I was so worried
about her, all my energy and attention were focused on our youngest daughter. At times, I even
forgot to care for other family members. I was relieved when I finally learned what was going
on,” (personal communication, Sept. 20, 2015). Pedro agreed, “I was relieved to find someone to
help Rosie. Now she gets good help to teach her how to behave. It is nice to have support for
Rosie here in America,” (personal communication, Sept. 20, 2015). The Perez family stated that
they continued to rely heavily on support from their regional center.
The family indicated that immediate family communication involving autism was strong,
however, social situations outside the family were reported as difficult. Rosalba stated, “We all
have been involved with her [Rosie’s] progress, setbacks and development. Everyone in our
entire family is compassionate and lovely with her,” (personal communication, Sept. 20, 2015).
Carmen mentioned, “Recently, because of my sister’s behavior, she’s living at a treatment center
82
this school year. They provide treatment and schooling for her in a better environment than we
can. I see her all the time and she’s actually doing better because of this new environment,”
(personal communication, Sept. 29, 2015). Pedro stated, “Even though she has a special situation
we always try to include her into all of our family activities,” (personal communication, Sept. 20,
2015). Rosalba added, “It is sad that my daughter cannot live with me, but I know she is getting
the help she needs in the home she lives in. I am glad that she is getting help,” (personal
communication, Sept. 20, 2015). The current living situation for Rosie was a result of her
treatment plan. Carmen shared that since her sister was now a teenager, she was more resistant to
the services provided and difficult to live with. The treatment center was considered a temporary
solution to help her adjust to life with therapy dedicated to her particular need on the autism
spectrum (personal communication, Sept. 29, 2015).
The family also stated that many family members in Mexico rejected them because of
how their autistic daughter acted. This communication had not improved since receiving a formal
diagnosis of autism in America. “Our family in Mexico doesn’t believe anything’s wrong with
her. You don’t know about autism like you do here [in America]. So, they just think Americans
are trying to make excuses for her behaviors. It’s disappointing, but just the way it is,” (Carmen,
personal communication, Sept. 29, 2015). Pedro added, “It bothers me that my family doesn’t get
it. But it's ok, all I need is Rosalba and my daughters, we will get through this,” (personal
communication, Sept. 20, 2015). Rosalba said she does not tell her family about Rosie’s autism
and her treatment because of their resistance to this explanation of her problems. “They don’t get
it so I don’t tell them anything. I just say she’s fine. I don’t want to fight with them about how
they think Americans are wrong,” (Rosalba, personal communication, Sept. 20, 2015).
83
The interview with the Perez family yielded another interesting perspective about
families dealing with an autism diagnosis of a family member, especially those with a child who
was not diagnosed with autism when the child was young. Their experiences with the Mexican
medical system limited their ability to receive a proper diagnosis. The experiences within this
family shed light on how autism is perceived differently depending on cultural and societal
influences. As the family worked to construct a new family identity after the diagnosis, they
shared relief when they were able eventually to identify, better understand and cope with Rosie’s
lifelong behaviors. Their case also provides an indication of how disparities in understanding of
and services available for autism vary by culture and country.
The Peterson Family
The Peterson family provides another good example of how extended family members
can be involved with a child diagnosed with autism. Ed and Anya are an uncle and aunt to their
niece, Mariah, who is eight-years-old and diagnosed with autism. Ed’s older sister is Mariah’s
mother. Anya and Ed have been married for seven years and do not have any children. The
Peterson family lives in California. Ed works as an audio engineer and Anya is a project services
manager. It was their desire to share an extended family perspective about autism, especially
since they do not yet have children. Ed explained, “I thought it would be important to tell you
about our experiences with autism from the outside looking in. We don’t have kids, yet, but we
have a niece with autism and wanted to share that with you,” (personal communication, Sept. 21,
2015). The Peterson family started their journey with autism began five years ago. However, Ed
made it clear that, “I don’t view my sister’s family as different than any other family, even
though Mariah has autism. They are still the same to me,” (personal communication, Sept. 21,
2015).
84
The Peterson family stated they first found out about their niece’s autism diagnosis from
Ed’s mother when Mariah was three-years-old. Ed then spoke with his sister a couple days later
(personal communication, Sept. 21, 2015). Anya remembered, “At first, my sister-in-law told us
my niece had a hearing problem. She ended up taking her in for hearing tests, but later my
mother in law called and told us our niece had autism,” (personal communication Sept. 21,
2015).
The Peterson family shared that they have been supportive since the beginning. However,
Anya stated she had a hard time understanding what autism was because she was raised in Japan.
“I lived in Japan all my life, I moved here [to America] about ten years ago, and I never heard
the word autism before my mother-in-law said my niece is autistic,” (personal communication,
Sept. 21, 2015). Ed added, “I researched it some online before we called my sister. Honestly, I
heard about it, mainly through Rain Man, but didn’t know how to explain it to my wife. Her
Japanese heritage makes it difficult to explain these types of things to her,” (personal
communication, Sept. 21, 2015). Although Anya’s immigration to the United States ten years
ago and differences in her cultural background regarding disabilities, especially autism, made it
difficult for her to understand Mariah’s diagnosis at first, she gained a better understanding of the
disability and how it is dealt with in the United States as time went on (Anya, personal
communication, Sept. 21, 2015).
The Peterson family revealed that communication about their niece’s autism with
Mariah’s immediate family was open. “We always ask how she’s doing and love hearing about
the progress she’s made. At first, that’s all we talked about when we got together with my entire
family. Now we don’t talk about it as much because she is high-functioning and has made a lot
of progress,” (Ed, personal communication, Sept. 21, 2015). The Peterson family stated they
85
asked for updates about their niece, but this was nothing different than what they would do in the
case of any of their other nieces and nephews. Anya stated her sister-in-law openly
communicated with them about their niece’s progress considering her disorder, but they usually
waited for their niece’s immediate family to initiate dialogue about this (personal
communication, Sept. 21, 2015). “My in-laws tell me a lot about Mariah. They help me
understand her difficulties, but she is not much different than any other kid,” (Anya, personal
communication, Sept. 21, 2015). Ed mentioned that he occasionally called his sister to receive
updates about Mariah, but that he mainly heard about Mariah’s progress through his mother. Ed
was adamant in stating that while his family openly discusses Mariah’s progress with her
diagnosis of autism, the family still treated her like a typical child, “We don’t make a point to
talk about her diagnosis all the time. We talk about Mariah and how she is, just like she was any
other kid,” (personal communication, Sept. 21, 2015).
The Peterson family provided another good example of how extended family members
can be important to both family communication and family identity when a family member is
diagnosed with autism. Their initial response to Mariah’s diagnosis was to support her and her
immediate family and seek out information about autism. This helped their understanding of the
disability but also helped facilitate meaningful communication and adjustment to the diagnosis in
the case of Mariah’s parents and others in the family. As the entire Peterson family responded to
Mariah’s disability and needs over time, Ed and Anya sought out further information and shared
it. This helped the family construct a new family identity post autism diagnosis.
This chapter has provided a glimpse into the lives of a variety of individual families with
a family member diagnosed with autism. Each autism story has begun to paint an overall picture
of how a child with autism affects families and shapes their family identity. This picture becomes
86
more fully illustrated in the next chapter where the collective results of the interviews with
families are presented and themes, sub-themes and other insights which emerged in the study and
which address the purpose of the study and research questions that guided it are explained.
The Ramos Family
The Ramos family, at least those that participated in the study, consist of the father and
aunt, Marcus and Mari, of a five-year-old female child with autism, Marisa, as well as an eight-
year-old typically developed male child, Aaron. Marcus is a correctional sergeant and Mari is an
events services manager. Marcus is married to Marisa’s mother, but she was not available to
participate in the study during the data collection period. The family lives in California and Mari
has lived with Marcus, her brother, and his wife for one year. Marcus, Mari, and the child’s
mother participated in the daily care of the child with autism in the family. Marcus said he and
his wife found out about Marisa’s autism diagnosis in 2012. Marisa was three-years-old at the
time of the diagnosis, and Marcus and his wife experienced difficulties with medical
professionals for about a year in obtaining an accurate assessment of Marisa’ condition until
finally receiving an autism diagnosis.
Marcus did not suspect their Marisa had autism, but stated his wife had a feeling
something was not right with their daughter’s development. He mentioned he was oblivious to
any abnormalities about his daughter’s development, but she was not speaking at all at two years
old. Marcus stated he and his wife told their pediatrician that Marisa was not speaking when
Marisa was two-years-old. The family did not struggle to receive services to help Marisa, but it
took a year to get a clear diagnosis. Marcus recalled, “I remember that within the month after we
learned that Marisa was at-risk for autism, our regional center got autism therapy started. It
happened all so fast. One day we learned she might be autistic and the next day, it seemed, we
87
had services in our home 20 hours per week,” (personal communication, Sept. 20, 2015).
However, throughout the next year, Marcus and his wife battled to receive a formal diagnosis. At
first, Marcus was told that a child is not formally diagnosed with autism until three years old. He
was told that his daughter was ‘too high-functioning’ to have classic autism. In the end, their
local regional center diagnosed Marisa with autism right after her third birthday (personal
communication, Sept. 20, 2015). He explained, “Really, my wife spent most of her time fighting
with the doctors. Since my daughter did not have a formal diagnosis, she was not able to receive
many of the services for children with autism. So, the label was important to my wife for that
reason – to get Marisa all the services she needed,” (personal communication, Sept. 20, 2015).
This family’s experience exemplifies the importance of a label – autism diagnosis – so that
families can receive needed services.
Mari’s perspective of the diagnosis experience sheds additional light into the extended
family member perspective. At the time, Marisa was diagnosed with autism she did not live with
Marcus and his family. She described her initial reaction upon learning about the diagnosis, “I
remember feeling like something wasn’t right when my sister-in-law took Marisa for a lot of
doctor’s appointments. My brother invited me over and told me what they were dealing with. I
remember feeling so bad for him. He was really hurt,” (personal communication, Sept. 19, 2015).
Mari began to research online for information about autism, because, “I didn’t really know what
autism was before learning that Marisa had autism,” (personal communication, Sept. 19, 2015).
She added, “I remember, Marcus and his wife being committed to getting the right stuff going
for Marisa. They were really dedicated to it and stressed at the same time. I noticed there was a
lot involved to help Marisa,” (personal communication, Sept. 19, 2015). Mari exemplifies how
88
members of autistic child’s extended family can be actively involved with personal family
experiences constructed throughout the autism diagnosis process.
Marcus mentioned that he and his wife tried to be upfront about their daughter’s
diagnosis with family members and others. However, in the beginning, it was difficult to speak
about it. Mari confirmed this notion, “I didn’t really say much or ask about it at first. I waited
for my brother to bring it up. But now it’s different. He’ll openly talk about it,” (personal
communication, Sept. 19, 2015). Marcus also expressed he had a hard time adjusting to the
diagnosis at first. He stated, “When I first learned about my daughter’s diagnosis of autism I felt
like crippled and like I lost a part of me. I had a hard time accepting it [the autism diagnosis] at
first, but now I am all right about talking to others about autism” (personal communication, Sept.
17, 2015). Mari added, “He wouldn’t say the word autism at first. My brother would always say
that Marisa has something going on. I don’t know what that was about, but for a while he would
never say she was autistic,” (personal communication, Sept. 19, 2015). Marcus explained, “At
first, I didn’t embrace the autism diagnosis. It’s not that I didn’t believe Marisa was autistic…
rather, I didn’t want people to treat her differently because of it,” (personal communication, Sept.
17, 2015). His biggest fear was that Marisa would be ridiculed, bullied or stigmatized. He stated,
‘the world is cruel and kids are mean… I have to try to protect her,’ (personal communication,
Sept. 17, 2015).
The Ramos family provides a unique family communication perspective to the study.
Their interactions with autism from an immediate family and extended family perspective
highlight the importance of communication about autism to extended family members. For
example, Mari mentioned that since moving in with her brother [Marcus] and his wife she has a
new found respect for the daily care that is involved with having a child with an autism
89
diagnosis. “I never realized how busy my brother and his wife are with the daily care for Marisa.
I offer to help all the time. I would’ve never known how much work it was to raise Marisa until I
moved in with my brother,” (Mari, personal communication, Sept. 19, 2015). This family’s
experience shows how important it can be to have extended family members involved at the
diagnosis stage but for them to see and even experience the pressures families dealing with
autism go through. The Ramos family’s experiences also demonstrate how family identities
evolve throughout the autism diagnosis process and immediately after it. Marcus expressed
difficulty stating his daughter was autistic. However, he learned to move past the label and
embrace the word ‘autism’ overtime as he and his family constructed a new identity tied to their
autistic child and their experiences.
The Rodgers Family
The Rodgers family has four children and both parents, Tracy and Ron, participated in
the study. They live in California and had been married for 20 years. At the time of this study,
Ron was a commercial real estate broker and Tracy was an assistant professor of nursing, as well
as a clinical charge nurse. They had a typically developed 20-year-old daughter, Amy, a 17-year-
old son with autism, AJ, and two adolescent children, Mike (15) and Sammy (13). The Rodgers’
family found out about their son’s autism in 1999 after mentioning to their pediatrician that their
son was not developing like his older sister. According to Tracy, “He did not speak,
communicate or acknowledge anyone in the family,” (personal communication, Aug. 12, 2015).
They indicated the diagnosis was not surprising. It actually was a relief to know there was a way
to help their son.
The autism diagnosis also provided them with a chance to better understand their son.
Tracy noted that with her medical background she was not a stranger to developmental disorders,
90
like autism. She stated, “I knew he would be O.K. I knew that we could get him help and our
world wouldn’t end,” (personal communication, Aug. 12, 2015). They were able to learn about
the disorder and provide treatment for and help accommodate his limitations caused by the
disorder.
The diagnostic period the family experienced while trying to determine if AJ had autism
“seemed typical,” (Tracy and Ron, personal communication, Aug. 12 and Sept. 16, 2015). “We
didn’t have any trouble getting a diagnosis, our pediatrician evaluated him and sent us to our
local regional center where we received the diagnosis,” (Tracy, personal communication, Aug.
12, 2015). Ron mentioned the only stress was managing AJ’s autism therapies while still meeting
the needs of their three other children; however, they did manage and were appreciative of the
services that were available to help their son (personal communication Sept. 16, 2015).
The Rodgers family also indicated they were always very open about their son’s autism
diagnosis within the family. “We mentioned it [the autism diagnosis] to our children, but they
were so young at the time. So we just kind of incorporated it into our regular everyday life. And
when people saw how he acted differently, we would just let them know why he was acting
different,” (Tracy, personal communication, Aug. 12, 2015). Ron further confirmed that they had
always been forthcoming about AJ’s autism diagnosis, “There’s nothing to hide. He is AJ and
that’s that,” (personal communication, Sept. 16, 2015).
The Rodgers family stated there were not any issues with communication about the
autism diagnosis and conditions associated with it with their extended family. Tracy said, “Both
sides of the family are very supportive and involved. From the beginning, we’ve been upfront
with telling everyone about our son’s limitations. They’ve all provided help in any family
situation when we need it,” (personal communication, Aug. 12, 2015). Ron supported his wife’s
91
statement, “Our family will adapt to any situation to accommodate our son with autism. We all
know he doesn’t like water, so our other children try to find other ways of staying cool in the
summer that do not include water so their brother can participate, too,” (personal
communication, Sept. 16, 2015). During the holidays, Ron mentioned both sides of their
extended family had adapted family gatherings to accommodate AJ’s needs. He felt this was
because why had been forthcoming with everyone in the family about AJ. Specifically, “Holiday
gatherings have remained the same since AJ’s diagnosis. We all still gather together; we are not
isolated like some families dealing with an autism diagnosis,” (personal communication, Sept.
16, 2015). Tracy also mentioned, “In the beginning they [the extended family] just wanted to
know what was wrong with AJ and what was autism. The information we provided helped them
understand our son and the disorder,” (personal communication, Aug. 12, 2015). The Rodgers
family stressed the importance of communication within the family. This family provided an
example of how open and frequent communication about a child’s autism diagnosis can help
satisfy information and relationship needs within an extended family, resulting in minimal family
change or change in identity.
For the last 15 years the Rodgers family had served as autism support group leaders for
newly diagnosed families. Ron mentioned they felt that giving back to the autism community
was important, “We know what it was like to be newly diagnosed. It is rough for a lot of
families. Providing support helps us connect with them and lets them know it will get better – it
reminds us that it has gotten better, too,” (personal communication, Aug. 12, 2015). Tracy
continued, “Don’t resist support groups. They are so helpful, especially in the beginning. It helps
getting to know people that know what you are going through,” (personal communication, Aug.
12, 2015). Ron mentioned that providing a place for struggling families to discuss and share their
92
struggles and successes regarding their autistic children was rewarding and important. He
offered, “You have to talk about it. I tell people all the time the worse thing you can do is not
talk about your child’s autism. It [the autism diagnosis] can be hard to talk about in the
beginning, but in the end it helps you make sense of the diagnosis,” (personal communication,
Sept. 16, 2015).
The Rodgers family exemplifies how a positive perspective and open communication
about an autism diagnosis can help a family and even other families raise a child who has been
diagnosed with an autism spectrum disorder of some type.
This family’s willingness to share information about their experiences with autism has helped
others learn about the benefits of open communication about the autism diagnosis of their child
and related experiences. While many families in the study experienced stigma and isolation, the
Rodger’s family coped with their child’s autism by embracing it and showing others how to do
the same. The Rodgers family was able to construct a new family identity through their
involvement in the autism community and their open and meaningful communication with their
extended family.
The Rodriguez Family
The Rodriguez family has three children. Both parents, John and Lee, participated in the
study. John and Lee have been married for nine years and live in California. John is a medically
retired correctional officer and stays home to provide the primary care for both of their autistic
children. Lee is an emergency room nurse. They have a seven-year-old typically developed
female child, Leah, a five-year-old male child, Johnny, and a four-year-old female child, Sarah –
both diagnosed with autism. The Rodriguez family found out about Johnny’s autism diagnosis in
2013 and Sarah was diagnosed in 2014. Despite Lee’s medical background she stated, “I believe
93
there is nothing that can prepare you for this [an autism diagnosis]. I deal with medical
emergencies every day as an ER nurse – I watch families receive some of the worst news you
can hear about loved ones, this, though, I wasn’t prepared for the autism diagnosis in my family
it hits harder when it's your life that is about to change,” (personal communication, July 12,
2015). John’s response to these diagnoses was similar; “There’s nothing that prepares you to
hear something’s wrong with your child, because of this I was in shock when I learned about
Johnny and Sarah’s conditions,” (personal communication, July 12, 2015). The Rodriguez’
diagnosis experiences with autism were different with each child, but processing the news of an
autism diagnosis was extremely difficult in each case. Johnny’s diagnosis was particularly
disturbing to his father:
The doctor saw that you know, Johnny wasn’t at age level for his development
and he wasn’t doing a lot of the age-limit stuff that they were supposed to do…
And then we got a diagnosis, and it was just —it felt like the world just ended. It
really did. Like we didn’t understand — we truly didn’t understand what they
were saying. We actually thought that autism was like our son was retarded, we
were ignorant – we didn’t know anything about autism… just the stuff you see on
TV like the movie ‘RainMan’,” (personal communication, July 12, 2015).
Lee added, “It was hard with our son. We didn’t know what to expect. Really, we denied it for a
while… You know, thinking he would grow out of it or learn to talk” (personal communication,
July 12, 2015). The Rodriguez family did not struggle to receive a diagnosis from health care
professionals for Johnny but mentioned there was a delay in beginning services because a
backlog in the system regarding their medical insurance (Lee, personal communication, July 12,
2015).
94
Both parents admitted it was more difficult to make sense of their Johnny’s diagnosis of
autism than Sarah’s diagnosis because they had a better understanding of what autism entails and
as Lee put it, “…We were more prepared to go through her diagnosis process” (personal
communication, July 12, 2015). While Sarah’s diagnosis of autism was less of a shock, they still
experienced disbelief that they could have two children diagnosed with the same developmental
disorder. “I was more prepared with Sarah’s diagnosis, but still didn’t want to admit that it was
happening again to us,” (John, personal communication, July 12, 2015). Sarah was diagnosed
with autism one year after they received Johnny’s autism diagnosis. While Sarah’s condition was
upsetting, they admitted they felt better prepared and equipped to handle both autistic children.
Lee explained, “I saw some things in Sarah that reminded me of Johnny; this time I didn’t try to
deny it – I knew what it was when I saw it so we got her diagnosed more quickly,” (personal
communication, July 12, 2015). Although John was poised throughout his reflection about the
diagnosis of his children, he admitted, “I took it harder than the wife. It’s just I couldn't
emotionally show it. I had to be strong because my wife’s a very sensitive person. And both
couldn’t be on the ground. One of us had to hold the other. So I didn't let her see that side of me,”
(personal communication, July 12, 2015). Lee recalled that the diagnostic process for both
Johnny and Sarah caused her to be visibly upset and she began to cry during the interview as she
reflected upon prior experiences with the diagnosis period for both of her autistic children. She
revealed, “When I found out that my children have autism, that we lost our family — everything
changed,” (personal communication, July 12, 2015). As the Rodriguez family shared their story,
they each provided an authentic glimpse into the pain of dealing with an autism diagnosis of a
child in the family.
95
Their experiences and communication with other members of their family compounded
John and Lee’s pain and guilt while dealing with the autism diagnoses of both children. Lee said
she was a first generation American. Her parents had immigrated to America from Vietnam
about forty years ago. Lee’s Vietnamese family heritage and cultural norms made
communication with her parents about Johnny and Sarah’s autism diagnoses difficult. While
being interviewed, she regularly referred to their children’s autism as a strain on her relationship
with her parents (Lee, personal communication, July 12, 2015). She said, “My communication
with my family is difficult… there isn’t even a word or description for autism in Vietnamese.
This makes it difficult to explain, and even more [difficult] trying to prove to my family that my
kids are struggling and not just spoiled,” (personal communication, July 12, 2015).
John also faced challenges when sharing their children’s condition with his parents. He
stated, “They were more up on the times with medical diagnoses and stuff. We thought they
would get it; they’re from Mexico but have been in America since they were children – not like
Lee’s parents who moved here when they were adults – but they wanted to just tell us the kids
were normal, I’m not sure if they didn’t want to accept it or tried to give us hope,” (personal
communication, July 15, 2015). Because communication with their extended family was so
difficult, Lee and John confirmed that they had stopped telling their children’s maternal and
paternal grandparents anything related to the diagnosis because ‘they just don’t get it,’ (Lee and
John, personal communication, July 15,2015).
John stated the autism diagnoses and how family members responded to them did not
bring relief, but rather stigma and confusion. He stated, “It’s hard. We did not gain anything
from receiving a diagnosis. Really, we got the help we needed for the kids, but communicating
with our family, especially my in-laws, and going out in public has only got harder,” (personal
96
communication, July 12, 2015). Lee also mentioned they did not receive much help from family
members when it came to the care of their autistic children. John stated his parents try to help,
but it was just “lip service” rather than providing the relief they needed as parents of children on
the autism spectrum (personal communication, July 12, 2015).
The response of their parents affected their communication with others about their
children and autism. John shared, “We felt like, we didn’t want to tell a lot of people after our
parents —we felt a lot of weight. An indescribable amount of weight and pressure on our
shoulders as far as people are going to judge us and look down on us,” (personal communication,
July 12, 2015). Lee added, “Strangers look at me as if your child is not the same as mine, I don't
want to really tell them anything about my autistic children, but they look at me like — it’s like a
disease or something,” (personal communication, July 12, 2015). John further expressed his
observations of strangers, “It felt like the times that we did want to go out, everybody's looking at
us with a nasty face or basically telling us, why don't you just leave – it's tough to deal with that,”
(personal communication, July 12, 2015). Judgment, pressure, and sadness seemed to be
prominent feelings Lee and John experienced during and immediately after the autism diagnoses
of their youngest children.
The Rodriguez family provides poignant examples of the difficulties that come with an
autism diagnosis in the family. Since the diagnoses of both children, they had not received much
relief. Family members offered little help initially and they still experienced stigma in public and
within their family. Their story provides a glimpse of the great burden parents of autistic children
often carry. While both parents acknowledged they had adapted to a new family life and adjusted
to social stigma from strangers when out in public, they still conveyed an overwhelming sense of
97
pain and disappointment derived from their family and society as they attempted to construct a
new family identity.
The Smith Family
The Smith family consists of parents, Julie and Rob, with four children that include two
on the autism spectrum. They have been married for over twenty years and live in Pennsylvania.
Julie and Rob have three biological children; two are adult children, Kate and Bobby, as well as
John, a 13-year-old male child, diagnosed with autism spectrum disorder and childhood
disintegrative disorder (CDD). CDD is characterized by the late onset of developmental delays
and permanent loss in language, social function, and motor skills. John had experienced
significant loss in social functions and motor skills. Rob stated, “CDD is like you are going back
to having a baby. The child really loses all the skills they learned since birth. For some, it’s
gradual, for others the loss of skills if rapid. But as the child grows they eventually loose most
skills and level out at a pretty low developmental level for life,” (personal communication, July
20, 2015). The Smith family, also, has an adopted seven-year-old male child, Adam, diagnosed
with autism. They adopted Adam in 2011. However, Rob and Julie were clear that his adoption
was not regularly discussed, as he was their child first and foremost. Rob works as a mass
communication professor at a college in Pennsylvania. Julie worked as an autism support
teacher. However, she was poignant about her primary title, “I am a mom, first and foremost,
let’s make that clear,” (personal communication, July 20, 2015). The Smith family provides a
blended family perspective of families that have children diagnosed with autism.
The Smith family stated John was diagnosed with autism and CDD in 2013 after an
eight-year struggle family went through to receive a clear diagnosis. Specifically, Julie
mentioned they had to fight for accurate diagnoses for John. “The entire diagnosis process for
98
John was a battle. For years, they (doctors) kept telling me it was just behavioral, but I knew it
was more to it. It wasn’t until he started showing regressive behaviors, like not being able to
control his bowels that they did genetic testing and then considered autism after they suspected
CDD,” (Julie, personal communication, July 20, 2015). Rob mentioned that he relied on his wife
for a lot of the doctor’s visits for John citing, “There’s only so much you can take. I am a father,
I am supposed to protect my children and I could not protect him from this,” (personal
communication, July 20, 2015). Julie described her struggles in dealing with those around her as
John’s condition and diagnosis evolved, “John’s diagnosis has been tough. You would think your
friends and community would rally around you, and they do to an extent. However, when they
see what we are really dealing with – the difficulty our son has with simple things, they leave
you hanging,” (personal communication, July 20,2015). Julie continued in a solemn tone,
“There’s a lot of isolation… I’ve seen this for years in my profession – but never thought it
[receiving an autism diagnosis] was as isolating and stigmatizing as it really is,” (personal
communication, July 20, 2015). The Smith’s experience with an autism diagnosis for their older
son apparently came at the cost of many friendships and considerable social isolation.
Rob and Julie’s youngest son, Adam, was diagnosed with autism in 2011, and they were
aware of the autism diagnosis when their adoption was finalized by the state of Pennsylvania.
Julie shared, “I had suspected that Adam was on the spectrum within the first couple of days we
brought him home. I mentioned it to his case worker and she said that he was in many different
foster homes, so the odd behaviors may be due to the adjustment period,” (personal
communication, July 20, 2015). However, the, “Odd behaviors did not go away,” and after about
a month she took him to get diagnosed. Rob mentioned the diagnosis process for Adam was
“more cut and dry” than their diagnosis experiences with John. Julie described it this way, “I’ve
99
heard about how cold the diagnostic experience is. But I was shocked to see how dry and clinical
the experience was. I’ve worked with them (the people on Adam’s diagnostic team) for years,
but he was still just another file to them. It is a shame,” (personal communication, July 20, 2015).
The Smith’s stated that it took about six months for Adam to receive an autism diagnosis, but
there was not anything that should have prevented or delayed a diagnosis. Julie explained that,
“Adam’s diagnosis of autism was typical – much like what you see in the textbooks,” (personal
communication, July 20, 2015).
The Smith family had a unique experience with the autism diagnoses. Each son provided
very different diagnosis experiences. One point the Smith family mentioned was the need to
develop a “new normal” in the family. Rob said, “You just have to deal with it. You can think of
yourself. It’s your children – as much as you want it to go away, it’s not, so you have to provide
the best life you can for them regardless of their diagnosis,” (personal communication, July 20,
2015). Julie agreed with Rob, “You need to find a new normal. It’s ok to grieve the loss, that’s
fine – what you thought your child was is no longer the person they will be – but you have to
create a new normal, a new way to live that works for your family,” (personal communication,
July 20, 2015). Rob said, “I still try to do things we did before the diagnoses. We are the same
family; we just have a new way of doing things. Like fishing, I still take all of my sons fishing,
but I know that John has more limitations now than before, and that’s ok,” (personal
communication, July 20, 2015). Julie and Rob’s efforts to create a “new normal” essentially
described their construction of a new family identity. It is basically a newly constructed family
identity that adapts to the needs of their autistic children. However, even though the Smith
family detailed how they had embraced a new way of living, they still had difficulty
communicating with or relating to others about their son’s diagnoses and their situation.
100
The Thompson Family
The Thompson family has three children and both parents, Hailey and Chris, participated
in the study. The Thompson family’s six-year-old daughter, Rebecca, has autism, as well as
craniosynostosis. They also have four-year-old typically developed fraternal twins, Bryan and
Jordie. Hailey is an assistant professor of journalism at a university in Southern California, and
Chris is a teacher’s assistant at a private Christian elementary school. They had been married for
ten years at the time of this study. The Thompson family thought Rebecca was on the autism
spectrum for years but struggled to receive a formal diagnosis. Rebecca was officially diagnosed
with autism in 2015. Many medical professionals believed their daughter did not have autism,
because of her craniosynsostosis syndrome. This genetic syndrome manifests as 19 genetic
deletions, including one deletion on the Twist 1 gene that affects gross and fine motor
development. This also is a common deficit in children with autism. Specifically, their oldest
daughter has a craniofacial malformation that has resulted in many medical procedures to
provide a proper way for her skull and brain to grow. However, for several years, many medical
professionals had contended Rebecca’s behavioral, social, gross and fine motor difficulties were
loosely related to her many medical procedures and hospitalization as a result of her
craniosynsostosis syndrome – not autism spectrum disorder.
Hailey mentioned that around 20 weeks into her pregnancy she learned there might be
some complications with Rebecca’s development. She was under the assumption that it could be
Edward’s syndrome; which, typically, results in loss of pregnancy or stillbirth. She learned in her
third trimester that the abnormalities found in her sonogram at 20 weeks of gestation were gone.
However, when Rebecca was born Hailey observed, “The nurses weren’t telling me anything
about my daughter but I knew something was wrong. I wasn’t completely prepared for the news
101
that I received. I tried to rationalize how she looked, but it was obvious that something was not
right with her appearance, a very common characteristic with craniofacial malformations,”
(personal communication, Nov. 3, 2015). Chris mentioned, “I was like okay. Let’s go. Let’s deal
with it and we’ll do what we have to do. It’s my daughter and I love her to pieces,” (personal
communication, July 11, 2015). Since birth Rebecca has had six major surgeries with at least ten
CT scans/MRIs that all required anesthesia, with one surgery lasting ten hours and required a
blood transfusion. She also developed meningitis from one of the surgeries, requiring an
extensive hospital stay. While recalling Rebecca’s traumatic medical history Hailey joked,
“Knowing the inside of an ambulance wasn’t on my parental checklist or bucket list, but now I
can cross it off,” (personal communication, Nov. 5, 2015).
Given the circumstances endured by Hailey and Chris in the first couple years of
Rebecca’s life, she is nothing short of a miracle. “It’s good to think through her journey. It can
be so easy to try to ‘fix’ her and lose sight of the miracle,” (Hailey, personal communication,
Nov. 5, 2015). The Thompson family considered the autism diagnosis as a relief because it
enabled providing much-needed help for Rebecca and her behavioral issues. Hailey discussed the
struggle for an autism diagnosis:
I've had to research, call for help over and over, and appear crazy... I’m sure so
many therapists think I am a glutton for diagnoses! I tried crazy treatments;
wasted money and time but eventually convinced doctors that I'm not kidding.
Why would a mom go through all that if she wasn't truly in need? (personal
communication, Oct. 10, 2015 – Hailey).
Particularly, Hailey was relieved that the autism diagnosis provided the opportunity for applied
behavioral analysis (ABA) therapy – a treatment typically only provided to children on the
102
autism spectrum. It was mentioned that their daughter has received other types of behavioral
therapy to help alleviate her violent outbursts and aggressive behavior, but these were not
successful. However, ABA therapy provided more rigid treatment methods than other behavioral
therapies they had tried.
Both parents agreed that communication regarding the autism diagnosis and related
behaviors was difficult amongst their extended family members. Hailey noted their resistance to
embracing the diagnosis, “Most feel that her behaviors – that are typical for children on the
autism spectrum – are a result of everything Rebecca’s been through and a desire for control.
They won’t look past her medical diagnoses, and that is difficult,” (personal communication,
July 11, 2015). Chris shared that their extended family was caring and receptive towards their
family. However, he acknowledged, “They know our oldest daughter has special needs, but they
don’t think she’s autistic. I am not sure why. It doesn’t matter, though. We just tell people this is
our daughter and you just have to learn to accept it,” (personal communication, July 11, 2015).
Hailey shared, “My parents will help, but they don’t get it. My dad refuses to think she has
autism. He doesn’t agree with the diagnosis. It’s hard because we live with my parents and he is
resistant to the help Rebecca needs,” (personal communication, Oct. 12, 2015). The Thompson’s
further shared, “It’s difficult, we do not have anyone to chat with about Rebecca’s diagnosis,”
and “Rebecca’s behavior is out of control at times so we are isolated because we have to choose
social outings carefully,” (Hailey and Chris, personal communication, July 11, 2015).
The Thompson family demonstrates the complexity of dealing with medical issues, as
well as an autism diagnosis, and how openly communicating about it with family members can
still met with resistance to acceptance of the diagnosis. Their experiences with an autism
diagnosis also again illustrate how isolating a diagnosis can be, even within a family or extended
103
family. Overall, the Thompson’s have shown that their experience with and struggle to receive
an autism diagnosis for Rebecca actually had provided relief for them and opportunities to
provide their daughter with much-needed help for a better quality of life. These seemed to be key
factors that had shaped this family identity before and after Rebecca’s autism diagnosis.
104
Chapter Five: Findings
The autism stories of the families that participated in the study were presented in the
previous chapter. This chapter presents the collective findings that emerged from the interviews
with these participants in the study as a whole. The experiences of these families yielded many
valuable insights that addressed the overall purpose of the study which was to determine how
families construct a new family identity after the news of an autism diagnosis of a family
member, as well as to examine the types of communication that took place within and outside the
family after the news of the autism diagnosis. The chapter introduces and describes themes that
emerged from the analysis of transcripts of the recorded interviews with the various families and
their members. This thematic presentation is organized around the four research questions that
guided the study and were posed at the end of chapter two.
In the course of interviewing 24 people within twelve families that participated in the
study, immediate and extended family members provided rich dialogue about their
communication experiences in dealing with an autism diagnosis of a family member within their
family. Their shared experiences were used to determine ultimately how and to what extent
family communication associated with the diagnosis of a child with autism influenced the
construction of a new family identity. As revealed in part in the individual stories in chapter four,
parents and other study participants described their views on the general communicative
dynamics within their families. They also provided insight into family dialogue and relationships
associated with the autism diagnosis process, as well as the attitudes toward, behavior regarding,
and needs for daily care of the family member diagnosed with autism. Not only parents but also
siblings provided their perspectives on experiences with and communication related to a child
with autism within their family. This added to the overall understanding of familial experiences
105
with autism. In addition, extended family members, such as grandparents, aunts, and uncles who
participated in the study provided insights about their experiences with autism and
communication related to it within the family setting.
Research Question #1: How do families construct their identities after the autism diagnosis
of a family member?
Identity construction deals with assuming new roles, expectations, norms and ways of
daily functioning within a family. It also assumes, within this study, that a typical way of living
prior to an autism diagnosis was abandoned and a new family expectations occurred primarily as
a result of a family member’s autism diagnosis. This study assumes that family identity is
constructed over time. Thus, fixed points as to when one identity is abandoned and another
assumed may be unclear or are unique to each family’s experience with autism. However, among
the participants in this study, a change within the family began with news of an autism diagnosis.
From that point on, daily life and family norms were naturally challenged by changes associated
with the care of the person diagnosed with autism.
Four major themes emerged from the analysis of the data obtained through the collective
interviews, which offered insight on how families make changes to their identities after the
autism diagnosis of a family member. The major themes are grief, stigma, resiliency, and faith.
Each major theme is thoroughly analyzed and explored within its context of this research
question.
Grief. Grief is often referred to as an experience of profound loss of someone or
something, usually as a result of death. It is the normal, dynamic process that occurs in response
to any type of loss. This process encompasses physical, emotional, cognitive, spiritual, and social
responses to the loss. It is highly individualized, depending on the person's perception of the loss
106
and influenced by its context and concurrent stressors (Mallinson, 1999). As a person grieves,
such as in the case of a death of a loved one, for example, they move through three realities:
grievers often have unfinished business that needs to be addressed to facilitate reconciliation
with the death; caregivers cannot effectively offer help without listening intentionally to the
bereaved in order to help them identify their needs, and caregivers can offer better care by a
willingness to learn from the bereaved (Corrliss, 1997). Additionally, it has been found that as
people grieve the loss of a person they move through five stages; shock - denial versus panic;
emotion - catharsis versus depression; negotiation - bargaining versus selling out; cognition -
realistic hope versus despair, and commitment - acceptance versus resignation (Kubler-Ross &
Byock, 1969). Generally, the experiences of many the participants in this study with children
with autism seemed to reflect these common characteristics of the grief process.
Each family that participated in the study experienced grief after the initial diagnosis of
autism within their family. Since grief can be a multifaceted response to an experience, however,
each family’s experience with grief was somewhat unique to their autism story. However, in one
way or another, all parents who were interviewed mentioned that the child they knew or thought
they knew had died with the news of an autism diagnosis. As might be expected, parents tended
to experience more profound grief than extended family members or siblings who participated in
the study.
Specifically, within the Ramos family, Marcus mentioned, “I felt like the life I dreamed
of for my daughter was gone. She was not the same, and I didn’t know what to expect. It felt like
someone had cut off my hand, and I grieved for the child I thought I had,” (personal
communication, Sept. 20, 2015). In the Rodriguez family, Lee noted, “Really, we denied it for a
while… You know, thinking he would grow out,” (personal communication, July 12, 2015).
107
Lee’s comments about her reaction to her son’s diagnosis reflected cognitive symptoms of grief
that resulted in the denial of the diagnosis. Grief symptoms also are exasperated by the level of
attachment one has to the person for whom one is grieving (Corrliss, 1997). Thus, both Marcus
and Lee shared experiences that are consistent with those who experience strong feelings of grief
towards individuals they have strong levels of attachment towards – their children (Pennington,
2013).
In the Jade family, Emily reported that her ex-husband initially rejected the idea that their
son could be diagnosed with autism (personal communication, July 31, 2105). Here again, this
form of denial is consistent with cognitive experiences that typically have been associated with
grief. In the Smith family, Rob mentioned, “Your life changes for awhile. You don’t go out
much because you don’t want to accept what has happened to your child [in reference to the
autism diagnosis],” (personal communication, July 20, 2015). Rob’s avoidance of accepting his
son’s autism diagnosis seemed to be a rationalization, as a form of bargaining, to justify his
family’s social withdrawal. This is consistent with the negotiation stage of grief often found for
those moving through the grief process (Kubler-Ross & Byock, 1969 & Mallinson, 1999).
Dan, of the Gonzalez family, also described his response to his son’s autism diagnosis in
a way that characterized the grief process, although it was manifested in a different way. He built
resentment towards his wife and, “It took years for me to forgive my wife for something that
wasn’t her fault to begin with,” (personal communication, July 23, 2015). While Dan’s response
was consistent with feelings of grief over the loss of a loved one (Kubler-Ross & Byock, 1969),
in this case, it was over the loss of the son he thought he had prior to the autism diagnosis.
Some participating families appeared to move beyond the grief process for their family
member’s autism diagnosis quite quickly as their new family identity took shape. John and Lee
108
exemplify this. Lee was quite emotional in this regard throughout the entire interview. She
mentioned, “I wish my kids or I never had to go through this,” (personal communication, July
11, 2015). However, her family appeared to have begun to construct a new identity despite the
struggle to accept the diagnosis and the grief that followed. John noted one way they had to
adjust their lives, take on new family roles and view their family differently, “When I got hurt at
work and learned I was going to be medically retired. Instead of me transitioning to another
career, we decided that it was best that I stayed at home. It was not something I would have ever
considered before finding out about Johnny and Sarah’s autism diagnoses, but now it’s my life,”
(personal communication, July 11, 2015). As this couple’s experiences showed, some level of
grief not only typically seems to be characteristic of discovering one’s child or children are
autistic and is part of the transition to constructing a new family identity, but the grief process is
not necessarily completed in order to begin new family identity construction.
Conversely, the Jade and Thompson families did not have a profound or lengthy grief
experience and quickly constructed a new family identity. In their cases, the diagnosis brought
strong feelings of relief to the family. Emily shared that she and her family significantly
struggled when she divorced her husband, and much of that grief experience affected their
experience with her son’s autism diagnosis (personal communication, July 12, 2015). However,
the autism diagnosis brought, “A much-needed relief – we finally knew what was going on with
Brent,” and, “We weren’t that sad, we really wanted to get him help so we were relieved to
finally get that going,” (personal communication, July 12, 2015). Additionally, Hailey, of the
Thompson family, reported, “For me the [autism] diagnosis was very validating and affirming,
reassuring that my concerns were on track or on point,” (personal communication July 11, 2015).
Both the Jade and Thompson families mentioned they had already made gradual changes to
109
family life to accommodate their autistic child prior to the formal diagnosis, so constructing a
new family identity began quickly after the diagnosis process. Again, this both reflected and was
facilitated by the fact that their grief was not as intense and so the process was not long.
Overall, the families in this study reported feelings of grief that are quite common when a
loved one is lost or other significant tragedies are experienced. The news of an autism diagnosis
for their family member was treated by most of the study participants much like a death because
providing accurate prognoses for people with autism is difficult. Many did not know what to
assume about the quality of life, communicative abilities and social interaction levels their child
with autism would have or how this would affect their family life. As a result, strong levels of
dissonance were experienced towards what they could assume life would be like for and with
their autistic family member. Among these families, the autism diagnosis experience itself,
particularly in its early stages, and how it was presented to them played a role in the process of
grief associated with the diagnosis. As scholars dealing with this problem have contended, “The
information provided to families affects parents’ later adaptation to their child’s diagnosis,”
(Selimoglu, Ozdemir, Toret & Ozkubat, 2013).
As the interviews with these study participants indicated, the ability to cope with an
autism diagnosis is related to how and how long a family grieves over the news of it. In addition,
grief and how families’ deal with it is an important part of the process in the construction of new
identities for those experiencing autism in their families. As the examples of various families in
this study demonstrate, this process of identity construction begins out of necessity and it can
develop either fairly quickly in some cases or gradually over a longer period of time in others.
Stigma. Stigma associated with the child with autism experience was another common
theme which emerged in this study that was tied to the construction of new family identities.
110
Stigma is associated with public disapproval and is, typically, noted as a mark of disgrace
associated with a particular quality, circumstance, situation or person. It is often referred to as
shame, disgrace, or humiliation and unequivocally has negative connotations to quality of life
when a person is experiencing it (Pei-Wen, 2008).
All families who participated in the study indicated in various ways that they experienced
stigma related to their family member with autism. Some families shared firsthand experiences
of stigma directly associated with having an autistic family member, whereas other families
shared secondhand stories of their family members experiencing this kind of stigma. There were
a variety of ways stigma was handled within the family. Stigma was crippling for some
participating families. For others, it was not ignored but did not drastically influence family life.
Regardless, stigma played an integral role in the family identity construction process.
The stigma families experienced affected how they adapted to particular social situations.
It also significantly influenced their social lives after the autism diagnosis. For example, the
Smith family reported shock and surprise as to how friends in their church responded to the care
involved in raising a child with autism. Julie mentioned, “People say they care and they’ll help,
but they don’t truly mean it,” (personal communication, July 20, 2015). Julie continued by
saying, “The church was great until my son’s behaviors became very profound and they told me
I couldn’t bring him anymore – so we had to leave,” (personal communication, July 20, 2015).
This experience exemplifies how stigma related to autism can lead to social isolation. Sue, of the
Coleman family, mentioned, “You really learn who your friends are after the [autism]
diagnosis,” (personal communication, Sept. 18. 2015). Sue’s son Shawn added, “Some people
started thinking of us differently. I knew this because they stopped hanging out with us,”
(personal communication, Sept. 24, 2015). These families’ experiences show not only how
111
stigma tied to an autism diagnosis can change a family’s social life but that it can be a significant
influence on family identity construction for those with autistic children.
The Gonzalez family reported stigma that began with a particular incident that crippled
their family’s social life and led to social isolation. Specifically, Lee mentioned:
“One time I was at Kumon for my eldest daughter’s tutoring and Sarah was playing with a little
girl. The mom and I started talking and then she asked me why Sarah doesn’t talk. I explained
how she’s autistic and such. The next visit the mother wouldn’t let her daughter play with Sarah.
So ever since then I sit in the car so I don’t have to worry about seeing that mother and Sarah
being upset because she doesn’t know why she can’t play with her friend,” (personal
This is not an uncommon situation for many parents with children on the autism
spectrum. Stigmatizing behavior and actions reportedly influence an autism families’ social life
all the time. Social isolation also is frequently reported among families with autistic children,
according to some observers (Manning, et. al, 2011). Tracy, of The Rodgers family, mentioned
her experiences with another form of stigma that is common for those with autistic children. She
said, “People stare and you wish they didn’t. You know they are judging you, but there’s nothing
you can do about it” (personal communication, Aug. 12, 2015). Carmen, from the Perez family,
mentioned, “The saddest part is staring. I’ll never understand why people will just keep looking
when my sister is having a meltdown in public,” (personal communication, Sept. 29, 2015). Ann,
of the Miles family shared, “There were many times Jenna and her husband would leave Gracie
with us, just so they could attend a friend’s party or go to the movies without having to worry
about what people were thinking about my granddaughter’s odd behaviors,” (personal
112
Regardless of the type of stigma experienced by the families, they all found ways to cope
with the stigmatizing behavior brought about during the care of having a family member with
autism and despite problems in social settings. Selimoglu et. al (2013) assert that parental coping
is tied to quality of doctoral care during the autism diagnosis period, “In order to achieve better
parental coping, it is important to establish positive, caring, and mutual relationships among
professionals, parents, and children,” (p. 166). In this study, there is evidence that coping
abilities amongst parents and other families may be tied to doctoral care and relationships with
patients at the time of an autism diagnosis.
The stigmatization toward autistic people and their families that were experienced by
participants in this study exemplifies what previous scholars have found. Horton, Farrell &
Fudge (2014) contend that a large part of the stigmatizing behavior exhibited by the general
public towards people with autism is a result of inaccurate media portrayals of them. In addition,
prognoses for people with autism depicted through mass media are often erroneous (p. 191).
Specifically, “Representations among journalists have done little to quell concerns or to advance
improved understanding of the diagnosis,” (p.192). Journalists also have speculated more about
the causes, treatments, and fears of autism rather than addressing stigmatizations associated with
the diagnosis and looking for ways to resolve them (Holton, Weberling, Clarke, & Smith, 2012).
Given this widespread speculation about and inaccurate portrayals of autism reported or depicted
throughout mass media, it is not surprising that the experiences of stigma amongst families with
autistic children that participated in this study were quite apparent.
Based on the interviews conducted with families in this study, it also is apparent that
stigma acts as an agent of change amongst those who have experienced autism in their families.
Stigma often served as a catalyst for change among many participating families. In the case of
113
some, it resulted in significant behavior changes within the families as they adjusted to a new
reality. In effect, stigma was an important contributor to a new family identity they constructed.
Resiliency. Another prominent theme that emerged from the analysis of the interviews
with families with autistic children and which seemed to be a significant factor in their forming a
new family identity was resiliency. Resiliency refers to the capacity to recover from something
difficult (Randall & Parker, 1999). It is often associated with the idea of an object ‘springing
back’ into shape after a difficult situation. Additionally, it is associated with the term elasticity,
again referring to the ability to adjust to or overcome a difficult situation (Preecy, 2014).
In the context of this study, resiliency deals with the ability of a participating family to
recover from the news of an autism diagnosis for a family member. A family’s resiliency also is
indicative of their ability to construct and comfortably assume a new family identity. Some
families enthusiastically assumed the new family identity. Whereas other families were reluctant
to their family’s new identity, but assumed the identity out of necessity to move beyond their
grief over the news of the autism diagnosis. The idea of resiliency in the context of participating
families in this study also refers to how the family had overcome the grief associated with the
news of a diagnosis, and the way they had been able to move beyond the stigmatizing actions
experienced with those outside the family. In different ways, they had been able to ‘spring back’
from the news of an autism diagnosis of a family member and then engage in the process of
constructing a new family identity that reflected this.
The analysis of the recorded and transcribed interviews with the families revealed the
majority of families experienced resiliency, while others appeared to be much less able to do so.
Some families were more resilient than others in moving through the grief process associated
with an autism diagnosis of a child. Some families seemed to deal much more easily than others
114
with stigma tied to their autism experiences. Some families were more readily available to
engage positively in the development of a new family identity, others struggled with adapting a
new way of life, or family identity, brought on because of the autism diagnosis. These families
tended to express pessimistic and negative views of their life since the autism diagnosis of a
family member. The differences between those families who displayed resiliency and those that
did not were quite stark.
Families in the study who demonstrated resiliency did so in various ways. The Miles
family said they experienced significant changes to daily life that reflected this. Ann mentioned,
“I saw my daughter and her husband go through many different stages to adjust to my
granddaughter’s needs. They eventually found a way of life that worked for them,” (personal
communication, Oct. 22, 2015). Additionally, Richard mentioned, “It changed our lives at first
with fear, but later the fear changed into joy as she noticeably improved with treatment,”
(personal communication, Oct. 22, 2015). The Ramos family, also, noticed changes in their daily
life that characterized resiliency. Specifically, Marcus mentioned, “It changed the everyday
schedule and we had to get used to having different people come to the house for the first couple
years. I had trouble having to explain the diagnosis to people at first,” (personal communication,
Sept. 20, 2015). Mari stated, “I speak of it [autism diagnosis] as a motivational thing, since
autism is so common, I like to talk about my niece’s progress; it’s very inspirational to see how
far she has come,” (personal communication, Sept. 20, 2015). Marcus also made a point to
mention that his family treats his autistic daughter like everyone else, and she receives no special
treatment because of her autism diagnosis (personal communication, Sept. 20, 2015). This
statement revealed another way the Ramos family demonstrated resiliency as they adjusted to the
diagnosis and constructed a new family identity. By treating Marisa like any other family
115
member, they countered what has been found in previous studies. Many families of special needs
children often reported preferential or different treatment towards their children with special
needs. This can often single them out and alienate them from other peers or family members
(Broomhead, 2013).
The Jade family made strides toward constructing a new family identity with the news of
an autism diagnosis for Brent. Jan, Brent’s grandmother, simply stated, “So it was shock, I guess
I was really surprised, and then really relieved,” (personal communication, July 31, 2015). Relief
provided the Jade family with the catalyst for resilient behavior leading to a new family identity
construction. Emily, Brent’s mother, mentioned prior to the diagnosis, “I was at a loss. I didn’t
know what to do. His [Brent’s] behavior seemed out of control. The diagnosis lifted so much
pressure off of me. It helped me learn who my son was and how to help him,” (personal
communication, July 31, 2015). This experience is unique when compared to many, both in this
study and generally. Although Emily mentioned difficulty prior to the diagnosis, the diagnosis
was embraced. She said this happened, “Once we knew, we were able to adapt our life to fit
Brent’s needs better. He’s a better kid because of us learning how to help him through his
diagnosis,” (personal communication, July 31, 2015). The Jade’s resilient behavior also allowed
the family to construct a new family identity they could feel good about.
The Perez family also exhibited resiliency after receiving the news of an autism diagnosis
in their family. Rosalba said, “We tried to learn more about autism, so we could learn about our
daughter better,” (personal communication, Sept. 19, 2015). Rosalba’s husband Pedro
experienced rejection towards his daughter’s diagnosis by his immediate family but stated he
learned to ignore it and move on (personal communication, Sept. 18, 2015). The resilient
behaviors the Perez family described enabled them to construct a new family identity that even
116
dispelled stigma associated with their daughter’s very disruptive behaviors. As mentioned in
Chapter Four, this was a significant challenge for the Perez family because of the aggressive
behaviors Rosie displayed because of her form of autism. Their resiliency also was related to the
support the couple had for each other as they helped Rosie improve and their new family identity
evolved.
Adversely, the Rodriguez family mentioned they did not gain anything from the
diagnosis, but they learned to adjust to the needs of having autistic children (personal
communication, John, July 11, 2015). However, they were clearly less resilient than many of the
other families who were interviewed. John held a negative perspective of the autism diagnoses of
his children and how others have perceived them. He said, “Overall, it just sucks. I don’t wish
this on my worse enemy. Essentially, our kids are just babies and we have to help them and deal
with stares and rude people because of it,” (personal communication, July 11, 2015).
Additionally, Lee Rodriguez explained, “We are very different since the diagnosis of my son and
daughter. The families were resilient to the point of being able to adjust to their situation, but not
to the point of positively embracing it, it appeared. Life is a lot harder, but we get through it,”
(personal communication, July 12, 2015). While negative public perceptions of autism are
common, and the perceptions families as a whole or particular family members who experience
an autistic child may hinder the development of resiliency, it is difficult to determine where these
negative perceptions originate. The families in this study generally seemed to be able to adapt to
the diagnoses of their children, deal with their struggles and even form a new family identity in
large part because of a certain degree and manifestation of resiliency.
Resiliency exhibited in various ways by the study participants is not limited to the
presentation of the findings as it relates to this research question. There are many other aspects of
117
resiliency that are discussed in later sections dealing with other questions that guided this study
and themes that emerged in the study relative to them. However, the analysis of the interviews
with families clearly showed that resiliency is directly related to how family identity is
constructed.
Faith. Faith, in this instance, is associated with confidence or trust in God. This study
asked participants to share in various ways that their faith in God, rooted in their Christian
beliefs, enabled them to deal with their experiences with an autistic child. All study participants
stated they believed a god existed. Specifically, nine families expressed they were born-again
Christians, and eight expressed their faith was highly influential in how they processed and dealt
with the autism diagnosis in their family. The remaining three families expressed they had no
religious affiliation or were Catholic or Buddhist. These families shared that they felt faith was
not significant in how they processed or dealt with the autism diagnosis in their family. Families
that identified as Born-Again Christian stated that their faith in God helped them tremendously
throughout this process. Some even referenced of paraphrased biblical scriptures when sharing
their experiences. For these study participants, their faith appeared to play a vital role in the
identity construction process and helped the families get through the challenges associated with
their child’s autism diagnosis and beyond. Table two is located below and provides a detailed
over each participant family’s religious affiliation and faith influence.
118
Table 2.
Participant Family Religious Affiliation and Faith Influence
Participating Families Religious Affiliation Degree of Faith Influence
Coleman Family None Not influential
Gonzalez Family Born-again Christian Influential
Jade Family Born-again Christian Highly Influential
Juarez Family Born-again Christian Highly Influential
Miles Family Born-again Christian Highly Influential
Perez Family Catholic Not influential
Peterson Family Ed – Born-again Christian Ed – somewhat influential
Anya – None (raised Shinto) Anya – not influential
Ramos Family Born-again Christian Highly Influential
Rodgers Family Born-again Christian Highly Influential
Rodriguez Family John – Catholic Not influential
Lee – Buddhist
Smith Family Born-again Christian Highly Influential
Thompson Family Born-again Christian Highly Influential
Some poignant examples of faith and its relationship to the family experiences with
autism and family identity construction are presented below. The Thompson family was very
open about their faith and its connection to Rebecca’s medical needs and her autism diagnosis.
Chris stated that his faith enabled them to cope better with the initial autism diagnosis but also
helped their family deal all that followed. He explained, “It’s just God saying, here, I’m going to
walk with you hand in hand and I’m not going to— I’ll never leave you nor will I forsake you”
(personal communication, July 11, 2015). Chris’ wife, Hailey, provided poignant examples of
faith:
The scary thing about an autism diagnosis is that socially people perceive it in a
variety of ways. So for me, that label is very concerning that they would look at
her a certain way that I can’t control. So resting and going back to the fact that
God made her the way she is and she is fearfully and wonderfully made is
reassuring. And so I have to remember that that’s what — that’s what’s important
and that my job as her mom is simply just to come alongside her and give her the
119
best chance and to be the best steward of what God’s given me (personal
The Thompson family provided very authentic responses regarding the influence of their faith in
their experiences with autism. Their responses also illustrate the profound role faith played in
their family identity construction. Although the Thompson family’s faith was part of their family
identity prior to the autism diagnosis of their daughter, their faith was deepened and helped them
through the new identity construction process since the diagnosis.
The Rodgers family also spoke openly about the significant role faith played in their
family. Tracy mentioned, “Because of faith, well, we definitely have a greater place to look for
help and peace” (personal communication, Aug. 12, 2015). Tracy pointed out the peace faith in
Christ provides for families dealing with an autism diagnosis. Ron, Tracy’s husband, mentioned,
“As a parent, you naturally worry every day about your children. With the Lord in your life, you
have peace, and an understanding that everything in life always works itself out by the grace of
God” (personal communication, Sept. 18, 2015). The Rodgers family was adamant about relating
their autism experiences and faith to the idea of peace and trust in God. Both of those ideas were
mentioned frequently in their interviews. In their case, this clearly contributed to the construction
of their family identity after their child’s autism diagnoses.
Some additional aspects of the influences of faith on identity construction were found in
the Smith family. Rob mentioned, “Without my faith, I don’t know if I’d be here. He guides me
and helps me significantly” (personal communication, July 20, 2015). Julie, Rob’s wife, stated,
“My faith helps me know I am not doing this alone. As I work towards a new normal, I know
God is guiding me” (personal communication, July 20, 2015). The Ramos family also expressed
that faith was the cornerstone of their experiences with autism. Marcus pointedly stated, “It is the
120
strength of God that gave us the faith to get through the beginning of this diagnosis. Because of
our faith, we have no fear for the future” (personal communication, Sept. 20, 2015). Marcus
admitted that he felt so broken when his wife told him the news of Marisa’s autism diagnosis he
cried for a day. He added, “I cried initially, then I talked to my mom and she prayed with me and
I felt a lot better” (personal communication, Sept. 20, 2015). Mari, Marcus’ sister, stated
“Christianity plays a huge role in my life and I always knew that everything was going to be
okay and that there was a greater purpose in the situation. I see how positive my family is about
the diagnosis when talking to others and it truly helps people to hear about a diagnosis from a
Godly perspective” (personal communication, Sept. 20, 2015). Mari also mentioned that her faith
has helped her to look at the entire situation in a positive way, and to see the beauty of the
innocence of children with autism. Mari closed her ideas about faith and autism with, “Seeing
the progression with my niece definitely goes hand in hand with my family’s faith and prayers
for her improvement” (personal communication, Sept. 20, 2015).
The Ramos family provided rich experiences of the importance and benefits of their faith
after the autism diagnosis of Marisa. Although their experiences with their child’s autism were
initially painful and continued to be challenging, they demonstrated that faith in God can lead to
adjusting to these difficulties more easily and the construction of a positive new family identity.
The Thompson family shared how instrumental their faith in God was throughout Rebecca’s life.
Even though Rebecca has received numerous medical difficulties throughout her life, they
demonstrated that belief and faith in God help easily adjust to Rebecca’s needs due to her autism
diagnosis. The Smith family also mentioned faith in God as pivotal to their adjustment to their
sons’ diagnoses of autism. Specifically, they were adamant about sharing how their faith in God
121
helped them with this process and ultimately led to the positive construction of a new family
identity.
Overall, faith in God seemed to be an important way many of the families in this study
dealt with their children’s autism diagnosis and life involving their children subsequently. For
some families, this was a critical part of their experiences with autism and in their development
of new family identity. For others, it played a somewhat lesser role, or in the case of a few
families, no apparent role at all. It demonstrates that although families with autistic children
share many of the same experiences and challenges, families can differ in terms of faith and in
other ways in how they respond to them and construct new family identities.
Research Question #2: What communication takes place among family members about
autism that influences the construction a new family identity after the autism diagnosis of a
family member?
The construction of a new family identity after the autism diagnosis of a family member
is influenced by the communication that takes place among the family members. In sharing their
family narratives through the interviewing process, the study participants provided many
contextual clues and information about communication within the family after the autism
diagnosis. The contextual clues provided were indicators of how new family identities had been
developed. The life story approach to narrative inquiry facilitated this process. Methodologically,
narrative inquiry provided a means within a life-as-a-whole personal narrative to bring forth the
voice and spirit of this significant communicative experience. Narrative inquiry also served as a
practical and holistic methodological approach to sensitively collect personal narratives that
revealed how the lives of these families were reconstructed.
122
This section will examine significant family communication experiences identified
through the analysis of the interviews. Two subthemes emerged relative to this, struggle and
support. The theme struggle represents the communication experiences within families that
resulted in significant difficulties among family members and which influenced the construction
of family identity. The theme supportive reflects those communication experiences that were
helpful or accommodating as families dealt with their children’s autistic diagnosis and which
contributed to the construction of family identity after the autism diagnosis. Discussion of the
communication experiences of the families who participated in the study is organized around
these two subthemes.
Struggle. Struggle typically is associated with trying hard to achieve or deal with
something that is difficult or may cause strife. It is a term or an idea that also often acknowledges
that someone makes a great effort to accomplish something despite the difficulty. It generally
reflects communication experiences of many study participants as they dealt with an autism
diagnosis in their family and developed a new sense of family identity. The families who were
interviewed in the study all struggled to some degree and in various ways to the autism diagnosis
of their children and during the reconstruction of their lives and family identity as a result. The
communication experiences that they shared during or could be inferred from the analysis of the
interviews reflected this. Some interviewees not only expressed the difficulties they had
experienced in this respect but were noticeably emotional when describing their communication
experiences. Hartley et. al (2010) noted that the news of an autism diagnosis is difficult for
parents to hear, adapt to and share with others (p. 451). This was very evident among the families
in this study.
123
The Juarez family provided an extended family perspective to the study. Communication
within the family reflected the struggles they experienced when their niece Tilly was diagnosed
as autistic. Sonny mentioned how he mentioned his niece’s ‘odd behaviors’ and this casual
mention offended his brother. This communicative experience helped Sonny realize how
sensitive his niece’s autism diagnosis was to his brother’s family (personal communication, Oct.
15, 2015). Sonny clarified that this situation brought forth awkward interactions between him
and his brother for a while. However, once they discussed it, he made a point of never
insensitively bringing up topics or making statements about Tilly that would hurt his brother or
other family members again. Sonny stated, “I learned the boundaries, in a hard way, but I learned
how sensitive this was to my brother and his wife,” (personal communication, Oct. 16, 2015).
This incident, its negative aftermath, and the resolution of the situation apparently deeply
affected Sonny. He was emotional when he explained the interaction. He mentioned that he and
his brother were very always very close, and could talk about anything without limitations.
However, going through this situation was disheartening for him, because he learned
communication dynamics with his brother had changed as a result of Tilly’s autism diagnosis.
This seemed to be a critical realization that contributed to the development of the family’s new
identity.
The Rodriguez family also referred to communication experiences that appeared to
influence their identity reconstruction. As mentioned previously, Lee is of Vietnamese decent
and John is Mexican. They both acknowledged how different their parent’s cultures were from
American culture, but more specifically, Lee and John’s family culture were distinct.
Communication about the autism diagnosis, in this family, centered a great deal on disbelief
expressed on the part of both sides of their extended family. “My mom thought that my son just
124
needed to be disciplined. This surprised me I thought for sure since she was born here (in the
U.S.A), she would understand something like this” (John, personal communication, July 12,
2015). John indicated that he wanted his mother’s support after the autism diagnosis, particular
after he and his wife received the news. Believing at first that the diagnosis meant, “My son
would be like Rain Man,” he sought his mother’s support but, “She shut it down.” He added, “I
guess, thinking about it now, that’s how she dealt with it [autism diagnosis], but I learned the
only one that knows what I am going through is Lee” (personal communication, July 12, 2015).
John provides a good communication example of how the news of an autism diagnosis
can be processed and acted upon. In his case, he sought consolation from his mother but her
reaction led to his limiting to whom he confided with about his children’s autism diagnoses.
John’s wife Lee had a similar experience. Lee tried to communicate with her parents about her
children’s autism diagnoses, but their language barrier made it difficult. Since her parents spoke
limited English, she had to tell them in Vietnamese which was problematic in itself but was not
the only communication obstacle. She mentioned, “They tried to get it [the autism diagnosis], but
they don’t fully understand because they’re still kind of in denial” (personal communication, July
12, 2015). Lee’s parent’s denial of the diagnosis resulted in a complex situation in meeting the
needs of Johnny and Sarah that arose after the diagnosis.
Lee explained: “My mom tells me things like, ‘there’s nothing wrong you know’.
And I always hear, like, my mom tell me, ‘maybe you know, you didn't talk to
them enough’ and ‘you’re too busy with your career,’ it makes me feel like I’m
not enough, and — I feel hurt because – I didn’t do anything to cause the autism
and she blames me” (personal communication, July 12, 2015).
125
This experience that Lee shared was very moving for her. As she recalled this situation she cried
and explained that she only had John to rely on when it came to the care of their autistic children.
She stated that she felt very alone throughout this process. However, she also pointed out that she
and John had worked hard to create a positive family life for their children, regardless of the
limitations caused by their autism. Sadly, Lee and John said they do not regularly see their
extended families, because of their refusal to accept the autism diagnoses of both children.
The Rodriguez family’s communication experiences with their extended family members
were difficult and seemed to have significance influence on a new family identity they
developed. Their relationships with both sets of grandparents changed or became strained
because of the circumstances. Yet John and Lee’s bond to each other appeared to gain strength.
However, because of the strain involved in communicating with their parents, the couple's
perceptions of their experiences since the autism diagnoses of Johnny and Sarah often seemed to
be jaded with negativity. On the other hand, these communication struggles seemed to have
made Lee determined to have a positive family life or new identity.
The Thompson family shared somewhat similar communication experiences that
influenced their new family identity construction. Specifically, Hailey mentioned throughout the
interview how generally difficult it was to obtain support from her extended family members.
For example, she mentioned, “My dad just really didn't understand, just didn’t know about it
[autism], and couldn't comprehend the concepts I explained to him about the disorder” (personal
communication July 11, 2015). Additionally, she said, “I don't know what their perceptions are
of autism or how they define it, and so I don’t want them to take a misperception and apply that
to her. I want them to see Rebecca for who she is” (personal communication July 13, 2015). In
follow-up interviews, Hailey said that her father continued to show disdain towards the idea
126
Rebecca had autism. She explained, “He doesn’t embrace it and occasionally makes comments
about the lack of appearance of disciplining her” (personal communication Oct. 10, 2015).
Hailey’s husband, Chris, was less open to communicating with family members about the
autism diagnosis. He stated, “Her [Rebecca’s] needs, because of her situation, are on a need to
know basis. I don’t tell everyone in my family all of her needs all the time – just as they interact
with her and need to know certain things” (personal communication July 11, 2015). Influences
on this family’s identity also were shaped by communication experiences that occurred before
Rebecca was diagnosed as autistic. As described in the previous chapter, Rebecca’s significant
medical needs made it difficult for the medical professionals who were treating her to determine
reasonably swiftly that autism was the problem, despite Hailey’s insistence that it was. Since the
diagnosis took over a year to receive, the family displays defense mechanisms in how they
communicate about Rebecca’s behaviors to their family. Resistance they also experienced from
their family members prior to the autism diagnosis contributed to unwillingness to communicate
with them after the diagnosis. These communication challenges they faced with family members
clearly influenced the family’s identity construction process as a whole.
These families’ stories about the communication experiences they had with family
members regarding an autism diagnosis in the family illustrate not only the struggles in
communicating that can emerge but how important this can be to the process of constructing a
new family identity.
Support. There are many different definitions of support. In this study dealing with
family’s experiences with children in their family diagnosed with autism, support is defined as
giving help or holding up another. It is also involves keeping someone from losing courage, as
well as to uphold or defend another’s cause. Specifically, it is related to communication
127
experiences. As it pertains to support, many of the families revealed that they had
communication experiences within the family that were positive or uplifting or which offered
help and encouragement to other family members that were significantly influenced by the
autism diagnosis in the family. These supportive communication experiences seemed to have
positive and significant influences on family identity construction.
The Coleman family, for example, shared a number of communication experiences that
associated with support. Specifically, Shawn mentioned his younger siblings often felt their
autistic brother was the favorite because of his significant needs. However, Shawn said, “I
worked hard to explain to them that he has different needs and that we all need to help him. Once
I did this their attitudes changed towards my brother with autism” (personal communication,
Sept. 18, 2015). This positive interaction seemed to have an important influence on family
identity construction for the family as a whole. Sue, Shawn’s mother, said, “Overall, the family
has been supportive of my autistic son’s needs. They have been willing to adjust family
gatherings to meet his needs and family functions haven’t changed much” (personal
communication, Sept. 12, 2015). While Sue stated that family functions have been positive since
the diagnosis, she also mentioned that not everyone in the family truly understood what her
immediate family deals with as a result of the diagnosis. Additionally, she shared that she and
Shawn shared the bulk of the care for her autistic son and they were generally very private
people (personal communication, Sept. 12, 2015). This information indicated that while the
Coleman’s extended family had shown support, keeping them involved in family gatherings, for
instance, they were not regularly a part of daily life involving Sammy. Generally, this indicates
communication experiences with extended family members can be influential in the identity
construction of the immediate family. However, when they do not extend deeply into the daily
128
interactions and care of an autistic person, their effect on the development of a positive new
identity by the immediate family can be less than it could have been.
The Perez family had unique communication experiences that relate to the support theme.
Their communication about autism and the care of Rosie, within the immediate family, was
frequent and positive. Since they had recently emigrated from Mexico to America, they did not
have frequent communication with their extended family. As described in chapter four, they
reported that in Mexico they do not regularly diagnosis autism or other similar disorders. So the
family did not regularly share information about Rosie to their extended family. Pedro mentioned
that their immediate family is involved in Rosie’s care (personal communication, Sept. 29,
2015). Carmen shared, “I am very involved with my sister’s care. Since my parents speak limited
English I attend most of her meetings” (personal communication, Sept. 30, 2015). These
statements indicate that the autism-related communication experiences among family members
generally were positive or uplifting. The Perez family did not confer with extended family
members about the care of Rosie. When they placed Rosie in a treatment center they all decided
it. Rosalba mentioned, “I didn’t want to do it if Carmen and my husband didn’t want to”
(personal communication, Sept. 29, 2015). Their willingness to make decisions about Rosie’s
care, only when the entire immediate family was in agreement, demonstrated an effort to work
together to find the best treatment options for her, and positive family communication
atmosphere demonstrated how collective supportive communication experiences can have a
significant influence on family identity construction.
The Jade family also shared communication experiences that were generally uplifting and
positive within their family. Jan and Emily were adamant about mentioning they provided open
and honest communication to Brent and his sister, Zoey. Since they began the autism diagnosis
129
process this had been their communication approach. Jan mentioned that since telling Brent he
had autism their experiences with him were, ‘night and day’ (personal communication, July 31,
2015). Jan shared, “The problems he was having caused by his autism — he wasn’t even telling
us the half of the things he was experiencing. He was just taking it on his poor little self”
(personal communication, July 31, 2015). Brent was very open about his limitations and the fact
that he was an ‘autism kid,’ since learning about his diagnosis. Emily also mentioned, “Zoey
knows about her brother’s condition in a very basic way. She’s only seven so we’ve told her he
has autism and this is why he acts the way he does sometimes, and that’s OK,” (personal
Emily also was adamant about sharing about autism publically, “I am on Facebook pages
for autism moms and families. It’s nice to go on there to share experiences and talk about how
autism impacts our lives” (personal communication, July 31, 2015). Jan stated, “When Brent is
having a meltdown, she (Emily) and I have tried to tag team the situation and that works really
well. Sometimes the other person just needs to be out of the picture and somebody else step in
and kind of help out a little bit” (personal communication, July 31, 2015). The Jade family’s
open approach to talking about autism influenced their identity construction significantly. They
were more easily able to identify Brent’s limitations associated with the autism diagnosis and
tried to work through them to help Brent.
The Miles, Rodgers, and Ramos families all shared communication experiences that
appeared to reflect support through action-oriented behavior. Ann shared, “We help out however
we can, with Jenna and her husband. Sometimes it’s just to give them a date night and other
times it’s advice about schooling or Gracie’s needs. We are there for them no matter what”
(personal communication, Oct. 22, 2015). Ann did not just offer advice but got directly involved
130
with Jenna’s family in helping her granddaughter. This twofold form of communication seemed
to be instrumental in identity construction for the Miles family. It was a family identity that
relied on helping each other.
The Ramos family also indicated that they were tight-knit and relied on each other.
Marcus mentioned, “I go to my mom for prayer. She doesn’t like to say my daughter has autism,
but she always prays for me and helps any way she can. For me, that is more important than any
advice she can give. I just need to know she is there” (personal communication, Nov. 4, 2015).
Marcus’ statement shows again that taking action rather just providing words is an influential
form of communication within the family identity construction process.
The Rodgers’ family shared that they were very upfront about AJ’s autism diagnosis.
Tracy mentioned, “Our family life is structured around AJ’s need. It is easier for us to avoid
doing things that are difficult for him. All our kids know this and that’s how we live our lives”
(personal communication, Aug. 12, 2015). The Rodgers family constructed a family identity
around the supportive actions found within their communication experiences.
This section presented results from the interviews with the families that addressed a
research question guiding the study concerned with how communication experiences within the
family with a child diagnosed with autism influenced the family’s construction of a new family
identity. Although each of the family’s communication experiences and experiences with
children diagnosed with autism were unique in various ways, these communication experiences
fell into two basic categories: communication experiences reflecting struggles to deal with or
overcome the challenges associated with autism and those communication experiences that were
supportive in nature. The findings indicated that the type of communication experience – support
or struggle – influenced the involvement family members had in the overall identity construction
131
process that followed an autism diagnosis. It appeared that the more a family struggled with
other family members, the more they isolated themselves from members and constructed a new
family identity that did not include them. In contrast, those families that experienced a great deal
of supportive communication tended to develop more positive and inclusive family identities.
Research Question #3: What communication outside of the family influences the
construction of family identity after a family has received an autism diagnosis of a family
member?
As reflected in the family stories presented in the Chapter Four, news of an autism
diagnosis of a family member profoundly affected family communication. Previous studies have
shown that parents typically seek out information or communication outside the family to help
them make sense of the autism diagnosis of a family member (Hall & Graff, 2010). This
information and communication that takes place outside the family is influential in the
construction of family identity after the autism diagnosis of a family member. This was
specifically true in the case of families that participated in this study.
Although the study participants shared a variety of particular views and experiences
related to this, two primary themes emerged. One of these was labeled, “Seeking and meeting
information needs.” Both before and especially after the autism diagnosis, the families typically
were active in their search for information about autism, its various characteristics, typical
treatments and how families could help a child with autism deal with or overcome problems
associated with the condition. As established in chapter two, seeking and making use of
information related to autism is thought to be an important influence in the family identity
construction process after receiving an autism diagnosis within the family. Additionally, as
family members in this study sought and gained information that aided their understanding of the
132
disorder, particularly as it pertained to their child, they were able to make better sense of the
autism diagnosis as they constructed a new family identity.
Another theme that came forth that was associated with this research question that guided
the study was communication with sources outside the family that contributed to family
resiliency. As presented in an earlier section of this chapter, resiliency referred to the ability of
the families dealing with autism to recover from a difficult situation. In this case, however, it
reflects many statements shared by the collective study participants regarding how
communication with those outside family stimulated the development of or required a resiliency
that aided the construction of their new family identity. For example, some families referred to
negative or stigmatizing communication that profoundly affected the family’s self-perception
and was influential towards their new identity construction.
Seeking and meeting information needs. The families’ needs for information, their
sometimes frustrating efforts to obtain it, and the relief of some anxiety some felt once they
found or received meaningful information related to the autism diagnosis of their child were an
important aspect of their experiences with autism and pivotal in their family identity construction
process. The study participants as a whole identified a number of basic sources through which
they obtained this information including print, online and entertainment media. Print media that
were identified included books, printed magazines, and newspapers, pamphlets, flyers or other
printed materials that had been mass distributed. Online media consisted of Internet sources. This
included social media, blogs, websites, digital magazines or newspapers, as well as online video
content. Entertainment media consisted of information contained in films or television broadcasts
that were intended to entertain, but provided valuable information about autism, or families
dealing with profound issues that were similar to autism. These television shows, documentaries,
133
or films that resonated with families and seemed to be influential to their family identity
construction process. The families either sought out each type of media or were given or
recommended the specific type of media – blogs, film, print magazine, or others – from a friend,
family member, or healthcare professional. All families stated they sought information after the
news of the autism diagnosis in their family. However, the degree to which families sought and
consumed information related to autism or raising a special needs child varied significantly
among the interviewees. Nonetheless, there was strong evidence of information needs being a
major theme within the study.
The Peterson family stated that prior to the autism diagnosis of their niece, Mariah, they
did not know much about the disorder. Ed was poignant about telling that he and his wife, Anya,
sought information after the autism diagnosis in their family to learn more about the disorder.
As discussed in chapter four, Ed mentioned his only perception of autism prior to learning about
his niece’s diagnosis was through entertainment media, specifically, from the movie Rain Man.
Additionally, his wife was from Japan and did not know what the term autism meant. As a result,
the Petersons sought online media and content to fulfill their desire for information about autism.
Ed said, “We didn’t go to a library or buy books. We just researched it (autism) online, and that
really helped us understand what it (autism) was and how it was going to impact my sister’s life
now that she knew Mariah had autism” (personal communication, Sept. 21, 2015). Once they
gathered this information, they contacted Mariah’s mother to discuss autism and lend their help
(personal communication, Sept. 21, 2015). In this family’s case, this process was critical to their
response to the situation. Anya said, “Looking online helped me to understand autism better. I
looked at sites like AutismSpeaks and WebMd. It gave me some idea of what it [autism] was and
helped me when I talked to my sister-in-law” (personal communication, Sept. 21, 2015). She
134
added that because, “In Japan there is not autism, or at least that I knew about. We don’t talk
about mental illness like you do in America. So, I had to figure out what it [autism] was on my
own” (personal communication, Sept. 21, 2015). For the Peterson family, satisfying their
information needs appeared to be a very important influence on their identity construction after
the news of their niece’s autism diagnosis.
The Coleman family also sought information to build their understanding of autism.
Specifically, Shawn mentioned, “I learned about autism from my mom… I can’t remember
exactly when, but when I started college I started looking online for more information about it
[autism] to understand how it affects my brother” (personal communication, Sept. 18, 2015). As
noted in chapter four, Sue was most dependent on autism advocacy groups as a source of
information about autism. She felt that was the most reliable source when she first learned about
her son’s autism diagnosis. It also is important to note that she said she used it to help others that
wanted to learn about autism (personal communication, Sept. 18, 2015). The Coleman family’s
search for information helped them process the autism diagnosis and was influential as their
family formed a new identity after the autism diagnosis in their family. Recently, Sue’s use of
information from outside the family also was used to help others outside the family learn about
autism. This form of communication with those outside the family was instrumental in the
family’s identity construction process as well. Shawn mentioned, “I like to help people learn
about it [autism]. I’ve seen my mom help a lot of people understand what autism is and I think
that’s great she tries to give back to the autism community in that way” (personal communication
Sept. 18, 2015). The family exemplified the fact that those who experience autism in their family
can use the information they search for and find during the experience to become active
135
advocates within the autism community. For this family, it in part characterized their new family
identity.
The Thompson, Rodriguez and Jade family also all shared how they sought information
through online sources and entertainment media after the autism diagnoses of their children. The
Thompson family mentioned they primarily examined online medical media, social networks,
and scholarship about autism to satisfy their information needs. Hailey, of the Thompson family,
noted, “Online is the most accessible, so it’s probably the one I reference the most” (personal
communication, Jan. 18, 2016). Hailey also shared she sought information in social networks
like Facebook, as well as medical information about autism parenting blogs, medical journals
and websites (personal communication, Nov. 5, 2015).
The Rodriguez family said they looked at online and entertainment media to learn about
autism as well. John was another study participant who mentioned that his only idea of autism
before the diagnosis of Johnny was in the movie Rain Man (personal communication, July 12,
2015). Lee, John’s wife said, “I read stuff that I found out at work. Since I am a nurse, some of
my doctor friends would give me medical information or told me what to look for online”
(personal communication, July 12, 2015). Emily, of the Jade family, mentioned, “I like to
connect with people on Facebook. I am on a lot of autism pages, and it helps to get information
from those going through what I am with Brent’s autism diagnosis” (personal communication,
July 31, 2015). These three families indicated the importance of outside communication to learn
about autism especially immediately following the autism diagnosis process. Each family also
shared that the information they sought and discovered satisfied needs they had to learn about
autism. In each case, this process of seeking and discovering information about autism or
136
interacting with others outside their family about it appeared to be influential to their family
identity construction following the autism diagnosis.
Some families acknowledged that they received information about autism from another
family member, friend or health professional. This helped them make sense of their family life
after the autism diagnosis. Rob of the Smith family mentioned, “Honestly, I don’t seek a lot of
information on my own. I just wait for my wife to give it to me. Since she works in the autism
community, we have a unique perspective about autism, and I just read the stuff she says is
important” (personal communication, July 20, 2015). Rob stated that the information he
primarily consumes was in print form and developed within the health community. He
specifically mentioned books or scholarship about autism that his wife provided (personal
communication, July 20, 2015). Marcus of the Ramos family acknowledged, “My wife gives me
information about autism. She is very passionate about researching it (autism). I couldn’t handle
it at first. It took me awhile to admit Marissa had autism, and looking for information about it
was too much for me to handle, at first. So, I only looked at what my wife said to” (personal
communication, Sept. 20, 2015). Marcus also stated that he primarily read books, parenting
magazines or some online media about autism at the leading of his wife (personal
communication, Sept. 25, 2015). Chris, of the Thompson family, concurred with Rob and
Marcus stating, “I let my wife lead with finding information. I always have. If she says this is
interesting, I’ll read it. It’s not that I don’t want to look for information. She is just always
researching something about it [autism], I just wait for her” (personal communication, July 11,
2015).
Rob, Chris, and Marcus all admitted that their wives led the process of seeking
information about autism. Marcus added, “I didn’t tell a lot of people outside of the family about
137
Marissa’s diagnosis, at first. In fact, I didn’t really talk about it outside the family for awhile”
(personal communication, Sept. 20, 2015). This statement points out Marcus’ deferral to his
wife regarding communication outside the family about autism. At least in terms of meeting
information needs, his part of the family identity construction process was dependent on his wife.
Within this study, husband’s often seemed to depend on their wives to seek information about
autism.
Extended family members in this study also typically sought more information outside
the family about autism as an attempt to provide help to their family members dealing with an
autism diagnosis. Although all extended family members stated they sought information to learn
about autism, most indicated they did so ultimately to help their family members dealing with the
disorder directly. For example, Mari, the aunt of Gracie in the Ramos family stated “I became
more interested in autism and started reading some basic information online so that I would
understand what my brother and his wife were going to be facing in the coming months”
(personal communication, Sept. 20, 2015). Pila, of the Juarez family, had similar sentiments, “As
a family member, I would seek information through social media accounts, blogs, magazines. It
was important for me to have an understanding of autism and know different types of autism.
Also, I wanted to know how to deal with autism and be prepared for certain situations with my
niece” (personal communication, Sept. 21. 2015). Both of these study participants primarily
found this information in online media. It appeared that this process and their subsequent use of
it in communicating with others in their families was a significant element of their family
identity construction process.
The Miles family also sought information about autism to help bridge the relationship
with their daughter and grandchild diagnosed with autism. They found that it helped them
138
understand their role as special needs grandparents. Ann mentioned, “I read a lot of books about
autism. I went to AutismSpeaks and found a list of recommended books to read. Also, my
daughter lent me some books she read to learn more about it. I didn’t really go online much. I
also watched the Temple Grandin movie” (personal communication, Sept. 19, 2015). Ann
primarily consumed print and entertainment media to satisfy her information needs. Richard
shared, “I read books I found at the library. I wanted to know more about it [autism] from a
scientific perspective. I am a retired biologist, so I sought information that was related to the
science of autism” (personal communication, Oct. 22, 2015). Both Ann and Richard concluded
that their desire to seek information about autism outside the family was to learn more about
autism to help their autistic granddaughter, and to determine how it would affect their family life
(personal communication, Sept. 19 and Oct. 22). This perspective showed in still another way
and set of family relationships and circumstances that communication outside the family
influences the construction of identity after an autism diagnosis in the family.
Resiliency related to communication. Resiliency as it related to communication with
those outside the family also was a discovered theme that seemed to capture what many of the
study participants shared in the interviews. The families engaged in non-verbal, symbolic and
social interactions outside their families that in some ways were related their autistic children or
directly affected their family after the autism diagnosis. Although they responded to these in
many specific ways, there appeared to a degree of resiliency that characterized the families that
resulted from these communication experiences.
The Gonzalez family discussed how they sought information to help build an
understanding of autism since learning of Dan Jr.’s autism diagnosis. However, Liza mentioned
the most influential form of communication received outside the family was from autism support
139
groups. As illustrated in their autism story in chapter four, the Gonzalez family struggled
significantly with Dan Jr.’s diagnosis. Liza and Dan’s marriage almost ended multiple times as a
result of the stress caused by having an autistic child. Interestingly, both Dan and Liza mentioned
a turning point in their family’s life was when they joined an autism support group. Liza said,
“That [attending the autism support group] was the first time, that Dan and I opened up to
anyone and it has been really good. We learned so much from the other parents” (personal
communication, July 23, 2015). Dan continued, “But going through a support group helped us
so much and is so important… when going through this process. Liza and I actually isolated
ourselves the first 10 years. We didn’t go anywhere or talk to anybody about it or get any help or
support from anybody” (personal communication, July 23, 2015). Although the process of new
family identity construction for this family first involved marital conflict and isolation, their
eventual interactions with others in the autism support group fostered a more constructive and
resilient response to their family situation and adaptation to a new normal and family identity.
Their experience showed that communication with support groups could be highly instrumental
to the process of the autism diagnosis and construction of a new family identity.
The Rodgers family demonstrated resiliency in their open communication about autism to
those outside their family. Both Tracy and Ron said they were intentionally active in telling
people their son, AJ, had autism (personal communication, Aug. 12, 2015). Additionally, Tracy
shared that she and Ron lead autism support groups to help newly diagnosed families dealing
with an autism diagnosis. As presented in chapter four, Tracy said providing support to newly
diagnosed families helped her family give back to the autism community. She also said, “You
are always learning new things dealing with this [autism]. Support groups provide a place to
learn that you are not alone and it is OK to go through the things you go through with a kid on
140
the spectrum” (personal communication, Aug. 12, 2015). Ron agreed that it was important not go
through the process alone, and there was help for everyone that looks for it (personal
communication, Sept. 28, 2015). The Rogers family illustrated how families who have
experienced an autism diagnosis can benefit by interacting with others who have had similar
experiences. They can make sense of their experiences and develop an even more positive
outlook about them by intentionally serving others with autistic children through support groups
and in other ways. They also exemplified the fact that families dealing with an autism diagnosis
are constantly negotiating new norms, and learn from one another. This further corroborates the
idea that communication outside the family is influential to the identity construction process of
families dealing with an autism diagnosis in their family.
The Rodriguez and Coleman family experiences showed that negative communication
outside the family also can exist but can be influential in building resiliency, as well as in
constructing a new family identity after an autism diagnosis in the family. John, of the Rodriguez
family, mentioned, “People stare and it’s rude, but I just think they do not know. It is annoying
that people will make comments at the grocery store and stuff. It’s almost not worth taking the
kids, but you cannot isolate them” (personal communication, July 12, 2015). His wife Lee said,
“I feel like sometimes if I tell random people about their autism they'll be like ‘oh okay’. But it
doesn’t seem like they want to know more… I’d like to educate and I’ll try, but then they’ll just
move on. They start acting like, your child is not the same is mine — it’s [autism] like a disease
or something” (personal communication, July 12, 2015). These communication experiences
outside the family shared by the Rodriguez family resulted in stigmatization, but ultimately
required resiliency on their part to move on from them.
141
The Coleman family shared similar experiences. As mentioned in chapter four, it
disturbed Sue that people stared and she considered it rude (personal communication, Sept. 12,
2015). Shawn said, “I remember my mom explaining to people a lot why my brother acted the
way he did in public. Some understood and some didn’t” (personal communication, Sept. 18,
2015). Sue explained that she learned who her real friends were after the autism diagnosis. Sue
noticed throughout her experience with her son’s autism, people either rallied around her family
to provide support or left. Specifically, she noted that some of their friends could not handle her
son’s autistic behaviors and this resulted in the loss of friendships (personal communication, Sue,
Sept. 18, 2015). Shawn and Sue’s experience with communication outside the family required
resiliency to move past it and this appeared to be an important aspect of their family identity
construction process. It demonstrates in another way that communication with those outside the
family may contribute to new identities and a new way of life for those who have experienced an
autism diagnosis of a family member.
The themes that emerged from the collective interviews with the study participants that
related most closely to the third research question that guided this study showed that
communication outside the family could be very influential in constructing a new family identity
after an autism diagnosis. Both seeking and finding meaningful information through a variety of
media forms and interpersonal communication sources can be critical to families that are trying
to make sense of and adapt to their circumstances involving a child diagnosed with autism. In
addition, interacting through participation in support groups with people who also have
experienced autism in their families, or even serving as leaders in them, can help meet
information and other communication needs. For some families in this study, these experiences
of gaining understanding about autism, sharing information and lending support to others, and
142
even becoming advocates for the cause seemed to help them develop a degree of resiliency that
was important in their process of creating a new family identity. For others, development of this
resiliency was primarily or in part the product of communication with those outside their families
that were insensitive, hurtful or isolating. This, in turn, was an instrumental aspect of their family
identity construction after an autism diagnosis.
Research Question #4: How do families communicate about autism and/or the autism
diagnosis of a family member to those outside the family?
The news of an autism diagnosis in the family often affects family life and relational
patterns. Parents of autistic children must seek a new identity to maintain meaningful roles in
society, as well as to understand cultural norms within the autism community (Caruso, 2011 &
Shtayermman, 2013). Societal perceptions about autism often create challenges for families with
autistic children. It has been reported that many families with a member on the autism spectrum
were more apt to become socially isolated from other families, because of the stresses assumed
with raising a child on the autism spectrum (Manning et. al, 2011). The degree to which a family
member communicates about autism to those outside their family varies significantly depending
on how comfortable they are with disclosing information, how well they have adapted to the
challenges of having a child diagnosed with autism in their family, and where they are at within
their identity construction process.
Two themes which addressed how families communicate about autism or an autism
diagnosis with people outside the family stood out as a result of the analysis of the family
interview transcripts. Some study participants indicated that they were inspired to serve as
advocates for the cause of autism and those with autistic children. Another motivation described
by some families was their desire to share a testimonial of faith tied to their experiences with
143
autism. Both seemed to be at work as these families formed new family identities following the
autism diagnosis in their own family.
It was also determined from the analysis of the interview transcripts and other
information collected through the research process that the further removed a family or family
member was from the autism diagnosis period, the more willing they were to communicate about
autism outside the family. This was indicative of where the family was in their new identity
construction. It was found that some seemed to have assumed new identities that were both
encouraged by and now reflected their greater willingness to communicate with people outside
the family about autism.
Advocacy. Within the study, some families disclosed they decided to share information
about autism to non-family members to advocate for autism and others having to deal with it.
This type of advocacy was either an effort to provide supportive communication about autism to
others or to dispel social stigma associated with autism. In addition, all families in the study
shared they were forced to advocate for their own autistic family member after the autism
diagnosis process. This advocacy was often related to gaining sufficient and proper care for the
autistic family member and also seeing that they had socialization opportunities. This form of
advocacy was sometimes defensive or reactive to barriers to receiving autism-related services.
The Perez family shared they constantly advocated for Rosie’s care. In Mexico, they
were shunned socially and received little help from the public for Rosie’s needs. In fact, as
mentioned in chapter four, they were not even able to receive an autism diagnosis for Rosie until
they immigrated to America. Roslba said, “I always fought for Rosie. Even when doctors looked
at me crazy – I tried to talk to them about how she was. When I got to America, people finally
listened and we got helped. Now I tell people about her and how much help we’ve gotten. People
144
need to stand up for themselves” (personal communication, Sept. 30, 2015). Carmen, Rosie’s
sister, said, “I always tell people about my sister. I am not ashamed of her and people need to
know about kids like Rosie. It helps to share about her to people so they understand how she is”
(personal communication, Sept. 30, 2015). The Perez family was adamant in asserting that they
frequently told people about Rosie’s autism to help them learn more about autism (personal
The Jade family also was very open about their communication about autism to those
outside their family. Emily explained, “We need to learn from one another, or we won’t fix how
people react to it [autism] in public. When Brent is having a breakdown, I just say he has autism
and needs some time to process things. People are usually receptive to that. We can't hide it
[autism] it is just what we are dealing with” (personal communication, July 31, 2015). Emily
shared that her ex-husband – Brent’s father – was not open to the idea an autism diagnosis in the
beginning. She felt this was because he was fearful of social pressures and isolation. She
summed it up by saying, “A lot of people don’t really know what autism is still” (personal
communication, July 31, 2015). Jan explained that telling people about autism was, “The only
way they’ll start to accept it” and, “Start to see what it is all about” (personal communication,
July 31, 2015). The Gonzalez family found it necessary to become advocates for their son, Dan.
Liza explained, “For four years, people tried to tell me my son had low intelligence. It wasn’t
until someone spent time with him that they sat down and told us it was autism. All that time
wasted. I have had to fight for him every step of the way. So, now I make a point to share how
great he is doing. It is helpful for people to know” (personal communication, July 23, 2015).
Liza’s husband, Dan, said, “It’s about being upfront with people. They’ll never learn what autism
really is if we don’t share it with him” (personal communication, July 23, 2015). However, Dan
145
stated he was not always open to sharing about autism with others. Dan said, “There was a time
where I was ashamed of my son. I resented my family and autism and didn’t tell anyone about
him” (personal communication, July 23, 2015). Throughout the interview, Dan explained how it
took him time to come to terms with his son’s autism diagnosis and eventually he realized it was
important to share with others, so they could see it could affect anyone (personal communication,
July 23, 2015). The Gonzalez family began their autism journey by sharing information about the
autism diagnosis to advocate for their son, but they later were inspired to do so in order to
support autism in their community and to help dispel social stigma.
The Rodriguez family shared that they only communicated about autism outside their
family on a need-to-know basis. This meant they only shared information to people that were
non-family members if they closely interacted with their autistic children or a social situation
warranted telling that person (personal communication, July 12, 2015). The Rodriguez’ selective
or reticent communication about autism or their children’s diagnoses appeared to be a defensive
mechanism resulting from previous incidents they experienced involving social isolation or
judgment. When asked to share examples of communication outside the family that dealt with
autism, both parents gave examples of negative social encounters where they had to defend their
children’s diagnoses or respond to comments or actions related to their autistic children’s
behavior that they perceived as some sort of social judgment.
Lee provided three examples, already shared in earlier sections or in chapter four, in
which they communicated to someone outside the family about autism in attempts to defend the
diagnosis or dispel stigmatization. For example, she shared that when they were on social outings
she was always aware of how people were looking at her children. She said, “It’s tough knowing
people stare. Especially, since we have two kids on the spectrum we get a lot of looks. I don’t
146
like to tell people anything, but sometimes have to because of the way they look at my kids”
(personal communication, July 12, 2015). The non-verbal interactions she’s experienced resulted
in verbal social interactions that appeared to be a protest to defy social stigma associated with
autism. Lee shared a desire to educate others about autism but explained she never really had the
opportunity to do so. John, Lee’s husband, stated, “I really don’t like to talk about it much.
People don’t really care. It seems they just ask to be nice. When I do share it’s usually because
someone is staring or said something about one of my autistic children” (personal
Extended family members in the study tended to defer to the parents of autistic children
in their families for approval to discuss autism outside the family. This was evident in every
extended family member interview. It appeared that extended family members treated the news
of an autism diagnosis as private information, and did not want to offend anyone in the
immediate family dealing with an autism diagnosis by speaking inaccurately or out of turn about
autism in their family. Specifically, the Peterson family did not speak about autism to their
friends or outside their family because they felt there was not a need to do so. Ed said, “It affects
my sister’s family more closely than mine. It is not my business to share, so I don’t feel
comfortable sharing it with others” (personal communication, Sept. 21, 2015). The Juarez family
also let the parents of their autistic niece lead conversation about autism outside the family.
Sonny said, “I respect my brother and his wife, so I keep this matter private. It is their daughter
and they should be the ones to share her story” (personal communication, Oct. 15, 2015). The
Miles family mentioned they discussed autism with people outside the family if the opportunity
presented itself, but did not disclose much. Ann said, “I tell people I have a granddaughter with
autism, and that she is doing great. That’s it. I let my daughter share the rest” (personal
147
communication, Sept. 19, 2015). Richard, on the other hand, stated, “I chose not to discuss it
with anyone. Gracie is a child and people do not need to label her – life is hard enough”
(personal communication, Oct. 22, 2015).
Overall, communication outside the family about autism or the autism diagnosis among
these study participants was, for many, prompted by a desire to advocate. This advocacy was
primarily to share information about autism that was supportive in nature or to defend and dispel
social stigma associated with autism in public. Extended family members unequivocally deferred
primary communication about autism that took place outside the family to the parents of the
person with autism in the family. This was not surprising. The sensitive nature of medical issues
and life altering diagnoses, such as autism, are typically left for the immediate family to share.
The one instance extended family members did not abide by this was to share autism as faith
testimony. This will be explored in the next section.
Faith. Other than to serve as an advocate for autism by supporting others that had
experienced it in their families, helping to erase public misperceptions about it or advocating for
their own child with the disorder, the only other reason to communicate to those outside their
family that most of the study participants revealed was to share their autism experiences as a
testimony of their religious faith. As previously discussed in the findings related to the first
research question that guided the study, faith was described as the influence and connection of a
spiritual relationship with God, and the role that plays in how families construct identity after an
autism diagnosis. Their faith in God played a vital role in their perceptions about autism.
However, this also encouraged them to share testimonies that related to their experiences with
autism to people outside the family. Some participants indicated they were more open to
discussing autism or the autism diagnosis of a family member with people outside the family if
148
they could share it as a testimony of their faith in God. This helped them work through their
hesitation to discuss autism in any way with others outside the family.
The Ramos family was adamant that Marissa’s progress with autism was a matter of
faith. Marcus shared that for a period of time he did not want to acknowledge his daughter had
autism to those outside the family. He said, “I thought people would think poorly of her, and it
was the only way I could protect her. So, I didn’t talk about it” (personal communication, Sept.
20, 2015). Marcus continued by saying, “Now I share the progress Marissa’s made as an
example of faith. I know God helped her overcome many things she struggled with because of
the autism, and it’s important to share how he’s healed her” (personal communication, Sept. 20,
2015). Mari supported this idea by saying, “I have seen the progress from when she was first
diagnosed. It is a very inspirational testimony, and informative to people who are not aware that
there is so much help for these children” (personal communication, Sept. 20, 2015).
The Thompson family shared that in their experiences with Rebecca, faith was always a
topic of conversation with people outside the family. Hailey said, “We didn’t know how long we
had with Rebecca in the beginning, because of her medical needs. Her entire life is one big
testimony of faith” (personal communication, Nov. 5, 2015). Chris mentioned, “God has just
taken this and opened up so many doors for us and so many doors for her. Even just witnessing
to two nurses and doctors at the hospital and just being who she is. We always share her life as a
testimony to those we don’t know” (personal communication, July 11, 2015). Chris did
acknowledge that he did not really discuss Rebecca’s challenges with autism unless the situation
merited it. Yet he stated that he looked for opportunities to share it as a testimony, because of the
enormous calling he feels God has on Rebecca’s life (personal communication, July 11, 2015).
149
The Jade family was another family that exemplified a desire to share their experiences
with autism in their community as a testimony of their religious faith. Jan said, “We both are
women of faith who just really rely on the Lord to guide our lives in every way” (personal
communication, July 31, 2015). Jan discussed that she shares Brent’s progresses and the entire
autism diagnosis process as a testimony to those outside the family. Jan mentioned, “Emily
struggled to get a diagnosis of autism for Brent. Each step of the way we prayed and the Lord
heard us. I share that with people that God will answer prayers and help your family” (personal
communication, July 31, 2015). Emily mentioned, “I think I try to instill in him the importance
of what we believe as a family and that when we share his journey it is a testimony of how God
has helped him. It’s really important for people to know that God can help you in this type of
situation” (personal communication, July 31, 2015). The Jade family provided insight regarding
not only how religious faith or faith in God may motivate families with a child with an autism
disorder not only to communicate openly outside their family about autism, but that the autism
journey can be declared to others as a matter of faith and answered prayer.
The key themes that emerged from the collective interviews with the families that
participated in this study were organized in conjunction with the four overarching research
questions that guided the study. This clustering of the families’ responses to themes and patterns
addressing these questions, but with recognition of outlying ideas also found in the analysis,
provided a holistic view and understanding of the lived experiences of the twelve participating
families, as they dealt with an autism diagnosis of a family member. In the next chapter
conclusions about these family’s experiences and the implications they have for scholarship
related to this area of study will be further discussed.
150
Chapter Six: Discussion
The inspiration for this study began with an intrinsic desire to know more about how an
autism diagnosis affects families. As a parent of a child with autism, initial explorations related
to quality of life after an autism diagnosis began to satisfy personal information needs. That
initial exploration also served as a catalyst for learning about the experiences of other parents
and families who had tried to make sense of an autism diagnosis of a child in their family and the
effects this had initially and thereafter on family identity. It also led to the discovery that family
communication dynamics and family identity construction related to it was an underexplored
area of study in the context of initially receiving and autism diagnosis within the family and its
ongoing aftermath.
To help meet this need for scholarly research, the purpose of this study was to explore
and gain many specific insights about how families construct new identities after the news of an
autism diagnosis in their family, what type of communication within and outside the family
influences the identity construction process, as well as considering how families communicate
about autism or the autism diagnosis of a family member to those outside the family. The lived
experiences of a variety of families who had to deal with the news of and adapt to their
children’s autism disorder were examined using a qualitative research approach that involved in-
depth interviews with each of them. In chapter four, each family’s story in dealing with their
autism experiences was shared. In the previous chapter, key findings that emerged from analysis
of the collective interviews with study participants were presented, in order to address the four
research questions that guided the study. In this chapter, communication involving families that
have experienced an autism diagnosis of a child is explored as an identity construction
experience and a discussion of the major findings is presented. This is followed by a discussion
151
of theoretical and methodological implications based on the study findings, as well as study
limitations, directions for future research, and advice for healthcare and educational
professionals.
Experiential Communication
A phenomenological research perspective, which was used in this study, “Makes a
distinction between appearance and essence, between the things of our experience and that which
grounds the things of our experiences” (Van Manen, 1990). This type of research consists of
reflectively bringing into nearness that which tends to be obscure, that which tends to evade that
intelligibility of our natural attitude of everyday life (p. 32). This study shared the lived
experiences of families that have a family member with an autism diagnosis. Through narrative
explorations, stories emerged that revealed the families’ communication experiences with
autism. Among these family stories, a number of themes emerged that related to the four
research questions that guided the study. For each of the families, it was clear that their
communication experiences were a highly important influence on the family identities they
constructed in the time during and following the autism diagnosis they experienced involving a
child in their family.
The idea of communication as an experience is not uncommon. The ritualistic view
contends that communication is directed not toward the extension of messages in space but
toward the maintenance of society in time; not the act of imparting information but the
representation of shared beliefs (Care, 1985). This experiential view of communication further
describes the act of communicating as the desire to draw persons together in commonality and
fellowship (p. 210). Communication experiences shared by the families in this study also offered
an indication of how families dealing with an autistic child in their family come together as a
152
result of this, and in some case bond with others outside the family who have had similar
experiences with autism. Collectively, these experiences shared by participants in this study also
helped explain how families constructed new family identities as a result of their common
interest – autism.
Discussion of Major Findings
This study determined that families do construct a new family identity after the autism
diagnosis of a family member. Communication-related factors contribute greatly to this. The
findings from this study contribute to scholarly discussion within the family communication area
of study regarding how families deal with health issues and particularly the communicative
experiences involving a child with autism in the family. Family identity is a dynamic
communicative experience of creating and maintaining a collectively shared sense of the
meaning within the family and within society, as presented in chapter two. This section further
discusses the family identity construction process in three ways; (1) family storytelling as social
construct to identity construction (2) reframing the family minimizes social abstraction after the
news of a child’s autism diagnosis, and (3) a number of common factors influence how families
decide to communicate about autism with various members of their family and with those
outside their families and these factors are influential in their family identity construction
process.
Family Storytelling as a Social Construct to Identity Construction
Families often use stories to communicate about their family identity, norms and culture
(Huisman, 2015). The first research question in this study considered how families constructed a
new family identity. Many families, in the study, utilized storytelling as a method to share their
family’s experiences with autism. It was determined that family stories are told differently by
153
members depending on the particular settings and persons they are sharing the story with
(Langellier & Peterson, 2006 & Huisman, 2015). It was found that extended and immediate
family members were both affected greatly by the news of child’s autism diagnosis in the family.
Additionally, family culture played a significant role in the processing of the autism diagnosis in
the case of both extended and immediate family members, and as they related with each other.
Typically, parents shaped communication about autism to accommodate family cultural norms
when first sharing the news of the diagnosis to extended family members. Later, they were not as
sensitive to family culture when communicating about autism. The adaptation of family stories is
common to accommodate cultural norms and expectations (Huisman, 2015 & Jorgenson &
Bochner, 2004).
As discussed in chapter five, there were four factors that influenced family identity
construction: (1) grief was experienced with the news of a child’s autism diagnosis in the family,
(2) stigma associated with a child’ autism diagnosis or behaviors was experienced by families
within the study, (3) resiliency was forced or naturally assumed by parents as a result of their
child’ autism diagnosis, and (4) testimonials of faith were profoundly influential in the identity
construction process for many families dealing with an autism diagnosis. The four factors shaped
participant families’ autism stories and ultimately shaped their new family identity construction.
For example, the Rodgers family took on the role of autism advocates within the autism
community. These experiences allowed them to share their stories about autism within their
family. They told stories about their experiences with their son AJ to help newly diagnosed
families experience commonality within the autism community. This type of identity
management through storytelling is often completed to maintain an ongoing interaction with
members of a group (Mokros, 2003). The Perez family mentioned they did not speak much about
154
Carmen’s autism diagnosis because many of their extended family members did not accept her
diagnosis. This situational communicative behavior was completed to maintain an ongoing
storyline with extended family members. It also demonstrated that family identity is not static or
permanent because members of a family jointly adapt the construction of their family identity
through a variety of family stories (Huisman, 2015 & Galvin, 2006).
The study also determined communicative reactions to the autism diagnoses were
influenced by parental perceptions of their child’s autism diagnosis. In addition, it was found that
families who had existing knowledge of autism or experienced significant family changes prior
to the diagnosis communicated more effectively within and outside the family about their
family’s autism story. Existing knowledge of autism also helped minimize communication and
new identity development problems. This finding is supported by what scholars have learned
about relational identity and its influence. One’s relational identity is essential to relationships
and communicative experiences within relationships (Pei-Wei, 2008). Additionally, Bellah et. al
also noted that identity is constructed and maintained through social interactions and
interpersonal communication (p. 224). Wood (1982) contended relational identity, “Arises out
of communication and becomes an increasingly central influence on individual partners’ ways of
knowing, being, and acting in relation to each other and the outside world” (p. 75). Wood’s
assertions are exemplified by experiences shared by families within this study.
Specifically, the Jade family dealt with divorce prior to the autism diagnosis of Brent.
The Jade family’s experience with divorce helped the family construct positive communicative
influences that shaped their perceptions about autism during the diagnostic period, as well as in
their new family identity construction process. Relational identities within the Jade family
provided the opportunity for family members to innately know how to communicate about
155
autism, within and outside the family, because of their common experiences with great family
change resulting from their divorce. Additionally, the Jade family had prior experience in telling
difficult family stories associated with the divorce. The Thompson family also experienced
significant medical challenges and experiences with Rebecca since her birth. While they received
negative communication regarding the autism diagnosis from their extended family members,
their family resiliency and relational identity aided in the positive construction of a new family
identity after the news of an autism diagnosis. Their prior experiences with identity construction
and sharing of their family’s medical stories before the autism diagnosis of Rebecca contributed
to the family identity they developed after it.
Some families dealt with negative communicative influences that were a result of sharing
their family’s story about the autism diagnosis within their family. These negative experiences
greatly influenced their identity construction process. They had developed pessimistic
perspectives which were reflected in the newly constructed identity that emerged. Phillips and
Schrodt (2015) stated that individuals adapt their communicative behavior in ways that maximize
or minimize individual and group differences. Individuals will use non-accommodative
behaviors as a way of distancing themselves from their conversational partner as divergent
behaviors are frequently destructive in nature and linked to negative outcomes (p. 637). For
example, the Rodriguez family shared extensively how they wished they had not been affected
by autism in their family. They also explained how their perceptions of their quality of life
significantly diminished after the autism diagnoses of both of their children (personal
communication, July 12, 2015). Their communicative experiences in sharing the news of autism
diagnoses both within their family and outside their family were negative. Their efforts to adjust
to the situation resulted in frequently destructive communication within the family and
156
distancing themselves from people outside it. John mentioned throughout the interview how he
currently was able to deal with where he was in life but was not happy with how autism had
changed his family’s quality of life (personal communication, July 12, 2015). Hall & Graff
(2010) contended that the entire autism diagnosis period has a profound influence on the quality
of family life among affected families (p. 23). This was apparent in the case of each family that
participated in the study. However, some families developed a more optimistic view of their
experiences, while, others, as exemplified by the Rodriguez family and their communicative
experiences after the autism diagnoses of their children, constructed a family identity that
seemed to suggest they had adapted to their circumstances but had been unable to embrace them.
The identity that Gonzalez family had constructed over the ten years since their child
received an autism diagnosis also was greatly characterized by pessimism. By eventually joining
an autism support group, their negative feelings about experiences with autism within their
family were alleviated to some degree. As described in chapter four and five, their son’s autism
diagnosis was responsible for nearly ending their marriage. Dan shared how he resented his wife
and alienated his son for years because he could not accept his son’s autism diagnosis. Divorce is
not uncommon among couples after receiving an autism diagnosis for their child (Hartley et. al,
2012). The Gonzalez family, like the Rodriguez family, constructed a new family identity that
was shaped by extremely negative communication influences and was long lasting. However,
since identity can be managed and constantly negotiated throughout social perceptions and
situations, the Gonzalez family was able eventually to engage in positive communicative
influences that helped construct a healthier family identity.
Burkett, Morris, Manning-Courtney, Anthony & Shambly-Ebron (2015) determined
experiences in the care of raising a child with autism and the news of an autism diagnosis
157
influenced the quality of life of a family. (p. 3245). Curaso (2010) corroborated this contention
by discussing societal norms significantly influenced parental perceptions of their child’s autism
diagnosis (p. 645). For the families that participated in this study, parental and other family
members’ perceptions of their child’s autism diagnosis and communication experiences related
to it, considerably negative in some cases and more positive for others, clearly had a
considerable bearing on the construction of a new family identity process for each of them
(Rodgers, 2015). Family identity, as confirmed in this study, is an internal relational process, as
well as an external process. Family members construct their identity within the cultural
expectations of those the family it associates with to develop their autism story (Huisman, 2015
& Blum-Kulka 1997). The autism stories shared within and outside the families were developed
as social constructs within their family identity construction process.
Reframing the Autism Family
Reframing the family minimized social abstraction after the news of a child’s autism
diagnosis within the study. As mentioned previously, reframing as it relates to this study involves
restructuring familial expectations after the autism diagnosis of a family member (DeGrace,
2004). Reiss (1981) asserted that family’s experienced social abstraction with news that greatly
disrupted their family’s currently negotiated family identity (p. 207). Since social abstraction
considers the abandonment of current family norms in the midst of a crisis, this section further
discussed how communication within and outside the family was influential in the family
reframing period, as well as how this mitigated social abstraction (p. 210). The family is an
activity system involved in nurturing and developing its members. This includes family
formation, socialization, and protection of vulnerable members in order to shape, or mediate
actions and interactions within society (Patterson, 2002 & Canary 2010). Families’ engage in
158
ongoing behaviors through which they produce, reproduce and sometimes transform social
structure including norms, meaning and authority as contradictions to pre-existing family norms
emerge (Giddens, 1984). Communication, within and outside the family, can create these
contradictions. As a result, family norms can be reframed and a new family identity can be
constructed.
Within the study, communication that took place within the family and outside the family
were both influential in the identity construction process for families dealing with an autism
diagnosis in their family. Hoogsteen & Woodgate (2015) found that parents in rural communities
in Canada relied on talking as a coping strategy to deal with their child’s autism diagnosis (p.
136). Some families in this study restructured their personal meaning of stigma to reduce social
isolation and enhance their communicative behaviors outside the family as they adjusted to the
autism diagnosis of their child. These communication experiences were in some respects unique
to each family. However, all the families held greatly affected perceptions of behavior and
quality of life during and after the autism diagnosis of a child in their family.
Specifically, many families constructed identities that removed family members from
their life if their communicative experiences with those family members were not supportive to
the families’ new reality resulting from an autism diagnosis. This form of social abstraction was
utilized to mitigate the news of the autism diagnosis, as family’s reframed their familial
expectations prior to the construction of new family identity (Reiss, 1981 & Altiere & Von
Kluge, 2009). For example, the Juarez family experienced tension and rejection from the parents
of their autistic niece. Communication outside the family about Sonny’s autistic niece had caused
conflicts (personal communication, Oct. 15, 2015). This temporary social abstraction was
alleviated when Sonny’s brother reframed his family after discovering how his communication in
159
the wake of Tilly’s autism diagnosis had caused family conflict. The Smith and the Rodriguez
family mentioned they did not solicit much help from their extended families, because of
negative communication they had with them about their autistic children’s behaviors and
diagnoses (personal communication, July 12 & 23, 2015). This social abstraction was in part a
defensive mechanism, but also aided in the construction of a new family identity.
Communication that took place outside the family was influential in the new family
identity construction process as well. To reduce dissonance created within awkward or
uncomfortable communication experiences outside the family, many participants utilized social
abstraction and isolated themselves from society as they constructed their new family identity.
This is not an uncommon practice in families dealing with an autism diagnosis or another type of
invisible disability. Many families socially abstract themselves from uncomfortable situations to
minimize awkward interactions as they reframe the family (Altiere & Von Kluge, 2009,
DeGrace, 2004 & Swinth et. al, 2015). Families in this study constructed new identities that were
in part reflected by and developed regardless of whether or not there was social acceptance of the
autistic family member outside the family.
Hall & Graff (2010) also contended that many families experience social isolation from
their peers, because of a lack of peer understanding of their child with autism (p. 200). This also
was evident in this study. The Coleman family, for example, continually mentioned the loss of
friendships as a result of the autism diagnosis of Sue’s son (personal communication, Sept. 18,
2015). The Perez family mentioned nonverbal expressions and communication, like staring and
disapproving body language, which caused the family to not return to certain social settings. This
behavior adaptation reflected the newly constructed identity they had developed to minimize the
continual need for reframing the family and to avoid further social abstraction.
160
Many families gathered information about autism to satisfice needs and to make sense of
their situation. They used the information to bridge the gap of non-existing information or
communication about the autism topic (Manusov & Keely, 2015). Communication outside the
family, in the form of media or media content, was significantly influential in the identity
construction process for families within the study. The information derived from these sources,
which was sought by parents or other family members or provided for them, was influential in
their coping process after the immediate news of a child’s autism diagnosis (Romo, 2015).
Families utilized the process of information gathering to aid in the identity construction process.
Specifically, information gathered was influential in how families perceived the quality of life
after the autism diagnosis of a family member and the prognoses for autistic individuals within
families. Families tended to weight communication experiences, rather than type of
communication, involving the autistic family member as influential to the identity construction
process. Reframing the family was a practiced assumed by many families prior to and within the
identity construction process. Additionally, social abstraction was experienced by all families in
some way within their initial experiences of sharing their autism stories within and outside the
family.
Factors that Influence how Families Communicate about Autism
The last research question considered how families who have experienced an autism
diagnosis and its aftermath in their family communicated with those outside the family. While
there were a variety of factors that seemed to influence the families in this study’s willingness to
communication with those outside their family regarding their autism experiences, two
motivations for doing so stood out, as reported in the previous chapter—communicating as an
advocate for their own autistic child or others who had experienced autism in their families and
161
communicating as a testimony of faith. The results of the study also showed that the families’
prior communicative experiences related to autism influenced how open they were to
communicating about autism. Specifically, if a family had significant positive communicative
experiences about autism they were more willing to share their experiences with autism in
public, including serving as an advocate for the cause and/or sharing their religious testimonies
about their autism experiences. Similarly, if prior communicative experiences were negative,
families were less likely to share their experiences with autism in public.
Cantwell, Muldoon & Gallaghet (2015) determined socially stigmatizing experiences
caused parents of children with autism and intellectual disabilities with to display depressive
symptoms regarding socializing and reduced communicative behaviors (p. 950). This was
evident in this study as well. As reported in chapter five, the Rodriguez family chose not to share
their children’s autism diagnoses with others within social situations for this reason (personal
communication, July 12, 2015). The Ramos family also avoided communicating with those
outside their family because of unpleasant experiences in public they and their daughter had
previously (personal communication, Sept. 18, 2015).
On the other hand, it was interesting to find that some families had positive past
experiences in openly sharing their autism experiences in social settings outside their families or
felt compelled to let others know about these experiences or help them on their own journeys
with an autistic child. The Jade family spoke very positively about their willingness to share
experiences about Brent’s autism diagnosis and how they coped with it. Specifically, Emily
mentioned her experience with autism parents online, prior to Brent’s diagnosis, was positive
and helped her embrace the autism community (personal communication, July 31, 2015). The
Rodgers family’s past communicative experiences within their family tended to be positive. This,
162
and embracing their son’s condition, more willingness to discuss their son’s autism diagnosis
more openly outside the family. (personal communication, Aug. 12, 2015).
These shared experiences by the participants in this study were consistent with what has
been observed by scholars previously. Manning, et. al. (2011) asserted that many families
experienced social stigma as a result of the autism diagnosis in their family (Manning et. al,
2011), while Cantwell, et. al. (2015) concluded that social stigmatizing interactions with autism
were influential in a family member’s decision to communicate about autism (Cantwell et. al,
2015). Among many of the participants in this study, it was quite clear that fear of social stigma
and isolation was a major factor in the willingness to communicate about autism with those
outside their families. However, some families had found reasons to or were predisposed to do
so, prompted by the desire to support others, share their testimonies as matter of faith, further a
sense of new normalcy or to help alleviate negative effects of the autism experience themselves.
The information presented in this section discussed the major findings and scholarship
related to this study. This section considered three major findings and their relation to the
research questions within the study. Each major theme highlighted unique findings from the
study that are worthy of scholarly discourse. Specifically, each major theme related to the overall
goals sought within the study through the research question. In the following section, theoretical
and methodological influences are explored in their relation to the research question and
applicability to communication theory as a whole.
Theoretical Implications
The findings in this study provide a clearer picture of how families who experience an
autism diagnosis of a family member and its aftermath communicate with family members,
extended family members, medical and educational professionals, and others outside their
163
family, all contributing to the construction of a new family identity. For each of these families
adjusting to an autism diagnosis, this new family identity construction is a collective experience.
The results of this study also are informed by or confirmed by basic contentions of widely
utilized theories of human communication, and more specifically family communication, which
were previously discussed in chapter two.
Social constructionism. The results of this study are both explained by and contribute to
what scholars have learned about the communication and sociological theory known as the social
construction of reality or social constructionism. Social constructionism emphasizes the socially
created nature of social life. According to this theory, society is a product of humanity, as well as
an objective reality (Berger & Luckmann, 1967). Theoretically, human beings actively and
creatively produce society. Also, the world is portrayed as made or invented – rather than merely
taken for granted. More specifically, the social world is interpretive nets woven by individuals
and groups (Schutz, 1970). The theory considers the sociology of knowledge, what people
“know” as “reality” in their everyday non or pre-theoretical lives, as the central focus of society
considering the fabric of meanings without which no society could exist (Berger & Luckmann,
1967). The idea of knowledge must concern itself with the social construction of reality. Social
constructionism also considers epistemological assumptions of knowledge and how those
assumptions shape reality. Theoretically, social constructionism considers how people construct
a reality on the assumption knowledge exists first.
In the context of this study, social constructionism offers a basic way of viewing how the
communication experiences of families who faced the challenges of an autism diagnosis in their
family sought, received and used knowledge that aided the construction of a new reality, which
manifested into a new family identity. For example, the Smith family experienced the autism
164
diagnosis for both of their sons. This news resulted in a multitude of feelings that were expressed
in their interviews and shared in chapter four and five. Rob and Julie, of the Smith family,
worked through social stigma, alienation from friends and family to create a new normal for their
family (personal communication, July 20, 2015). This new normal was a result of their new
reality. Their newfound knowledge of autism and the disorder’s implications on their family
aided the construction of this new reality. Thus, a socially constructed reality influences
perceptions of family identity providing the catalyst for the emergence of a new family identity.
This also is found within social constructionism scholarship. Zartler (2014) found the
construction of reality in single-parent families was formed in part from the social perceptions of
deficits and disadvantages of family life with two-parent families serving as an ideological code
along the dimensions of normalcy, complementarity, and stability (p. 604). Ideological
perspectives of the family are shaped by societal norms and expectations that become a socially
constructed reality. Zartler’s assertions were found within this study as well. As families worked
to adapt to their newly constructed realities they were faced with new ideological perspectives.
The Peterson family, for example, sought out new information to learn about autism to better
understand their niece’s autism diagnosis. Ed, of the Peterson family, saw that his sister’s
perspectives of life changed as she learned to adapt to his niece’s autism diagnosis (personal
communication Sept. 21, 2015). This observation demonstrates an ideological shift to which
Ed’s family adapted as a result of newly shaped societal norms and expectations that came with
raising a child on the autism spectrum. Within the study, each family adapted to new ideological
code along the dimensions of normalcy, complementarity, and stability to socially construct a
new reality.
165
Within this study, families all constructed reality variously and to some degree from their
knowledge of societal perceptions of autism. Thus, the Gonzalez family, for example,
constructed a reality that involved social isolation, based on negative experiences that were
shaped into knowledge and perceptions of societal standards towards autistic people. This, as in
the case of the other families in the study, contributed to the construction of their new family
identity
Cognitive dissonance. Cognitive dissonance, a phenomenon associated with a popular
theory with origins in Leon Festinger’s work dating back to the 1950s, involves discomfort, often
manifested by mental stress, experienced by an individual who holds two or more contradictory
beliefs about something (Festinger, 1957). The theory began as an initial exploration into why
buyer’s experience remorse from overindulgence while shopping (p.57). It was determined that a
person constantly sought consistency between their expectations and reality. When someone
spent too much money on a purchase, as in the original exploration, they sought to restore
consistency between their expectations and their reality. To restore consistency, and reach a state
of consonance, a person must work to reduce physical discomfort and mental stress (p. 78). This
theory helps explain the feeling of discomfort, that is known as dissonance, that is often
experienced when an individual may be compelled to act in a way they know contradicts their
beliefs or attitudes. A person is often led to seek a resolution, known as consonance, to restore
balance as a result of the conflict. Since the inception of this theory over fifty years ago, there
have been numerous other studies utilizing cognitive dissonance within the areas of psychology,
communication, and sociology.
Cognitive dissonance provides an explanation for communicative and behavioral
reactions to dissonance found within the study. It seemed to be reflected in the families’ thinking
166
and behavior as they reacted to the communication behavior and actions of people within and
outside the family. For example, the Rodriguez family noted their extended family members
would not accept their children’s autism diagnoses because of their cultural beliefs about mental
illness. Therefore, the Rodriguez family limited interaction with family members that did not
agree with their children’s autism diagnoses (personal communication, July 12, 2015). This
demonstrates that cognitive dissonance occurred and the Rodriguez made changes to their family
life to restore consistency between familial expectations and their new reality. This restoration of
consistency was influential in the Rodriguez’ newly construct family identity.
Cognitive dissonance also emerged when other families interacted with extended family
members. In the Juarez family, Sonny mentioned his comments about his autistic niece to other
family members were not well received by his brother, the father of his autistic niece (personal
communication, Oct. 15, 2015). However, in the process of helping to shape the family’s new
reality, Sonny’s brother restored consistency by discussing the situation with Sonny. Sonny
stated this conversation resulted in a new understanding about his brother’s feelings towards
autism (personal communication, Oct. 15, 2015). This was instrumental in reaching a state of
consonance and influenced the family’s identity construction. Jones and Peisah (2015)
determined the causes of dissonance must be known in order to treat and prevent it within family
interactions and communication (p. 490). According to Jones & Peisah (2015), Sonny actively
demonstrated listening to the family member to restore consonance and normalcy within the
family (p. 490).
Families reported behaviors by strangers in public influenced their identity construction,
and at times led to social isolation. This, too, resulted in cognitive dissonance. Families in the
study who experienced this sought consonance, or to restore balance, as a result of undesired
167
behaviors experienced outside the family. For example, the Coleman family reported that after
the news of an autism diagnosis ‘you learn who your friends are,’ alluding to the idea that people
outside the family do not always respond well to autistic children or people (personal
communication, Sept. 12, 2015). Sue, of the Coleman family, stopped interactions with people
outside her family that rejected their family ideas about autism. In effect, the family sought to
restore consonance through this means.
Reiss (1981) suggested that shared family assumptions develop or are altered in times of
intense family crises (p.7). Specifically, the alteration of family assumptions is not restored until
the family has recovered from the crises --- suggestion the restoration of consonance in the
family. At that time, they will have developed a broad and coherent set of new assumptions
about the social world and the families place, or identity, in that social world (p. 7). Cognitive
dissonance provides a theoretical connection to the behavioral responses caused by
communication experiences families within the study shared. Particularly, cognitive dissonance
held most relevance concerning the influence of communication that took place within and
outside the family.
Identity management theory. Identity management theory (IMT) considers that social
influence has an enormous bearing of self-image. Thus, purporting identity is not a fixture within
reality and evolves over time (Goffman, 1967). One of the major tenants of IMT is that the
ability to communicate includes the ability to manage relational and cultural identities. Another
is that facial expressions are a determinant factor in identity management (p. 85). Specifically,
facial expressions often reveal one’s cultural and relational identities (p. 86). IMT is widely
utilized in intercultural communication scholarship, as well as sociology. This theory began as a
core theory within intercultural communication and relied heavily on scholarship that considered
168
identity and intercultural studies (Goffman, 1967 & Cupach & Imahori, 2005). Identity
management also contends communication is largely responsible for the management and
meaning of one’s identity that is constantly negotiated through communicative social influences
(Cupach, Tadaus, & Imahori, 1993). Shtayermman (2013) considered familial culture and
relational patterns within families with an autistic child and found the processing of the autism
diagnosis within family profoundly influences familial culture and relational identities (p. 244).
The establishment of a new family identity only occurs when spouses work together to create
new cultural, relational and social identity patterns within the family (p. 245). Additionally,
people constantly seek who they are within a relationship with one another or within society
(Imahori & Cupach, 2005).
This study determined how families experiencing an autism diagnosis construct a new
identity through key attributes found in grief, stigma, resiliency and faith. Identity management
theory helps explain what seems to be occurring in this process. The autism diagnosis is the
catalyst for new cultural, societal and relational norms within and outside the family for affected
family members. The identity once known by affected families is reconstructed into a new
family identity. The construction of a new family identity is accomplished through IMT.
Cupach et. al (1993) explained humans constantly negotiate identity through
communicative social influences (p. 112). Through IMT, each of their experiences with autism in
their families involving grief, stigma, resiliency and faith influenced the identity construction
process. Grief, for example, provided poignant examples of communicatively influential social
experiences that shaped the construction of identity. Marcus, of the Ramos family, mentioned
everything he knew about his daughter was wrong, according to doctors, and he grieved for the
daughter he thought he had (personal communication, Sept. 20, 2015). Marcus’ experience was
169
managed through IMT. He had to utilize IMT to help him construct new relational, cultural and
social norms for his autistic daughter after he grieved for the daughter he thought he had. The
Ramos family socially negotiated identity once their grief subsided (Cupach et. al, 1993).
Individuals perceive personal identity differently at different times across time and space
(Goffman, 1967). This suggests that identity is situational. As we consider how families
constructed new identities after the autism diagnosis of a family member, it is apparent that each
family’s new identity development was unique to their situation and yet there also generally were
commonalities in the ways they managed their identity construction process.
Contributions to Scholarship
This study focused on family communication and identity construction after a child’s
autism diagnosis in the family. This study added to the body of literature about family identity. It
uniquely considered the profound influence an autism diagnosis has on the family. Specifically,
it considered the communicative experiences families shared about autism to determine how they
constructed a new family identity after the news of an autism diagnosis. A collective family
identity has not been routinely explored or discussed in previous scholarship. Additionally, this
study added to the body of literature about reframing the family from a communicative
perspective. Various aspects of reframing the family to reduce stigma after life-changing news in
the context of an autism diagnosis were explored.
This study also examined extended family members within the context of family
communication. Although scholarly research dealing with extended family member relationships
and communication has been called for and pursued to some extent by scholars in recent years,
this study added to this area of study by examining it in the context of family communication and
autism.
170
More recently published studies have emerged that largely focus on parental perspectives
about autism including discursive influences that aid in the construction family identity, as well
as rural life in dealing with an autism diagnosis (Hayes & Colaner, 2016 & Hoogsteen &
Woodgate, 2015). This study confirmed findings in these studies that communication factors are
a highly important part of family identity construction in the autism diagnosis within the family
context and provided additional insights about how these are at work within the family and
extended family as they communicate internally, communicate outside the family and those
outside the family communicate with them. Also, this study considered the perspectives of
siblings of a child with autism. They were able to share their admiration for their parents who
assumed the role of advocates for their autistic siblings, as well as how they often became
advocates for their siblings themselves.
Additionally, this study determined that cultural background within a family or extended
family can greatly shape familial perceptions about autism and the construction of a new family
identity. For example, the results of the study illustrated what appears to be a significant lack of
knowledge about autism among family members that recently immigrated to America. This
made it difficult for first generation Americans to communicate about autism to their immigrant
parents. This largely shaped their newly constructed identities, was influential in the reframing
family process, as well as resulted in social abstraction among some family members.
While this study, making use of a qualitative research approach, yielded in-depth insights
and detail about communication and family identity when the family experiences an autism
diagnosis of a family member, there is still much to study related to this subject. It is hoped that
this study will stimulate more research on a matter of seemingly increasing importance and scope
in the United States and elsewhere.
171
Limitations of the Study
This study generated detailed perspectives from twelve families that had a family
member diagnosed with autism. The methodological construction of this study provided the
opportunity to narratively inquire about the nature of identity construction related to families
dealing with an autism diagnosis. This perspective allowed for a depth of understanding of the
identity construction process and communicative influences associated with it in the
understudied area of family communication. The families selected for this study represented a
population of families that were ethnically and culturally diverse. It also included extended
family member and sibling perspectives about communication and autism, a regularly
understudied aspect of family communication.
The study provided helpful information to extend scholarship related to family
communication and autism. However, there were study limitations that should be considered.
First, the study involved a relatively small number of participants. Within particular families,
some members were not available to participate in the study. The use of a qualitative research
approach and a small sample size limits generalizations that can be made across all types of
families who have experienced an autism diagnosis of a member of their family. However, this
study provided rich, detailed insights used a narrative perspective that afforded a deep analysis of
the participant families’ experiences that contributed meaningfully to an area of study that is in
considerable need of scholarly research
Additionally, the personal nature of the identity construction process was a limitation
within the study. Rapport and trust had to be built for family members to attempt to fully disclose
how they dealt with an autism diagnosis communicatively within the family. However, the
autism community was difficult to access despite the researcher’s association within the
172
community, as an autism parent. Lastly, the time-intensive nature of qualitative research limited
possible participants from contributing to the study and the amount of time that could be spent
with each family or particular members of them that did participate. Many potential participants
could not participate due to busy schedules and difficulty setting meetings because of intensive
therapy sessions for autistic family members. Nonetheless, those that did participate enabled
completion of a study that offers significant insights about how families communicated during
and after an autism diagnosis within their family and how this shaped the development of a new
family identity.
Directions for Future Research
Interested scholars should have a myriad of opportunities for ongoing investigation
within this area of scholarly inquiry. Future research could focus on applying different
methodological approaches to address findings that emerged from the study. There still is a great
deal to learn about communicative factors that are at work in families that experience an autistic
child within their family and how this affects their family attitudes, behavior, and identity.
Specifically, future research could further explore parental differences in adapting to an
autism diagnosis, as well as differences in the communicative experiences among parents of
children with autism. General observations about the role of mothers’ and fathers’ perceptions
about autism were made. However, further research could extend the discussion. Specifically, a
study related to maternal and paternal differences in raising a child on the spectrum,
communication regarding the autism experience, and their relative contributions to a new family
identity would extend family communication scholarship in this area of study.
Research related to sibling perspectives of having a sibling with autism and
communication related to it is needed to determine the effects of children’s exposure to autism
173
and overall well-being of siblings. In this study, there were indications that siblings were greatly
influenced by their autistic siblings and experiences associated with autism diagnosis.
Scholarship about siblings and autism is non-existent. Sibling communication is a growing area
of study within family communication. Possible studies could contend the nature of sibling
relationships with autism. However, there is much to be learned concerning sibling
communication and health issues in the family context.
Research also related to the extended family perspective further is needed to develop
extended family communication scholarship. Studies that consider how autism influences
extended family members more deeply than this study could provide bridge gaps in extended
family communication scholarship. A study that considered the grandparent communicative
experiences with adult children and their autistic grandchildren could provide another lens into
how autism diagnoses in the family influences grandparent relationships with their autistic
grandchildren. Additionally, this study found that some participants were not willing to share
information about their autistic child’s diagnosis with extended family members. A future study
that explored this idea more deeply could provide a scholarly perspective that would contribute
to family communication scholarship as a whole.
Much of the scholarship that exists about autism is medically or psychologically related.
In fact, the scholarship is related to the care and medical needs of people with autism. There
clearly is a need for more scholarship that focuses more directly on communication behavior,
needs and issues in this understudied area of autism in the family setting. Future research could
extend communicative perspectives about autism in light of worldwide increases in autism
diagnoses.
174
Heuristic Comments
As this study demonstrated, families constructed new identities as a result of an autism
diagnosis in the family. There are significant applications for this information that could help
many families that are unsure of how to begin coping with an autism diagnosis in their family
and are in need of information to help them begin to construct a new family identity.
The findings of this study have implications for families and friends of people that have
family members diagnosed with autism. First, embrace families dealing with an autism diagnosis
in their family. The news of an autism diagnosis can be difficult to process and shocking to
many. There is a need to be reminded that it is difficult to know what it is like for a family
affected by an autism diagnosis of a family member. Unintentional or intentional isolation due to
not understanding the nature of autism or not knowing how to help the affected family, only
leads the child with autism, and their family, to further isolation. It is difficult for those without
this understanding and sensitivity to the difficulties children with autism and their families face
to approach them in constructive and supportive ways. Rather, than providing unwarranted
skepticism or uninformed advice perhaps it is best to say nothing at all. Families affected by
autism want their child and family to be accepted. The study determined families desired to be
treated as they were before the news of the autism diagnosis. Normalcy was a desire for many
families in the study, as they constructed a new family identity characterized by a new form of
normalcy.
Mental health providers and pediatricians need better access to and more information
about how autism affects families. They also need to provide these families with more
information. Overwhelmingly, many families in this study expressed that they are not given
much information, if any, about autism at the time of diagnosis. Healthcare professionals need to
175
provide families with better resources to cope with the news of a possible diagnosis, and
additional resources when a formal diagnosis is made. However, mental health care providers
and pediatricians need also would be helped by additional training to better handle the influx of
children that are qualifying for autism therapies. Information within this study offers healthcare
providers indications of the kinds or information and support these children and their families
need as they engage in the process of new family identity construction as a result of an initial
autism diagnosis and all that occurs in the days and years that follow.
Educators also could gain insight from the results of this study. The autism stories in this
study exemplify the fact that there are many different conditions on the autism spectrum. Many
children on the autism spectrum are still able to excel academically and benefit from inclusion
within in general education classes. In fact, one-half of the families in this study mentioned their
autistic family member attended school in a general education classroom. There represent many
other children with autism who are similarly capable if given proper encouragement and support.
Those in a position to plan activities need a protocol in place that will remind them to design
inclusive activities for children with autism. Children with autism are still children and desire
many of the same things typically developed children desire.
This study considered how families constructed identity after an autism diagnosis of a
family member. From the findings and communication experiences shared, the narratives
reflected the desire these and other such families have for meaningful inclusion within society.
Conclusion
This study found that constructing a family identity after the autism diagnosis of a family
member is necessary for the coping and quality of life for families affected by autism.
Communicative experiences were profoundly influential in the identity construction process and
176
processing of the autism diagnosis for families. This study also determined that all family
members experienced grief associated with the perceived loss of the child they thought they had
prior to an autism diagnosis. This profoundly affected their family identity and contributed to the
development of a new family identity. At the closing of this study, much work is left undone in
the area of communication that influences families dealing with an autism diagnosis. However,
this project was offered to bring awareness about the experiences these families have and how
new family identities are constructed. It is hoped that it brings a measure of hope in informing
others about the unique and importance aspects of autism culture. Additionally, it is hoped that
the study inspires similar studies to educate, promote awareness and share values that encourage
an inclusive society that embraces children with autism and their families.
177
References
Altiere, M. J., & von Kluge, S. (2009). Family functioning and coping behaviors in parents of
children with autism. Journal of Child and Family Studies, 18, 83–92.
http://dx.doi.org/10.1007/s10826-008-9209-y
American Academy of Pediatrics (AAP). (2012). http://www.aap.org/en-us/about-the-aap/aap-

press-room/aap-press-room-media-center/Pages/Early-Identification-of- Autism.aspx
American Psychiatric Association. (1980) Diagnostic and statistical manual of mental disorders:
DSM-3. (3rd ed.). Washington, D.C.: American Psychiatric Publishing.
DSM-3-Revised. (3rd revised ed.). Washington, D.C.: American Psychiatric Publishing.
DSM-4. (4th ed.). Washington, D.C.: American Psychiatric Publishing.
DSM-5. (5th ed.). Washington, D.C.: American Psychiatric Publishing.
Anderson, K. N., Rueter, M. A., & Lee, R. M. (2015). Discussions about racial and ethnic
differences in internationally adoptive families: Links with family engagement, warmth,
& control. Journal Of Family Communication,15(4), 289-308
20p.doi:10.1080/15267431.2015.1076420
Armstrong, T. (2011). The power of neurodiversity: Unleashing the advantages of your

differently wired brain. Cambridge, MA: Da Capo Lifelong.
Asperger, H. (1944). Die "Autistichen Psychopathen" in kindersalter. Archiv fur psychiatrie und
nervenkrankenheiten.English Translation. 117, 76-136.
Atkinson, R. (1998). The life story interview. Thousand Oaks, Calif.: Sage Publications.
Autism Speaks. (2013). What Is Autism? Retrieved May 20, 2015, from
https://www.autismspeaks.org/what-autism
178
Avdi, E., Griffin, C., & Brough, S. (2000). Parents' Constructions of the 'Problem' during
Assessment and Diagnosis of their Child for an Autistic Spectrum Disorder. Journal of
Health Psychology, 241-254.
Baker, J. P. (2013). Autism at 70 -- Redrawing the boundaries. New England Journal Of

Medicine, 369(12), 1089. doi:10.1056/NEJMp1306380
Bauminger, N., & Shulman, C. (2003). The development and maintenance of friendship in high-
functioning children with autism: maternal perceptions. Autism: The International
Journal Of Research And Practice, 7(1), 81-97.
Bauminger, N., Solomon, M., Aviezer, A., Heung, K., Brown, J., & Rogers, S. J. (2008).
Friendship in high-functioning children with autism spectrum disorder: Mixed and non-
mixed dyads. Journal Of Autism & Developmental Disorders,38(7), 1211-
1229.doi:10.1007/s10803-007-0501-2
Bellah, R. N., Madsen, R., Sullivan, W. M., Swidler, A., & Tipton, S. M. (1985). Habits of the
heart: Individualism and commitment in American life. Berkeley, CA: University of
California Press
Bennett, L., Wolin, S., & McAvity, K. (1988), “Family Identity, Ritual, and Myth: A Cultural
Perspective on Life Cycle Transitions,” in Family Transitions, ed. Celia Jaes Falicov,
New York: Guilford, 221–34.
Broomhead, K. E. (2013). Preferential treatment or unwanted in mainstream schools? The

perceptions of parents and teachers with regards to pupils with special educational needs
and challenging behaviour. Support For Learning, 28(1), 4-10.
Blum-Kulka, S. (1997). Dinner talk: Cultural patterns of sociability and socialization in family
discourse. Mahwah, NJ: Lawrence Erlbaum.
Burkett, K., Morris, E., Manning-Courtney, P., Anthony, J., & Shambley-Ebron, D. (2015).
African American families on autism diagnosis and treatment: The influence of
culture. Journal Of Autism And Developmental Disorders, 45(10), 3244-
3254.doi:10.1007/s10803-015-2482-x
179
Canary, H. E. (2008). Negotiating dis/ability in families: Constructions and contradictions.
Journal of Applied Communication Research, 36, 437–
458.doi:10.1080/00909880802101771
Canary, H. (2010). Structurating activity theory: An integrative approach to policy knowledge.

Communication Theory, 20(1) 21-49.
Canary, H. E. (2012). Children with invisible disabilities: Communicating to manage family

contradiction. In L. M. Webb & F. C. Dickson (Eds.), Effective family communication
for coping with crises (pp. 155–177). New York, NY: Peter Lang
Cantwell, J., Muldoon, O., & Gallagher, S. (2015). The influence of self-esteem and social
support on the relationship between stigma and depressive symptomology in parents
caring for children with intellectual disabilities. Journal Of Intellectual Disability
Research, 59(10), 948-957. doi:10.1111/jir.12205
Carey, J. (1985). Communication as Culture: Essays on Media and Society. Technology and
Culture, 200-220.
Cappadocia, M. M., Weiss, J., & Pepler, D. (2012). Bullying experiences among children and
youth with autism spectrum disorders. Journal Of Autism & Developmental
Disorders, 42(2), 266-277. doi:10.1007/s10803-011-1241-x
Caurso, D. (2010). Autism in the U.S.: Social movement and legal change. American Journal of
Law & Medicine, 36, 483-539.
Cettina, T. (2012). Should I label my kid? Parenting Magazine, Issue 10. pp. 80-82.
Chang, T. Y., Solomon, D. H., & Westerfield, M. M. (2016). Looking for Someone to Blame:
Delegation, Cognitive Dissonance, and the Disposition Effect. Journal Of Finance, 71(1),
267-302. doi:10.1111/jofi.1231
Clandinin, D. (2007). Handbook of narrative inquiry: Mapping a methodology. Thousand Oaks,

Calif.: SAGE Publications.
180
Corless IB. (1997). Modulated mourning: the grief and mourning of those affected by
HIV/AIDS. In: Doka KJ, ed. Living With Grief: When Illness Is Prolonged. Bristol, PA:
Taylor and Francis, 105-17.
Covey, H. (1998). Social perceptions of people with disabilities in history. Springfield: Thomas
Publishing Ltd.
Cridland, E., Jones, S., Magee, C., & Caputi, P. (2014). Family-focused autism spectrum
disorder research: A review of the utility of family systems approaches. Autism: The
International Journal Of Research & Practice, 18(3), 213.
doi:10.1177/1362361312472261
Cupach, R. & Tadasu,T. Imahori, W. (1993), "Identity management theory: Communication

competence in intercultural episodes and relationships", in R. L. Wiseman and J. Koester
(eds.), Intercultural communication competence, 112-131, Newbury Park, CA: Sage.
Currie, G., & Brown, A. 2003. A narratological approach to understanding processes of

organizing in a UK hospital. Human Relations, 56: 563–586.
Davis, N., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism
spectrum disorders: Associations with Child Characteristics. Journal Of Autism &
Developmental Disorders, 38(7), 1278-1291. doi:10.1007/s10803-007-0512-z
Daniel, L. S., & Billingsley, B. S. (2010). What boys with an autism spectrum disorder say about
establishing and maintaining friendships. Focus On Autism And Other Developmental
Disabilities, 25(4), 220-229.
DeGrace, B. W. (2004). The everyday occupation of families with children with autism.
American Journal of Occupational Therapy, 58, 543–550.
http://dx.doi.org/10.5014/ajot.58.5.543 Dickie, V. A., Baran
Denzin, N., & Lincoln, Y. (2005). The SAGE handbook of qualitative research (3rd ed.).
Thousand Oaks: Sage Publications.
Dervin, B. (1983). An Overview of Sense-Making Research: Concepts, Methods and Results.

Paper presented at the annual meeting of the International Communication Association,
181
Dallas, TX. Available: http://communication.sbs.ohio-state.edu/sense-
making/art/artdervin83.html
Edwards, T. S., & Michael, J. S. (2012). Music Therapy Song Repertoire for Children with
Autism Spectrum Disorder: A Descriptive Analysis by Treatment Areas, Song Types,
and Presentation Styles. The Arts in Psychotherapy, doi:10.1016/j.aip.2014.03.007
Ehrlich, S. (2012). Medical reference guide: Stress. Retrieved from

http://umm.edu/health/medical/altmed/condition/stress
Epp, A. M., & Price, L. L. (2008). Family Identity: A Framework of Identity Interplay in
Consumption Practices. Journal Of Consumer Research, 35(1), 50-70.
Ennis-Cole, D., Durodoye, B. A., & Harris, H. L. (2013). The Impact of Culture on Autism
Diagnosis and Treatment: Considerations for Counselors and Other Professionals. Family
Journal 21(3), 279. doi:10.1177/1066480713476834
Factor, D., Freeman, N., & Kardash, A. (1989). Brief report: a comparison of DSM-III and
DSM-III-R criteria for autism. Journal Of Autism And Developmental Disorders, 19(4),
637-640.
Falco, M. (2012). CDC: U.S. kids with autism Up 78% in Past Decade. Retrieved from
http://www.cnn.com/2012/03/29/health/autism
Farrugia, D. (2009). Exploring stigma: Medical knowledge and the stigmatisation of parents of
children diagnosed with autism spectrum disorder. Sociology of Health and Illness, 31,
1011–1027. http://dx.doi.org/10.1111/j.1467-9566.2009. 01174.x
Feinstein, A. (2010). A history of autism: Conversations with the pioneers. Chichester, West
Sussex, U.K.: Wiley-Blackwell.
Fewster, D., & Gurayah, T. (2015). First port of call: Facing the parents of autism spectrum
disorder. South African Family Practice, 31-34.
Finch, J. and Mason, J. (2000), Passing On: Kinship and Inheritance in England, London:
Routledge.
182
Findler, L. (2014). The experience of stress and personal growth among grandparents of children
with and without intellectual disability. Intellectual & Developmental Disabilities, 52(1),
32-48. doi:10.1352/1934-9556-52.1.32
Flippin, M., & Crais, E. (2011). The Need for More Effective Father Involvement in Early
Autism Intervention: A Systematic Review and Recommendations. Journal of Early
Intervention, 24-50.
Frith, U. (1991). Autism and Asperger syndrome. Cambridge: Cambridge University Press.
Galvin, K. (2006). Diversity’s impact on defining the family: Discourse-dependence and

identity. In L. H. Turner & R. L. West (Eds.), The family communication sourcebook.
Thousand Oaks, CA: SAGE.
Gergen, K. J. (2000). The saturated self: Dilemmas of identity in contemporary life. New York,
NY: Basic Books.
Generation Rescue. (2014). About -GenRescue. Retrieved May 20, 2015, from
http://www.generationrescue.org/about/
Gerstel, N., Clawson, D., & Zussman, R. (2002), Families at Work: Expanding the Bounds,
Nashville: Vanderbilt University Press.
Giallo, R., & Gavidia-Payne, S. (2006). Child, parent and family factors as predictors of
adjustment for siblings of children with a disability. J Intellect Disabil Res Journal of
Intellectual Disability Research, 937-948.
Giddens, A. (1984). The constitution of society. Berkeley: University of California Press.
Giddens, A. (1992), The Transformation of Intimacy: Sexuality, Love, and Eroticism in Modern
Societies, Stanford, CA: Stanford University Press.
Goffman, Erving. (1967), Interaction ritual: Essays on face-to-face behavior. Garden City, NY:
Anchor.
183
Grandin, T. (1996). Thinking in pictures: And other reports from my life with autism New York:
Vintage Books.
Gray, D. E. (2006). Coping over time: the parents of children with autism. Journal Of
Intellectual Disability Research, 50(12), 970-976. doi:10.1111/j.1365-2788.2006.00933.x
Hacking, I. (2009). Humans, aliens & autism. Daedalus, 44-59.
Hall, H. R., & Graff, J. (2010). Parenting challenges in families of children with autism: A pilot
study. Issues In Comprehensive Pediatric Nursing,33(4), 187-
204.doi:10.3109/01460862.2010.528644
Hall, H., & Graff, J. (2011). The relationships among adaptive behaviors of children with autism,
family support, parenting stress, and coping. Issues in Comprehensive Pediatric
Nursing 34(1), 4–25. doi:10.3109/01460862.2011.555270
Hartley, S. L., Barker, E. T., Seltzer, M., Greenberg, J., Bolt, D., Floyd, F., & Orsmond, G.
(2010). The Relative Risk and Timing of Divorce in Families of Children with an Autism
Spectrum Disorder. Journal of Family Psychology 24(4), 449–457.doi:10.1037/a0019847
Harter, L. (2012). Imagining new normals: A narrative framework for health communication.
Dubuque, IA: Kendall Hunt.
Hays, A., & Colaner, C. (2016). Discursively Constructing a Family Identity After an Autism
Diagnosis: Trials, Tribulations, and Triumphs. Journal Of Family Communication, 16(2),
143-159 17p. doi:10.1080/15267431.2016.1146722
Hill, R. (1953). Generic features of families under stress. Social Casework, 49, 139–150.
Husserl, E. (1980). Phenomenology and the foundations of the sciences. (trans T.E. Klein &
W.E. Pohl). The Hague: Nijhoff. (Original work written 1912).
Humphrey, N., & Symes, W. (2010). Responses to bullying and use of social support among
pupils with autism spectrum disorders (ASDs) in mainstream schools: a qualitative
184
study. Journal Of Research In Special Educational Needs, 10(2), 82-
90.doi:10.1111/j.1471-3802.2010.01146.x
Jeffers, S. (2001). Stages of grief: fact or fiction?. Kansas Nurse, 76(7), 9-12 4p.
Jolly, A. (2015). Handle with care: Top ten tips a nurse should know before caring for a
hospitalized child with autism spectrum disorder. Pediatric Nursing, 41(1), 11-22.
Jones, C., & Peisah, C. (2015). Working alliances not loggerheads: understanding and addressing
dissonance between families and treating teams in older people's mental
health. Australasian Psychiatry, 23(5), 488. doi:10.1177/1039856215576421
Jorgenson, J. & Bochner, A. (2004). Imagining families through stories and rituals. In A.
Vangelsti (Ed.), Handbook of family communication. pp.513-538. New Jersey,
Lawerence Erlabaum Associates.
Kanner, L (1943). "Autistic disturbances of affective contact". Nerv Child 2: 217–50.
Karst, J., & Hecke, A. (2012). Parent and family influence of autism spectrum disorders: A
review and proposed model for intervention evaluation. Clinical Child & Family
Psychology Review, 15(3), 247-277. doi:10.1007/s10567-012-0119-6
Keating, D. M., Russell, J. C., Cornacchione, J., & Smith, S. W. (2013). Family communication
patterns and difficult family conversations. Journal Of Applied Communication
Research,41(2), 160-180. doi:10.1080/00909882.2013.781659
Keenan, M., Dillenburger, K., Doherty, A., Byrne, T., & Gallagher, S. (2010). The Experiences
of Parents during Diagnosis and Forward Planning for Children with Autism Spectrum
Disorder. Journal of Applied Research In Intellectual Disabilities 23(4), 390–
397.doi:10.1111/j.1468-3148.2010.00555.x
Kite, D., Gullifer, J., & Tyson, G. (2013). Views on the diagnostic labels of autism and
asperger's Disorder and the proposed changes in the DSM. Journal Of Autism &
Developmental Disorders, 43(7), 1692-1700. doi:10.1007/s10803-012-1718-2
185
Koenig Kellas, J., & Kranstuber Horstman, H. (2015). Communicated narrative sense-making:
Understanding family narratives, storytelling, and the construction of meaning through a
communication lens. In L. H. Turner, & R. West (Eds.), The Sage handbook of family
communication (pp. 76–90). Los Angeles, CA: Sage.
Kopetz, P., & Endowed, D. (2012). Autism Worldwide: Prevalence, Perceptions, Acceptance,
Action. Journal of Social Sciences, 8(2), 196-201.
Kübler-Ross, E., & Byock, I. (1969.). On Death & Dying: What the Dying Have to Teach
Doctors, Nurses, Clergy & Their Own Families.
Langan, M. (2011). Parental voices and controversies in autism. Disability & Society, 193-205.
Langellier, K. M., & Peterson, E. E. (2004). Performing narrative: Storytelling in daily life.
Philadelphia, PA: Temple University Press.
Langellier, K. M., & Peterson, E. E. (2006a). Narrative performance theory: Telling stories,
doing family. In D. O. Braithwaite & L. A. Baxter (Eds.),Engaging theories in family
communication: Multiple perspectives (pp. 99-114). Thousand Oaks, CA: SAGE.
Lasgaard, M., Nielsen, A., Eriksen, M., & Goossens, L. (2010). Loneliness and social support in
adolescent boys with autism spectrum disorders. Journal Of Autism & Developmental
Disorders, 40(2), 218-226. doi:10.1007/s10803-009-0851-z
Leeds-Hurwitz, W. (2005). Making marriage visible: Wedding anniversaries as the public

component of private relationships. Text. 25(5), 595-631.
Lucas, K., & Buzzanell, P. M. (2012). Memorable Messages of Hard Times: Constructing Short-
and Long-Term Resiliencies Through Family Communication. Journal Of Family
Communication, 12(3), 189-208. doi:10.1080/15267431.2012.687196
Macleod, A., Lewis, A., & Robertson, C. (2013). ‘Why should I be like bloody Rain Man?!’
Navigating the autistic identity. British Journal of Special Education, 41- 49.
Mallinson RK.(1999). Grief work of HIV-positive persons and their survivors. Nurse Clinic
North Am 34:163-77.
186
Manning, M., Wainwright, L., & Bennett, J. (2010). The double ABCX model of adaptation in
racially diverse families with a school-age child with autism. Autism Dev Disord Journal
of Autism and Developmental Disorders, 320-331.
Manusov, V., & Keeley, M. P. (2015). When Family Talk is Difficult: Making Sense of
Nonverbal Communication at the End-of-Life. Journal Of Family Communication, 15(4),
387. doi:10.1080/15267431.2015.1076424
Margetts, J., Le Couteur, A., & Croom, S. (2006). Families in a state of flux: the experience of
grandparents in autism spectrum disorder. Child: Care, Health & Development, 32(5),
565-574. doi:10.1111/j.1365-2214.2006.00671.x
McCarthy, J. (2009). Mother warriors, a nation of parents healing autism against all odds. New
York: E. P. Dutton.
Mcdonald, M., Pace, D., Blue, E., & Schwartz, D. (2012). Critical issues in causation and
treatment of autism: Why fads continue to flourish. Child & Family Behavior
Therapy, 290-304.
McGoldrick, M. & Giordano, J. (1996), “Overview: Ethnicity and Family Therapy,” in Ethnicity
and Family Therapy, 2nd ed., ed. Monica McGoldrick, Joe Giordano, and John W.
Pearce, New York: Guilford, 1–30.
Mokros, H. B. (2003). Identity matters: Communication-based explorations and explanations.

Creskill, NJ: Hampton Press.
Morgan, David H. J. (1996), Family Connections: An Introduction to Family Studies,

Cambridge, MA: Blackwell
Mulligan, J., Steel, L., MacCulloch, R., & Nicholas, D. (2010). Evaluation of an information
resource for parents of children with autism spectrum disorder. Autism: The International
Journal Of Research & Practice, 14(2), 113-126. doi:10.1177/1362361309342570
Nagy, M. E., & Theiss, J. A. (2013). Applying the relational turbulence model to the empty-nest
transition: Sources of relationship change, relational uncertainty, and interference from
187
partners. Journal Of Family Communication, 13(4), 280-
300.doi:10.1080/15267431.2013.823430
National Broadcasting Corporation (2012). [Television series episode]. In Parenthood. New

York: National Broadcasting Corporation.
National Institute of Mental Health (NIMH). (2013). A parent’s guide to autism spectrum
disorder. Retrieved from http://www.nimh.nih.gov/health/publications/a-parents-guide-
to-autism-spectrum-disorder/how-is-asd-diagnosed.shtml
NAAR. (2007). America on Autism: A NAAR Public Opinion Poll. Retrieved May 21, 2015,
from https://www.autismspeaks.org/docs/major_findings_final_web.pdf
Neely-Barnes, S., Hall, H., Roberts, R., & Graff, J. (2011). Parenting a child with an autism
spectrum disorder: Public perceptions and parental conceptualizations. Journal of Family
Social Work, 208-225. doi:10.1080/10522158.2011.5711539
Neely, J., Amatea, E. S., Echevarria-Doan, S., & Tannen, T. (2012). Working with Families
Living with Autism: Potential Contributions of Marriage and Family Therapists. Journal
Of Marital And Family Therapy, 38(1), 211-226.
Offit, P. (2010). Autism's false prophets bad science, risky medicine, and the search for a cure
(Pbk. ed.). New York: Columbia University Press.
Olson, D. & McCubbin, H. (1982). Circumplex model of martial and family systems V;
Application to family stress and crisis intervention. In H.I. McCubbin, A.E. Cauble, &
J.M. Patterson (Eds.), Family stress, coping, and social support (p. 44- 68).
Springfield, IL: Charles C. Thomas Publishers.
O'Neill, J. F., Selwyn, P. A., & Schietinger, H. (2003). A clinical guide to supportive & palliative
care for HIV/AIDS [electronic resource]. [Rockville, Md.: Health Resources and Services
Administration].
Ong, W. (2002). Orality and literacy: The technologizing of the word. London: Routledge.
188
Parkinson, J., Gallegos, D., & Russell-Bennett, R. (2016). Transforming beyond self: Fluidity of
parent identity in family decision-making. Journal Of Business Research, 69110-
119.doi:10.1016/j.jbusres.2015.07.025
Patton, M. (2002). Qualitative research and evaluation methods (3rd ed.). Thousand Oaks, Calif.:
Sage Publications.
Patterson. J. (2002). Integrating family resilience and family stress theory. Journal of Marriage
and Family, 64, 349-360.
Pattison, E. (1977). The experience of dying. New York. Simon and Schuster.
Pei-Wen, Lee. (2008). Stages and transitions of relational identity formation in intercultural
friendship: Implications for identity management theory. Journal Of International &
Intercultural Communication 1, no. 1: 51-69. Communication & Mass Media Complete.
Phillips, K. E., & Schrodt, P. (2015). Sibling Antagonism and Shared Family Identity as
Mediators of Differential Parental Treatment and Relational Outcomes in the Sibling
Relationship. Western Journal Of Communication, 79(5), 634-
654.doi:10.1080/10570314.2015.1078497
Poyadue, F. S. (1993). Cognitive coping at parents helping parents. In A. P. Turnbull, J. M.

Patterson, S. K. Behr, D. L. Murphy, J. G. Marquis, & M. J. Blue-Banning (Eds.),
Cognitive coping, families, and disability (pp. 95–109). Baltimore: Brookes.
Prabha, C., Connaway, L. S., Olszewski, L. & Jenkins, L. R. (2007). What Is Enough?
Satisficing Information Needs. Journal of Documentation 63(1), 74–89.
Pratt, M.G. 2000. The good, the bad, and the ambivalent: Managing identification among
Amway distributors. Administrative Science Quarterly, 45: 456–493.
Preece, D. (2014). A matter of perspective: the experience of daily life and support of mothers,
fathers and siblings living with children on the autism spectrum with high support
needs. Good Autism Practice, 15(1), 81-90.
189
Public Broadcasting System. (2006). Refrigerator mothers [Documentary]. Distributed by Public
Broadcasting System: New York.
Qualman, E. (2009). Socialnomics: How social media transforms the way we live and do
business. Hoboken, N.J.: Wiley.
Randall, P., & Parker, J. (1999). Supporting the families of children with autism. New York:
John Wiley and Sons.
Ravindran, N., & Myers, B. (2012). Cultural Influences on Perceptions of Health, Illness, and
Disability: A Review and Focus on Autism. Journal of Child & Family Studies 21(2),
311–319. doi:10.1007/s10826-011-9477-9
Ramisch, J. (2012). Marriage and family therapists working with couples who have children with
autism. Journal Of Marital & Family Therapy, 38(2), 305-316. doi:10.1111/j.1752-
0606.2010.00210.x
Reiss, David (1981), The Family’s Construction of Reality, Cambridge, MA: Harvard University
Press.
Rittenour, C. (2012). Daughter-in-law Standards for Mother-in-law Communication:

Associations With Daughter-in-law Perceptions of Relational Satisfaction and Shared
Family Identity. Journal Of Family Communication, 12(2), 93-110.

doi:10.1080/15267431.2010.537240
Roekel, E., Scholte, R. J., & Didden, R. (2010). Bullying among adolescents with autism
spectrum disorders: Prevalence and perception. Journal Of Autism & Developmental
Disorders, 40(1), 63-73. doi:10.1007/s10803-009-0832-2
Romo, S. (2015). Arriving at a new normal: Married couples adjust to their child’s diagnosis of
autism. National Social Science Journal. 45(1). 77-89.
Rossetti, Z. S. (2011). "That's How We Do It": Friendship Work Between High School Students
With and Without Autism or Developmental Disability. Research & Practice For
Persons With Severe Disabilities, 36(1/2), 23-33.
190
Rogers, K. L. (2015). Parent's reaction to diagnosis as it relates to parental stress, family coping
and child's educational progress in children diagnosed with autism. Dissertation
Abstracts International, 75,
Russell, J. C., Keating, D. M., Cornacchione, J. J., & Smith, S. W. (2012). An initial
investigation of difficult conversations in families from a multiple goals perspective.
Paper presented at the convention of the National Communication Association, Orlando,
FL.
Schutz, A. (1970). On Phenomenology and Social Relations: Selected Writings, ed.

H.Wagner, Chicago: University of Chicago Press.
Segrin, C., & Flora, J. (2011). Family communication (2nd ed.). New York: Routledge.
Seltzer, M., Greenberg, J. S., Jinkuk, H., Smith, L. E., Almeida, D. M., Coe, C., & Stawski, R. S.
(2010). Maternal Cortisol Levels and Behavior Problems in Adolescents and Adults with
ASD. Journal of Autism & Developmental Disorders, 40(4), 457–
469.doi:10.1007/s10803-009-0887-0
Sevón, E., Malinen, K., & Rönkä, A. (2014). Daily wellbeing in families with children: A
harmonious and a disharmonious week. Journal of Family Studies, 221-238.
Sheidow, A., Henry, D., Tolan, P., & Strachan, M. (2014). The role of stress exposure and family
functioning in internalizing outcomes of urban families. Journal Of Child & Family
Studies, 23(8), 1351-1365. doi:10.1007/s10826-013-9793-3
Shtayermman, O. (2013). Stress and Marital Satisfaction of Parents to Children Diagnosed with
Autism. Journal of Family Social Work 16(3), 243–
259.doi:10.1080/10522158.2013.786777
Siklos, S., & Kerns, K. A. (2007). Assessing the Diagnostic Experiences of a Small Sample of
Parents of Children with Autism Spectrum Disorders. Research in Developmental
Disabilities 28(1), 9–22.
Sinclair, J. (1993). Don't mourn for us. Autism Network International, 1(1).
191
Smart, Carol and Bren Neale (1999), Family Fragments, Malden, MA: Blackwell.
Solomon, Andrew (2008). "The autism rights movement". New York. Archived from the original
on 27 May 2008. Retrieved 2008-05-27.
Swinth, Y., Tomlin, G., & Luthman, M. (2015). Content Analysis of Qualitative Research on
Children and Youth With Autism, 1993-2011: Considerations for Occupational Therapy
Services. American Journal Of Occupational Therapy, 69(5), p1-p9
9p.doi:10.5014/ajot.2015.017970
Switzer, D. K. (1970). The dynamics of grief. Nashville: Abingdon Press.
The Lancet. (2010). Retraction—Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and

pervasive developmental disorder in children. The Lancet, 445-445.
Topp, M. (2015). Effective communication eases grief. Nursing New Zealand (Wellington, N.Z.:
1995), 21(4), 28.
Twoy, R., Connolly, P. M., & Novak, J. M. (2007). Coping strategies used by parents of children
with autism. Journal Of The American Academy Of Nurse Practitioners, 19(5), 251-
260.doi:10.1111/j.1745-7599.2007.00222.x
Usborne, E., & Sablonnière, R. (2014). Understanding my culture means understanding myself:
The function of cultural identity clarity for personal identity clarity and personal
psychological well-being. Journal For The Theory Of Social Behaviour, 44(4), 436-
458.doi:10.1111/jtsb.12061
Vanhoutteghem, I., Van Hove, G., D'haene, G., & Soyez, V. (2014). I never thought I would
have to do This: Narrative study with siblings-in-law who live together with a family
member with a disability. British Journal Of Learning Disabilities, 42(4), 315-322.
Van Manen, M. (1990). Researching lived experience: Human science for an action sensitive
pedagogy. Albany, N.Y.: State University of New York Press.
192
Weber, M. S., Thomas, G. F., & Stephens, K. J. (2015). Organizational Disruptions and Triggers
for Divergent Sensemaking. Journal Of Business Communication, 52(1), 68-
96.doi:10.1177/2329488414560281
Weick, K. (1993). The collapse of sensemaking in organizations: The Mann Gulch

disaster. Administrative Science Quarterly, 3: 628–652.
Walker, M. (2005). Rainbow nation or new racism? Theorizing race and identity formation in
South African higher education. Race Ethnicity and Education, 129-146.
Wakefield A., Murch S., Anthony A., Linnell J., Casson D., Malik M., Berelowitz M., Dhillon
A., Thomson M., Harvey P., Valentine A., Davies S. Walker-Smith J. (1998). "Ileal-
lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental
disorder in children". The Lancet 351 (9103): 637–41
Watson, T. J. 2009. Narrative life story and the management of identity: a case study in
autobiographical identity work. Human Relations, 62(3): 1–28.
Whitchurch, G. & Dickson, F. (1999). Family communication. In M.B. Sussman, S.K.

Steinmetz, & G.W. Peterson (Eds), Handbook of marriage and the family, (2nd ed.) pp.
687-704. New York: Plenum Press.
Whitson, M. m., Bernard, S., & Kaufman, J. (2015). The mediating role of parenting stress for
children exposed to trauma: Results from a school-based system of care. Journal Of
Child & Family Studies, 24(4), 1141-1151. doi:10.1007/s10826-014-9922-7
Wood, J. T. (1982). Communication and relational culture: Bases for the study of human
relationships. Communication Quarterly, 30, 75_84.
Yadav, N., & Patil, R. R. (2014). Determinants of family planning acceptance and changing
social norms among the tribes of Tamil Nadu - A qualitative exploration. Indian Journal
Of Community Health, 26(4), 426-430.
193
Addendum 1 – Recruitment Flyer
194
Addendum 2 – Sample Social Media Posts
Social Media Site Sample Post Sample Post

Twitter Have you ever wanted to vent about your Help families newly diagnosed with autism
experiences with autism? Share your understand what life is like on the spectrum.
communication experiences about autism Talk about your experiences with autism to
with me. help researchers understand how families
adjust to an autism diagnosis. DM for info. To
participate.
Instagram Use one of the images above and following Use one of the images above and following
content: What is it like to live with autism in content: 1 in 88 children are diagnosed with
your family? Share your communication autism. However, there is little research about
experiences about autism with me. To how autism affects the family. Share your
participate in a research study about families experiences with autism in this unique research
and autism email me at study. Contact me at sandro1@mail.regent.edu
sandro1@mail.regent.edu
195
Addendum 3 – Online Participation Survey
196

197
Addendum 3a – Online Family Participation Email
Dear Participant:
Thank you for your interested in this research study. As previously discussed, this study
examines how families communicate and adjust their family identities after an autism diagnosis
of a family member. Results from this study will be used in my doctoral dissertation being
completed at Regent University. This online family participation survey will help me determine
your family’s eligibility in the research study. Please know that all responses will be confidential.
The online participation survey provides me with valuable information about your family to
determine if your family meets the criteria for the study. As you know finding out your child has
autism greatly affects the entire family. So, this study wants to examine how families
communicate about autism in many different ways (e.g. to people outside the family, to family
members, to the person with autism, etc.). To find this out I want to hear your autism story –
essentially, what your experience with autism has been so far.
The online survey provides the first step in the process to see if your family is eligible to
participate. To access the online participation survey, please click this linkà
http://bit.ly/1c9wKBm. This survey can be completed using any mobile device or computer. If
you have issues access the survey please do not hesitate to contact me.
Thanks again for our consideration in participating in this research study.
Sincerely,
Sandra Romo
Doctoral Candidate
Regent University
Sandro1@mail.regent.edu
909-503-6346
198
Addendum 4 Interview Guide
Parent Questions:
1) Tell me how you found out your child had autism. How old was your child at the time of
diagnosis?
2) How did you deal with the diagnosis? Ex: did you seek out information; did you avoid
talking about, etc.? RQ1, maybe
3) What was your life like before the diagnosis? Did your family’s social life change in any
way after the diagnosis? RQ1
4) Who did you tell first in your family about your child’s autism and why? What did you
tell them about the diagnosis? RQ2
5) How did you tell the rest of your family about the diagnosis? What were some of the
reactions you received? RQ2
6) Did you elect to not tell certain family members about your child’s diagnosis of autism?
Why or why not? RQ2
7) What do you communicate to your family about your child’s autism diagnosis? Ex:
updates about progress, setbacks, as well as possible concerns or praises about the child
and quality of life? RQ2
8) Who do you confide in about your child’s autism and the care involved with the
diagnosis? This person can be within or outside the family. If it is outside the family
follow up with – why did you chose this person to confide in over a family member,
spouse, etc. RQ 1&2
9) Who do you confide in about your child’s autism? To what degree do you disclose
information about your experiences with the disorder and how it makes you feel as a
parent, spouse, and family member? RQ1&2
a. Ex: I tell them all of my fears and give full disclosure OR I do not give full
disclosure, I solicit advise about care options, etc.
10) What information about autism do you seek and why? Do you share any of that
information with the family? RQ3
a. Ex: blogs, social media accounts, magazine, advocacy group communication, etc.
11) What are family functions such as family dinners, birthdays, the holidays, etc. like since
telling your family about your child’s diagnosis? RQ2
12) Has your family experienced any tensions or conflicts related to the autistic family
member since the diagnosis? If so what are they and what were they related to?
13) What is it like to go on family outings or to go out in public with your child with autism?
How do you think strangers in public perceive your family? RQ3&RQ4
14) How do you think strangers in public perceive your family? How would you like
strangers to perceive your family in public? RQ1,3,4
15) What do you tell people outside of your family about your child’s diagnosis? RQ4
16) How do you explain their diagnosis to people outside of the family? RQ4
a. ex: at school, social groups, play dates, religious services, or in public places, etc.
17) What role if any does your religious background or belief systems play in how you have
adjusted to your child’s diagnosis of autism? RQ1, RQ2
18) Did your religion/faith play a significant role in your family’s life prior to the autism
diagnosis? How has this role changed since the diagnosis? RQ1
199
19) Describe how your faith/religion has influenced your experiences with your autistic child.
RQ1, RQ2, RQ4
a. If the person states they are not religious: What has influenced your experiences
with your autistic child?
20) If you could tell a family that just found out about their child’s autism diagnosis anything
about family life post-diagnosis what would it be? How would you tell them to
communicate to their family and friends about autism? RQ1, RQ2, RQ3, RQ4
a. What advice would you give about communicating with doctors, educators and
others outside the family?
b. What advice would you give about seeking and understanding all the information
and news about autism that is provided by experts, advocates, media and other
groups/people outside the family?
Adult Family Member (non-parent) Questions:

1) Tell me how you found out your family member’s autism diagnosis? What was your
immediate reaction to the diagnosis? Who told you about your family member’s
diagnosis, what is your relationship to them and what is your relationship like? RQ2
2) Did you tell other family members? If so, who and how did you tell them? What were
some of the reactions you received, if you told someone in the family?
3) How did you deal with the diagnosis? Ex: did you seek out information; did you avoid
talking about, etc.? RQ2
4) What type of information about your family members autism diagnosis do you ask their
parents or the autistic person? RQ1, 2, 3
5) What does your family communicate (or talk about) related to autism and the family
member’s diagnosis? RQ2
6) Do you feel the parents of the family member with autism (or autistic person, if able)
gives full disclosure about daily life and care for a person with autism?
7) What information about autism do you seek and why? Do you share any of that
information with parents of the family member with autism? RQ3
a. Ex: blogs, social media accounts, magazine, advocacy group communication, etc.
8) What are family functions like since finding out about your family member’s autism?
RQ2
9) What is it like to go on family outings or to go out in public with your autistic family
member? How do you think strangers in public perceive your family? RQ3&RQ4
10) What do you tell people outside of your family about your family’s member diagnosis
and autism in general? RQ4
11) How do you explain your family member’s diagnosis to people outside of the family?
RQ4
a. ex: at school, social groups, play dates, religious services, or in public places, etc.
12) If you could tell a family that just found out about their child’s autism diagnosis anything
about family life post-diagnosis what would it be? How would you tell them to
communicate to their family and friends about autism?
13) Describe how your faith/religion has influenced your experiences with your autistic child.
14) If the person states they are not religious: What has influenced your experiences with
your autistic child?
200

Out PDF

Uploaded by

Copyright:

Available Formats

You might also like

Out PDF

Uploaded by

Document Information

Original Title

Copyright

Available Formats

Share this document

Share or Embed Document

Sharing Options

Did you find this document useful?

Is this content inappropriate?

Copyright:

Available Formats

Out PDF

Uploaded by

Copyright:

Available Formats

The Construction of a New Family Identity After a Child’s Autism Diagnosis

Presented to the Faculty

School of Communication and the Arts

of the Requirements for the

All rights reserved

INFORMATION TO ALL USERS

All rights reserved.

John Keeler, Ph.D., Committee Chair

William Brown, Ph.D., Committee Member

Benson Fraser, Ph.D., Committee Member

Keywords: family identity, identity construction, autism stories, family storytelling,

reframing, family communication, social abstraction

because of God I was afforded this opportunity.

this degree completed.

dedication to educational pursuits and confidence in me to pursue my dreams. To my father, Big

To my second parents, my father-in-law and mother-in-law, Mark and Roxanne Romo, I

you have with each of them.

To my compadre, Mark Sandoval, and comadre, Aja Sandoval, I am so grateful precious

are able to raise our beautiful children together.

this project without your near daily encouragement.

never having to work again!

Chapter One: The Introduction ...................................................................................... 1

Autism the Tragedy ..................................................................................................................... 1

Communication and the Autism Diagnosis Process ................................................................... 3

Autism the Epidemic ................................................................................................................... 5

History of Autism ........................................................................................................................ 8

Autism and the Family .............................................................................................................. 14

Communication Research and Autism ...................................................................................... 16

Purpose Statement ..................................................................................................................... 17

Significance of the Study .......................................................................................................... 18

Chapter Two: Literature Review .................................................................................. 20

Public Perceptions and Autism ................................................................................................. 21

Stress and Autism ...................................................................................................................... 27

Information needs and coping ................................................................................................... 31

Family identities and autism ..................................................................................................... 34

Quality of life and autism .......................................................................................................... 34

Friendship, Bullying and Autism .............................................................................................. 41

Family Communication and Narratives .................................................................................... 43

Research Questions ................................................................................................................... 47

Chapter Three: Methodology ........................................................................................ 51

Narrative Inquiry ....................................................................................................................... 53

Sample and Approach ............................................................................................................... 56

Recruitment Methods ................................................................................................................ 58

Data Analysis ............................................................................................................................ 60

Chapter Four: Autism Stories ....................................................................................... 64

The Coleman Family ................................................................................................................. 65

The Gonzalez Family ................................................................................................................ 67

The Jade Family ........................................................................................................................ 70

The Juarez Family ..................................................................................................................... 74

The Miles Family ...................................................................................................................... 77

The Perez Family ...................................................................................................................... 81

The Peterson Family.................................................................................................................. 84

The Ramos Family .................................................................................................................... 87

The Rodgers Family .................................................................................................................. 90

The Rodriguez Family............................................................................................................... 93

The Smith Family ...................................................................................................................... 98

The Thompson Family ............................................................................................................ 101

Chapter Five: Findings ................................................................................................. 105