Siblings of Children With Autism

SIBLINGS OF CHILDREN WITH AUTISM; AN INVESTIGATION OF SIBLING AND
PARENT CHARACTERISTICS CONTRIBUTING TO POSITIVE AND NEGATIVE

PSYCHOSOCIAL OUTCOMES
by
Tara Leigh Smith
A thesis submitted in conformity with the requirements

for the degree of Doctor of Philosophy
Department of Human Development and Applied Psychology
Ontario Institute for Studies in Education of the
University o f Toronto
Copyright by Tara Leigh Smith 2006
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SIBLINGS OF CHILDREN WITH AUTISM: AN INVESTIGATION OF SIBLING
AND PARENT CHARACTERISTICS CONTRIBUTING TO POSITIVE AND
NEGATIVE PSYCHOSOCIAL OUTCOMES
Doctor of Philosophy, 2006
Tara Leigh Smith
Department of Human Development and Applied Psychology

University of Toronto
Abstract
For several decades, families of children with autism have been o f interest to
practitioners and researchers, with a growing body o f literature focusing specifically on the
psychosocial functioning of the healthy siblings in the family. Although there have been
mixed findings across existing research studies examining the impact children with autism
have on siblings, a number o f studies have reported that siblings of children with autism
experience greater psychosocial adjustment difficulties, thereby suggesting they are a group
at risk for maladjustment. The current study examined the variability in siblings
psychosocial adjustment and prosocial behaviour with factors found to be important in the
general population and developmental disability field. Furthermore, factors believed to be
more specific to having a brother or sister with autism were explored to help determine those
siblings at greater risk for psychosocial adjustment difficulties, in addition to those siblings
demonstrating more prosocial behaviours. Participants included 72 siblings of children with
autism between ages 7 to 14 years, as well as their parent and classroom teacher. Preliminary
analyses confirmed variability in the functioning of siblings of children with autism, although
the majority of siblings in the present study appeared to be well-adjusted. A minority of
siblings were demonstrating substantial internalizing and/or externalizing behaviour
ii
problems, and low levels o f prosocial behaviour. An analysis of variables predicting
siblings externalizing behaviour problems revealed different factors emerged as salient for
parent versus teacher reports. While siblings were reported by parents to display fewer
externalizing behaviour problems in the presence of lower levels of parental distress and
higher levels of academic achievement, only siblings global self-worth emerged as a
significant predictor for teacher reports. For autism-specific variables, siblings perception
of the frequency of autistic and related behaviours was an important predictor for both parent
and teacher reports o f siblings externalizing behaviour problems. None of the sibling or
parent variables examined in the current study predicted parent or teacher reports of siblings
internalizing behaviour problems or prosocial behaviour. These findings are discussed with
respect to their clinical implications, and directions for future research are presented.
iii
Acknowledgements
This dissertation could not have been completed in the present form without the
guidance and invaluable support from my thesis supervisor and mentor, Dr. Adrienne Perry.
Although it has been a long road, you have always encouraged me with a positive outlook as
I faced the challenges an endeavor like this undoubtedly brings. Despite your busy schedule,
you have always made yourself available to discuss the progress of my dissertation and
problem-solve any obstacles I encountered, as well as provide prompt feedback that assisted
me in meeting my deadlines. I would like to thank you for your continued support and
encouragement throughout the years, and for the many opportunities you have provided me.
Working with you has helped shape me as a researcher and clinician, and that will never be
forgotten.
I would also like to express my sincere appreciation for Dr. Judith Wiener, who has
been my academic advisor throughout my doctoral studies. You have provided me with
guidance, support, and encouragement throughout my graduate studies, and I am grateful for
your invaluable feedback on this dissertation. I am also very grateful to my committee
member, Dr. Katreena Scott, for your time, ongoing support, and invaluable insights
regarding the development o f this study and final written product. I would also like to thank
Dr. Lily Dyson for her willingness to serve as an external examiner. I sincerely appreciate
your supportive and thoughtful comments regarding this dissertation.
Several colleagues are also deserving of acknowledgement, as this dissertation may
not have been completed without their contribution. A special note of gratitude goes to my
colleague and best friend, Terry Diamond, who has helped me in so many countless ways. I
am grateful that I had the opportunity to share this journey with you, both professionally and
iv
personally. Although a difficult process at times, it was always a pleasure to work alongside
you in all aspects of the project, including the long hours spent in the car to meet participants.
I value our close friendship, which has grown stronger since sharing this experience, and
know that this dissertation would not have been completed without your support and
encouragement. Also, a huge thank you goes to Kimberly Harris, Dayna Morris, Raquel
Zapeda, Heather Hastings, Shiri Bartman, and Abbie Solish. I appreciate your assistance
with many aspects o f the research project, including the hours spent in the car to meet with
families on your weekends.
I am fortunate to have many close friends (from Windsor, Toronto, and Ottawa) who
have supported my academic pursuits. I value our friendships and thank you for your belief
in my ability to complete my graduate studies. To my group of friends known as the Thesis
Support Group (Terry Diamond, Sheri Turrell, Rosemary Condillac, and Susie Correia),
thank you for continual support throughout the last several years. You helped keep me on
track, shared your confidence in my ability to complete this task, and made me realize I can
accomplish anything with the support o f a great network o f friends. I will always remember
the times we spent together over food and drinks, with your laughter helping to make this
process a bit easier and enjoyable.
I would like to thank the Autism Society of Ontario for recognizing the importance of
research on siblings of children with autism, and providing a grant to help fund the current
study. I would also like to acknowledge the numerous organizations that assisted me in
recruiting families for this study. I am forever grateful to the parents and children whose
participation have made this study possible, and offer my sincere appreciation for their time,
as well as their openness and honesty.
I must also thank my furry friend Nala, who faithfully sat by my side while I typed
away at the computer. You motivated me to finish my graduate studies so I could spend
more time with you outside, taking long and well deserved walks together.
Last, and most importantly, I would like to thank my parents for their endless love
and support throughout my academic and professional endeavours. You have always
encouraged me to pursue my goals and have taken pride in my accomplishments. This
always helped to keep me motivated and gave me the confidence to pursue my dreams. Even
through the distance, you were always available when I needed you. It helped knowing you
were just a phone call away and would have comforting words that would inspire me to keep
moving forward. Thank you for believing in me and never letting me give up. I believe that
my academic and professional accomplishments are as much yours as mine.
vi
Table of Contents
A bstract......................................................... ii
Acknowledgements................................... iv
Table of Contents ................................................................................................................. vii
List of Tables......................................................................................................... xii
List of Appendices ................................................................... xiv
Introduction ....................................................................... 1
Characteristics o f Autistic Disorder................ 2
Autism and the Family System ...................... 4
The Effects of a Child with Autism on Parents ................................... 4
Challenges for Siblings of Children with A utism ............... 6
Psychosocial Adjustment o f Siblings of Children with A utism ............................. 8
Methodological Differences and Limitations............................................. 11
Variability in Siblings Psychosocial Adjustment...................................... 13
Factors Affecting Psychosocial Adjustment .............................................. 14
Academic Achievement................................. .1 5
Self-Concept...................................................................................... 18
Perceived Social Support................................................................. 20
Parental D istress............................. 22
Perceived Social Support as a M oderator........................................ 24
Siblings Perception of Severity of Disability................................. 24
Parent Advocacy ......................................... 26
Summary .............................. 28
vii
Positive Outcom es................................................................................... 29
Prosocial Behaviour........................................................ ........... 30
Factors Affecting Prosocial Behaviour.................................... 32
Gender and A g e ............................................................. 32
Self-Concept .......................................... ............. 34
Perceived Social Support ............................................. 35
Parent Advocacy ................................................. 36
Siblings Perceptions of Parents Empathic Behaviour 38
Siblings Perception o f Competence............................ 38
Summary........................................................................ 40
Aims o f the Current Study...................................................................... 40
Research Questions and Hypotheses .......................................... 41
Research Question 1 ................................................................... 41
Research Question 3 ........... ................ ..................................... 42
M ethod............... ..................................... ............................................................ 44
Participants.............................................................................................. 44
M easures.................................................................................................. 47
Screening Instruments................................................................ 47
The Family Information Schedule................................ 47
viii
Wechsler Abbreviated Scale of Intelligence................................... 47
Dependent V ariables...................... 48
Achenbach Child Behavior Checklist............................................. 48
Teacher Report F orm ................ 49
Social Competence Inventory................ 50
Independent Variables...................... 51
Kaufman Test of Educational Achievement - Brief F orm 51
Autism Specific Behaviour Scale for Siblings................................ 52
Self-Perception Profile for Children............................................... 53
The Social Support Scale for Children .................................... 54
The Children and Families Scale ........... 55
Parenting Stress Index - Short F orm ........................................ 56
Parent Advocacy S cale..................................................................... 57
Summary of Measures .............. 58
Procedure ................................... 58
R esults..................................................................................................................................... 62
Distributions and Assumptions................................................................................. 62
Preliminary A nalyses....................................................................... 64
Variability in Dependent V ariables.............................................................. 64
Potential Covariates in Hierarchical Regression Analyses ......... 64
Research Questions...................................................... 66
Predictors o f Internalizing and Externalizing Behaviour.......................... 66
Internalizing Behaviour............................................... 67
ix
Externalizing Behaviour................................................ 68
Social Support as a Moderator for Psychosocial Adjustment.................... 69
Relationship Between Psychosocial Adjustment and Prosocial

Behaviour...................... 70
Predictors o f Prosocial Behaviour.............................. 71
Discussion............................................................. 73
Potential Covariates for Psychosocial Adjustment and Prosocial Behaviour 74
General Factors Predicting Psychosocial Adjustment ........................................... 75
Academic Achievement...................................................................................76
Self-Concept................................ 77
Perceived Social Support.............................................................. 77
Parental D istress............................................... 78
Autism-Specific Factors Predicting Psychosocial Adjustment.............................. 79
Siblings Perception of Severity o f Disability............................................. 79
Parent Advocacy............................................................................................ 80
Summary............................................................ 80
Social Support as a Moderator for Psychosocial Adjustment................................ 81
Relationship Between Psychosocial Adjustment and Prosocial Behaviour 82
General Factors Predicting Prosocial Behaviour.................................. 82
Self-Concept......................................................... 82
Perceived Social Support............................................................................... 83
Autism-Specific Factors Predicting Prosocial Behaviour......................... 83
Siblings Perceptions of Parents Empathic Behaviour.................. 83
Siblings Perception of Competence............................................................ 84
Parent Advocacy............................ . ................................................................ 85
Summary............................................................................................ 85
Strengths................................... 86
Limitations.......................................................... 87
Clinical Implications.................................................................................................... 89
Future Research..................................... 93
Conclusions...................................................... 95
References..................................................................................................................................97
xi
List of Tables
1. Comparison o f Means on Outcome Measures for Current and Previous Teachers ... I l l
2. Informant Completing the Dependent and Independent M easures.......................... 112
3. Descriptive Information for Independent and Dependent Variables.......................... 113
4. Intercorrelations o f Independent Variables with Internalizing and Externalizing

Behaviours....................................................................................................................... 114
5. Intercorrelations of Independent Variables with Prosocial Behaviours...................... 115
6. Variability in Siblingss Scores on the Dependent Variables.................................... 116
7. Mean Difference Between Females and Males on the Dependent Variables 117
8. The Mean Difference Between Siblings with a Diagnosis and Those Without
on the Independent Variables..................................................................................... 118
9. Summary of Hierarchical Regression Analysis for Variables Predicting

Parent Reports of Siblings Internalizing Behaviour. ............................................... 119

Teacher Reports of Siblings Internalizing Behaviours.............................................. 120
11. Summary o f Hierarchical Regression Analysis for Variables Predicting

Parent Reports o f Siblings Externalizing Behaviours.............................................. 121

Teacher Reports of Siblings Externalizing Behaviours .................................... 122
13. Summary o f Hierarchical Regression Analysis for Moderation of the

Relationship Between Parental Distress and Parent Reports of Internalizing
Behaviour by Social Support......................... 123
14. Summary of Hierarchical Regression Analysis for Moderation o f the

Relationship Between Parental Distress and Teacher Reports of Internalizing
Behaviour by Social Support......................................................................................... 124
15. Summary of Hierarchical Regression Analysis for Moderation o f the

Relationship Between Parental Distress and Parent Reports of Externalizing
xii
16. Summary o f Hierarchical Regression Analysis for Moderation of the
Relationship Between Parental Distress and Teacher Reports of Externalizing
17. Relationship of Siblings Prosocial Behaviour with Siblings Internalizing

and Externalizing Behaviours........................................................................ 127
18. Summary of Hierarchical Regression Analysis for Variables Predicting Parent

Reports o f Siblings Prosocial Behaviours................................................................... 128
19. Summary o f Hierarchical Regression Analysis for Variables Predicting Reports of

Teacher Siblings Prosocial Behaviours...................................................................... 129
xiii
List of Appendices
Appendix A: Ethical R eview ......................................................................................... 130
Appendix B: Recruitment Agencies........................................................... 132
Appendix C: Demographic Information............................ 134
Appendix D: Autism Specific Behaviour Scale for Siblings ............................. 138
Appendix E: Parent Information and Consent / Assent Forms ..................... 143
Appendix F: Study F ly er................................................................................................ 151
Appendix G: Sibling Inclusion Criteria Form ............................................. 153
Appendix H: Release Form and Teacher Consent F orm .............................................. 155
xiv
CHAPTER 1: INTRODUCTION
Families of children with disabilities have been of interest to practitioners and
researchers for several decades. A particular focus of interest has been how parents are
negatively affected by having a child with a disability. Following from a deficit model,
parents of children with a disability have been perceived to be at risk for experiencing high
levels of stress, resulting from factors such as financial strain, burden o f extra caretaking
responsibilities, lack of community awareness and acceptance, and limited services and
supports (Fisman & Wolf, 1991). For parents of children with autism in particular,
additional sources o f stress have been identified, including the childs rigidity and the
frequency and severity o f behaviour problems (Fisman & Wolf, 1991). In fact, many studies
have found that parents o f children with autism are significantly more stressed than parents
of children with other disabilities and from parents of typically developing children (Fisman
et al., 1996; Fisman, Wolf, & Noh, 1989; Hastings & Johnson, 2001; Holroyd & McArthur,
1976; Sanders & Morgan, 1997).
The effect of the child with autism on typically developing siblings in the family has
also been investigated, and many studies have reported that siblings of children with autism
experience greater psychosocial adjustment difficulties (Bagenholm & Gillberg, 1991;
Fisman et al., 1996; Gold, 1993; Hastings, 2003; Rodrigue, Geffken, & Morgan, 1993; Verte,
Roeyers, & Buysse, 2003). Therefore, siblings of children with autism have been identified
as a group at risk for maladjustment. However, many siblings of children with autism do not
exhibit psychosocial adjustment difficulties (Lobato, 1983) and report positive aspects of
living with a brother or sister with autism.
A primary goal of this study was to gain a better understanding of the variability in
the psychosocial adjustment of siblings of children with autism. Guided by the risk and
resiliency literature, I aimed to determine whether factors known to be important for children
in the general population are also influential in predicting the psychosocial adjustment of
siblings of children with autism. Furthermore, factors believed to be more specific to having
a brother or sister with autism were explored to help determine those siblings at greater risk
for psychosocial adjustment difficulties. An additional, yet equally important goal of the
current study involved moving away from a sole focus on maladjustment to an examination
o f a positive outcome for siblings of children with autism, namely prosocial behaviour.
In the following literature review, the characteristics of autism are briefly described,
followed by research on the effect a child with autism may have on parents. I then present a
review of literature on the psychosocial adjustment of siblings of children with autism,
methodological limitations that are prominent within this field, and empirical evidence for
each of the factors believed to be important in predicting siblings psychosocial adjustment.
The rationale for the importance of examining prosocial behaviour as a positive outcome for
siblings of children with autism is then provided. Finally, research findings for factors that
have been identified as important to the development of prosocial behaviour in children in
the general population are discussed, as well as factors that are felt to be more specific to
prosocial behaviour in siblings of children with autism.
Characteristics of Autistic Disorder
Autistic Disorder is a Pervasive Developmental Disorder (PDD) that is characterized
by abnormal or impaired development in social interaction and communication, in addition to
the presence o f a markedly restricted repertoire of interests and activities (American
Psychiatric Association [APA], 2000). The impairments in social interaction may include
difficulty regulating social interactions with nonverbal behaviours (e.g., eye contact), a
failure to develop age-appropriate relationships with others, a lack of social or emotional
reciprocity, and failure to share enjoyment or interests with others (APA, 1994). The
impairment in communication may involve a delay in, or total lack of, language
development. Individuals who develop speech may exhibit difficulty initiating or sustaining
conversation with others, use idiosyncratic language, and have peculiar patterns of speech
(e.g., echolalia, monotonous tone). There may also be a lack of varied, spontaneous make-
believe play. A child with Autistic Disorder may also exhibit a markedly restricted range of
interests, show distress in response to changes in routines, adhere to nonfunctional rituals
(e.g., lining up objects), exhibit repetitive motor mannerisms (e.g., hand flapping), and
become preoccupied with parts of objects (e.g., wheels of toys).
In addition to the impairments described above, 75% of children with autism also
have an associated diagnosis of Mental Retardation (APA, 1994). Moreover, children with
autism frequently display a variety of behavioural symptoms, such as temper tantrums, self-
injury, aggression, hyperactivity, impulsivity, and difficulty sustaining attention. They may
also exhibit extreme sensitivity to sensory stimuli (e.g., bright lights, sound of the vacuum
cleaner) that results in distress for the child.
Autistic Disorder has previously been considered a relatively rare disorder, occurring
in approximately 2 to 5 individuals per 10,000 people (APA, 2000). A more recent report
examining epidemiological surveys of autism found an average rate of 16.2 per 10,000
individuals for studies published from 1987 to 2004 (Fombonne, 2005). Males are 4 to 5
times more likely to have a diagnosis of autism than females (APA, 2000; Fombonne, 2005).
4
Autism and the Family System
The family system is comprised of smaller subsystems, which includes marital,
parent-child, and sibling subsystems (Minuchin, 1985). A child with a disability is
embedded within these interdependent subsystems. Within a family systems framework,
each family member has an effect on other members in the family (Nichols & Schwartz,
1998). Therefore, it seems to be a reasonable assumption that all family members will be
affected in some capacity as they face challenges that are unique to living with a child with a
disability. In particular, clinicians and researchers have become increasingly interested in
how a child with autism alters the functioning of family members. With autism, the nature of
the social and communication impairments, in addition to the restricted and stereotyped
patterns of behaviour, requires that family members adapt to the manner in which a child
with autism interacts with them. Therefore, it may be assumed that parents and siblings have
qualitatively different relationships (e.g., more impoverished interactions as a result o f social
and communication impairments, rigidity) than those found in families with typically
developing children. Moreover, the nature of the impact of a child with autism on family
functioning as a whole (e.g., family outings can become very challenging), has led to
assumptions that individual family members are exposed to high levels of stress that, in turn,
affect their overall adjustment (Fisman et al., 1996).
The Effects o f a Child with Autism on Parents
Much o f the research involving families of children with autism has focused on the
impact upon parents. A key assumption has been that parents may feel inadequate as
caregivers as a result of the unpredictable, disruptive, rigid, and stereotyped behaviours a
child with autism often exhibits. Furthermore, the community may view the childs
behaviours as a consequence of poor child rearing by the parents, subsequently contributing
to parents feelings of inadequacy and resulting in greater parental stress (Bristol, 1984). In a
qualitative study with parents of three individuals with autism, one of the themes that
emerged concerned parents feelings of rejection from family, friends, and strangers in the
community, in addition to feeling judged about their competence as parents (Schall, 2000).
Given these challenges, it is perhaps not surprising that parents of children with
autism are significantly more stressed than parents of children with other disabilities (e.g.,
Down Syndrome) or parents o f typically developing children (Fisman et al., 1996; Fisman et
al., 1989; Hastings & Johnson, 2001; Holroyd & McArthur, 1976; Sanders & Morgan, 1997).
The higher levels of distress reported by both mothers and fathers of children with autism
appear to be related to the childs inability to adapt to environmental change, the frequency
and severity o f the childrens behaviour problems, concern for the childs long-term
dependency, and poor acceptance by the community (Fisman et al., 1996; Sharpley, Bitsika,
& Efremidis, 1997). In addition to increased levels of stress, mothers of children with autism
have been found to experience greater emotional difficulties. For example, Olsson and
Hwang (2001) found that mothers of children with autism reported more depressive
symptomology on the Beck Depression Inventory than mothers of children with either an
intellectual disability or no handicap.
Research in this area has more recently shifted from focusing on group comparisons
to investigating within group factors that predict outcomes for parents of children with
autism, thereby identifying why some parents have more successfully adapted to having a
child with autism in the family, and why others are experiencing significant amounts of stress
and mental health problems (Diamond, 2005; Perry, 2004). In general, coping strategies
have been identified as strong predictors for the functioning of parents of children with
autism, with emotion-oriented coping strategies predictive of greater parental distress
(Diamond, 2005), as well as higher levels of depression and greater spousal relationship
problems (Dunn, Burbine, Bowers, & Tantleff-Dunn, 2001). In addition, parents who
perceive the child with autism as exhibiting a greater number of symptoms and challenging
behaviours report higher levels of parental distress (Diamond, 2005; Perry, 2004). In terms
of positive outcomes, Diamond (2005) identified greater involvement in parent advocacy as
predictive of parents perception of the positive impact a child with autism has on the family.
Challenges fo r Siblings o f Children with Autism
There has been a growing body of literature that has focused on the psychosocial
functioning of the healthy siblings in the family, as clinical experience has suggested that
siblings often face many challenges when there is a child with a disability in the family.
Siblings are likely to experience a decrease in parental attention because parents are
preoccupied with meeting the needs of the child with a disability (Hannah & Midlarsky,
1985). Since parents often need to devote a lot of their time and energy to the child with a
disability, it has been assumed that siblings may also be burdened with excessive child-care
and household responsibilities (Breslau, Weitzman, & Messenger, 1981; Hannah &
Midlarsky, 1985; Lobato, 1983; McHale, Simeonsson, & Sloan, 1984; Meyer & Vadasy,
1994; Rodrigue et al., 1993; Seligman, 1983; Simeonsson & McHale, 1981). This
assumption was supported by McHale and Gamble (1989), who explored the actual time
siblings spent in child-care and household activities. They found that siblings of children
with mental retardation reported spending more time in care-giving activities and chores than
siblings o f typically developing children. As a result of these responsibilities in the home,
siblings may miss out on important relationships and experiences outside of the home
(Seligman, 1983), such as spending time with peers after school.
Not only may siblings feel burdened by their responsibility for child-care and
household activities, but they may also feel ignored and unappreciated for their
accomplishments (Seligman, 1983). Some clinicians have suggested that parents have higher
expectations for typically developing siblings to succeed in order to compensate for the
limitations of the child with the disability (Hannah & Midlarsky, 1985; Seligman, 1983).
Such expectations may produce resentment and anxiety for the sibling (Meyer & Vadasy,
1994). Furthermore, siblings may place very high expectations on themselves for excelling
in areas such as academics and athletics (McHale et al., 1984) which, for some siblings, may
be motivated by the quest for parental attention and approval (Meyer & Vadasy, 1994).
In addition to those more general difficulties discussed above for siblings of children
with disabilities, siblings of children with autism in particular are believed to confront unique
challenges. Similar to parent reports, it has been suggested that these siblings may encounter
negative reactions from strangers due to the stereotypical, repetitive, and unpredictable
behaviour o f the child with autism who appears physically normal (Morgan, 1988). This
may provoke embarrassment, frustration, and/or anger in the sibling. Indeed, Roeyers and
Mycke (1995) found that siblings of children with autism reported feeling more
embarrassment than siblings of children with mental retardation and siblings of typically
developing children. Siblings o f children with autism may also face difficult behaviours and
demands o f the child with autism. Bagenholm and Gillberg (1991) reported that siblings of
children with autism experienced more problems with their brother/sister bothering them and
breaking their possessions than siblings of children with either mental retardation or no
disability.
Therefore, not only do siblings of children with autism face similar issues to those of
other siblings of children with disabilities (e.g., increased responsibilities, decreased parental
attention, and high expectations for achievement), they must also deal with issues unique to
having a child with autism within the family. As a result, research has been conducted to
investigate whether siblings o f children with autism are at increased risk for psychosocial
adjustment problems.
Psychosocial Adjustment of Siblings of Children with Autism
Within childhood psychopathology, the broad categories of externalizing and
internalizing behaviours have often been used as indicators of childrens psychosocial
adjustment (Cicchetti & Toth, 1991). Childhood behaviours that are externalizing in nature
include hyperactivity, rule-breaking behaviours, and aggression whereas internalizing
behaviours can be characterized by anxiety, depression, and somatization (Achenbach &
Rescorla, 2001). In the sections that follow, empirical research that has examined
psychosocial adjustment in siblings of children with autism is presented, in addition to the
impact that factors found to be important for children in the general population and
developmental disabilities field may have for siblings of children with autism, specifically
academic achievement, self-concept, social support, and parental distress. Moreover, factors
that are believed to be particularly relevant for the psychosocial adjustment of siblings of
children with autism (i.e., siblings perception of severity of disability and parent advocacy)
are discussed.
Some studies have reported greater externalizing or internalizing behaviour problems
in siblings of children with autism. Bagenholm and Gillberg (1991) found that siblings of
children with autism (n = 20) and mental retardation (n = 20) were reported by their mothers
to exhibit significantly more problems in the areas of inattention, hyperactivity, and conduct
problems than siblings of typically developing children (n = 20). Gold (1993) found siblings
of boys with autism (n = 22) scored significantly higher on a self-report measure of
depression than the siblings o f typically developing boys (n = 34). Based on the cutoff score
indicative o f mild depression, 50% of siblings of boys with autism were in the depressed
range compared to only 26% in the comparison group. Smith (2000) found that siblings of
children with autism (n = 29) exhibited significantly higher internalizing behaviours than the
norms as reported by parents on the Child Behavior Checklist. An examination of individual
scores revealed that prior to completing a sibling support group, 36% of siblings (n = 25)
exhibited internalizing behaviours in the borderline to clinically significant range, while 20%
of siblings had externalizing behaviour scores that fell within the borderline to clinical range
(Smith & Perry, 2004).
Other studies have found that siblings of children with autism are exhibiting both
internalizing and externalizing behaviour problems. Hastings (2003) reported that siblings of
children with autism (n = 22) were reported by parents to have more overall adjustment
problems in comparison to a normative sample of British children. Similarly, results from a
study by Verte et al. (2003) indicated that siblings of children with high functioning autism
(n = 29) exhibited significantly more internalizing and externalizing problems than siblings
o f children with no disability (n = 29). Two studies that compared the psychological
functioning of siblings of children with autism or PDD, Down Syndrome, and no handicap
reported that siblings of children with autism or PDD were reported by parents to exhibit a
greater number of both internalizing and externalizing behaviour problems than siblings of
typically developing children, but similar rates of behaviour problems to siblings of children
with Down Syndrome (Fisman et al., 1996; Rodrigue et al., 1993). Fisman et al. (1996) also
found that teachers reported significantly more internalizing problems for siblings of children
with autism or PDD than for siblings of children with either Down Syndrome or no
disability. Three years later, these siblings of children with autism or PDD continued to
show more externalizing behaviours by parent report and marginally significant internalizing
behaviours by teacher report in comparison to control children (Fisman, Wolf, Ellison, &
Freeman, 2000).
In contrast to the research findings described above, some studies have reported that
siblings of children with autism are not at greater risk for exhibiting internalizing and
externalizing behaviours. A recent study by Pilowsky, Yirmiya, Doppelt, Gross-Tsur, and
Shalev (2004) found that behavioural problems in siblings of children with autism in = 30)
did not differ significantly from siblings of children with mental retardation (n - 28) or
developmental language delay (n = 30) by parent report. Ferrari (1984) found no significant
differences in internalizing or externalizing behaviours between siblings of children with
PDD (n = 16), siblings of children with diabetes (n = 16), and siblings of typically
developing children (n = 16) as reported by parents. In comparison to a normative sample,
Mates (1990) reported no significant differences on a parent report measure of adjustment for
siblings of children with autism.
Kaminsky and Dewey (2002) also found no significant differences in internalizing
and externalizing behaviour problems for siblings of children with autism (n = 30) in
comparison to siblings of children with Down Syndrome (n = 30) and siblings of typically
developing children (n = 30) by parent report. However, 77% of the siblings in this study
had parents who attended support groups, and further examination of their means on the
Child Behavior Checklist showed they exhibited fewer internalizing, externalizing, and total
adjustment problems than those siblings whose parents did not attend support groups.
Kaminsky and Dewey (2002) suggest that those parents who are more active in support
groups may have gained greater social support through their interaction with other families of
children with autism, which may in turn lead to healthier psychosocial adjustment for the
siblings.
Methodological Differences and Limitations
Overall, it appears that siblings of children with autism are a group at greater risk for
exhibiting adjustment problems in comparison to siblings of typically developing children.
However, findings are not consistent in terms of whether siblings of children with autism
exhibit greater internalizing difficulties, more externalizing problems, or both. It is also
unclear as to whether siblings of children with autism exhibit greater adjustment problems
than siblings o f children with other disabilities. The discrepancy in findings across studies
may be accounted for by several methodological issues, such as inclusion of varying
disability groups (e.g., Mental Retardation, Down Syndrome, and Diabetes), use of different
methodologies (e.g., standardized pencil-paper questionnaires, interviews), and use of
different measures to examine adjustment (e.g., Child Behavior Checklist (CBCL), Survey
Diagnostic Instrument, Childrens Depression Inventory). These methodological differences
limit ones ability to make comparisons across studies and generalize findings.
In addition to the methodological issues described above, many studies rely on
parental reports, usually from the mother (Fisman et al., 1996; McKeever, 1983; McHale,
Sloan, & Simeonsson, 1986). There are several problems associated with relying on parental
reports, such as the potential for parents to under-report the healthy siblings aberrant
behaviour. This may result from parents denial that their healthy child has emotional or
behavioural problems because this runs counter to their high expectations for this childs
success; increased tolerance for the siblings maladaptive behaviour because the behaviours
o f the child with autism are more visible, challenging and difficult to manage; or their
reluctance to admit the healthy siblings difficulties to non-family members (Tew &
Laurence, 1973). Parents may also over-report the frequency of maladaptive behaviours the
healthy sibling engages in due to parental depression, hypervigilance, or a lack of knowledge
about typical behaviours displayed at different developmental periods. Therefore, it is
important to obtain information about siblings psychosocial adjustment from various
sources, including parents and teachers.
Several limitations also prevail in this field o f research, in particular relating to
sample characteristics. With few exceptions (Fisman et al., 1996; Kaminsky & Dewey,
2002), studies are comprised of relatively small samples, resulting in low power for statistical
analyses. Moreover, there are broad age ranges within studies, often spanning early
childhood to late adolescence. Finally, researchers have often neglected to consider whether
siblings of children with autism have received a diagnosis regarding their own functioning.
This is surprising given that siblings of children with autism are at higher risk than siblings of
typically developing children for having autism or PDD (Ritvo, Jorde, Mason-Brothers, &
Freeman, 1989; Yirmiya, Shaked, & Erel, 2001) or cognitive problems (August, Stewart, &
13
Tsai, 1981). This factor could be confounding the results of research studies to date, as
siblings psychosocial adjustment may be a result of challenges related to their own
difficulties rather than, or in addition to, living with a brother or sister with autism.
Therefore, it is important to screen for autism or PDD in siblings of children with autism, as
well as assess siblings cognitive abilities, to control for the possible effects on their
psychosocial adjustment.
Variability in Siblings Psychosocial Adjustment
Despite the methodological issues described above, the available research findings
suggest that, overall, siblings of children with autism are a population at risk for psychosocial
adjustment difficulties. However, one cannot assume that all siblings of children with autism
are necessarily more vulnerable to internalizing and externalizing problems (Lobato, 1983).
Therefore, following from the parent literature, research must begin to shift from an
examination of group differences to within group variability. Grossman (1972) interviewed
college-aged siblings of children with mental retardation (n = 83) and found 45% of them
reported experiencing negative consequences from having a brother/sister with mental
retardation, such as guilt, resentment, and parental neglect. However, another 45% of the
siblings said that they had benefited from the experience by developing greater understanding
and compassion for others, as well as being more sensitive to prejudice than siblings of
nonhandicapped children (n = 66). Cleveland and Miller (1977) also found that the majority
of adult siblings of children with mental retardation reported that they coped and adapted
successfully to their unique situation while growing up. While these studies were conducted
in previous decades, such that potential cohort effects cannot be ruled out, and they were
based on retrospective accounts that may have allowed siblings to selectively recall their
14
experiences or reflect on them in a more mature and objective manner (Lobato, 1983),
variability in siblings psychosocial adjustment is evident.
Following from a risk and resiliency framework, it appears that certain child, sibling,
and parent characteristics may have negative effects on some siblings of children with
autism, engendering greater risk for psychosocial adjustment difficulties, while other factors
may act as protective factors for siblings, reducing the risk for maladjustment and leading to
more positive outcomes. It is crucial to identify those factors that can better predict which
siblings are more likely to have externalizing and internalizing behaviour problems, and thus
identify which siblings o f children with autism should be the target for preventive or
intervention strategies.
Factors Affecting Psychosocial Adjustment
Previously, within developmental disability research, static variables (e.g., siblings
gender, siblings age, relative birth order, and family size) and their relationship with
siblings psychosocial adjustment have been the focus. In general, these variables have not
been found to have a strong relationship with sibling adjustment (Hastings, 2003; Mates,
1990, Pilowski et al., 2004) although there has been some empirical evidence to suggest that
siblings age in addition to the interaction between siblings gender and relative birth order
may have an impact on siblings adjustment (Breslau, 1982; Ferrari, 1984; Fisman & Wolf,
1991; Gold, 1993; Lobato, 1983; McHale et al., 1984; Rodger, 1985; Rodrigue et al., 1993).
In addition to the factors mentioned above, socioeconomic status (SES) has been
identified in the general population and disability literatures as an important factor to
consider when examining family functioning (Dyson, 1991; Garmezy & Masten, 1986). Of
relevance to the current study, low SES has been shown to negatively impact various
developmental outcomes in children (McLoyd, 1998). A recent study by Lansford et al.
(2006) found that, in their community sample of 585 children, low SES was significantly
related to higher levels of internalizing and externalizing behaviours as reported by teachers.
Dodge, Pettit, and Bates (1994) also found that low SES was predictive of externalizing
behaviour problems for children (N= 513) followed from preschool to Grade 3. Therefore, it
is important to determine whether certain static variables are significantly associated with
siblings functioning and control for them accordingly.
More recent studies have emphasized the importance of investigating the relationship
between dynamic sibling and family variables with siblings psychosocial adjustment
(Fisman et al., 1996; 2000; Hastings, 2003; Kaminsky & Dewey, 2002; Verte et al., 2003), as
they can be targeted for prevention and/or intervention efforts. Findings from research
examining externalizing and internalizing problems in children in the general population, in
conjunction with sibling research in the area of developmental disabilities, have guided the
variables o f interest in the present study and are presented below.
Academic Achievement
Academic achievement difficulties have been noted to comprise one of the major
problems in childhood (Kazdin, 1987). The relationship between academic difficulties and
externalizing behavioural problems has been well established within the general population
(Hinshaw, 1992). However, there has been debate regarding the directionality of the
relationship between behaviour problems and learning difficulties (Adams, Snowling,
Hennessy, & Kind, 1999). Some research has suggested that antisocial behaviours tend to
negatively impact academic achievement during the school-age years (Masten et al., 2005).
The impact of academic achievement on antisocial behaviours has not been as clear, although
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
achievement difficulties have been found to lead to a worsening of antisocial behaviours in
secondary school (Masten et al., 2005). Adams et al. (1999) investigated the relationship
between academic abilities and behavioural problems for children in grades 3 to 6 (n = 364).
When controlling for age and cognitive ability, scores on the dimensions of hyperactivity,
emotionality, and conduct disorder were significantly correlated with reading performance,
while only hyperactivity and emotionality scores were significantly related to arithmetic
skills. Further evidence for the relationship between academic achievement and behavioural
difficulties stems from research evaluating interventions aimed at preventing problem
behaviours. This research has shown that improving competence at school results in reduced
risk for developing problem behaviours (Hawkins, Catalano, Kosterman, Abbot, & Hill,
1999).
In comparison, there has been less research aimed at investigating the relationship
between academic achievement and internalizing symptoms. Nevertheless, current evidence
suggests that academic difficulties are related to increases in internalizing symptoms, while
the reverse, internalizing problems predicting poorer academic achievement has been less
consistent (Masten et al., 2005). A study by Maughan, Rowe, Loeber, and Stouthane-Loeber
(2003) examined the relationship between reading difficulties and depressive symptoms.
Participants were selected from the Pittsburgh Youth Study. Boys who received scores in the
top 30% o f an antisocial behaviour risk index (based on the CBCL, TRF, and Self-Report
Delinquency Inventory) were included in the study, as well as another 30% of boys randomly
selected from the remaining sample, and all participants were stratified into three groups
based on age. Poor readers were defined as those with a score at or below the 6th percentile
on the California Achievement Test at Time 1 and scores at or below the 50th percentile at
17
Time 2. Results showed that poor readers exhibited significantly higher rates of depressed
mood at Time 2 (6 months later) on a self-report measure of depressive symptomatology than
boys not experiencing reading difficulties. Reading problems continued to show a significant
relationship with depressed mood when additional family factors and problems of an
externalizing nature were included as covariates.
A study by Masten et al. (2005) tested various cascade models to determine the most
plausible model for explaining relationships between academic achievement, externalizing
behaviours, and internalizing behaviours over time. Participants were drawn from a sample
of 205 children (aged 8 to 12 years) who were followed up after 7,10, and 20 years. Results
indicated that the presence of externalizing problems at the time of initial data collection
negatively impacted academic achievement by adolescence, which contributed to
internalizing problems in young adulthood. However, the authors also indicated that
externalizing problems and academic achievement were associated at the time of initial data
collection, suggesting the possibility of bidirectional effects.
To date, within the developmental disability field there are no known published
studies that have examined the relationship between siblings academic achievement and
their psychosocial adjustment. Given findings from the general population, it is surprising
that this has been a neglected area of research, particularly in the field of autism where
siblings are more likely than the general population to have learning problems (August et al.,
1981). Therefore, it is reasonable to assume that there will be a significant relationship
between the academic achievement o f siblings of children with autism and their externalizing
and internalizing behaviours.
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Self-Concept
Self-concept can be described as a relatively stable set of self-attitudes reflecting an
individuals perceptions of being capable, significant, successful, and worthy with respect to
his/her behaviours and attributes (Auletta & DeRosa, 1991; Piers, 1984). Within the general
population, self-esteem has been found to be an important predictor of childrens
internalizing (Robinson, Garber, & Hilsman, 1995) and externalizing behaviours (Masten &
Garmezy, 1985; Rutter, 1990). Interestingly, sibling research in the area of developmental
disabilities has tended to examine self-concept as indicative of siblings overall adjustment
(i.e., as an outcome variable). The clinical assumption underlying research on self-concept in
siblings of children with disabilities has been based on anecdotal reports that siblings over
identify with their handicapped brother or sister (Ferrari, 1984; Meyer & Vadasy, 1994;
Simeonsson & McHale, 1981; Wilson, Blacher, & Baker, 1989). Siblings know that they
are, in some ways, similar to their brother or sister, such as sharing the same parents, the
same last name, in addition to potentially sharing similar physical characteristics (e.g., hair or
eye colour). In turn, siblings may become concerned with how many characteristics they
actually have in common (McHale et al., 1984; Simeonsson & McHale, 1981). As a result of
these concerns, over-identification may follow, whereby siblings wonder whether they also
share the childs problems (Meyer & Vadasy, 1994), internalize the features of the childs
disability, and develop poor self-concept.
McHale and Gamble (1989) examined the self-concept o f 62 children using the
Harter Perceived Competence Scale. Half of the children had a younger sibling with mental
retardation, while the other half had a younger sibling with no identified disability. The
results indicated that the siblings of children with mental retardation scored significantly
lower than siblings of children with no disability on their perceptions of their social
acceptance and behavioural conduct. Also, sisters of children with disabilities reported lower
global self-worth than sisters of children without a disability and the brothers of children
from both the disabled and control groups. However, in contrast to findings from this study,
several other studies have found that the self-concept of siblings of children with disabilities
is not significantly different from that o f siblings of children with no disability (Auletta &
DeRosa, 1991; Hannah & Midlarsky, 1999; Lobato et al., 1987; Tritt & Esses, 1988).
Similarly, studies examining the self-concept o f siblings of children with autism in
particular have found that it is not significantly different from that of siblings of children
with mental retardation/Down Syndrome or siblings of typically developing children
(Bagenholm & Gillberg, 1991; Rodrigue et al. 1993). Moreover, siblings of children with
autism attained group mean scores, on the Piers-Harris Childrens Self-Concept Scale, that
were not significantly different from norms (Bagenholm & Gillberg, 1991; Mates, 1990), and
in some instances, were significantly higher than norms (Smith, 2000). Therefore, findings
suggest that siblings o f children with autism have average self-concepts that are similar to
siblings o f children with other disabilities or no handicap. However, there may be within
group variability, with some siblings of children with autism possessing good self-concepts
while others maintain poor self-concepts. Consequently, a shift from examining self-concept
as indicative o f adjustment (i.e., as an outcome), to investigating the impact self-concept may
have on siblings psychosocial adjustment (i.e., as a predictor) appears warranted. In this
regard, Wolf, Fisman, Ellison, and Freeman (1998) examined siblings self-concept as a
predictor o f parent and teacher reports of internalizing and externalizing problems. They
found that siblings perceived competence was a significant predictor for parents reports of
20
both internalizing and externalizing behaviour problems. Therefore, siblings with lower
feelings of self-competence had greater adjustment problems and this continued to be true for
siblings three years later.
To date, the study by W olf et al. (1998) is the only known study within the field of
autism to have investigated the effect of siblings self-concept on their adjustment.
Therefore, additional research in this area is needed before any conclusions can be made
regarding the importance o f self-concept to internalizing and externalizing problems in
siblings of children with autism. Moreover, a clear operational definition of self-concept
must be determined, as there has been controversy in recent years over whether one should
regard self-concept as a unidimensional or multidimensional construct (Harter, 1982).
Research conducted by Harter (1985a) has shown that childrens self-evaluations vary across
distinct domains, and is independent from global self-worth which represents how much
children like themselves as people.
Perceived Social Support
Social support can be defined as the informational, instrumental, psychological,
material, and physical resources provided by members of an individuals personal network
that buffers one from negative reactions to stressful events and promotes and enhances both
growth and well-being (Dunst, Trivette, Hamby, & Pollock, 1990, p. 204). An individuals
perceived support from at least one source has been well established as having an association
with better psychosocial adjustment (Garmezy, 1985; Jenkins & Smith, 1990; Masten &
Garmezy, 1985). Demaray and Malecki (2002) found a significant negative relationship
between perceived social support and internalizing and externalizing behaviour problems for
typically developing children in grades 3 to 12, with low social support scores resulting in
21
more internalizing and externalizing behaviour problems. Social support has also been found
to be a significant predictor for internalizing and externalizing behaviour problems in
children aged 7 to 13 years (Jackson & Warren, 2000).
Within the field of autism, a primary focus has been on examining the role of social
support in promoting healthy adjustment for parents of children with autism. Parents with
high levels o f perceived social support from various sources (e.g., spouse, immediate and
extended family members, friends, and individuals within the community) have reported less
stress and fewer emotional and physical problems (Bristol, 1984; Dunst, Trivette, & Cross,
1986; Dyson, 1997; Fisman & Wolf, 1991; Konstantareas & Homatidis, 1989; Perry, 2004).
Considering the importance of perceived social support for the well-being of children
in the general population, as well as parents of children with autism, it seems crucial that
researchers investigate how the perception of having supportive relationships with others
may impact the adjustment of siblings of children with autism. Only two studies have
investigated this research question to date. A study by Kaminsky and Dewey (2002) found
that for siblings of children with autism, aged 8 to 18, perceived social support from parents,
teachers, classmates, and close friends was not significantly associated with internalizing and
externalizing behaviours as reported by parents on the CBCL. In contrast, W olf et al. (1998)
examined the impact of social support on the psychosocial adjustment of siblings aged 8 to
18 years and found that siblings perception of receiving social support from teachers and
close friends was related to fewer externalizing behaviours as reported by parents and
teachers. At follow-up 3 years later, social support from teachers continued to be related to
fewer externalizing behaviours as reported by parents. At this time, social support from
parents was also significantly related to fewer internalizing and externalizing behaviours as
22
reported by teachers. Given that siblings perceived social support has been relatively
overlooked, even though it has been found to be extremely important for healthy adjustment
in parents of children with autism, further research into its impact on siblings psychosocial
functioning is needed.
Parental Distress
Parental distress is a variable that has been of interest in terms of its relationship with
childrens internalizing and externalizing behaviours. Within the general population,
research has indicated that higher levels of parental distress are significantly related to
greater internalizing and externalizing behavioural difficulties in children (Donenberg &
Baker, 1993; Mesman & Koot, 2000). Given results from the general population literature,
in addition to the substantial body of research in the field of autism that has consistently
found parents of children with autism to report significantly higher levels of distress than
parents of children with other disabilities or parents of typically developing children (Fisman
et al.,1996; Fisman et al., 1989; Holroyd & McArthur, 1976) it appears to be a reasonable
assumption that parental distress may be a critical factor affecting the adjustment of siblings
of children with autism, making them more vulnerable to experiencing difficulties.
A recent study by Hastings (2003) examined the impact of maternal stress on the
adjustment of 22 siblings of children with autism. Results indicated that maternal stress did
not account for a significant amount of variance in mothers reports of total adjustment
problems (i.e., emotional problems, conduct problems, hyperactivity, and peer problems) in
siblings after static variables were considered. However, a limitation of this study includes
low power for detecting significant results given the small sample size and the number of
predictor variables included in the analysis.
Fisman et al. (1996) investigated parental distress as a possible mediator of siblings
internalizing and externalizing behaviours when they have a brother/sister with autism. At
the time of initial data collection, the parental distress factor (made up of scores from the
Parenting Stress Index and Beck Depression Inventory) mediated the relationship between
parent reports of siblings internalizing and externalizing behaviours and group membership
(i.e., PDD, Down Syndrome, and Controls). Therefore, the relationship between group
membership and siblings internalizing and externalizing behaviours as reported by parents
became non-significant when the parental distress factor was used as a covariate. Three
years later, parental distress continued to be a mediator of parent reports of externalizing
behaviors for siblings of children with autism (Fisman et al., 2000). However, parental
distress was not a significant mediator of group membership and siblings internalizing and
externalizing behaviours as reported by teachers at either time period.
The findings from Fisman et al. (1996; 2000) suggest that parental distress may
account for siblings psychosocial adjustment difficulties as reported by parents. However,
the possible explanation for this finding may be that parents who are experiencing higher
levels of distress have less tolerance for aberrant behaviours displayed by siblings, and
therefore over-report internalizing and externalizing problems (Visconti, Saudino, Rappaport,
Newburger, & Bellinger, 2002). This assumption is consistent with the finding that parental
distress was not a mediator for teachers reports of adjustment difficulties in siblings.
Therefore, the next logical step would be to determine whether parental distress contributes
to the variability in the adjustment of siblings of children with autism as assessed using
multiple respondents.
24
Perceived Social Support as a Moderator fo r Parental Distress and Psychosocial Adjustment
As discussed, parents of children with autism, as a group, report high levels of stress.
Moreover, parental distress has been shown to have a negative impact on siblings in the
family, resulting in greater psychosocial adjustment difficulties. However, it is plausible that
social support may reduce the influence of stress on family members (Visconti et al., 2002).
Nevertheless, there is very little research examining the relationship between parental
distress, social support and child behaviour problems. Visconti et al. (2002) examined the
interaction between parent stress and parents perceived social support on childrens total
behaviour problems. In this study, in which 168 children with congenital heart disease
underwent an arterial switch repair, results indicated that parents reported fewer behaviour
problems in their children at Time 2 (children aged 4 years) when levels of parent stress were
low and levels of social support were high at Time 1 (children aged 1 year). While the study
by Visconti et al. (2002) demonstrated the moderating role of parents perceived levels of
social support, it can be assumed that siblings perceived social support is more likely to
buffer the effects of parental distress on their own psychosocial adjustment and should be
investigated.
Siblings Perception o f Severity o f Disability
Within the field of disabilities, the severity of a childs disability has been explored as
potentially having a relationship with siblings psychosocial adjustment. The expectation has
been that parents will need to devote more time and attention to care for the childs needs
when the disability is more severe, resulting in less attention and resources for the siblings
(Breslau et al., 1981; Tew & Laurence, 1973), as well as greater child-care and household
responsibilities (Hannah & Midlarsky, 1999). Some studies including samples of siblings of
25
children with physical disabilities have found no significant relationship between the severity
of a childs physical disability and siblings psychosocial functioning (Breslau et al., 1981;
Tew & Lawrence, 1973). In contrast, findings from studies of siblings of children with
mental retardation have suggested that siblings are more adversely affected when the childs
disability is more severe (see reviews by McHale et al., 1984; Powell & Ogle, 1985;
Simeonsson & McHale, 1981; Vadasy, Fewell, Meyer, & Schell, 1984).
Although little research has explored the relationship between severity of disability
and siblings psychosocial adjustment in the area of autism, it has been suggested that
disabilities that are relatively more ambiguous, such as autism, are associated with greater
sibling maladjustment (McHale et al., 1984). Smith (2000) was the first known study to
investigate the influence o f severity of disability on the psychosocial adjustment of siblings
of children with autism. Using an objective measure with good psychometric properties for
severity of autism, results indicated no linear relationship between severity of autism and
siblings psychosocial adjustment. In contrast, a study by Pilowsky et al. (2004) found that
the verbal ability of children with autism and children with mental retardation was
significantly related to siblings psychosocial adjustment, with siblings of children with
autism and mental retardation exhibiting greater behavioural difficulties and poorer
socialization skills when the verbal ability of the children with a disability was poor. This
finding was not true for siblings of children with developmental language delays.
Studies investigating the relationship between severity of disability and siblings
psychosocial adjustment are sparse, have mixed findings depending on the population
studied, and have different definitions of what constitutes severity. In fact, the measures of
severity often involve use o f a nominal scale with a limited range, and confound physical
disability with the degree of developmental delay. Moreover, degree of severity has typically
been based on parent reports, with few exceptions (Pilowsky et al., 2004; Smith, 2000).
Given the unique challenges siblings may encounter (e.g., negative reactions from strangers,
embarrassment) due to the rigid, disruptive, and stereotyped/repetitive behaviours a child
with autism often exhibits, in addition to the additional behavioural difficulties a child with
autism may display (e.g., tantrums, aggression), it appears that siblings perception of
severity of autistic behaviours may be more important to their psychosocial adjustment than
severity of disability based on parental reports or objective measures. Based on previous
research findings discussed earlier regarding the challenges the siblings of children with
autism may face (Bagenholm & Gillberg, 1991; Morgan, 1988; Roeyers & Mycke, 1995),
one could assume that siblings who perceive the child with autism as displaying a greater
frequency o f autistic behaviours and behavioural difficulties would have more psychosocial
adjustment difficulties.
Parent Advocacy
Parents of children with disabilities typically need to learn to become effective
advocates on behalf o f their children in order to manage challenges that will likely arise, such
as obtaining appropriate services for their children. Effective advocacy has been defined as
a non-violent empowerment and support process, through which families with relatives that
have special needs can constructively express dissatisfaction and contribute creative solutions
to problems existing in human service system (Munro, 1991, p. 1). Some clinicians and
researchers believe that when parents are involved in advocacy activities, parents may
experience lower levels o f stress because they benefit from greater access to services
(Balcazar, Keys, Bertram, & Rizzo, 1996). In addition, they may benefit from social support
received through their involvement in advocacy groups (Intagliata & Doyle, 1984) and
participating in advocacy may increase their feelings of self-efficacy (Wehemeyer, Kelchner,
& Richards, 1996). However, it could also be argued that participating in advocacy may
increase parental stress. For example, in a study by Scorgie, Wilgosh, and McDonald (1996),
parents reported a feeling of being burdened by taking on the advocacy role, a feeling that is
exacerbated by professionals that place excessive pressure and expectations on parents to
fulfill this role. Moreover, parents may become so preoccupied with advocating for the
needs of their disabled child that it prevents them from interacting with individuals outside of
the world of developmental disabilities (Intagliata & Doyle, 1984), and may negatively affect
relationships with other family members (e.g., spouse, typically developing children).
There is little research investigating the impact of advocacy on parental stress.
Nachshen and Jamieson (2000) examined factors relating to advocacy that lead to lower
levels of parental stress and those that lead to increased levels of parental stress as measured
by the Family Stress and Support Questionnaire. These researchers interviewed 25 mothers
and 1 father of children with developmental disabilities and conducted a qualitative analysis.
Advocacy was found to be related to lower levels of stress when parents used advocacy as a
coping strategy (e.g., for dealing with professionals, the education system). It allowed
parents to become informed and educate others, and resulted in positive change, such as
obtaining services. Parents also had lower levels of stress as a result of their participation in
advocacy activities when they viewed professionals as cooperative partners and obtained
support and encouragement from other parents of children with similar disabilities. On the
other hand, increased levels of parental stress were found when parents perceived advocacy
as a challenge, and failed to see any successful outcomes to their advocacy actions.
28
Furthermore, when advocacy efforts were at the expense of personal relationships and career
advancement, higher stress levels were reported by parents.
Therefore, preliminary research suggests that parents engagement in advocacy
actions may lead to either higher or lower levels of parental stress, depending on their
perception of the role o f advocacy in their lives. An assumption could be drawn from these
findings, namely that parents involvement in advocacy actions may directly and/or indirectly
affect the adjustment of other family members, specifically the healthy siblings in the family.
Clinical experience with families of children with autism has shown that parents can become
so preoccupied with advocating for the needs of their child with a disability that it prevents
them from spending quality time with the healthy siblings. As a result, siblings may
experience a greater loss o f resources than typically found (e.g., parental attention, financial
resources), potentially leading to poorer psychosocial adjustment.
Summary
In summary, the literature review has demonstrated that siblings of children with
autism have been shown to be a group at risk for psychological adjustment difficulties.
However, there is reason to believe that a number of siblings are well-adjusted. Relative to
the general population and disability literature, current literature within the field o f autism
reveals little about the variability in siblings psychosocial adjustment and the individual and
family factors that are predictive of greater internalizing and externalizing behaviour
problems in siblings of children with autism. Given the research findings demonstrating the
impact of academic achievement, self-concept, perceived social support, and parental distress
on the psychosocial adjustment for children in general and for siblings of children with
various disabilities, it is believed that they are also key factors for siblings of children with
29
autism. Moreover, very little research has been published regarding factors that may be more
specific to living with a child with autism and how they assist us in further understanding the
psychosocial adjustment for siblings. In the current study, siblings perceptions of severity
of disability and parent advocacy have been identified as factors that may shed additional
light on siblings psychosocial adjustment.
Positive Outcomes
Historically, research in the field of developmental disabilities has tended to take a
pathological approach to investigating the effect a child with a disability has on other family
members. However, individual family members can potentially have positive experiences as
well when there is a child with a disability in the family (Hastings & Taunt, 2002), and
therefore it appears to be important to examine both. For example, Mullins (1987) analyzed
the content of 60 books written by parents of children with disabilities, and found that
although the theme of emotional stress was evident, many of the parents also reported that
the experience led to increased meaning and fulfillment in their lives. Nevertheless, the
existing research is relatively small and has tended to focus on parents of children with
disabilities. However, as indicated previously, there are many siblings of children with
disabilities for whom there is no indication of psychopathology, who recall retrospectively as
adults positive experiences growing up, and who go on to lead successful lives (Cleveland &
Miller, 1977; Grossman, 1972). Therefore, it has been suggested that research should
explore positive outcomes to being the sibling of a child with a disability (Rossiter & Sharpe,
2001 ).
Researchers examining both negative and positive outcomes for siblings of children
with developmental disabilities or autism have tended to focus on self-concept or perceived
competence as a positive outcome (Auletta & DeRosa, 1991; Bagenholm & Gillberg, 1991;
Dyson, Edgar, & Cmic, 1989; Lobato et al., 1987; Mates, 1990; McHale & Gamble, 1989;
Rodrigue et al., 1993; Tritt & Esses, 1988). There have been some exceptions, with a few
researchers examining social competence in siblings of children with developmental
disabilities or autism (Hannah & Midlarsky, 1999; Pilowsky et al., 2004; Verte et al., 2003).
Similar to results from studies examining self-concept, there were no significant differences
between siblings o f children with developmental disabilities and siblings of typically
developing children on measures of social competence. One exception was a study by Verte
et al. (2003) who found sisters of children with high functioning autism ascribed more
socially skilled behaviour to themselves. Finally, a well designed study examining perceived
self-efficacy indicated that a group of adolescent siblings of children with various disabilities
(e.g., autism, mental retardation, physical disabilities) did not differ in their reports of
perceived self-efficacy in comparison to siblings of typically developing children (Grisson &
Borkowski, 2002).
Prosocial Behaviour
In the following sections, literature demonstrating the value of examining prosocial
behaviour as a positive outcome is presented, as well as what is currently known about its
relationship with static variables (age and gender) and dynamic variables (self-concept and
social support) for children in the general population. Moreover, characteristics that are
believed to be important for siblings of children with autism in particular are discussed in
relation to prosocial behaviour.
In developmental psychology, a particular area of interest regarding children within
the general population has been the development and correlates of prosocial behaviour,
defined broadly as voluntary behaviour intended to benefit another (Eisenberg, 1982;
Eisenberg & Fabes, 1998, p. 701). Children are believed to learn prosocial behaviour from
parents and from interactions with siblings and peers. Of relevance to the current study, it
has been argued that the sibling relationship may play an important role in the development
of a childs prosocial behaviour (Dunn & Munn, 1986). Similar to the peer socialization
perspective, a sibling relationship may provide unique opportunities to learn and practice
prosocial skills. A study by Dunn and Munn (1986) found that older siblings in a dyad were
more likely to engage in prosocial behaviours (i.e., sharing, comforting, helping, and
cooperating) than their younger siblings. O f relevance to siblings of children with autism, it
has long been presumed that the typically developing sibling often takes on the role of the
older sibling, even when he or she is younger than the child with a disability. Given that one
of the main impairments in autism is social interaction, one could also assume that the
typically developing sibling would be more responsible for initiating and responding to the
child with autism, including helping, sharing, cooperating and understanding, all considered
to be forms o f prosocial behaviour. Moreover, parents may place additional expectations on
the sibling to act in a prosocial manner towards the child with a disability.
Further support for the importance of prosocial behaviour as a positive outcome stems
from the potential impact on childrens long term adjustment. Tremblay, Vitaro, Gagnon,
Piche, and Roeyer (1992) were interested in determining whether prosocial behaviour
predicted the future adjustment of disruptive kindergarten boys. Kindergarten boys who
obtained scores above the 70th percentile on the disruptive behaviour component of the
Preschool Social Behaviour Questionnaire participated in this longitudinal study. From this
group o f disruptive kindergarten boys, a disruptive-prosocial group (above the 70th percentile
32
on the prosocial component) and a disruptive-nonprosocial group (below the 30th percentile
on the prosocial component) were created. Results indicated that kindergarten boys in the
disruptive-prosocial group were rated as better adjusted at age 9 than the boys in the
disruptive-nonprosocial group. Specifically, mothers and teachers perceived boys in the
disruptive-prosocial group as engaging in more prosocial behaviours and fewer disruptive
behaviours at age 9.
Factors Affecting Prosocial Behaviour
Gender and Age
Siblings gender and age may play a role in their tendency to engage in prosocial
behaviours. With respect to gender, the prevailing belief is that females are more empathic
and prosocial than males; however, research findings have been inconsistent (Eisenberg &
Fabes, 1998). Wentzel and McNamara (1999) indicated that females were significantly more
likely to exhibit prosocial behaviours than males. This is consistent with a meta-analysis by
Fabes and Eisenberg (as cited in Eisenberg & Fabes, 1998), in which the mean unweighted
effect size (based on 272 effect sizes) was modest and positive, indicating that females
engaged in prosocial behaviour more often than males. When prosocial behaviour was
broken down into distinct categories, gender differences were significantly greater for
behaviours reflecting kindness and consideration than those reflecting instrumental help,
such as comforting and sharing. Therefore, gender differences varied depending on the type
o f prosocial behaviour assessed. Fabes and Eisenberg (as cited in Eisenberg & Fabes, 1998)
also found that gender differences were significantly larger when prosocial behaviour was
measured using self-report / other-report rather than observational methods.
The tendency to engage in prosocial behaviours is believed to increase with age as a
result of developmental changes in cognitive, social, emotional, and motivational processes
and abilities (Eisenberg & Fabes, 1998). Older elementary school-aged children are believed
to adopt an other-oriented approach, in which their reasons for engaging in prosocial
behaviours stem from internalized and altruistic motives, rather than the self-oriented
approach of younger children who tend to decide whether or not to help another based on the
cost to themselves (Eisenberg & Fabes, 1998). Older children are believed to be more likely
to use moral standards to evaluate situations as well as take the perspective of others, which
allows them to attend to the needs of others (Eisenberg & Fabes, 1998). However, a
longitudinal study by Radke-Yarrow and Waxier (1976) did not find an increase in the
frequency o f prosocial responding in children aged 3 to 4 years followed over 6-month
intervals up to 7 Vi years.
Within the field of autism, only one known study has examined whether gender and
age are significant predictors of prosocial behaviour in siblings of children with autism
(Hastings, 2003). In this sample of 22 siblings of children with autism, ranging in ages from
4 to 16 years, results indicated that both gender and relative age were significant predictors
when included first in the regression model. By maternal report on the prosocial behavior
scale from the Strengths and Difficulties Questionnaire, boys were more likely to
demonstrate fewer prosocial behaviours. Furthermore, siblings who were younger than the
child with autism were rated as engaging in less prosocial behaviour. Given the stated
importance o f gender and age on the tendency of children to engage in prosocial behaviour in
the general population, in addition to the findings by Hastings (2003), it is important to
examine or control for the influence of siblings gender and age on the prosocial behaviour of
34
siblings o f children with autism. One can then determine what additional influence dynamic
variables have on prosocial behaviour.
Self-Concept
Developmental psychologists have investigated personal characteristics that may
influence the tendency to behave prosocially. One characteristic in particular that has been
o f interest to some is childrens self-concept. The theoretical basis for assuming a
relationship between self-concept and prosocial behaviour stems from social learning theory.
This theory posits that children learn expectations for how they will behave, how well they
will perform, and how they will be viewed by others (Cauley & Tyler, 1989). It is assumed
that children whose experiences have led to positive expectations, thereby creating a sense of
competence and self-assurance, will develop more positive self-concepts than children whose
experiences have resulted in negative expectations, leading to a sense of inadequacy and self
doubt. As a result, social learning theorists posit that children with positive self-concepts
may be more capable o f empathizing and showing concern for the needs of other children
because they are not threatened by the accomplishments of other children and therefore do
not feel the need to be competitive.
Larrieu and Mussen (1986) found that the self-concept of fourth-grade children was
not significantly associated with observational measures o f prosocial behaviour but was
associated with sociometric indices. Boys and girls with higher self-concepts received more
nominations for the following items: helping and comforting, and making sure that everyone
gets his/her fair share. Similarly, Rigby and Slee (1993) found children aged 12 to 18 years
with greater prosocial tendencies (as measured by a 4-item subscale) had higher self-esteem.
Cauley and Tyler (1989) also investigated the relationship between self-concept and
35
prosocial behaviour (defined specifically as helping, sharing, and cooperative behaviours) in
children aged 4 to 5 years. Results indicated that self-concept significantly predicted
prosocial behaviour, as measured by both observational methods and teacher reports, when
controlling for sex, age, number o f siblings, and number of years in day care. However, this
finding was a result of the significant relationship between self-concept and cooperative
behaviours only.
The findings from these studies lend support to the assumption from social learning
theory that children with more positive self-concepts have no need to engage in competitive
interactions with others, and are more likely to engage in cooperative behaviours instead.
Following from this literature, it would be expected that the self-concepts of siblings of
children with autism will significantly predict their tendency to engage in prosocial
behaviour.
Supporters o f a peer socialization perspective believe that children are provided with
opportunities to learn and practice prosocial behaviours within the context of peer
relationships. Adolescents who perceive they are well-accepted by their peers have been
shown to demonstrate more prosocial behaviours than adolescents who feel they are not as
well-accepted (Wentzel, 1998). Within the family context, it has previously been shown that
adolescents perceiving high levels of family cohesion are more likely to behave in caring
ways towards both peers and adults (Wentzel & McNamara, 1999). Wentzel and McNamara
(1999) examined the importance of perceived peer and family support as predictors of
childrens prosocial behaviours for 167 sixth-grade students. In this study, prosocial
behaviour was measured by a peer nomination procedure. Results indicated that perceived
36
peer support was significantly related to prosocial behaviour, with students who perceived
greater support from peers engaging in more prosocial behaviours. However, adolescents
perception of supportive family relationships was not a significant predictor for prosocial
behaviour. Perhaps this finding was a result of the method used to measure prosocial
behaviour, in which peers nominated students based on two behavioural characteristics
indicative o f prosocial behaviour. This result could also signify that family variables are less
powerful for adolescents then they are for younger children.
One could argue that children have opportunities to develop and practice prosocial
behaviours in various relationships. It would appear that for elementary school-aged
children, the most prominent relationships encountered on a daily basis are with family,
teachers, classmates, and peers. Therefore, children who perceive greater support from these
various sources may be more likely to demonstrate prosocial behaviours. Similar to children
in the general population, siblings of children with autism encounter these individuals on a
regular basis, and therefore may have higher rates of prosocial behaviour if they perceive
these relationships as supportive.
Parent Advocacy
In the area of family socialization, research has consistently shown that parents have a
significant impact on their childrens cognitive and social development (McDevitt, Lennon,
& Kopriva, 1991). Parents interaction styles with their children provide differential
opportunities for role taking, shaping childrens feelings and attitudes towards people, and
influencing the development of characteristics such as empathic responding (McDevitt et al.,
1991). Individual differences have been found for childrens reasoning about prosocial
actions which may be accounted for by socialization practices, such as disciplinary practices,
37
degree of power and control asserted by parents, and parental emphasis on prosocial
behaviour (Eisenberg & Fabes, 1998). For example, Hoffman (1975) found that children
whose parents use inductive discipline techniques were more likely to be nominated by peers
as caring about others and protecting them from ridicule. Similarly, Zahn-Waxler, Radke-
Yarrow, and King (1979) found that young children tended to respond in a helpful manner
when they harmed another person if they had mothers who explained how behaviour can
affect others. Therefore, existing research in the area of socialization suggests that parents
have an influence on childrens empathic responses and beliefs about the importance of
helping others.
Researchers have also examined whether childrens prosocial behaviour is impacted
by exposure to models engaging in prosocial behaviour. In laboratory studies, which involve
children earning a prize, viewing or not viewing a generous or helpful model, and having the
opportunity to donate their prize to another, children have been found to be more generous or
helpful when they view a generous or helpful model than children in control conditions
(Eisenberg & Fabes, 1998). There are fewer studies that have examined childrens modeling
of parents prosocial behaviour in the natural environment. However, the limited findings
support laboratory results, in that children model parents prosocial behaviour (Eisenberg &
Fabes, 1998). For example, young children are more likely to help their mothers with
household chores when their mothers have modeled such helping behaviours (Rheingold,
Hay, & West, 1976).
Following from the research described above, it seems reasonable to assume that
parents who engage in advocacy activities on behalf of their child with autism, as well as for
other families, are providing a model for the sibling of the child with autism. Therefore, it
38
would be expected that those parents reporting greater involvement in advocacy activities
will have a significant effect on the prosocial behaviours demonstrated by siblings of
children with autism.
Siblings Perceptions o f Parents Empathic Behaviour
Siblings perception of their parents as modeling and promoting prosocial actions and
empathic responses may also be important for the siblings own positive developmental
outcomes. Grissom and Borkowski (2002) investigated whether maternal attitudes and
modeling of empathic and prosocial behaviour, as perceived by adolescent siblings of
children with and without disabilities, predicted siblings self-efficacy. They found that
maternal attitudes and behaviours were significant in predicting self-efficacy for siblings of
children with disabilities only. Therefore, those siblings of children with disabilities who
perceived their mothers as modeling more empathic and helpful attitudes and behaviours
reported higher levels o f self-efficacy. Currently there is no such research for siblings of
children with autism, even though these children may frequently be exposed to these types of
parental behaviours, for example, observing their parents involvement in advocacy actions.
Therefore, one could assume siblings perceptions of their parents attitudes and prosocial
actions may significantly predict the frequency with which they demonstrate prosocial
behaviours themselves.
Siblings Perception o f Competence
A relatively unexplored area in the prosocial literature concerns the way in which
children view their own prosocial actions. Like adults, it seems reasonable to assume that
children learn about themselves from information provided by others as well as from self
observation (Holte, Jamruszka, Gustafson, Beaman, & Camp, 1984). It has been suggested
that childrens perceptions o f themselves as helpful may change when they engage in
prosocial activities. In a study by Holte et al. (1984), 43 fourth-grade students were given
five pieces o f gum as a reward and were told that they could donate the gum to students in
grades 2 and 3 because they did not have the opportunity to work with the researchers.
Although the 32 students who perceived themselves as sharers did not donate more gum
than the other 11 students, the 20 children who perceived themselves as sharers and who
were also described by at least two additional children as sharers were somewhat more
likely to donate. Therefore, findings from this study indicate that a student was more likely
to engage in the donating behaviour if they were accurate in their self-perception. One o f the
reasons why students may not have donated more gum even though they perceived
themselves as a sharer may result from responding in a socially desirable manner. Students
may have identified themselves as a sharer even if they did not perceive themselves as one
because they did not want to be perceived in a negative manner by the researchers.
As discussed earlier, siblings of children with autism may engage in a variety of
prosocial behaviours with their brother or sister for a number of reasons, including parental
expectations, a personal sense o f responsibility to care their brother or sister, as well as
attempts to interact with their brother or sister to maintain the sibling relationship. Therefore,
siblings perception of how competent they are in helping the child with autism (e.g.,
teaching him/her to play a game, determining what he/she is asking for) may be an important
predictor for engaging in prosocial behaviours. Those siblings who do not feel they are
competent in helping their brother or sister may engage in fewer prosocial behaviours at
home, which may in turn affect their development of prosocial behaviour, thereby resulting
in fewer prosocial behaviours with peers.
40
Summary
In summary, the literature review on the development of prosocial behaviour in
children suggests there is merit to examining prosocial behaviour as a positive outcome for
siblings of children with autism, especially given its potential impact on long term
adjustment (Tremblay, Vitaro, Gagnon, Piche, & Roeyer, 1992). Similar to children in the
general population, it is expected that siblings age, gender, self-worth, and perceived social
support are important predictors for prosocial behaviour in siblings of children with autism.
Additional factors believed to be important for prosocial behaviour in siblings of children
with autism in particular include siblings perception of their parents empathic behaviour,
siblings perception of their own competence, and parent advocacy.
Aims of the Current Study
The current study will extend past research that has focused solely on group differences
by investigating the variability in outcome for siblings of children with autism. Moreover,
both positive and negative behavioural outcomes will be examined. The dependent variables
of interest in this study are siblings psychosocial adjustment difficulties (i.e., internalizing
and externalizing behaviour problems) and their prosocial behaviour, as reported by parents
and teachers. This study will also move away from focusing exclusively on static variables
(e.g., age and gender) to examination of dynamic variables of key interest for prevention and
intervention. Thus, the primary purpose of the present study is to examine the variability in
siblings psychosocial adjustment and prosocial behaviour with variables found to be
important in the general population and developmental disability field. A further aim is to
determine whether factors deemed important for siblings of children with autism in particular
41
add to our understanding of those siblings more at risk for psychosocial adjustment problems,
in addition to those siblings demonstrating more prosocial behaviours.
Research Questions and Hypotheses
Research question 1: Are variables that have been found to be important for children in
the general population significant predictors of internalizing and externalizing behaviours in
siblings of children with autism? It is hypothesized that:
la) siblings with higher academic achievement will exhibit fewer internalizing and
externalizing behaviour problems;
lb) siblings with higher self-concepts will exhibit fewer internalizing and
lc) siblings with higher levels of social support will exhibit fewer internalizing and
Id) siblings whose parents report higher levels of parental distress will exhibit more
internalizing and externalizing behaviour problems.
Research question 2: W ill factors believed to be specific to living with a child with
autism emerge as significant predictors and explain additional variance for siblings
internalizing and externalizing behaviours? It is hypothesized that:
2a) siblings who perceive the behaviours of the child with autism to be more severe
will exhibit more internalizing and externalizing behaviour problems;
2b) parental advocacy will significantly predict siblings internalizing and
externalizing behaviour problems (no directional hypothesis will be made because
this relationship has not previously been explored).
42
Research question 3: Is siblings perceived social support a moderator for the relationship
between parental distress and siblings psychosocial adjustment difficulties? It is
hypothesized that that there will be a significant interaction between parental distress and
siblings perceived social support, such that in the presence of high levels of parental distress,
greater perceived social support by siblings will result in fewer internalizing and
externalizing behaviour problems.
Research question 4: Is there an association between siblings psychosocial adjustment
and prosocial behaviour, as reported by parents and teachers? It is hypothesized that there
will be a moderately significant inverse relationship between siblings internalizing and
externalizing behaviour problems and their prosocial behaviours.
Research question 5: Are factors that are important for the developmental of prosocial
behaviour for children in the general population significant predictors of prosocial behaviour
in siblings of children with autism? It is hypothesized that:
5a) siblings with higher self-worth will exhibit more prosocial behaviour; and
5b) siblings with higher levels of social support will exhibit more prosocial
behaviour.
Research question 6: Will factors believed to be important for siblings of children with
autism in particular emerge as significant predictors and explain additional variance for
siblings prosocial behaviours? It is hypothesized that:
6a) siblings who have higher perceived competency scores for dealing with
behaviours demonstrated by the child with autism are more likely to engage in
prosocial behaviours;
43
6b) siblings who perceive their parents as demonstrating empathic attitudes and
helping behaviours will have a greater tendency to display prosocial behaviour;
6c) siblings who have parents who are involved in more advocacy activities will
engage in more prosocial behaviour.
CHAPTER 2: METHOD
The current study was part o f a larger study that involved examination of the
functioning o f parents o f children with autism or Pervasive Developmental Disorder - Not
Otherwise Specified (PDD-NOS). Ethical approval for the overall study was received from
the York University Human Participants Review Committee. The current study also received
ethical approval from the University o f Toronto Research Services - Ethical Review Unit
(see Appendix A).
Participants
Families were recruited from various organizations located in South Western Ontario
that serve the needs o f individuals with autism and PDD-NOS (see Appendix B). In order to
participate, the current study required that families were raising a child with a diagnosis of
autism or PDD-NOS between the ages of 2 and 18 years and that siblings met the following
inclusion criteria: they were between the ages of 7 and 14 years, the sibling and the child
with autism or PDD-NOS lived at home with at least one natural parent; the sibling did not
have a diagnosis o f Autistic Disorder, PDD-NOS, Aspergers Disorder, or Mental
Retardation; and the parent and sibling had adequate English language proficiency to
complete study measures. If more than one sibling in the family met the inclusion criteria,
the sibling closest in age to the child with autism or PDD-NOS was chosen to participate in
the study.
The current study was completed by 94% of the 79 families that expressed an interest
in the study (i.e. calling the research office or returning a consent form) and met the above
criteria for participation. A total of five families withdrew from the study after receiving the
questionnaires in the mail. Of these five families, three withdrew because of time
44
45
constraints. The remaining two families withdrew because of one of the research team
members involvement in a court case. Two additional families were dropped from the study
after data were collected because of concern that the participating sibling may be presenting
with a Pervasive Developmental Disorder. These families were contacted by the supervising
psychologist and parents were directed to appropriate resources.
Therefore, the participants for the present study included 72 siblings of children
diagnosed with autism or PDD-NOS, one of their parents, and their classroom teacher (n =
61). The children with autism were between the ages of 3 and 17 years (M = 6.43, SD -
2.44), and received their diagnosis between ages 12 and 87 months (M = 37.16, SD - 13.82).
With 63 boys and 9 girls, the ratio of male to female children with autism or PDD-NOS in
the current sample (7:1) was higher than the 4:1 ratio reported to exist in the general autism
population (APA, 2000; Fombonne, 2005).
Participating siblings included 40 females and 32 males between the ages of 7 and 14
years (M = 933; SD - 1.94). Sixty-eight o f the siblings were older than the child with autism
or PDD-NOS, three were younger, and one was a twin. Ten siblings had one of the
following diagnoses as reported by their parent: Attention Deficit Hyperactivity Disorder
(ADHD), Learning Disability (LD), Language Disorder, or both ADHD and LD. Almost
half o f this sample (n = 30) had previously participated in a supportive intervention, with the
most common type involving participation in a sibling support group (67%).
Of the 72 parents participating in the current study, 64 were mothers and 8 were
fathers with ages ranging from 29 to 50 years (M = 39.71, SD = 5.13). Seventy-nine percent
of parents indicated that they were married or common-law, 15% were separated or divorced,
and 4% had never been married. In terms of ethnicity, 65% described themselves as
46
European, 8% Asian, 8% South Asian, 5% Hispanic, 4% Jewish, 3% African, and 1% Other.
The majority o f participants in the current study indicated that their religious beliefs were
Christian (76%), followed by Jewish (7%), Islamic (3%), Hindu (1%), and Sikh (1%). Using
the Hollingshead rating system (1975), socioeconomic status (SES) was determined by
combining occupational ratings with educational level attained. Applying Hollingsheads
SES classifications, 34.7% of families in the current sample were categorized as upper SES,
27.8% as upper middle, 16.7% as middle SES, 12.5% as lower middle, and 2.8% as lower
SES.
Sixty-eight parents (94%) provided consent to contact the siblings classroom teacher
to have questionnaires completed about the siblings behaviour at school. For those parents
who did not provide consent, the most common reason cited involved a concern for the
familys privacy regarding having a child with autism or PDD-NOS. O f the 68 packages
mailed to teachers, 61 teachers returned completed questionnaires, resulting in a 90%
response rate. For those siblings who participated in the study during the summer months,
their previous classroom teacher was contacted and asked to comment on the siblings
behaviour for the months preceding the summer holidays. Teachers commenting on siblings
current behaviour were compared to teachers commenting on behaviour observed prior to the
summer holidays to ensure there were no differences on the outcome measures. Using t test
analyses, results indicated no significant differences between groups on any of the outcomes
(see Table 1).
47
Measures
Screening Instruments
The Family Information Schedule
The Family Information Schedule was constructed in order to obtain relevant
demographic information on parents, siblings, and the child with autism or PDD-NOS such
as age, gender, family constellation, ethnicity, and religious background (see Appendix C).
Information on parents occupation and education was also obtained to code socioeconomic
status (SES), with higher scores reflecting higher SES.
Wechsler Abbreviated Scale o f Intelligence (WASI; Wechsler, 1999)
This instrument is a brief measure of cognitive functioning for individuals between
the ages o f 6 and 89 years. It is composed of four subtests (Vocabulary, Block Design,
Similarities, and Matrix Reasoning) and yields Verbal IQ (VIQ), Performance IQ (PIQ), and
Full Scale IQ (FSIQ). An estimate of an individuals general cognitive functioning can also
be obtained by administering the short form suggested in the manual. This short form
consists of the Matrix Reasoning and Vocabulary subtests, and was used in the present study
for obtaining an estimate of the siblings general cognitive functioning (Full Scale IQ -2
[FSIQ-2]).
The WASI was reported to have good internal consistency, with reliability
coefficients for the childrens sample (ages 6 to 16 years) ranging from .86 to .93 for
Vocabulary and .86 to .96 for Matrix Reasoning (Wechsler, 1999). In addition, the reliability
coefficients for the FSIQ-2 ranged from .92 to .95. The WASI scores were found to possess
adequate stability across time (2- to 12-week interval) and age bands (6-11, 12-16, 17-54,
and 55-89). The average stability coefficients for the childrens sample were .85 for
48
Vocabulary, .77 for Matrix Reasoning, and .85 for the FSIQ-2. Inter-rater reliability was
high for the Vocabulary subtest (r = .98). The author of this measure also provided support
for criterion-related validity, indicating that the WASI FSIQ-2 had high correlations with the
FSIQ of the WISC-III and WAIS-III. The WASI IQ scores correlated moderately with the
WIAT subtest scores and have moderate to high correlations with the WIAT composite
scores (Wechsler, 1999). Therefore, as expected, the WASI was found to be more strongly
associated with other measures of cognitive functioning than with achievement tests.
Dependent Variables
Achenbach Child Behavior Checklist (CBCL; Achenbach & Rescorla, 2001)
This is a 118-item standardized parent-report questionnaire examining childrens
behavioural, emotional, and social problems over a 6-month period (for ages 6 to 18). Each
item is rated on a 3-point Likert scale (0 = not true, 1 = somewhat or sometimes true, 2 =
very true or often true). Items can be summed to yield two broad groupings of syndromes,
Internalizing (based on the Anxious/Depressed, Withdrawn/Depressed, and Somatic
Complaints scales) and Externalizing (based on the Rule-Breaking Behavior and Aggressive
Behavior scales). The scores obtained on the Internalizing and Externalizing scales were
used in the current study.
The reliability and validity of the CBCL has been supported by many studies
(Achenbach & Rescorla, 2001). The creators of this measure reported good internal
consistency for the Internalizing score (a = .90) and the Externalizing score (a = .94). Test-
retest reliability over a mean interval of 7 days was very high for 72 nonreferred children for
the Internalizing (r = .91) and Externalizing (r = .92) scales. The correlations for inter-parent
agreement for the Internalizing and Externalizing scales were .72 and .85, respectively. The
49
validity of the CBCL scales has been supported by their significant associations with DSM
criteria and other instruments, such as the Conners and the Behavior Assessment System for
Children, and the ability o f the scales to discriminate referred and nonreferred children that
were matched on demographic factors (Achenbach & Rescorla, 2001).
Teacher Report Form (TRF; Achenbach & Rescorla, 2001)
The TRF is modeled after the CBCL to obtain teacher ratings of students functioning
in the school over a 2-month period (ages 6 to 18 years). Similar to the CBCL, it is a 113-
item standardized questionnaire yielding Internalizing and Externalizing scores.
The authors of this measure report that, using Cronbachs alpha, internal consistency
was good for the Internalizing (.90) and Externalizing (.95) scales. Test-retest reliability over
a mean interval o f 16 days was high for nonreferred children (N = 44) for the Internalizing (r
= .86) and Externalizing (r = .89) scales. The mean correlations for inter-teacher agreement
for the Internalizing and Externalizing scales were .58 and .69, respectively. The validity of
the TRF scales has been supported by their significant associations with other measures, such
as the Conners Teacher Rating Scale - Revised and the Teacher Rating Scale of the Behavior
Assessment System for Children, and the ability of the scales to discriminate referred and
nonreferred children that were matched on demographic factors (Achenbach & Rescorla,
2001 ).
In comparing the agreement between parent reports on the CBCL and teacher reports
on the TRF, correlations were much lower than those reported when the informant was the
same for the Internalizing (r = .21) and Externalizing (r = .36) scales (Achenbach &
Rescorla, 2001). For the current study, agreement between parent and teacher ratings was (r
= .27, p < .05) for Internalizing scores and (r = .33, p < .05) for Externalizing scores.
50
Social Competence Inventory (Rydell, Hagekull, & Bohlin, 1997)
This is a 25-item inventory developed to measure a broad range of social competence
characteristics, such as empathy, altruism, generosity, helpfulness, social participation,
initiative taking, cooperation, and conflict resolution. Each item is rated from 1 (does not
apply at all) to 5 (applies very well to the child). Factor analytic procedures were performed
on the pilot-sample teacher ratings, yielding two factors, Prosocial Orientation and Social
Initiative. This factor structure was confirmed by teacher ratings across samples provided in
the manual, and held for both boys and girls. For the purposes of the current study, only the
Prosocial Orientation factor was used which consists of 17 items that reflect a social style
that promotes natural social interactions (e.g., generosity, empathy, understanding of others,
conflict handling, and helpfulness). Higher scores on this factor indicate a greater tendency
to engage in prosocial behaviours.
The creators o f this measure reported that internal consistency was good for the
Prosocial Orientation factor for parental ratings (r = .87 to .90) and teacher ratings (r = .93 to
.94) across several samples provided in the manual. The stability coefficients for the
Prosocial Orientation factor over a 1-year interval were .77 based on mother reports and .59
for teacher reports. Inter-rater reliability was also examined, and indicated the highest
agreement was between teachers (r = .66), followed by agreement between parents (r = .44),
fathers and teachers (r = .35), and mothers and teachers (r = .29 to .44). The validity of the
Prosocial Orientation factor was supported by its significant relationship with the Positive
Peer Behavior scale as well as its ability to predict observed prosocial behaviour (Rydell et
al., 1997). Moreover, teacher ratings on this factor were reported to differentiate popular and
average children from rejected children.
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For the current study, Cronbach alpha reliabilities for the Prosocial Orientation factor
were found to be excellent for both parents (a = .92) and teachers (a = .94). Agreement
between parent and teacher ratings was modest and comparable to other samples (r = .28, p <
.05).
Independent Variables
Kaufman Test o f Educational Achievement - B rief Form (K-TEA; Kaufman & Kaufman,
1998)
The K-TEA (Brief Form) is an individually administered measure of school
achievement for individuals in grades 1 through 12. The global areas of Mathematics (basic
arithmetic concepts, applications of mathematical principles, numerical reasoning, and
computation), Reading (decoding and reading comprehension), and Spelling are assessed.
An individuals scores on Mathematics, Reading, and Spelling can be combined to obtain a
Battery Composite Score, which was used in the current study.
Although the norms for the K-TEA Brief Form were updated based on data collected
from 1995 to 1996, all analyses for reliability and validity are based on the original norms
(Kaufman & Kaufman, 1998). The internal consistency was high for the Battery Composite,
with reliability coefficients ranging from .89 to .97 for all grade levels and .91 to .98 for all
age groups. Test-retest reliability over a mean interval of 7 days (n = 153) was high for
grades 1 to 6 (r = .94) and for grades 7 to 12 (r = .92). The impact of practice was found to
be small for all grades. The relationship between the Brief Form and Comprehensive Form
was also good, with reliability coefficients ranging from .83 to .93 across age groups and .80
to .92 across grade levels. The construct validity of the K-TEA Brief Form was supported, as
the mean scores were found to increase steadily from grades 1 to 12 and across the age range
52
of 6 to 18 for all 3 achievement domains and the Battery Composite (Kaufman & Kaufman,
1998). Concurrent validity was supported as the K-TEA Brief Form had significant
relationships with the WRAT-R (n = 200), PIAT (n = 52), K-ABC (n = 105), and PPVT-R (n
= 580).
Autism Specific Behaviour Scale fo r Siblings
This structured interview was developed for the present study based on a structured
interview examining perceived severity, stressfulness, and self-efficacy specific to parenting
a child with autism used in the larger study (Diamond, 2005). The structured interview used
in the current study provided siblings with descriptions of behaviours across five areas
(Communication, Socialization, Repetitive Behaviours, Atypical Behaviours, and Aggressive
Behaviours) commonly seen in children with autism (see Appendix D). Siblings were asked
to indicate how much their brother or sister had difficulty with a particular behaviour on a 3-
point Likert scale (1 = not at all, 2 = somewhat, 3 = a lot). The 15 items were summed to
create a Total score on the Severity of Disability scale, with higher scores indicating that the
child with autism was perceived to be exhibiting a greater number o f autistic behaviours. For
items that the participant responded somewhat or a lot, they were also asked how much it
bothered them when the child with autism engaged in that behaviour. However, these
responses were not examined in the present study.
Siblings were also asked questions that assessed their feelings of competency in
dealing with behaviours in each of the five areas, as well as responding to four additional
questions that tapped their perceptions of their prosocial behaviour with the child with autism
and others in the community. Using the same 3-point Likert scale as described above, the
scores from these nine questions were summed to create a Total score for the Siblings
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Competence scale. Higher scores on this scale were indicative of greater perceived
competency.
This structured interview was pilot tested with a sibling of a child with autism (who
was not included in the final study); feedback on the content as well as wording of questions
was sought and reported to be appropriate and comprehensible. As a result, no changes were
made to the interview before proceeding with the study.
Internal consistency for the Severity of Disability and Siblings Competence scales
was evaluated through an examination of inter-item correlations, item-total correlations, and
calculation o f Cronbach alpha reliabilities. Examination of inter-item correlations indicated
that all items should be retained in both scales for further analyses. Item- total correlations
ranged from .24 to .56 on the Severity o f Disability scale and from .36 to .62 for the Siblings
Competence scale. Cronbach alpha reliabilities for the Severity of Disability scale (a = .63)
and Siblings Competence scale (a = .67) were fair.
Self-Perception Profile fo r Children (SPPC; Harter, 1985a)
The SPPC is a 36-item, self-report instrument that measures childrens competence
across 6 domains: Scholastic Competence, Social Acceptance, Athletic Competence,
Physical Appearance, Behavioral Conduct, and Global Self-worth. The question format
requires the child to read 2 statements and decide which kind of child is more like him/her.
The child then decides whether this statement is sort of true or really true for him/her.
Each item is scored from 1 (low perceived competence) to 4 (high perceived competence).
In the current study, only the Global Self-worth scale was used.
54
Using Cronbachs alpha, the internal consistency reliabilities across samples for the
General Self-worth domain ranged .73 to .82 (Harter, 1985a). In the current sample, internal
consistency for the Global Self-worth scale was .78, which is considered to be acceptable.
Although the SPPC was developed for children ages 8 to 13 years, S. Harter (personal
communication, March 30,2003) agreed that this measure is appropriate for use with 14-
year-olds, and is a better alternative than using a different version for a small portion of the
sample. The current sample also included 7-year-olds, and Harter (1985a) states that
children younger than 8 years of age are not able to differentiate between different aspects of
themselves. Therefore, a t test was computed between 7-year-olds (n = 14) and children aged
8 to 14 years (n = 58) on the Global Self-worth scale. Results indicated no significant
differences between 7-year-olds (M= 3.45, SD = .71) and children 8 years and older (M =
3.39, SD = .56) on the Global Self-worth scale, t(70) = -.36,p > .05 (two-tailed). Thus, data
from 7-year-olds was retained for statistical analyses.
The Social Support Scale fo r Children (SSSC; Harter, 1985b)
The SSSC is a 24-item, self-report instrument that measures childrens perceived
social support from four sources: Parents, Teachers, Classmates, and Close Friends. Similar
to the question format in the SPPC, children are asked to read 2 statements and decide which
kind o f child is more like them. The child then decides whether this statement is sort of
true or really true for him or her. Each item is scored from 1 (low perceived social
support) to 4 (high perceived social support).
Harter (1985b) conducted factor analysis to confirm that the sources of support were
distinct from one another. For children in grades 6 to 8, four factors were obtained while
three factors were obtained for children in grades 3 to 5, with Close Friends and Classmates
55
emerging as one factor. The author of the current study was interested in examining siblings
total social support. In a method similar to that used in a study by Jackson and Warren
(2000), the 24 items were summed to obtain a Total Social Support score, thereby examining
siblings total social support from various sources identified as important in childrens lives.
In the current sample, internal consistency for the Total Social Support score was good (a =
.88).
Similar to the SPPC, the Social Support Scale was developed for children ages 8 to 13
years. A t test was computed between 7-year-olds (n = 14) and children aged 8 to 14 years (n
= 58) on the Total Social Support score. Results indicated no significant differences between
7-year-olds (M = 85.00, SD = 10.80) and children 8 years and older (M = 83.57, SD = 9.39)
on the Total Social Support score, t(70) = -1.43, p > .05 (two-tailed). Therefore, data from 7-
year-olds was retained for statistical analyses.
The Children and Families Scale (McDevitt, Lennon, & Kopriva, 1991)
The Children and Families Scale is a 46-item instrument measuring the degree to
which respondents perceive their mothers and fathers as encouraging prosocial actions and
empathic responses. Respondents answer the same questions for mothers and fathers
separately, with half of the items referring to mothers and the other half referring to fathers.
Items tap the degree to which parents are perceived as expressing the need to help others
(e.g., When someone in my neighbourhood is in trouble, my mother often tries to help),
encouraging their children to help others and consider others feelings (e.g., My mother
encourages me to consider other peoples feelings), expressing emotions (e.g., My mother
often talks about her feelings), taking the perspective of the child (e.g., My mother is
willing to listen to my side when we have an argument), and requiring the child to be
56
responsible for household chores (e.g., My mother asks me to do chores around the house at
least once per week). Each item is scored on a 5-point Likert scale from 1 (strongly
disagree) to 5 (strongly agree). Higher scores on this measure indicate greater perceptions of
parental encouragement and modeling of prosocial and empathic behaviour.
Since this questionnaire was developed for children aged 12 to 18 years, it was
piloted on a sample of 7 to 9 year old children (n = 4) to determine if any items needed to be
reworded to improve comprehension. Based on feedback from the pilot sample, which was
consistent across all children, 10 of the original items were changed slightly to improve
childrens comprehension. These changes did not alter the meaning of the items; rather
easier vocabulary words were added to improve comprehension. For example, My Mother
often expresses sadness when she hears about people in distress through the news was
changed to My Mother often expresses or shows sadness when she hears about people in
distress or trouble through the news. To further assist childrens comprehension of
questions, questions were read to participants aged 7 to 12 years old.
The authors of the Children and Families Scale reported good internal consistency as
measured by Cronbachs alpha for childrens ratings of mothers (a = .84), fathers (a = .87),
and the combination o f both sets of items (a = .90). Internal consistency for the current
sample was high for siblings ratings of mothers (a = .82) and fathers (a = .84).
Parenting Stress Index -Short Form (PSI-SF: Abidin, 1995)
The PSI-SF is a 36-item short version of the Parenting Stress Index (PSI). The short
form is comprised of 3 subscales: Parental Distress (PD), Parent-Child Dysfunctional
Interaction (P-CDI), and Difficult Child (DC). Abidin (1995) found Cronbach alpha
reliabilities (N - 800) to be solid for each of the three factors (PD = .87, P-CDI = .80, & DC
57
= .85) as well as for the total PSI-SF (.91). The author of this measure also reported that test-
retest reliability over a 6-month period was also good (n = 270; r = .84). Moreover, the total
score of the PSI-SF was also found to be highly correlated with the total score on the full
version PSI (r = .94).
In the current study, the Parental Distress subscale was used, as it measures the
distress a parent is experiencing in his/her role as a parent as a function of personal factors
that are directly related to parenting. The practice of using this subscale score rather than
the overall total score is consistent with recommendations made by Anastopoulos,
Guevremont, Shelton, and DuPaul (1992) who argue that this subscale alone is the most valid
measure o f parental stress because items in both the PCD-I and DC subscales overlap with
measures o f the childs symptoms and behavioural difficulties. The Cronbach alpha
reliability for the Parental Distress subscale was .86 for parents in the current study.
Parent Advocacy Scale (PAS; Nachshen, Anderson, & Jamieson, 2001)
The PAS is a structured interview examining involvement in advocacy over the
previous 9 months. At the beginning of the interview parents are provided with a definition
of advocacy. Questions tap parents actual advocacy actions and involvement in
organizations related to developmental disabilities, their reasons for undertaking advocacy
actions, the outcome of their advocacy actions, and their feelings about the role of advocacy
in their lives. Parent responses are then coded on a 4-point scale on each of the following 5
dimensions: 1) Number of actions, 2) Focus of actions, 3) Membership in organizations, 4)
Activity level in organizations, 5) Role of advocacy. These scores can be summed to obtain
an overall score ranging from 0 to 20. Nachshen et al. (2001) found inter-rater reliability to
be good for all dimensions (Action, r = .95; Focus of Actions, r = .89; Membership in
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Organizations, r = .87; Activity Level, r = .90; Role of Advocacy, r = .82) and the total score
(r = .95). Internal consistency was also reported to be good using Cronbach alpha (a = .87).
In the current study, 30% of parent responses were randomly selected and scored by
two independent coders. Scores were then examined for inter-rater reliability using the
Kappa statistic for each of the 5 advocacy dimensions, and ranged from poor to good: Role
o f Advocacy .38, Activity Level in Organizations .63, Number of Actions .77, Focus of
Actions .77, and Membership in Organizations .79. Theoretically, the latter 4 dimensions
focused on the extent to which parents were actively involved in advocating while the Role
of Advocacy dimension was tapping a somewhat separate facet of advocacy, namely the role
that advocacy plays in the lives of parents. As a result, the Role of Advocacy dimension was
dropped and a Total Advocacy Involvement scale was created based on the remaining 4
dimensions. Cronbach alpha reliability for the Total Advocacy Involvement scale was good
(a = .86).
Summary o f Measures
Refer to Table 2 for all the dependent and independent measures included in the
current study and the source of the information.
Procedure
Ethical approval for the study was obtained from the ethics committees of each of the
agencies from which participants were recruited. Potential participants were initially
contacted and provided with information about the study by the agencies. One agency
mailed families of children with autism or PDD-NOS, between the ages of 2 and 18 years, a
consent form and a written description of the study (see Appendix E) and asked families to
return the consent form to the investigators. All other agencies mailed families a one page
59
flyer describing the study (see Appendix F) which indicated that families were to call the
research office if they were interested in participating.
A telephone call was made to interested families to explain the research project,
gather pertinent information (i.e., whether this is a one- or two-parent family), and determine
whether there was a sibling that met the inclusion criteria for the current study (See
Appendix G). If the family met the inclusion criteria and verbal consent was obtained, a
package of questionnaires was mailed to families. Along with some additional
questionnaires that were part of the larger study, this package included the Family
Information Schedule and Parenting Stress Index - Short Form. Each questionnaire was
numbered and instructions requested that parents complete them in the order in which they
were numbered. If both parents were participating in the larger study, they were asked who
was considered to be the primary caregiver. In two cases, a parent was designated as the
primary caregiver because of their English proficiency. Only the primary caregiver
completed the questionnaire about the sibling, either the CBCL or the Social Competence
Inventory. To counterbalance these two measures, 35 families received the CBCL in the
mail while 37 families received the Social Competence Inventory.
During the initial phone call to parents, an appointment was scheduled to complete
the remaining components o f the research study in person. Parents were given a choice of
being interviewed at the university or in their own home. The majority of parents chose to
complete the interview in their home. If parents felt it necessary, an additional research team
member was available to keep the child with autism occupied while parents and siblings were
engaged in the research project. The appointment consisted of two parts that took place
simultaneously, lasting approximately 2 hours. The research team member working with the
60
sibling first obtained informed assent (children aged 8 tol 1 years) or informed consent
(children aged 12 to 14 years [see Appendix E]). After assent or consent was obtained, the
WASI - Short Form and K-TEA- Brief Form were administered. Siblings then participated
in a structured interview (Autism Specific Behaviour Scale for Siblings), after which they
completed the SPPC, the SSSC, and The Children and Families Scale. All questionnaires
were read aloud to siblings who were 7- to 9-years old. Older siblings who required help
reading the items on the questionnaires were provided with assistance.
An interview was conducted with the primary caregiver by another research team
member, during which the Parent Advocacy Scale was completed. Afterwards, the primary
caregiver completed either the CBCL or Social Competence Inventory about the participating
sibling (whichever questionnaire was not included in the package that was mailed to
families). The two forms completed by the primary caregiver about the sibling were
separated by approximately 2 weeks, in an attempt to prevent the responses on one
questionnaire from influencing the responses on the other. If the primary caregiver had not
completed all the questionnaires initially sent in the mail, she/he was provided with a
stamped, self-addressed envelope to return them.
During the appointment with the family, parents were also asked to sign a release of
information form (See Appendix H) permitting the siblings classroom teacher to complete
two questionnaires about the sibling. Once consent was obtained, the siblings teacher was
mailed a copy of the parents signed release of information form and an accompanying letter
and consent form (see Appendix H) asking her/him to complete the TRF and the Social
Competence Inventory about the sibling. These measures were placed in a counterbalanced
order and instructions requested that teachers complete the questionnaires in the order in
which they were placed. A stamped, self-addressed envelope was included in each package.
All participants were remunerated for their time and expenses. At the time of the
appointment, parents were provided with $50.00 for their participation and siblings received
a token gift of approximately a $5.00 value. Teachers were mailed $5.00 worth of Tim
Hortons gift certificates upon receipt of the completed questionnaires. Following the
familys participation in the study, an individualized report outlining the results from the
cognitive and academic screener, as well as parent and teacher reports of behaviour, were
mailed to parents. Recommendations were provided for those siblings exhibiting academic,
social-emotional, and/or behavioural difficulties.
CHAPTER 3: RESULTS
Distributions and Assumptions
Prior to the main analyses, all dependent and independent variables were examined
for missing values and accuracy o f data entry. Four families were missing information
required for computing SES, and as a result these participants were not included in the
hierarchical regression analyses. Remaining participants were included for all analyses, as
no participant was missing data on more than one questionnaire. The single missing value
for parent reports o f siblings prosocial behaviour was replaced by the mean for that
participants total score. This procedure was also used to replace missing values for five
participants missing data on teacher reports of siblings prosocial behaviour, as well as for
four participants missing data on one of 12 items on the Parental Distress scale. An
examination of all values obtained on the dependent and independent variables indicated
reasonable values given the means, standard deviations, and ranges provided in Table 3.
To examine normality of the dependent and independent variables, skewness and
kurtosis values for each variable were explored by dividing skewness and kurtosis values by
their standard errors and comparing them to critical values on the Z distribution (p < .001, Z
= 3.29). Results revealed that all variables were found to approximate the normal
distribution. An examination o f siblings gender demonstrated a fairly even split (56%
female; 44% male). To further examine normality, the standardized residuals for all
hierarchical regression analyses were examined by plotting histograms and Normal P-Plots.
Visual examination revealed that the residuals appeared normally distributed for each o f the
hierarchical regressions.
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The data were also screened for the presence of univariate and multivariate outliers.
An examination o f histograms and box plots revealed univariate outliers for the following
dependent variables: two low scores for parent reports of prosocial behaviours and one high
score for each of the parent and teacher reports of externalizing behaviours. However, since
the scores were not significantly different from the mean of each variable (p = 1.00 criterion
o f 3.29, two-tailed) and the scores were believed to represent true variability, the values were
not changed (Tabachnick & Fidell, 2001). Univariate outliers were also identified for the
following independent variables: Parental Distress, Siblings Perception of Severity of
Autism, Siblings Perceived Competence, and Siblings Perception o f Parents Helping
Behaviours. However, no multivariate outliers were found with an examination of
Mahalanobis Distance (p < .001), Cooks D, and Leverage values for each of the hierarchical
regressions. Therefore, the participants were retained for all analyses and the values were not
changed.
To address collinearity, correlations between all independent variables were
examined (see Tables 4 and 5). Although Tables 4 and 5 reveal some significant correlations
among the independent variables, using the criterion of not including bivariate correlations
greater than .90 in the same analysis (Tabachnik & Fidell, 2001), the magnitude of these
correlations is not great enough to signify a problem with collinearity. Variance Inflation
Factors (VIF), Condition Indices, and Variance Proportions were also examined for each
hierarchical regression to further explore multicollinearity. VIF scores were not indicative of
multicollinearity for any of the hierarchical regressions. Moreover, despite finding the last
root of the Condition Indices greater than 30, none of the variables had more than one
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Variance Proportion greater than .50, further suggesting that multicollinearity was not a
problem for any o f the hierarchical regressions (Tabachnick & Fidell, 2001).
Preliminary Analyses
Variability in Dependent Variables
Given that the primary purpose of the current study includes an attempt to explain
variability in siblings outcomes, each dependent variable (parent and teacher reports of
internalizing, externalizing, and prosocial behaviours) was examined to ensure there was
variability in siblings scores. An examination of the range of scores, as well as standard
deviations for each dependent variable (see Table 3) suggests substantial variability was
obtained in siblings scores for all outcome variables. Moreover, Table 6 reveals that a
number o f siblings were reported by parents and teachers as having borderline to clinically
significant internalizing and externalizing behaviour problems. These percentages are higher
than those reported in a non-referred sample (Achenbach & Rescorla, 2001), in which
approximately 18% of children exhibited internalizing and externalizing problems. For
prosocial behaviour, a minority of siblings were reportedly demonstrating low levels of
prosocial behaviour (>1 SD below the mean), similar to the 16% one would expect for a
normally distributed variable.
Potential Covariates in Hierarchical Regression Analyses
Based on past research findings, the relationship between family SES, siblings
gender, siblings age, and siblings cognitive functioning with parent and teacher reports of
siblings internalizing, externalizing, and prosocial behaviours were explored to determine
whether it would be necessary to control for them in hierarchical regression analyses. An
independent samples t test (two-tailed) was computed for gender. Given unequal sample
sizes, Levenes Test was first examined to determine whether equal variances could be
assumed between groups based on siblings gender. There were no significant differences
between groups, suggesting that variances between males and females were approximately
equal for the dependent variables. As shown in Table 7, t tests revealed no significant
differences between male and female siblings for parent or teacher reports of siblings
internalizing, externalizing, or prosocial behaviours. Correlations were examined for family
SES, siblings age, and siblings cognitive functioning. As shown in Tables 4 and 5,
siblings age and cognitive functioning were not significantly associated with parent or
teacher reports o f siblings internalizing, externalizing, or prosocial behaviours, and therefore
were not included in hierarchical regression analyses. However, SES was significantly
associated with parent reports of siblings internalizing and externalizing behaviours, with
parents reporting greater internalizing and externalizing behaviour problems when family
SES was lower. Given these preliminary results, SES was included in Step 1 for all
hierarchical regression analyses.
As noted in the participants section, 10 siblings were reported by parents to have a
diagnosis, such as ADHD or LD. In addition, the children with autism or PDD-NOS had a
broad age range. As a result, it was necessary to determine whether additional covariates in
the hierarchical regression analyses would include siblings diagnosis, the age of the child
with autism, or the age span between the siblings and the children with autism. Correlations
were not significant for the age of the child with autism or PDD-NOD (r = .01 to .08) or the
age span (r = .06 to .20) with the dependent variables. For siblings diagnosis, independent
sample t tests (two-tailed) were computed for each independent variable. Given unequal
sample sizes, Levenes Test was first examined to determine whether equal variances could
be assumed between groups based on siblings diagnosis. There were no significant
differences between groups, suggesting that variances were approximately equal for the
independent variables. As shown in Table 8, siblings with a diagnosis had significantly
lower academic achievement scores than siblings without a diagnosis. The remaining t tests
revealed no significant differences between those siblings with and without a diagnosis (see
Table 8), indicating that the siblings are a fairly uniform group on the independent variables.
As a result, it was not necessary to control for siblings diagnosis, the age of the child with
autism, or the age span between the siblings and the children with autism.
Research Questions
Predictors o f Internalizing and Externalizing Behaviours
For research questions 1 and 2, hierarchical regression analyses were conducted to
determine whether the addition of autism-specific predictors improved the prediction of
parent and teacher reports o f internalizing and externalizing behaviours beyond that afforded
by general population predictors, after controlling for SES. Table 4 displays the correlations
between the dependent and independent variables. SES was controlled for by entering it on
Step 1 for all hierarchical regressions. To address research question 1 regarding whether
characteristics that have been found to be important in the general population will be
significant predictors of parent and teacher reports of internalizing and externalizing
behaviours in siblings o f children with autism, the following predictors were entered
simultaneously on Step 2: Academic Achievement, Global Self-worth, Social Support, and
Parental Distress. To examine research question 2 regarding whether factors that are
believed to be specific to living with a child with autism will contribute a significant amount
of additional variance for parent and teacher reports of siblings internalizing and
67
externalizing behaviours, the following predictors were entered simultaneously on Step 3:
Siblings Perception of Severity of Disability and Parent Advocacy. Separate hierarchical
regression analyses were conducted for parent and teacher reports of siblings internalizing
and externalizing behaviours.
Internalizing Behaviour
When parent report of internalizing behaviour was used as the dependent variable
(see Table 9), SES emerged as a marginally significant predictor (p = .07), accounting for 5%
of the variance (R2 = .05, Finc (1, 65) = 3.52, p > .05). In Step 2, there was a trend for global
self-worth to be predictive of siblings internalizing behaviours. As hypothesized in 1 (b),
higher levels of global self-worth were somewhat predictive of fewer internalizing
behaviours by parent report. After Step 2, the proportion of variance explained was 17% (R2
= .17, Finc (4, 61) = 2.18,/? > .05), with the general predictors accounting for an additional
12% of the variance. The addition of the autism-specific variables in Step 3 did not
significantly improve the prediction of parent reports of siblings internalizing behaviours (R2
= .17, Finc (2, 59) = .04, p > .05).
When teacher report of internalizing behaviour was used as the dependent variable
(see Table 10), there were no significant predictors for Steps 1, 2, or 3. For Step 1, SES did
not account for any variance for teacher reports of internalizing behaviours. With the general
variables added to the prediction of teacher reports of siblings internalizing behaviours, the
proportion of variance explained was 9% (R2 = .09, Finc (4, 52) = 1.32, p > .05). The addition
o f the autism-specific predictors in Step 3 did not significantly improve the prediction of
teacher reports of internalizing behaviours, but did account for an additional 3% of variance
(R2 = .12, Finc (2, 50) = .72, p > .05).
68
Externalizing Behaviour
To further address research questions 1 and 2, externalizing behaviour as reported by
parents was used as the dependent variable. As shown in Table 11, SES emerged as a
marginally significant predictor (p = .06), such that lower SES was predictive of greater
externalizing problems. SES accounted for 5% of the variance (R = .05, Finc (1, 65) = 3.74,
p > .05). After controlling for SES, academic achievement and parental distress emerged as
significant predictors for siblings externalizing behaviours. In support of Hypothesis 1(a),
this relationship was such that higher levels of academic achievement predicted fewer
externalizing behaviour problems. Consistent with Hypothesis 1(d), higher levels of parental
distress predicted more externalizing behaviour problems. There was also a trend for social
support to predict externalizing behaviour problems as reported by parents (p = .07). After
Step 2, the general variables explained an additional 23% of variance in the prediction of
parent reports of siblings externalizing behaviours (R = .28, Finc (4, 61) = 4.82,/) < 01),
which resulted in a significant increment in R2. Finally, after controlling for SES and adding
in the general variables, siblings perception of the severity of autism was a significant
predictor o f siblings externalizing behaviours. As hypothesized in 2(a), siblings perception
o f greater severity was predictive of more externalizing problems. With the addition o f the
autism-specific variables in the model, academic achievement and parental distress remained
significant predictors of externalizing behaviours. The autism-specific predictors explained
an additional 6% of variance; however the prediction of siblings externalizing behaviours as
reported by parents was not significantly improved (R = .34, Finc (2, 59) = 2.69, p > .05).
When teacher report of externalizing behaviours was used as the dependent variable
(see Table 12), SES was not a significant predictor and did not account for any variance. On
Step 2, global self-worth emerged as a marginally significant predictor (p = .06) for siblings
externalizing behaviours as reported by teachers. Consistent with Hypothesis 1(b), higher
global self-worth was somewhat predictive of fewer externalizing problems. The general
variables did not account for a significant amount of variance in the prediction of teacher
reports of siblings externalizing behaviours, although the proportion of variance explained
was 11% (R2 = .11, Finc (4, 52) = 1.67, y? > .05). In Step 3, after taking into account SES and
the general variables, siblings perception of the severity o f autism was a significant predictor
of siblings externalizing behaviours. Higher autism severity scores were predictive of
greater externalizing problems. The addition of the autism-specific predictors to the equation
in Step 3 significantly improved the prediction of teacher reports of siblings externalizing
behaviours, accounting for an additional 11% of the variance (R = .22, Fmc (2, 50) = 3.53,/?
< .05).
Social Support as a Moderator fo r Psychosocial Adjustment
To determine whether siblings perceived social support acts as a moderator for the
relationship between parental distress and siblings psychosocial adjustment difficulties
(research question 3), multiple regression analyses were computed to explore the interactions
between social support and parental distress with parent and teacher reports of internalizing
and externalizing behaviours. To avoid multicollinearity, the formula (X - X) * (Y - Y) was
used (Tabachnick & Fidell, 2001), where X represents social support and Y represents
parental distress. Separate hierarchical regression analyses were conducted for parent and
teacher reports o f siblings internalizing and externalizing behaviours. SES was controlled
for by entering it on Step 1, social support and parental distress were entered simultaneously
on Step 2, and the interaction between social support and parental distress was added on Step
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3. Contrary to the hypothesis that siblings perceived social support would moderate the
relationship between parental distress and siblings psychosocial adjustment difficulties,
results indicated that the interaction between social support and parental distress was not
significant for parent or teacher reports of internalizing or externalizing behaviour problems
(see Tables 13 to 16).
Relationship Between Psychosocial Adjustment and Prosocial Behaviour
To address research question 4 regarding the relationship between siblings
internalizing and externalizing behaviour problems and their prosocial behaviours, the
correlations were examined. The hypothesis was supported when comparing reports by same
informant. Parent reports o f siblings prosocial behaviour were significantly negatively
correlated with parent reports of siblings internalizing behaviours and externalizing
behaviours (see Table 17). Therefore, by parent report, siblings engaging in fewer prosocial
behaviours were exhibiting more internalizing or externalizing behaviour problems. As
predicted, the correlations were small to moderate in magnitude (Cohen, 1988). Similarly, an
examination o f teacher reports indicated that significant negative correlations were obtained
between siblings prosocial behaviours and siblings internalizing and externalizing
behaviours. Therefore, when teachers were the respondents, siblings exhibiting more
internalizing and externalizing behaviours demonstrated fewer prosocial behaviours. The
magnitude o f these correlations was moderate. In contrast, Hypothesis 4 was not supported
when comparing different informants. Parent reports of siblings prosocial behaviours were
not significantly associated with teacher reports of internalizing and externalizing
behaviours. Moreover, teacher reports of siblings prosocial behaviours were not
significantly related to parent reports of internalizing and externalizing behaviours.
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Predictors o f Prosocial Behaviour
For research questions 5 and 6, hierachical regression analyses were conducted to
determine whether the addition o f autism-specific predictors improved the prediction of
parent and teacher reports of prosocial behaviours beyond that afforded by SES and the
general predictors. Table 5 displays the correlations between the predictors and dependent
variables. Separate hierachical regression analyses were conducted for parent and teacher
reports o f siblings prosocial behaviours. SES was controlled for by entering it on Step 1 for
all hierarchical regressions. To address research question 5 regarding whether characteristics
that have been found to be important in the development of prosocial behaviour for children
in the general population are significant predictors of parent and teacher reports of prosocial
behaviour in siblings o f children with autism, the following predictors were entered
simultaneously on Step 2: Global Self-worth and Social Support. To examine research
question 6 concerning whether factors that are believed to be specific to living with a child
with autism will contribute a significant amount of additional variance for parent and teacher
reports o f siblings prosocial behaviour, the following predictors were entered
simultaneously on Step 3: Perceived Competency, Siblings Perception of Parents Helping
Behaviours, and Parent Advocacy.
When parent report o f siblings prosocial behaviour was used as the dependent
variable (see Table 18), neither SES nor the general variables were found to be significant
predictors, and together explained 2% of variance (R = .02, F,c (2, 63) = .62,/? > .05. After
the autism-specific predictors were added in Step 3, parent advocacy emerged as a significant
predictor for siblings prosocial behaviour. As hypothesized in 6 (c), siblings exhibited more
prosocial behaviour when they had a parent involved in more advocacy activities. The
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addition of the autism-specific predictors to the equation accounted for an additional 9% of
the variance in predicting parent reports of prosocial behaviour, yet did not significantly
improve the prediction (R2 = .09, Finc (3, 60) = 2.11 ,/? > .05).
When teacher report of siblings prosocial behaviour was entered as the dependent
variable (see Table 19), neither SES nor the general variables in Step 2 were significant
predictors. Although there were no significant predictors, the proportion of variance
explained by the general predictors was 12% (R2 = .12, Finc (2, 54) = 3.48,/? < .05). In Step
3, none of the autism-specific factors emerged as significant predictors, and the addition of
the autism-specific predictors did not significantly improve the prediction of teacher reports
of siblings prosocial behaviour, yet explained an additional 6% of variance (R2 = .18, Finc (3,
51) = 1.30,/? >.05).
CHAPTER 4: DISCUSSION
Previous research has demonstrated that siblings of children with autism exhibit
significantly more psychosocial adjustment difficulties than siblings of typically developing
children (Bagenholm & Gillberg, 1991; Fisman et al., 1996; Gold, 1993; Rodrigue et al.,
1993; Verte et al., 2003). Nevertheless, it has been argued that there is variability within this
group of siblings, with some siblings of children with autism demonstrating adjustment
difficulties, while others are well-adjusted (Hastings, 2003; McHale et al., 1984; Smith &
Perry, 2004). Although not a primary goal of the current study, an examination of data
confirmed variability in the functioning of siblings of children with autism. In this study, the
majority of siblings were well-adjusted and demonstrated prosocial behaviour. Nevertheless,
one cannot ignore the fact that approximately one-third of siblings were demonstrating
substantial internalizing and/or externalizing behaviour problems. Furthermore,
approximately one-quarter o f siblings were reported by parents or teachers to display low
levels of prosocial behaviour. Consequently, the present study aimed to examine variability
in sibling outcome by investigating the direct effects of various sibling and parent factors
believed to be important for siblings of children with autism in relation to the impact on
siblings psychosocial adjustment and prosocial behaviour.
There are several key findings that were obtained in the present study. First, some of
the sibling and parent variables found to be important in the general population predicted
siblings externalizing behaviour, and autism-specific variables significantly added to the
prediction. However, different variables emerged as salient for siblings externalizing
behaviour for parent versus teacher reports. Second, none of the sibling or parent variables
examined in this study predicted parent or teacher reports of siblings internalizing
73
behaviour. Third, siblings perceived social support did not significantly moderate the
relationship between parental distress and siblings psychosocial adjustment. Fourth,
participants that were reported to display more internalizing and externalizing behaviours
were more likely to engage in fewer prosocial behaviours. Lastly, parents involvement in
advocacy activities was the only factor that significantly predicted prosocial behaviour in
siblings of children with autism, as reported by parents. These findings will each be
discussed in the sections that follow, in addition to the conclusions that can be drawn from
the results.
Potential Covariates for Psychosocial Adjustment and Prosocial Behaviour
Before addressing the main research questions, the associations between certain static
factors (family SES, siblings age, gender, and cognitive functioning) and siblings
psychosocial adjustment and prosocial behaviour were examined. As anticipated based on
previous research (Dodge et al., 1994; Lansford et al., 2006), family SES was significantly
associated with parent reports o f siblings internalizing and externalizing behaviour
problems, such that lower SES was indicative of greater psychosocial adjustment difficulties.
However, these correlations are considered to be of small magnitude (Cohen, 1988). Family
SES was also related to two of the independent variables, specifically academic achievement
and parent advocacy, and was therefore controlled for in all hierarchical regression analyses.
However, SES was not a significant predictor for the dependent variables and accounted for
very little variance (5%) for parent reports of internalizing and externalizing behaviour.
Given that the majority o f families (84%) in the current study fell within the categories of
middle to upper SES, it is not surprising that family SES was not predictive of siblings
psychosocial adjustment or prosocial behaviour.
Siblings cognitive functioning was not related to any of the outcomes in the current
study. This was expected even though siblings of children with autism are at greater risk for
having cognitive problems (August et al., 1981), as siblings with a developmental handicap
were not eligible to participate in this study. Consistent with previous research, siblings age
and gender were not significantly related to their psychosocial adjustment (Hastings, 2003;
Mates, 1990, Pilowski et al., 2004). However, contrary to research on prosocial behaviour
(Eisenberg & Fabes, 1998; Hastings, 2003; Wentzel & McNamara, 1999), neither siblings
age nor gender were significantly associated with prosocial behaviour in the present study.
The failure to find a relationship between siblings age and the outcomes in the present study
is not surprising given that the age range was purposely restricted to better determine factors
o f particular relevance to middle childhood. With regard to the relationship between
siblings gender and psychosocial adjustment, previous studies have typically found that it is
the interaction between gender and relative birth order that is important, rather than the direct
effect of gender (Breslau, 1982; see review by Lobato, 1983). It was not possible to examine
this interaction in the current study because the majority of siblings were older than the child
with autism. For prosocial behaviour, the influence of gender has been inconsistent
(Eisenberg & Fabes, 1998) and has varied depending on the type of prosocial behaviour
assessed. The measure used in this study assessed a variety of behaviours as indicative of
prosocial behaviour, and may have been too broad to detect gender differences.
General Factors Predicting Psychosocial Adjustment
To address the first research question that focused on factors found to be important
for childrens psychosocial adjustment in the general population, the direct effects of
siblings academic achievement, global self-worth, social support, and parental distress were
76
examined, after taking into account family SES. It was hypothesized that each o f these
factors would significantly contribute to the prediction of siblings internalizing and
externalizing behaviour problems.
Academic Achievement
In the current study, higher levels of academic achievement emerged as significant in
predicting fewer externalizing behaviour problems by parent report. This finding is
consistent with studies that have examined the association between academic achievement
and externalizing behaviours in typically developing children in the general population
(Adams, 1999; Hinshaw, 1992). However, siblings academic achievement did not emerge
as a significant predictor for teacher reports of externalizing behaviour problems. For
parents, it is possible that they hold high expectations for siblings (Hannah & Midlarsky,
1985; Seligman, 1983) to achieve scholastically to compensate for the child with autism, and
perceive fewer behavioural problems when the sibling is felt to be meeting academic
demands. Another plausible explanation involves parents heightened concern when siblings
are exhibiting academic difficulties, thereby increasing their sensitivity to any problematic
behaviors the sibling may exhibit.
In contrast to research with typically developing children in the general population
(Masten et al., 2005; Maughan et al., 2003), academic achievement was not predictive of
siblings internalizing behaviour in the current study. It is possible that an exploration of
more specific learning problems, such as reading or mathematic difficulties in particular,
rather than overall academic achievement, may shed more light on the relationship between
academic difficulties and internalizing behaviour. For example, Maughan et al. (2003) found
reading difficulties were predictive of depressive symptoms in children. It is also important
77
to consider that although Masten et al. (2005) found poor academic achievement dining
adolescence contributed to internalizing problems in young adulthood, participants in the
current study were relatively young.
Self-Concept
The hypothesis that siblings global self-worth would significantly predict parent and
teacher reports of siblings psychosocial adjustment was not supported and is in contrast to
findings by W olf et al. (1998) who found that siblings with lower levels of perceived
competence exhibited more adjustment problems. An examination of data in the present
study indicated that, in general, this group of siblings had positive perceptions of themselves
as people, which is similar to previous research findings (Bagenholm & Gillberg, 1991;
Mates, 1990; Smith, 2000). However, an exploration of siblings self-evaluations across
distinct domains revealed variability in siblings perceptions of themselves. Moreover,
significant negative correlations were obtained between siblings perceptions of their
behavioural conduct and their internalizing and externalizing behaviour by parent and teacher
report. Siblings perception of their scholastic competence was also significantly associated
with internalizing behaviour. Due to power considerations, the present study was not able to
address whether specific domains of self-concept would be predictive of siblings
psychosocial adjustment. Therefore, future research in the field of autism should explore
domain-specific self-concepts to shed more light on the relationship between self-concept
and siblings psychosocial adjustment.
Contrary to expectation, social support was not found to be a significant predictor of
fewer internalizing and externalizing behaviours in siblings of children with autism. In
general, the findings from the current study were in contrast to research on children in the
general population (Jackson & Warren, 2000) and for siblings of children with autism (Wolf
et al., 1998). Nevertheless, this finding is consistent with a study by Kaminsky and Dewey
(2002), in which there was no significant association between social support and parent
reports of internalizing and externalizing behaviours in siblings of children with autism. An
examination of individual data revealed that the group of siblings in this study, excluding one
participant, felt supported from at least one source, which has been shown in previous
research to have an association with better psychosocial adjustment (Jenkins & Smith, 1990).
Moreover, it has been argued that there may be a threshold to the benefits of social support
(Perry, 2004), and that while having a certain amount of social support is important, more
social support does not necessarily result in a greater impact on overall functioning.
Parental Distress
As hypothesized, siblings were reported by parents to exhibit a greater number of
externalizing behaviours in the presence of higher levels of parental distress. This finding is
consistent with previous research findings from both the general population (Donenberg &
Baker, 1993; Mesman & Koot, 2000) and within the field of autism (Fisman et al., 1996).
However, parental distress did not emerge as a significant predictor for parent reports of
internalizing behaviour or teacher reports of internalizing and externalizing behaviour. The
results from the present study provide support for the belief that when parents are more
stressed they have less tolerance for challenging behaviours displayed by the healthy siblings
in the family. Moreover, within the parenting literature, a strong association has been
demonstrated between parental distress and depression (Olsson & Hwang, 2001). Research
has shown that depressed parents tend to be harsher when rating the behaviour of their
children. Alternatively, it is also possible that siblings of children with autism are actually
engaging in more disruptive behaviours within the home, because when parents are more
stressed they may not be coping well, which may lead them to model some inappropriate
behaviours, such as anger. Within the school setting, the atmosphere may be less chaotic
with clear expectations and models of appropriate behaviour, thereby providing less
opportunity for siblings to engage in behaviours considered to be more externalizing in
nature. Moreover, as suggested by Hastings (2003), higher levels of parental stress may
negatively affect siblings interactions with their brother or sister with autism, thereby
creating more opportunities to display challenging behaviour within the home.
Autism-Specific Factors Predicting Psychosocial Adjustment
For the second research question, the direct effect o f factors believed to be important
for siblings of children with autism in particular (siblings perception of severity o f autistic
behaviours and parent advocacy) were examined to determine if they were salient in
predicting psychosocial adjustment after taking into account factors from the general
population.
Siblings Perception o f Severity o f Disability
As hypothesized, siblings who perceived the behaviours of the child with autism as
being more severe demonstrated more externalizing behaviour problems themselves as per
parent and teacher reports. This finding may reflect accurate sibling perceptions, such that
their brother or sister actually display a greater number of autistic behaviours, which in turn
results in greater stress within the family, less parental attention, and additional
responsibilities within the home. As a result, siblings may engage in more behaviour
problems as a means for obtaining more attention (Boyce & Barnett, 1993).
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Alternatively, the current finding may reflect parental perceptions of the symptoms and
behaviours o f the child with autism, which are influenced by various factors, including
parental distress, mental health, and feelings of competency in parents. Parent perceptions
may be inadvertently conveyed to siblings, thereby shaping their own perceptions.
Parent Advocacy
The present study was unique in exploring the influence of parents involvement in
advocacy activities on siblings psychosocial adjustment. However, the data did not support
the hypothesis that parents advocacy would significantly predict internalizing and
externalizing behaviour in siblings. In general, parents in the current study were not highly
engaged in advocacy activities. Furthermore, the measure used in the present study has not
been well established as a useful measure of advocacy, and questions were limited to parents
involvement in advocacy activities. A more thorough examination of advocacy, involving
the role o f advocacy in parents lives in addition to the number of advocacy activities they
partake in, may reveal different results. Therefore, future research into the relationship
between parents advocacy actions and siblings psychosocial adjustment appears warranted,
perhaps through a comparison of siblings with parents that are high in advocacy versus
siblings of parents low in advocacy.
Summary
In summary, the selected predictors found to be important in other fields did not
account for a significant amount o f variance for parent or teacher reports of internalizing
behaviours. Moreover, the addition of factors believed to be more specific to living with a
child with autism did not add to the model. In contrast, factors previously found to be
important for children in the general population, including SES, did account for a significant
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amount o f variance for parent reports (28%) of externalizing behaviours in siblings of
children with autism. Furthermore, the autism specific factors explained additional variance
for both parent (6%) and teacher (11%) reports. O f interest, different factors emerged as
salient for parent versus teacher reports of externalizing behaviour. The only common factor
concerned siblings perception of the frequency of autistic and related behaviours.
Social Support as a Moderator fo r Psychosocial Adjustment
To address research question 3, the potential moderating role of siblings perceived
social support on the relationship between parental distress and siblings psychosocial
adjustment was explored. It was hypothesized that siblings social support would interact
with parental distress in the prediction of siblings internalizing and externalizing behaviour.
Findings in the present study did not support this hypothesis. As previously discussed,
although siblings may truly be displaying more adjustment difficulties in the presence of high
levels of parental distress, it is also possible that the direct effect of parental distress on
siblings psychosocial adjustment may be due to reporter bias. If this were the case, it would
not surprising that siblings self-reports of social support would not interact with parental
distress to protect siblings in the presence of high levels of parental distress. Rather, one
would be more likely to expect parents perceived social support to act as a moderator.
Bristol (1984) found that when mothers of children with autism reported having a social
support network, they had lower levels of stress. Moreover, the study by Visconti et al.
(2002) found a significant interaction effect between parents stress and social support on
child behaviour problems. Given that the relationship between parental distress and social
support on a childs adjustment has been a neglected area of research, it appears warranted
that further research be conducted, particularly in the field of autism as parents are more
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likely than parents of other children to experience high levels of distress. However, it may be
more likely that parents perceived levels of social support moderates the relationship
between parental distress and siblings psychosocial adjustment difficulties.
Relationship Between Psychosocial Adjustment and Prosocial Behaviour
In keeping with the fourth hypothesis, analyses revealed significant negative
correlations between siblings internalizing and externalizing behaviour problems and
prosocial behaviour when comparing reports by same informant. However, the degree of
shared variance was small for parent reports of prosocial behaviour with internalizing (8%)
and externalizing (9%) behavior problems. The same was true for teacher reports of
prosocial behaviour with internalizing (9%) and externalizing (22%) behaviour problems.
These findings support the premise of the current study that there is merit in examining
prosocial behaviour as an independent construct from the measure of psychosocial
adjustment difficulties.
General Factors Predicting Prosocial Behaviour
To address the fifth research question that focused on factors found to be important
for prosocial behaviour in the field of developmental psychology, the direct effects of global
self-worth and social support were examined. It was hypothesized that each of these factors
would significantly contribute to the prediction of siblings prosocial behaviour.
Self-Concept
The results from multiple regression analyses did not support the hypothesis that
higher global self-worth would be predictive of more prosocial behaviour in siblings of
children with autism. One plausible explanation for this finding concerns the questionnaire
used in the current study to assess prosocial behaviour, as it incorporated a number of
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behaviours that can be considered prosocial in nature. Perhaps a more narrow definition o f
what constitutes prosocial behaviour would have yielded different results. This argument is
consistent with research findings by Cauley and Tyler (1989) who found that self-concept
was a significant predictor for cooperative behaviours only.
Results from this study also failed to support the hypothesis that higher levels o f self-
reported social support would be predictive of more prosocial behaviour in siblings of
children with autism as reported by parents and teachers. As previously mentioned, the lack
of specificity of each measure used to assess these constructs must be considered. Although
not possible in the present study given power limitations, it would be important in fixture
research to determine whether specific sources of support are predictive for certain aspects of
prosocial behaviour.
Autism-Specific Factors Predicting Prosocial Behaviour
For the last research question, the direct effect of factors believed to be important for
siblings o f children with autism in particular (siblings perception o f parents empathic
attitudes and behaviour, siblings perception of their own competence, and parent advocacy)
were examined to determine if they were salient in predicting prosocial behaviour after
taking into account factors from the general population.
Siblings Perceptions o f Parents Empathic Behaviour
Contrary to expectations, siblings in this study were not more likely to demonstrate
prosocial behaviour if they perceived their parents as being more empathic and engaging in
helping behaviours. While Grissom and Borkowski (2002) found that siblings perception of
maternal attitudes and behaviours was significant in predicting self-efficacy for siblings of
children with disabilities, this may not translate into siblings actually demonstrating such
behaviour themselves. In addition, the measure created by Grissom and Borkowski (2002)
was utilized with adolescents. Although it was modified for the present study for use with
younger children, the relationship of siblings perception of their parents attitude and
behaviours with prosocial behaviour may be more relevant for adolescents. Alternatively,
the failure for siblings perceptions of parental attitudes and behaviours to emerge as salient
in predicting prosocial behaivour may result from the use of different informants, such that
the self-perception of the sibling is poor at predicting outcomes based on parent and teacher
reports.
Siblings Perception o f Competence
Current results did not provide support for the hypothesis that siblings perception of
their competency in helping their brother or sister with autism did not emerge as a significant
predictor for prosocial behaviour. Similar to the argument above, this finding may not be
unexpected given that different informants provided information for the dependent and
independent variables. Also, one must question the psychometric properties of the measure
used to assess siblings perception o f their own competency, as it was created for the purpose
o f the present study, was based on a small number of items, and internal consistency was
only fair. Beyond the psychometric problems with this measure, siblings may have
responded in a socially desirable manner to the interview questions in an attempt to present
themselves in a more positive light. Holte et al. (1984) have shown that when children
perceive themselves to be helpful but they are not accurate in their perceptions, they are not
more likely to behave in a prosocial manner.
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Parent Advocacy
The ability of parent advocacy to predict siblings prosocial behaviour was partially
supported, as siblings were reported by parents to engage in more prosocial behaviours when
parents were more heavily involved in advocacy activities. In fact, an examination of
individual data revealed that 28% of siblings were identified by their parents as engaging in a
high level of prosocial behaviour. It appears that parents may be transmitting their values to
siblings, thereby shaping siblings feelings, attitudes, and behaviour towards others. Parents
that are involved in advocacy activities may also create opportunities for siblings to behave
in a prosocial manner within the home and community, such as assisting them in volunteer
activities (e.g., Autism Society). In contrast, siblings were not reported by teachers to engage
in more prosocial behaviours when parents were more involved in advocacy activities. This
may be because teachers are not aware of the activities siblings are involved in outside of the
school setting. It is also a possibility that reporter bias is playing a role, as parents may want
to believe that their actions have a positive impact on siblings.
Summary
In summary, the selected factors found to be important in previous research studies
did not emerge as significant in predicting parent or teacher reports of siblings prosocial
behaviour. Nevertheless, these variables did account for a significant amount of variance for
teacher reports of prosocial behaviour. An examination of autism-specific factors revealed
that parent advocacy was a significant predictor for parent reports of siblings prosocial
behaviour. However, the addition of factors believed to be more specific to living with a
child with autism did not significantly add to the regression model for parents or teachers.
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Strengths
The current study was designed to address some of the gaps evident in existing
research within this field. Therefore, despite the limitations discussed below, the present
study makes some significant contributions to research examining the experience of siblings
o f children with autism. First, several methodological issues that are prevalent in the field of
autism were addressed. For example, the current study had a relatively large sample size in
comparison to other published studies, thereby reducing Type 2 error for statistical analyses.
Moreover, a more narrow age range was employed, as factors that may be important to the
functioning o f siblings in middle childhood may be different from those for preschoolers or
adolescents. The current study also included a developmental screener for siblings, meaning
that the potential confound of siblings cognitive functioning was considered. In addition,
exclusion criteria were included to ensure that participants did not have a Pervasive
Developmental Disorder or Mental Retardation.
In comparison to much of the literature in the developmental disability field that has
focused on parents as reporters, the current study is strengthened by the inclusion of multiple
informants for examining siblings psychosocial adjustment and prosocial behaviour. It is
not unexpected that different informants have different perceptions of siblings, and this may
provide a broader picture of how siblings of children with autism are perceived and how they
behave in across contexts.
The current study also extends research on siblings of children with autism by
investigating several variables that previous research has neglected to consider as having an
impact on siblings psychosocial adjustment. Specifically, this is the only known study to
investigate whether siblings academic achievement has an impact on their adjustment, a
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factor that has been found to be important for children in the general population (Adams et
al., 1999; Masten et al., 2005; Maughan et al., 2003). The present study was also innovative
in that siblings perception of the severity of autistic behaviours was explored in relation to
their own internalizing and externalizing behaviours. Lastly, the current study went beyond
an examination of parental distress as the sole family factor that may impact on siblings
psychosocial adjustment, by being the first to examine the impact that parents involvement
in advocacy activities may have on siblings.
Finally, the current study also adds to research in this field by addressing past
criticisms that researchers have tended to focus on the negative impact children with autism
may have on their siblings. Therefore, in an attempt to examine a positive impact on siblings
o f children with autism, prosocial behaviour was explored. The sibling relationship provides
an opportunity to develop prosocial skills (Dunn & Munn, 1986) and prosocial behaviour has
been shown to have a positive impact on childrens long-term adjustment (Tremblay et al.,
1992).
Limitations
When interpreting the results from the current study, several limitations should be
taken into consideration. First, as in any study, the nature of the sample is important and
several aspects o f this sample need to be acknowledged as potential limitations. Although
the present study had a large sample size relative to previous studies in this field and focused
on a specific age range, some o f the sample characteristics limit ones ability to generalize
the findings. For example, given that the factors believed to be important for siblings
functioning may vary across developmental periods, the age range in the current study was
restricted. However, the majority of siblings that participated in this study were between the
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ages o f 7 and 11 years and were older than the child with autism, thereby limiting
generalization of findings to older siblings in middle childhood.
Another limitation of the present study concerns possible sampling bias. While
participants were not drawn from clinical samples, this sample may have been clinically
biased as parents may have chosen to have their family participate in this study because of
concern about the siblings adjustment. The parent information letter stated that parents
would receive a report summarizing the siblings cognitive, academic, and behavioural
functioning. Nevertheless, the majority of siblings did not show clinically significant
internalizing or externalizing behaviour problems by parent or teacher reports.
Third, the response rate for participating in the current study should be considered.
Although it was not possible to accurately determine response rate, the number of parents
and siblings participating in this study was much lower than the number of information
letters and flyers mailed to families from the various agencies. A potential reason for a low
rate o f participation may be related to the fact that the child with autism was not a participant,
and therefore not directly benefiting from the results of this study. Moreover, this study
required several hours of families time, and parents that were already feeling overwhelmed
in their day-to-day activities may have chosen not to respond to the invitation to participate.
This was evident when a few families withdrew from the study at the outset after receiving
the initial questionnaires in the mail, stating that they felt the study would be too time-
consuming for them. Given the time requirements, it is possible that the sample in the
present study was biased towards healthier families that were well organized.
A fourth limitation concerns the nature of the data, which were based solely on
perceptions from siblings, parents, and teachers. As previously discussed, participants
89
perceptions may be biased in non-random ways which may confound results, such as social
desirability in the siblings. Where possible, it would be important to include more objective
measures, such as observational data for prosocial behaviour.
It is also important to consider the correlational nature of this study. Although data in
the current study allows for the prediction of psychosocial adjustment and prosocial
behaviour in siblings of children with autism at one point in time, there is no evidence for
possible causal pathways.
Finally, due to sample size, power was an issue for multiple regression analyses,
particularly for teacher data. Although the present study has one of the largest sample sizes
to date and the response rate from teachers was high, the number of teachers that participated
in the study was less than the number of parents. As a result, there was less sensitivity to
detecting relationships between specified sibling and parent factors and internalizing,
externalizing, and prosocial behaviours in the multiple regression analyses that included
teachers as the rater. Sample size and risk o f Type 1 error also precluded the examination of
specific subscales within certain measures, such as self-concept and social support.
Clinical Implications
The results from this study have implications for clinicians providing services to
siblings o f children with autism and their families. Similar to previous research studies that
have noted that siblings o f children with autism are a heterogeneous group (Hastings, 2003;
McHale et al., 1984; Smith & Perry, 2004), the present study demonstrates that there is no
clear profile regarding psychosocial adjustment and prosocial behaviour. Although siblings
o f children with autism have been shown to be a group at risk for psychosocial adjustment
difficulties (Bagenholm & Gillberg, 1991, Fisman et al., 1996; Gold, 1993; Hastings, 2003;
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Rodrigue et al., 1993; Smith, 2000; Verte et al., 2003), an examination o f individual data
revealed that the majority o f siblings in this study were not exhibiting clinically significant
problems, and by these considerations are not in need of treatment. Therefore, it is important
for clinicians to refrain from over-pathologizing siblings of children with autism by
automatically assuming they will experience substantial difficulties. Nevertheless, the cross-
sectional nature o f the current study does not allow us to be certain that the siblings reported
to be well-adjusted at the current time may not require therapeutic support at some point in
the future.
In addition, we cannot neglect the fact that a minority of siblings of children with
autism are currently exhibiting clinically significant psychosocial adjustment difficulties, as
well as low levels o f prosocial behaviour, and therefore require some form of therapeutic
intervention. When thinking about appropriate interventions, it is important for clinicians to
conduct a thorough assessment, as some siblings of children with autism may have a
Pervasive Developmental Disorder themselves, as there is a higher incidence in first-degree
relatives (Fombonne, Bolton, Prior, Jordan, & Rutter, 1997). As a result, interventions for
some siblings should be individualized to target their own challenges that are independent of
having a child with autism in the family. Clinicians must also bear in mind that having
another child with a diagnosis in the family would likely increase stress for parents, which
may in turn negatively impact all children in the family. Because each family member has an
effect on all other members in the family, it is important to consider what is best for overall
family functioning in addition to individual family members.
Although it is important to consider individual differences when determining the best
therapeutic approach for siblings of children with autism, it does not negate the fact that
interventions targeted at groups o f siblings who share some commonalities can be beneficial.
In exploring factors that are important for predicting siblings internalizing and externalizing
behaviour problems at one point in time, current findings lend support to the notion that
different factors may be at play. In fact, none of the variables explored in the present study
predicted siblings internalizing behaviour problems. This is concerning given that just
under one-third of siblings were identified by parents and teachers as exhibiting borderline to
clinically significant internalizing problems. It will be important for clinical work to inform
research and vice versa in the search for factors that are impacting on siblings internalizing
and externalizing behaviours, as different interventions may be required for siblings that are
experiencing more internalizing behaviour problems versus problems that are more
externalizing in nature. Such specification may result in more successful therapeutic
outcomes for siblings.
One of the notable findings in the present study concerns siblings perception of
disability severity, such that siblings perceiving their brother or sister as exhibiting a higher
frequency of autistic symptoms and related behaviours were reported by both parents and
teachers as exhibiting more externalizing behaviour problems themselves. This would
suggest that it would be important for clinicians to explore siblings perceptions of their
brother or sisters disability, and perhaps differentially target those siblings that perceive
more autistic symptoms and challenging behaviours. These siblings may benefit from
learning coping strategies for dealing with such behaviours. In addition, educating these
siblings about the nature of autism may help to clarify any misconceptions they hold about
autism, assist them in understanding why their brother or sister exhibits certain behaviours,
and potentially create greater tolerance for such challenging behaviours. Moreover,
92
providing siblings with accurate knowledge about autism may assist them in sharing this
information with their peers and others in the community, which may be especially important
given research findings indicating siblings of children with autism report feelings of
embarrassment (Roeyers & Mycke, 1995).
Findings from the current study also provide some encouraging support for the
importance of clinicians and researchers to focus on positive outcomes for siblings of
children with autism. Although participants in the present study were not compared to a
control group as this was not a purpose of the study, individual data indicated that many of
the siblings were engaging in levels of prosocial behaviour similar to a normative sample.
Moreover, the degree o f shared variance between psychosocial adjustment difficulties and
prosocial behaviour was small. Considering the study by Tremblay et al. (1993) found that
boys who initially had externalizing behaviour problems but also engaged in prosocial
behaviour were better adjusted several years later, prosocial behaviour may be an important
target when developing interventions for siblings demonstrating adjustment difficulties.
Results from the present study also stress the importance of considering parental
functioning when evaluating siblings behaviour. For example, higher levels of parental
distress predict more externalizing behaviour problems in siblings of children with autism.
Regardless of whether this finding is due to parents over-reporting problematic behaviour or
whether siblings are truly demonstrating more behaviour problems, parents that are stressed
require professional support. By addressing parents needs, the expectation is that when
parents are functioning well, they are likely to have more positive interactions with their
children, which subsequently may have positive impacts on siblings.
93
Future Research
Although the current study provides some insight into sibling and parent
characteristics that may be important for predicting externalizing behaviour in siblings of
children with autism, many questions remain that warrant further attention. In particular, the
factors examined in the current study failed to predict siblings internalizing behaviour.
Therefore, other factors that have been well established in other fields for predicting
childrens psychosocial adjustment should be explored, including parenting style, discipline
practices, family cohesion, siblings temperament, and siblings coping resources (Dyson et
al., 1989; Gamble & McHale, 1989; Garmezy, 1985; Rutter, 1985). In addition, exploring
the influence o f parents mental health (e.g., depression) on siblings psychosocial
adjustment may prove fruitful as it has in the general population (Billings & Moos, 1983;
Fendrich, Warner, & Weissman, 1990; Rutter, 1985), especially given the potential for
genetic vulnerability.
While the present study extended past research in the field of autism with its inclusion
o f a positive behavioural outcome for siblings, the sibling and parent characteristics selected
for predicting siblings prosocial behaviour did not prove fruitful, accounting for very little
variance. Nevertheless, it is too early to suggest that the examination of prosocial behaviour
in siblings of children with autism is not a worthy endeavor. By addressing some limitations
o f this study, future research examining specific aspects of prosocial behaviour using both
indirect (e.g., self or other report) and direct (e.g., observation) methods may shed more light
on this construct.
The current study used multiple informants for predictor variables as well as outcome
variables. It is not uncommon to find inconsistent findings across informants in clinical
94
settings and research studies. These differences may reflect true variability in siblings
behaviour across contexts or may represent biases in respondents. When examining
psychosocial adjustment difficulties in siblings of children with autism in future studies, it
would be important to obtain siblings perceptions on the outcome measures, in addition to
parents and teachers. Findings from the present study indicate that this is particularly
relevant when many o f the factors believed to predict the siblings behaviour are based on
sibling perceptions. However, one must take into consideration participants age, as there are
few measures with good psychometric properties that are appropriate for younger children.
Rather than focusing on group differences, the present study examined variability
within a sample of siblings of children with autism using dynamic factors that can be targeted
in supportive and therapeutic interventions. It is crucial that research inform the
development o f prevention and intervention programs for siblings of children with autism,
particularly when there is increasing evidence that many siblings of children with autism are
well-adjusted, and the cost of implementing prevention programs to a group that has been
identified as at risk solely on the basis of having a child with autism in the family is not cost
effective. Therefore, a next step for researchers may involve an examination o f a
combination of factors that may determine those siblings most at risk for behaviour
problems. Researchers could also examine a few subgroups of siblings of children with
autism that display different patterns between the selected independent and dependent
variables. Findings from this research may provide information on what type of intervention
would be best suited for particular siblings.
Finally, longitudinal research is lacking within the field of autism, particularly when
examining siblings psychosocial adjustment. Following from the study by Tremblay et al.
(1992), longitudinal research would help determine whether those siblings who initially
exhibited internalizing and/or externalizing behaviour problems, yet also displayed prosocial
behaviour, were better adjusted a few years later. If so, prosocial behaviour would be
considered protective for siblings of children with autism, and therefore teaching and
encouraging them to be engage in prosocial behaviour at a young age would be helpful for
their overall adjustment and could be targeted in intervention efforts. Longitudinal research
would also permit investigators to examine causal pathways. Given a sufficient number of
participants, statistical analyses (e.g., structural equation modeling) allowing researchers to
examine pathways and test models may prove informative.
Conclusion
The current study provides evidence for the belief that there is variability in the
functioning of siblings o f children with autism, with the majority of siblings reported as well-
adjusted by their parents and teachers in this cross-sectional study. Nevertheless, a small
group of siblings are reportedly exhibiting substantial internalizing and externalizing
behaviour problems, as well as low levels of prosocial behaviour. Although a minority, these
siblings appear to be struggling and require support. Therefore, the goal for researchers and
clinicians alike becomes one in which those siblings that are at greater risk for having
psychosocial adjustment difficulties are more readily identified, allowing one to intervene
accordingly. This is not an easy task, as findings from this study suggest that different
factors play a role in siblings adjustment, depending on the reporter. Obtaining information
directly from siblings regarding their own adjustment may shed additional light on what
types of supports and interventions would be most helpful. Moreover, siblings exhibiting
96
more externalizing problems may need to be differentially targeted from those demonstrating
behaviours that are more internalizing in nature.
Findings from the present study also support the notion that there are additional
factors that need to be considered when working with siblings of children with autism, as
they have unique experiences that children living in a family without a child with a disability
will not experience. For example, siblings perceptions of the frequency of autistic and
related behaviours appears to be an important factor to consider when evaluating siblings
psychosocial adjustment and warrants further exploration by researchers and clinicians.
Lastly, exploring both positive and negative outcomes for siblings of children with
autism is a worthy endeavour, as they are not mutually exclusive. This approach serves to
remind researchers and clinicians working with these families about the strengths individuals
possess despite the challenges they may face, and encourages professionals to assist them in
developing characteristics that are believed to impact adjustment in the long term.
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Ill
Table 1
Comparison o f Means on Outcome Measures fo r Current and Previous Teachers
Outcome M SD df t
Internalizing
Current Teacher 55.17a 10.92 59 0.73
Previous Teacher 59.99b 13.64
Externalizing
Current Teacher 53.76a 9.56 59 -0.27
Previous Teacher 54.47 b 9.95
Prosocial
Current Teacher 55.28 a 12.91 59 -1.30
Previous Teacher 59.99 b 13.64
an = 42. bn = 19.
112
Table 2
Informant Completing the Dependent and Independent Measures
Measures Sibling Parent Teacher
Dependent Variables
Child Behavior Checklist 4
Teacher Report Form 4
Social Competence Inventory 4 4
Independent Variables
Wechsler Abbreviated Scale of Intelligence 4
Kaufman Test of Educational Achievement 4
Autism Specific Behaviour Scale 4
Self-Perception Profile for Children 4
Social Support Scale for Children 4
Children and Families Scale 4
Parenting Stress Index - Short Form 4
Parent Advocacy Scale 4
113
Table 3
Descriptive Information fo r Independent and Dependent Variables
Variable Min Max M SD
Siblings Age (years) 7.00 14.00 9.34 1.95
Cognitive Functioning (SS) 80.00 132.00 107.38 12.84
SES (Ordinal Scale) 1 .0 0 5.00 3.84 1.15
Achievement (SS) 75.00 144.00 105.87 15.23
Global Self-Worth (mean) 1.83 4.00 3.40 .59
Social Support (RS) 59.00 96.00 83.85 9.62
Parental Distress (RS) 15.00 60.00 35.00 9.31
Parents Empathy (RS) 47.00 111.00 84.66 1 2 .1 2
Perceived Competency (mean) 1 .0 0 2.78 1.99 .34
Severity (RS) 18.00 39.00 30.56 4.31
Parent Advocacy (RS) 1 .0 0 14.00 6.15 3.42
PR Internalizing (T-score) 33.00 79.00 53.10 11.50
TR Internalizing (T-score) 37.00 73.00 54.54 9.92
PR Externalizing (T-score) 33.00 90.00 53.89 11.47
TR Externalizing (T-score) 41.00 85.00 53.98 9.61
PR Prosocial (RS) 28.00 85.00 65.20 12.32
TR Prosocial (RS) 27.00 80.00 56.75 13.21
Note: SES = Socioeconomic Status; PR = Parent Report; TR = Teacher Report; SS = Standard

Scores; RS = Raw Scores.
Reproduced with permission of the copyright owner. Further reproduction
Table 4
Intercorrelations o f Independent Variables with Internalizing and Externalizing Behaviours
Variables 1 2 3 4 5 6 7 8 9 10 11 12 13
1. SES .0 0 .14 .26* .13 .19 .09 .08 .33** -.24* - .0 2 -.25* -.04
2. Sibling age
.09 .24* - .2 0 -.16 -.17 .14 .13 .1 2 .2 0 .08 .25
3. FSIQ
.52** .1 1 -.0 1 - .0 2 .03 .2 2 -.19 -.07 - .2 0 - .2 1
4. Academic .0 2 -.08 .04 .04 .1 1 -.19 - .1 1 -.35** - .2 0
5. Self-worth .69** .07 .0 2 -.0 1 -.26* - .2 0 .06 .07
6 . Social support
-.08 -.04 -.06 -.18 -.08 .1 1 .07
7. Parental distress .18 -.17 .14 -.05 .25*

prohibited without perm ission.

- .1 2
8. Severity .09 .03 .09 .24* .27*
9. Parent advocacy -.07 .15 -.25* -.06
10. PR Internalizing
.27* .65** .1 0
1 1 . TR Internalizing .04 4Q**
12. PR Externalizing .33**
13. TR Externalizing
Note: SES = Socioeconomic Status; FSIQ = Full Scale IQ; PR = Parent Report; TR = Teacher Report
**p< .01; *p< .05
Reproduced with permission of the copyright owner. Further reproduction
Table 5
Intercorrelations o f Independent Variables with Prosocial Behaviours
Variables 1 2 3 4 5 6 7 8 9 10
1. SES .0 0 .14 .13 .19 -.0 1 - .1 2 -.04 .03
2. Sibling age
.09 - .2 0 -.16 .24* .0 2 .13 .09 -.16
3. FSIQ
.1 1 -.0 1 - .0 1 - .2 2 .2 2 .04 .07
4. Self-worth
.69** .2 0 .17 - .0 1 -.0 1 .35**
5. Social support .2 0 .2 0 -.06 .04 .35**
6 . Parents empathy
.43** -.09 .1 0 .23
prohibited without perm ission.
7. Competence - .1 2 -.0 1 .06
8 . Parent advocacy
.19 .09
0. PR Prosocial .28*
10. TR Prosocial
Note: SES = Socioeconomic Status; FSIQ = Full Scale IQ; PR = Parent Report; TR = Teacher Report
**p<.01
*p < .05
116
Table 6
Variability in Siblingss Scores on the Dependent Variables

Respondent
Dependent Variable Parent (N - 72) Teacher( N = 61)
Internalizing Behaviour
Non-Clinical 72% 70%
Borderline 6 % 5%
Clinical 22 % 25%
Externalizing Behaviour
Non-Clinical 64% 75%
Borderline 14% 7%
Clinical 22 % 18%
Prosocial Behaviour
High 19% 18%
Average 64% 66%
Low 17% 16%
Note: % = Percentage.
117
Table 7
Mean Difference Between Females and Males on the Dependent Variables

Female Male
Dependent Variable M SD M SD t df P
PR Internalizing 51.53a 11.15 55.06b 11.81 1.30 70 .2 0
TR Internalizing 54.89 9.53 54.04d 10.63 -.33 59 .75
PR Externalizing 53.95a 11.76 53.81b 11.28 -.05 70 .96
TR Externalizing 54.97 8.40 52.56d 11.16 -.96 59 .34
PR Prosocial 65.55a 1 2 .2 2 64.77b 12.63 -.26 70 .70
TR Prosocial 58.97 11.50 53.54d 15.01 -1.60 59 .1 2
Note. PR = Parent Report; TR = Teacher Report
an = 40. bn = 32. cn = 36. dn = 25.
118
Table 8
The Mean Difference Between Siblings with a Diagnosis and Those Without on the
Independent Variables_______________________________ ___________________
Diagnosis No Diagnosis
Independent Variable M SD M SD t df P
Achievement 94.90a 14.61 107.67b 14.67 2.55 69 01 **
Global Self-Worth 3.33a .61 3.41d .59 .39 70 .70
Social Support 82.60a 8.93 84.05d 9.78 .44 70 .6 6
Parent Distress 36.84a 9.34 34.70d 9.35 -.67 70 .51
Autism Severity 31.60a 5.56 30.39d 4.10 -.82 70 .41
Competency 1.98a .44 2 .0 0 d .33 .1 0 70 .92
Parents Empathy 84.78c 13.61 84.65d 1 2 .0 1 -.03 69 .98
Parent Advocacy 7.40a 4.35 5.95d 3.24 -1.25 70 .2 2
Note. an = 10. bn = 61. cn 62.

Os
li
li
**p = .0 1
119
Table 9
Summary o f Hierarchical Regression Analysis fo r Variables Predicting Parent Reports o f

Siblings Internalizing Behaviours (N = 67)_____________________________________
Variable B SEB (3
Step 1
Socioeconomic Status -2.29 1 .2 1 -.23
Step 2
Socioeconomic Status -1.85 1.25 -.18

Academic Achievement - .1 0 .09 -.13
Global Self-Worth -6.25 3.24 -.32
Social Support .09 .2 1 .08
Parental Distress .27 .15 .2 1
Step 3
Socioeconomic Status -1.97 1.36 - .2 0

Social Support .1 0 .2 2 .09
Parental Distress .27 .16 .2 2
Siblings Perception of Severity .0 1 .33 .0 0
Parent Advocacy .1 2 .47 .03

Note. R2= .05 for Step 1; ARJ = . 12 for Step 2 (ps > .05); AR2 = .00 for Step 3 (ps > .05).
120
Table 10
Summary o f Hierarchical Regression Analysis fo r Variables Predicting Teacher Reports o f

Siblings Internalizing Behaviours ( N : 58)_____________________________________
Variable B SE B P
Step 1
Socioeconomic Status -.04 1 .1 1 .0 0
tep 2
Socioeconomic Status .39 1.15 -.05

Academic Achievement -.07 .09 -.11
Parental Distress - .0 1 .15 - .0 1
tep 3
Socioeconomic Status -.18 1.27 -.0 2
Academic Achievement -.07 .09 - .1 1

Parental Distress .0 0 .16 .0 0
Siblings Perception o f Severity .17 .31 .08

Parent Advocacy .47 .48 .15
Note. R2= .00 for Step 1; AR2 = .09 for Step 2 (ps > .05); AR2 = .03 for Step 3 (ps > .05).
121
Table 11

Siblings Externalizing Behaviours (N = 67)
Variable B SEB P
Step 1
Socioeconomic Status -2.35 l .2 2 -.23
Step 2
Academic Achievement - .2 1 .09 -.29*

Social Support .36 .19 .29
Parental Distress .45 .14 .35**
Step 3
Socioeconomic Status -1.84 1 .2 2 -.18

Academic Achievement - .2 1 .08 _ 29 **
Global Self-Worth -4.25 2.94 -.2 2

Parental Distress .35 .15 .28*
Siblings Perception of Severity .60 .29 .2 2 *
Parent Advocacy -.45 .42 -.13
........ ^4'" /"\1\ . n2
**p = .01.
*p < .05.
122
Table 12

Siblings Externalizing Behaviours (N = 58)_________________________________
Variable B SEB P
Step 1
Socioeconomic Status -.15 l.08 - .0 2
Step 2
Socioeconomic Status - .1 1 l.II - .0 1
Academic Achievement -.1 0 .08 -.17

Parental Distress -.06 .14 -.06
Step 3
Socioeconomic Status - .2 0 1.16 -.03

Social Support 19 .19 .19
Siblings Perception o f Severity .75 .28 .34**
Parent Advocacy -.26 .43 -.09
I T . . . J- , .n 2
Note. R = .00 for Step 1; AR = .11 for Step 2 (ps > .01); AR = .11 for Step 3 (ps < .05).
**p = .01.
123
Table 13
Summary o f Hierarchical Regression Analysis fo r Moderation o f the Relationship Between

Parental Distress and Parent Report o f Internalizing Behaviour by Social Support (N = 67)
Variable B SEB P
Step 1
Socioeconomic Status -2.44 1 .2 1 -.24*
Step 2
Socioeconomic Status -2.31 1.23 -.23

Social Support -.16 .15 .13
Parental Distress .19 .15 .15
Step 3

Social Support -.13 .15 - .1 1
Parental Distress .18 .15 .14

Social Support x Parental Distress .03 .0 2 .2 2
*p < .05.
124
Table 14

Parental Distress and Teacher Report o f Internalizing Behaviour by Social Support (N = 58)
Variable B SEB P
Step 1
Socioeconomic Status -.15 1 .1 0 - .0 2
Step 2
Socioeconomic Status -.15 1 .1 2 - .0 2
Social Support -.17 .14 -.17

Step 3
Socioeconomic Status -.17 1.13 - .0 2
Social Support -.18 14 -.17

Social Support x Parental Distress - .0 1 .0 1 -.06
1. T _ ._ ta 2 m I? c - A tx 2 /x- o x . . . . - w _____ AA^A ATx 3
125
Table 15

Parental Distress and Parent Report o f Externalizing Behaviour by Social Support (N = 67)
Variable B SEB P
Step 1
Step 2
Socioeconomic Status -3.07 1.18 -.30**

Social Support .2 1 .15 .17
Step 3
Socioeconomic Status -3.06 1.19 _ 30**
Social Support .2 0 .15 .16

Social Support x Parental Distress .0 0 .0 2 -.03
Note. R2 = .06 for Step 1; AR2 = . 11 for Step 2 (ps < .05); AR2 = .00 for Step 3 (ps > .05).
**p< .01
*p < .05
126
Table 16

Parental Distress and Teacher Report o f Externalizing Behaviour by Social Support (N = 58)
Variable B SEB P
Step 1
Socioeconomic Status -.31 1.07 -.04
Step 2
Socioeconomic Status -.27 1 .1 0 -.03

Social Support .0 1 .14 .0 1
Parental Distress -.13 .14 - .1 2
Step 3
Socioeconomic Status -.23 1 .1 1 -.03

Social Support .0 1 .14 0 1
Parental Distress -.13 .14 - .1 2
Social Support x Parental Distress - .0 1 .0 1 - .1 2

r.2 o -L ... 1. .n 2 __ J. r- . ^ / ^
127
Table 17
Relationship o f Siblings Prosocial Behaviour with Siblings Internalizing and Externalizing

Behaviours (Pearson r)_______________________________________________________
Prosocial Behaviour
Variable Parent Report Teacher Report
Parent Report
Internalizing -.28* -1 1
Externalizing -.30* -.25
Teacher Report
Internalizing -.06 -.30*
Externalizing - .2 0 _ 4 7 **
**p < .0 1
*p < .05
128
Table 18

Siblings Prosocial Behaviours (N = 67)_______________________________________ _
Variable B SEB P
Step 1
Step 2
Step 3
Socioeconomic Status -1 .8 6 1.44 -.18
Siblings Perception of Parents Empathy .14 .14 .14
Siblings Perceived Competency -2.64 4.93 - .0
Parent Advocacy 1 .1 1 .48 .31*
*p < .05.
129
Table 19

Siblings Prosocial Behaviours (N = 58)________ '________ ___________ ____________
Variable B SEB P
Step 1
Step 2
Socioeconomic Status -.03 1.42 .0 0
Global Self-Worth 3.37 3.74 .16
Social Support .29 .24 .2 2
Step 3
Global Self-Worth 3.01 3.72 .14
Siblings Perception of Parents Empathy .2 2 .15 .2 2
Siblings Perceived Competency -4.05 5.47 - .1 1
Parent Advocacy .78 .55 .2 0
Note. R2= .00 for Step 1; AR2 = .12 for Step 2 (ps < .05); AR2 = .06 for Step 3 (ps > .05).
Appendix A
Ethical Review
130
131
University of Toronto
Hg.Tje
1 A P B O ftI
OFFICE OF RESEARCH SERVICES
PR O T O C O L R E FE R E N C E #9204
January 31, 2003
Prof. Adrienne Perry Ms. Tara Smith

Psychology Department 704-161 St. George Street
York University Toronto, ON
4700 Keele Street M5R 2M3
Toronto, ON M3J 1P3
Dear Prof. Perry and Ms. Smith:
Re: Your research protocol entitled, Siblings of Children with Autism: An Investigation of
Sibling and Parent Characteristics Contributing to Positive and Negative Psychosocial
Outcomes
We are writing to advise you that the Education Ethics Review Committee (EERC) has granted
approval to the above-named research study.
The approved information-letters and consent forms (revised January 12,2003) are attached.
Participants should receive a copy of their consent form.
During the course of the research, any significant deviations from the approved protocol (th at is,
any deviation w hich w ould lead to a n in cre ase in risk or a d e c re a s e in b en efit to
p articip an ts) and/or any unanticipated developments within the research should be brought to
the attention of the Office of Research Services.
Best w ishes for the successful completion of your project.
Yours sincerely,
Bridgette Murphy
Assistant Ethics Review Officer
Enclosure
xc: Prof. D. Pringle (Chair, EERC); Ms. M. Macri (Student Liaison)
Sim coe Hall, Room 10A, 27 King's C ollege Circle Toronto O ntario M 5S 1A1
TEL: 4 1 6 /9 4 6 -3 2 7 3 FAX: 4 1 6 /9 4 6 -5 7 6 3 EMAIL: eth ics.review @ utoronto.ca
Appendix B
Recruitment Agencies
132
Autism Society Ontario
Toronto Chapter
- York Region Chapter
- Peel Region Chapter
Chatham-Kent Chapter
London Chapter
Windsor/Essex County Chapter
Thistletown Regional Centre
Surrey Place Centre
Behavior Institute
Toronto Preschool Autism Services (waitlist & clients)
Erin Oak -Preschool Autism Services (waitlist & clients)
Kinark - Preschool Autism Services (waitlist & clients)
Geneva Centre
Appendix C
Demographic Information
134
135
I.D. #
FAMILY INFORMATION FORM
Date Completed:______ _________________
1. Please list the adults living in the household.
First Name Sex Age Relationship to child

with Autism/PDD-NOS
1.
2.
3.
4.
2. Please list all the children in the family.
First Name Sex D.O.B. Does Relationship to Any

(mm/dd/yr) he/she child with Diagnosis?
live at Autism/PDD If yes, what?
home?
1.
2.
3.
4.
5.
6.
3. Family Constellation:
Married / Common Law
Separated / Divorced / Widowed
Never Married
About Parents
4. Country of Birth:
Mother Father
136
5. If bom outside o f Canada, how many years have you lived in Canada?
M other_____________ Father_________
6 . What do you consider to be your ethnic background?

Please be specific (e.g., European, Asian, East Indian)
Mother ________________________ Father_________
7. What is your first language:
Mother _____________________ Father_________
8 . What language(s) do you speak in the home?
English only
D English and______________________
IH __________________________ only
9. What is your religious background?

Please be specific (e.g., Presbyterian, Roman Catholic, Jewish)
M other_________________________ Father___ ______
10. What is the highest level of education you have completed?
Mother Father
Cl Elementary Elementary
Some high school Some high school
High School D High School
D Some college/university Some college/university
Cl College/Technical Diploma College/Technical Diploma
Cl Undergraduate Degree D Undergraduate Degree
D Professional/Graduate Degree D Professional/Graduate Degree
137
11. What is your occupation?

Please be specific (e.g., Legal Secretary, Bank Executive, Truck Driver, Elementary
Teacher)
Mother Father
12. Do you currently work outside the home?
Mother Father
Not currently Not currently
CD Part-time Part-time
Full-time Full-time
13. Has having a child with autism restricted your employment decisions?
Mother Father
Y /N Y /N
Mother - If yes, please comment:
Father - If yes, please comment:
Appendix D
Autism Specific Behaviour Scale for Siblings
138
139
Autism Specific Behaviour Scale for Siblings

Instructions: Im going to describe behaviours that some children with autism show. Then
Im going to ask you how much your brother/sister has trouble with or shows that behaviour
and you are going to say (point to response card) not at all, somewhat, or a lot. Im
going to also ask you how much each behaviour bothers you when you see it. Lets try the
first one.
How much does How much does it

your brother/sister bother you when
have trouble with you see it?
the following?
CA p C3 CA p
O o
r-f-
O
a
Verbal Communication Difficulties

ft
p
I ft
s-
has trouble telling you or your parents what

he/she wants (e.g., something to eat/drink), has
trouble understanding you when you ask/tell
him/her to do something
Peculiar Patterns of Speech

repeats what people say to him/her over and
over again
Nonverbal Communication Difficulties

ignores you when you call his/her name,
ignores you when you try to show him/her
something, does not bring things over to show
you, does not use facial expressions to
communicate 1 2 3 1 2 3
Do you feel you are good at understanding or figuring out what your brother/sister wants or is trying
to tell you?
1 2 3
not at all somewhat a lot
Comments for Communication area:
140
Social and Play Difficulties

rather play by him/herself than with you;
does not have any imagination or play pretend
games 1 2 3 1 2 3
Lack of Social Reciprocity

does not come over and hug/kiss you; does
not come over and see if you are O.K. when you
are hurt; not affectionate to others 1 2 3 1 2 3
Do you feel you are good at getting your brother/sister to play games with you or do things together
(e.g., go to the park, walk to the store)?
1 2 3
Comments for Social area:
Preoccupation with Routine

likes everything to stay the same and gets
upset/mad when something is changed
(e.g., has to walk the same way to get to the park;
gets upset if furniture is moved in his/her room) 1 2 3 1 2 3
Repetitive or Unusual Use of Objects

e.g., spins wheels on toys; puts toys in a
straight line; turns light switch on and off;
does not play with toys the right way 1 2 3 1 2 3
Preoccupied by Particular Interests

something your brother/sister talks about
over & over again (e.g., trains), thinks about all
of the time, does all the time, is obsessed by certain
things and cannot get his/her mind off of it 1 2 3 1 2 3
Do you think you are good at getting your brother/sister to stop doing things over and over again and
teaching them to try new things (e.g., playing new games, using toys in different ways)?
1 2 3
Comments for Repetitive area:
Repetitive Movements with Body
does things like rocking back and forth,
clapping or flapping hands 1 2 3 1 2
Inappropriate Social Etiquette

does weird things in front of people
(e.g., school, the mall) such as running over
and hugging them; takes off his/her clothes
when you are out somewhere (e.g., store)
Sensory Preoccupation
does weird things like smelling objects,
licking toys; does not like to be touched; rubs
things over skin; covers ears with hands
Do you think you are good at stopping your brother/sister from doing those weird and/or
embarrassing behaviours?
1 2 3
Comments for Unusual Behaviour area:
Self-Injury
hurts him/herself (e.g., biting or punching
him/herself; banging his/her head) 1 2 3 1 2
Aggression Towards Others

hurts you, your parents, or other people
by biting, pinching, hitting, and/or kicking 1 2 3 1 2
Temper Tantrums
has temper tantrums, screams, throws
things, flails on the floor when he/she does not
want to do something or does not get his/her
own way 1 2 3 1 2
Damages Property
destroys your stuff (e.g., breaks your toys,
rips your books, messes up your room) 1 2 3 1 2
142
Do you feel you are good at comforting your brother/sister when he/she is upset and helping him/her
calm down?
1 2 3
Comments for Aggressive Behaviour area:
Are you good at helping your brother/sister learn to do new things (e.g., zip coat, tie shoes, set table,
order at a restaurant)?
1 2 3
Do you help out your parents by doing extra chores at home and taking care or your brother/sister
with autism/PDD-NOS?
1 2 3
Do you think having a brother/sister like _ _ _ _ _ _ _ makes you want to help other children and
adults
that have special needs?
1 2 3
Do you participate in any programs/activities at school/church, etc. where you help other people (e.g.,
reading buddy to a slow reader)?
1 2 3
Comments:
What would you like to be when you are older?
Is there anything else that you would like to tell me about your brother/sister?
Appendix E
Parent Information and Consent / Assent Forms
143
144
YORKil
OHI Vf t t T l w A
redefine the POSSIBLE
. y mi f ' l ' i s t f f H B h b :
Families of Children with Autism Study

Information Letter
Dear Parents,
We are writing to invite you to participate in a research study we are doing through the Clinical-
Developmental Psychology Program at York University, under the supervision of Dr. Adrienne Perry.
In her capacity as a full-time professor at York University and an adjunct professor at the University
of Toronto, Dr. Perry will be supervising two doctoral dissertations which are part of this study.
Terry Diamond is a doctoral student at York University and Tara Smith is a doctoral student at the
University of Toronto (OISE/UT). This research has been reviewed and approved by the York
University Human Participants Review Committee and any questions in this regard may be addressed
to Alison Collins, Manager of Research Ethics at (416) 736-5914. This letter will describe the study
and let you know how you and your family can participate.
Purpose of the study:
The study is about families of children with autism. Clearly, families of children with autism have
challenges to cope with which are greater than or different from most other families. We believe
most families cope amazingly well most of the time. Yet some families do experience significant
difficulties, most experience ups and downs, and many learn and benefit from the experience in
certain ways. This applies to whole families, but also to individuals within a family (mothers, fathers,
brothers, sisters), who may have very different experiences of the impact of the child with autism and
for whom different coping strategies and supports are helpful. The purpose of this study is to
understand why there are such differences in the impact a child with autism has on their parents and
siblings and to identify personal and family characteristics and resources that make a positive
difference for parents and siblings.
Description of the research:
This study involves parents and siblings of children with autism. Ideally, we would like the mother,
father, and one sibling (aged 7 - 1 4 years) within a family to participate, but we will gladly accept
any combination of family members who are available and willing, including single-parent families
or families with no siblings. If there is more than one sibling, we would like the one who is closest in
age to the child with autism (and within four years of their age).
There are various components to this study:
Once the enclosed consent form is received, we will phone you to see if you have any
questions, gather some preliminary information, determine which family members are willing
to participate, and schedule an appointment at your convenience.
Each parent/guardian will be asked to complete several questionnaires regarding your coping
strategies, mood, stressors, and supports. The primary caregiver will also be asked to provide
some general family information and complete some questionnaires about the siblings
behaviour. Some of these questionnaires will be mailed to you and will take up to 2 hours to
complete.
145
Members of the research team will then meet with your family (each parent and sibling), for
about 2 hours, at your home or at York University, at a time which is convenient for you
(including evenings and weekends). During this visit, each parent will be interviewed
separately, which will take approximately 1 hour, during which time the other parent will be
completing some additional questionnaires.
At the same time, another research team member will meet with the participating sibling. She
will first describe the study and see whether the child agrees to participate. If so, a brief
psychological screener will be conducted as well as some questionnaires and an interview
dealing with their perception of their brother/sister with autism, their feelings about
themselves, their family, friends, and so on. Breaks may be taken as needed and your child
can stop the activities at any time.
With your permission, we will contact your childs (sibling) teacher to request that he/she
complete two brief questionnaires about the siblings behaviour at school. If you are not
comfortable with this or the teacher declines to participate, you may still be in the study,
however.
The child with autism will not be directly involved in the study. However, we would like to
access some information from his/her clinical file at the agency through which we contacted
you (specifically diagnosis, cognitive and adaptive level). If necessary, we will also arrange
to have a research team member stay with the child with autism, while you are participating
in the research appointment.
Your family will be contacted again in approximately one year to see whether you are
interested in continuing your participation. You will be free to accept or decline at that time.
Potential risks and benefits:
We dont anticipate any significant risks associated with participation in this research study.
However, you and your child (sibling) may feel some emotional discomfort when thinking about
some of the issues related to having a child with autism in the family. If there are any strong
emotional reactions, we will refer you or your child to appropriate supportive services.
There are several potential benefits. You will be helping out with research on families of
children with autism, which will help us all understand more about parents and siblings,
and will enable professionals, ultimately, to provide better services to families. You may
also find the questionnaires interesting and thought-provoking for your own personal
development. Finally, as noted above, the participating sibling will receive a brief
psychological screening assessment. You will be provided with a brief report
summarizing the findings, and if he/she is found to exhibit any learning problems or
social-emotional difficulties, we will assist you in obtaining a full psychological
assessment or appropriate intervention for him/her.
Privacy, confidentiality, and storage of information:
We will maintain your privacy and confidentiality throughout the study and afterwards, within
legal and ethical limits. Exceptions to this principle include reports of child abuse or significant
risk of harm to self or another, which would require us to break confidentiality. Otherwise,
specific information about yourself and your child will only be seen by those directly involved in
the research, under Dr. Perrys supervision. All information will be stored securely at York
University. When presenting or publishing the results of this research, we will never use your
name or identifying information without your express written permission.
146
Reimbursement:
Following the interview, you will be provided with $50 and the participating sibling will receive a
small gift (approximately a $5 value). If you come to York University for your appointment,
parking expenses will also be covered. The siblings teacher will receive a token thank you gift,
as well ($5 value).
Consent:
I have read and understand the description of the research procedures in the enclosed letter and
have been given the opportunity to get additional information. I understand that I have a right not
to participate in this study, the right to complete certain parts and not others, and the right to
withdraw at any time without penalty and without compromising the services I am currently
receiving. As well, the potential risks and benefits are clear to me, including the possibility that
some of the questions may cause some emotional discomfort for parents and/or siblings. I have
been assured that all information collected as part of this study will be kept confidential, except as
required by law (such as child abuse or other serious situations which must be reported) or in the
case of significant concerns about my child (sibling) who participates (such as learning disorders
or emotional/behavioural problems). Otherwise, specific information about myself and my
participating son/daughter (sibling) will only be seen by those directly involved in the research. I
also understand that when results are shared in papers or presentations, information that could
identify my family will not be included.
This consent is valid for 1 year from the date of signing.
I hereby consent to participate as the MOTHER

I hereby consent to participate as the FATHER
I hereby consent as the guardian or caregiver of the child (otherthan father or mother)
I hereby consent to have my son/daughter,___________ (name of SIBLING) participate
in the study (if they are willing)
I hereby consent to my childs (sibling) classroom TEACHER being contacted (please have
name & address of teacher at your appointment)
I agree to be contacted again in 1 year (I can agree or disagree to participate then)
I would like to receive a summary of the results of the study
Signature of MOTHER or guardian Name (please print)
Signature of FATHER or guardian Name (please print)
Date ______________________ Phone# _____
Address
___________________________ Date
Research Team Member
147
YORK 11 re d e f in e th e POSSIBLE.
Sibling Information and Assent Form

Why are we doing this study?

We would like to learn more about how having a brother or sister with autism or PDD affects
your feelings, thoughts, and behaviours, and how supported you feel from others (parents,
teachers, classmates, and friends). This information can help us know how to do a better job
helping you, your parents, and other families of children with autism.
What will happen during the study?

If you agree to participate, you will be asked to meet with a member of our research team at
the same time your parents are meeting with another research team member. We may come
to your home or you and your parents may come to York University. During this visit, you
will be asked to do some activities with one of us, some that may be different than you have
ever done before and some which are like school. We will also ask you to answer some
questions about yourself, your parents, and friends. You dont have to answer every single
question; if a certain question bothers you, you can skip it. The entire visit will take about 2
hours, but we can take a break any time you need to. One of your parents and your teacher
will also answer some questions about your feelings and behaviours at home and school.
Are there good and bad things about the study?

Many children like doing the activities and we think that they might help you and your
parents understand how you learn best and how you feel. You may find some of these
activities easy, and others hard. Your participation in the study may also help other children
that have a brother or sister with autism because we will leam how to better support families
o f children with autism. We do not think that there are any bad things about the study, but
some of the questions about your feelings may bother you.
Who will know about what I said or did in the study?

If you are part of the study, your name and address will not be given to anyone. Only the
people who are members of the research team will know what you did in the study. We
wont tell anyone what you say during your visit, except for something very serious (for
example, learning or emotional problems, which we would talk to your parents about so they
can get help for you) or when the law requires it (for example, child abuse, which we have to
report to the authorities). Except for those kinds of things, we wont tell anyone what you
said.
148
Do I receive anything for being in the study?

After your visit with one of us, you will be given a small gift.
Can I decide if I want to be in the study?

You can decide if you want to be in the study or not. It is O.K. if you do not want to be part
of the study. Its also O.K. if you say yes now, but change your mind later. We will not be
upset or angry with you, and it will not make any difference to the help your family gets from
other people. Your parents have also read some information about this study and may have
talked to you about it already. Please ask us any questions that you may have at any time.
This assent is valid for 1 year from the date of signing.
Assent:
I was present w hen___________________________________ read this form (or had it read to

him/her) and gave his/her verbal assent.
Person who obtained assent
Signature
Date
149
YORK IL r e d e f i n e t u t POSSIBLE
Sibling Information and Consent Form


We would like to learn more about how having a brother or sister with autism or PDD affects
your feelings, thoughts, and behaviours, and how supported you feel from others (parents,
teachers, classmates, and friends). This information can help us know how to provide better
services to you, your parents, and other families of children with autism.

If you agree to participate, you will be asked to meet with a member o f our research team at
the same time your parents are meeting with another research team member. We may come
to your home or you and your parents may come to York University. During this visit, you
will be asked to do some activities with one of us, some that may be different than you have
ever done before and some which are like school. We will also ask you to answer some
questions about yourself, your parents, and friends. You dont have to answer every single
question; if a certain question bothers you, you can skip it. The entire visit will take about 2
hours, but we can take a break any time you need to. One of your parents and your teacher
will also answer some questions about your feelings and behaviours at home and school.
You and your parents will be called again in one year to see if you would like to do some o f
the activities just described again. You can say yes or no at that time.
Are there good and bad things about the study?

Many children like doing the activities and we think that they might help you and your
parents understand how you learn best and how you feel. You may find some of these
activities easy, and others hard. Your participation in the study may also help other children
that have a brother or sister with autism because we will learn how to better support families
of children with autism. We do not think that there are any bad things about the study, but
you may find some of the questions about you feelings may bother you.
Who will know about what I said or did in the study?

If you are part o f the study, your name and address will not be given to anyone. Only the
people who are members o f the research team will know what you did in the study. We
wont tell anyone what you say during your visit, except for something very serious (for
example, learning or emotional problems, which we would talk to your parents about so they
can get help for you) or when the law requires it (for example, child abuse, which we have to
report to the authorities). Except for those kinds of things, we wont tell anyone what you
said.
150
Do I receive anything for being in the study?

After your visit with one o f us, you will be given a small gift.
Can I decide if I want to be in the study?

You can decide if you want to be in the study or not. It is O.K. if you do not want to be part
of the study. Its also O.K. if you say yes now, but change your mind later. We will not be
upset or angry with you, and it will not make any difference to the help your family gets from
other people. Your parents have also read some information about this study and may have
talked to you about it already. Please ask us any questions that you may have at any time.
Consent:
The research study has been explained to me and all my questions have been answered. I
understand that I can decide not to be in the study and that I can say yes now but change my
mind later, and this will not make any difference to the help my family gets from others. The
good and bad things about the study have been explained to me, including the fact that some
of the questions may cause me some emotional discomfort.
I know that I can continue to ask any questions that I might have about the study. I have
been told that all information collected in the study will be confidential, except for something
very serious or required by law. Otherwise, information about me will only be seen by the
research team members.
This consent is valid for 1 year from the date of signing.
Name of Sibling
Signature o f Sibling Signing Date
Research Team Member
Signature Signing Date
Appendix F
Study Flyer
151
152
Who are we?

This research study is being carried out by Dr. Adrienne Perry, a full-time professor at York
University, in collaboration with two Ph.D. students (Terry Diamond and Tara Smith) for their
doctoral dissertations.

Families which include a child with autism have challenges to cope with which are greater than or
different from most other families. We would like to understand why there are differences in the
impact a child with autism has on their parents and siblings (brothers and sisters). We would also like
to identify personal and family characteristics and resources that make a difference for parents and
siblings, and how this changes over time.
Who can participate in this study?

This study involves parents and siblings (aged 7-14 years) of children with autism/PDD-NOS.
Ideally, we would like mothers, fathers, and one brother/sister within a family to participate in the
study, but we will gladly accept any combination of willing family members.

Each parent will be asked to complete several questionnaires and will be interviewed by a research
team member. The participating sibling will complete a brief psychological assessment and some
paper and pencil tasks with another research team member. The child with autism will not be directly
involved in this study, however we will arrange to have a research team member sit with him/her
while the other family members are engaged with the research team. Following the interview, parents
will be provided with $50.00 and the participating sibling will receive a gift of approximately a $5.00
value.
What are the benefits of participating in this study?

You will be helping out with research on families of children with autism. This helps us to
understand more about parents and siblings and will enable professionals to better support families of
children with autism. The participating sibling will receive a brief psychological screener examining
his/her cognitive and academic functioning. Parents will receive a brief report summarizing the
siblings cognitive, academic, social, emotional, and behavioural functioning.
Contact Information: Please call the project office at 416-736-5115, extension 33757 for further
information and/or to obtain a consent form.
This research study has been approved by the Ethical Review Committee at York University, Toronto, ON
Appendix G
Sibling Inclusion Criteria Form
153
154
ID#.
SIBLING INFORMATION FOR FILE
1. Siblings A ge:____________
2. Years apart from child with autism:_____________
3. Does the sibling have a diagnosis? Y /N
IF YES: W hat?_________________________
4. Has he/she had any previous assessments? Y /N
IF YES: W hen?________________ _ _______
W hy?___________________________
5. Has he/she ever participated in any type of therapy? If yes, when?
CD None
Individual Counseling
Group Therapy (e.g., Sibling Support Group, Anger Management)
Please Specify____________________________
D Family Therapy
Other __________ __________
Appendix H
Release Form and Teacher Consent Form
155
156
Y O R R il r e d e f in e th c POSSIBLE.
CONSENT TO THE DISCLOSURE, TRANSMITTAL

OR EXAMINATION OF A CLINICAL RECORD
I/We
name of signature(s)
of
address
hereby consent to the disclosure or transmittal to or the examination by
The Families o f Children with Autism Study. Dr. Adrienne Perry

name
of the following information (specify)
Two questionnaires to be completed by the classroom teacher:
The Teacher Report Form and The Social Competence Inventory
from the record of:

name of school
compiled in respect of: __ _________ _____________________

name of participant
date of birth
for the purpose of: Research Study

specify
This authorization is effective until 0 6 / 3 0 / 0 4
witness signature
if other than participant, state relationship date
This consent may be rescinded or amended in writing at any time prior to the expiration date, except where
action has already been taken on the authority o f the consent.
157
YORKt jt I I
t(f Y
t
IL:re d e fin e :fM i POSSIBLE
Letter of Information for Teachers

Dear Teacher,
The family o f_________________________ is participating in a research study about

families of children with autism and has given us permission to contact you and ask you to
provide some important information from the teacher's perspective (see enclosed Release of
Information Form). The study is being conducted through the Clinical-Developmental
Psychology Program at York University, under the supervision of Dr. Adrienne Perry. In her
capacity as adjunct professor at the University of Toronto, Dr. Perry will be supervising my
doctoral dissertation, which is part of this study. I am a graduate student at the Ontario
Institute for Studies in Education of the University of Toronto. The purpose of my study is to
understand the impact a child with autism has on his or her siblings, and to identify personal
and family characteristics and resources that make a difference for siblings. Ultimately, this
information will enable professionals and agencies to better support these families.
We are asking that you complete two questionnaires about_________________________.

The first questionnaire is the Teacher Report Form (TRF), a measure that examines the
child's social and behavioural functioning. The second questionnaire is the Social
Competence Inventory, a questionnaire that measures a range of social competence
characteristics, such as prosocial behaviour. Please find enclosed copies of the two
questionnaires for your completion if you agree to participate. It is estimated that each
questionnaire will take 15 minutes to complete. Your participation is very important, as it
will help us to understand the child's functioning in the school environment. The parents and
children will also be completing questionnaires and interviews.
The parents will receive a brief report summarizing the findings regarding the childs
academic, social- emotional, and behavioural functioning, based in part on the information
you provide, and possibly referrals for additional assessment or intervention will be provided,
if needed. Otherwise, the information collected in this research study will be kept strictly
confidential within legal and ethical limits. Specific information about individuals and
institutions will only be seen by those directly involved with this research. All information
will be stored safely at York University in locked filing cabinets. When presenting the results
of this research, we will never use identifying information without express written
permission.
There are no particular risks for you to participating in the study (other than the time
involved) and you will be benefiting this family and this study by agreeing to participate.
However, your participation is completely voluntary and if you prefer not to, it will not
exclude the family from the study.
158
If you do choose to participate, please complete the bottom portion of this form and mail it
along with the completed questionnaires in the stamped, self-addressed envelope that has
been provided. You will receive a $5.00 gift certificate from Tim Hortons upon receipt of
your completed questionnaires.
If you have any questions about the study, please feel free to contact us at 416-736-2100 (ext,
33757).
Thank you for considering this request.
Sincerely,
Tara Smith, M.A. Adrienne Perry, Ph.D., C. Psych.

Doctoral Candidate Psychologist and Assistant Professor
OISE/UT York University
Consent/Reply Form:
I have read and understand the information provided above. I understand that the family of
____________________ has authorized me to provide this information for a research
study. I understand that feedback will be provided to the family, based partly on the
information I provide, regarding the child's academic, social-emotional, and behavioural
functioning. I am under no obligation to participate in this study.
I agree to participate in the Families of Children with Autism Study. I have enclosed the
completed form and questionnaires.
Signature o f Teacher Signing Date
Name of Teacher (please print)
Reproduced with permission o f the copyright owner. Further reproduction prohibited without permission.

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Siblings of Children With Autism

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SIBLINGS OF CHILDREN WITH AUTISM; AN INVESTIGATION OF SIBLING AND

PARENT CHARACTERISTICS CONTRIBUTING TO POSITIVE AND NEGATIVE

Tara Leigh Smith

A thesis submitted in conformity with the requirements

Copyright by Tara Leigh Smith 2006

Published Heritage Direction du

395 W ellington Street 395, rue W ellington

Your file Votre reference

The author retains copyright L'auteur conserve la propriete du droit d'auteur

In compliance with the Canadian Conformement a la loi canadienne

While these forms may be included Bien que ces formulaires

Doctor of Philosophy, 2006

Tara Leigh Smith

Department of Human Development and Applied Psychology

general population and developmental disability field. Furthermore, factors believed to be

demonstrating more prosocial behaviours. Participants included 72 siblings of children with

the majority of siblings in the present study appeared to be well-adjusted. A minority of

siblings were demonstrating substantial internalizing and/or externalizing behaviour

higher levels of academic achievement, only siblings global self-worth emerged as a

your invaluable feedback on this dissertation. I am also very grateful to my committee

your supportive and thoughtful comments regarding this dissertation.

Several colleagues are also deserving of acknowledgement, as this dissertation may

families on your weekends.

in my ability to complete my graduate studies. To my group of friends known as the Thesis

process a bit easier and enjoyable.

as well as their openness and honesty.

encouraged me to pursue my goals and have taken pride in my accomplishments. This

my academic and professional accomplishments are as much yours as mine.

Table of Contents ................................................................................................................. vii

List of Tables......................................................................................................... xii

List of Appendices ................................................................... xiv

Characteristics o f Autistic Disorder................ 2

Autism and the Family System ...................... 4

The Effects of a Child with Autism on Parents ................................... 4

Challenges for Siblings of Children with A utism ............... 6

Psychosocial Adjustment o f Siblings of Children with A utism ............................. 8

Methodological Differences and Limitations............................................. 11

Variability in Siblings Psychosocial Adjustment...................................... 13

Factors Affecting Psychosocial Adjustment .............................................. 14

Perceived Social Support................................................................. 20

Perceived Social Support as a M oderator........................................ 24

Siblings Perception of Severity of Disability................................. 24

Parent Advocacy ......................................... 26

Prosocial Behaviour........................................................ ........... 30

Factors Affecting Prosocial Behaviour.................................... 32

Gender and A g e ............................................................. 32

Self-Concept .......................................... ............. 34

Perceived Social Support ............................................. 35

Parent Advocacy ................................................. 36

Siblings Perceptions of Parents Empathic Behaviour 38

Siblings Perception o f Competence............................ 38

Aims o f the Current Study...................................................................... 40

Research Questions and Hypotheses .......................................... 41

Research Question 1 ................................................................... 41

Research Question 2 ................................................................... 41

Research Question 3 ........... ................ ..................................... 42

Research Question 4 ................................................................... 42

Research Question 5 ................................................................... 42

Research Question 6 ................................................................... 42

M ethod............... ..................................... ............................................................ 44

The Family Information Schedule................................ 47

Achenbach Child Behavior Checklist............................................. 48

Teacher Report F orm ................ 49

Social Competence Inventory................ 50