Perception and Felt Needs of Parents of Children with Autism

A thesis presented to the

Institute of Educational Development, BRAC University

Presented by:
Sanjana Jahangir
j.sanjana103@gmail.com

National Supervisor
Syeda Sazia Zaman
Senior Research Fellow
Institute of Educational Development
BRAC University,
Dhaka, Bangladesh

International Supervisor
Dr. Pratibha Singhi
Chief Pediatric Neurology and Neurodevelopment
Post Graduate Institute of Medical Education and Research
Chandigarh, India

In partial fulfillment of the requirements for the degree of

MASTER OF CHILD DEVELOPMENT

September 2013
 Ethical Approval Form

Date: ____________________

Student name: Sanjana Jahangir

Title of Thesis Topic: Perception and Felt Needs of Parents of Children with Autism

1. Source of population

2. Does the study involve (yes or no)

1. Physical risk to the subjects
2. Social risk
3. Psychological risk to subjects
4. Discomfort to subjects
5. Invasion of privacy

3. Will subjects be clearly informed about (yes or no)

1. Nature and purpose of the study
2. Procedures to be followed
3. Physical risk
4. Sensitive questions
5. Benefits to be derived
6. Right to refuse to participate or to withdraw from the study
7. Confidential handling of data
8. Compensation and/or treatment where there are risks or privacy is involved

4. Will Signed verbal consent form be required (yes or no)

1. From study participants

2. From parents or guardian
3. Will precautions be taken to protect anonymity of subjects

5. Check documents being submitted herewith to Committee:

1. Proposal
2. Consent Form
3. Questionnaire or interview schedule

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 ETHICAL REVIEW COMMITTEE

Research Authorization

Title: Perception and Felt Needs of Parents of Children with Autism

The Research Checklist indicates:

 Approved without amendments

 Approved with advice to research
 Not Approved. Resubmission is required

Authorized by:

Name:

Position in Ethical Review Committee: chair/co-chair/other

Signature:

Date:

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Approval from the Thesis Committee:

THESIS APPROVAL FORM

Name of the Student: SANJANA JAHANGIR

Expected Date of Graduation:

Thesis Topic: Perception and Felt Needs of Parents of Children with Autism

Examiner’s comments:

Date of Thesis Submission to the Committee:

 Excellent

 Good

 Satisfactory

 Fail

Thesis Committee Signature: ________________________________________

iv
 Approval from the supervisor

In my judgment the thesis and the candidate meet recognized scholarly standards for the degree
and is therefore ready to submit his/her thesis to the Thesis Committee.

________________________________
Signature of the Supervisor

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Date:

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v
Dedication

This thesis is dedicated to those very special people, the parents of children with
autism who shared their life events, their inner most feelings, their living with
autism to enrich the thesis. Without their support this journey would be incomplete.

vi
Acknowledgements
I owe my deepest gratitude to Dr. Pratibha Singhi (Chief Pediatric Neurology and
Neurodevelopment, Post Graduate Institute of Medical Education & Research, Chandigarh, India)
and Ms. Syeda Sazia Zaman (Senior Research Fellow, IED, BRAC University), both my
international and national thesis supervisors. Their continued guidance inspired me deeply to
explore and shape up this precious work. Very special thanks to Ms. Sazia Zaman for her constant
remarks, feedback and engagement throughout this learning process.

It is with immense gratitude that I acknowledge the support of Naila Zaman Khan (Professor,
Dept. of Pediatric Neuro Sciences, BICH, DCH), Dr. Shameem Ferdous (Executive Director,
BPF) and Dr. Shaheen Akhter (Director, CNAC) for allowing me the opportunity to work in their
organizations. I owe to Ms. Ferdausi Mowla & Ms. Romela Murshed from BPF, Dr. Farzana
Islam & Ms. Monowara Parveen Jahangiri from DCH and Ms. Momtaz Begum from CNAC for
their support during data collection in introducing parents at their institutes.

I am indebted to Ms. Nishat F. Rahman (Assistant Professor) and Ms. Ferdousi Khanom
(Lecturer-III) of IED, BRAC University for their cooperation in validation of my research tool. I
thank all IED faculty members for their suggestion and cooperation. Thanks to my friend Ms.
Nazneen Akhter (MSc in ECD), with whom I have spent hours discussing different research ideas.

It is really difficult to find words to express my gratitude to the parents who shared their views
and experiences for the study about a very sensitive issue while sacrificing their valuable time.
Without their support and contribution, this study would not have been possible.

I acknowledge my heartfelt thanks to my parents for their continued encouragement in my study

and work throughout my life. This thesis would have remained a dream had it not my husband and
my daughters sacrificed their part and cooperated me to complete this study. Thanks to my family
members and friends for supporting me all the way, both by keeping me harmonious and helping
me putting pieces together. It was such a meaningful journey with all who supported.

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Executive Summary

Autism is a lifelong disorder that causes severe problems with communication, social
relationships and behavior. Parents of children with autism (CWA) go through a great deal of
stress and difficulties in their day-to-day lives while raising a CWA. Gray (1993) explored
parents’ difficulties in coping with public behavior with their autistic children.
The prevalence of autism is increasing around the world. However, knowledge, awareness,
acceptance and support to deal with the issue still pose a great deal of concern.

The Center for Disease Control and Prevention in the US reported a 57% increase in the
prevalence of childhood autism as compared to the estimate of 1 in 500 just a decade ago and they
termed it as matter of urgent public concern (Shapley, 2010). In Bangladesh, a recent official
estimate shows that the number of autistic children is more than 150,000 (Ethirajan, 2011). As a
developing nation, Bangladesh is committed to adequate and equal opportunities for individuals
with autism to help them achieve their highest developmental potential and to ensure their
participation in the society. In Bangladesh, very few research studies have been done on autism so
far. These studies mostly focused educational setting for autism and covered teachers’ perception
and challenges regarding autism. In this scenario, this study emphasizes to learn about perception
and felt needs of parents of CWA.

The main objective of the present study is to explore the perceptions and to find the felt needs of
parents of CWA. With an assumption that parents of CWA face difficulties in social context, in
health and educational setting during different stages of the child’s life, the specific objectives set
for the study are, exploring the experiences of the parents of CWA during different stages of their
child’s life; shedding light on the situation that parents of CWA face in the family and in the
social context; revealing the challenges faced by parents during schooling of their child; and
finally finding out the felt needs of parents and their expectations from the community,
educational settings, and from the Government.

McKellar (1968) described ‘perception’ as a learning process; perceptions come out from the
experiences we sense and the knowledge acquired from experiences shared by others. The
viii
perceived knowledge after completion of the learning process shapes our behavior and forms our
expectations (as cited in Akhter, 2012, p. 24). According to Onyenemezu & Olumati (2013), felt
needs means that emotional feeling for a need for some change in order for the betterment of
people.

Literature suggests that, “Children with ASD have a constellation of deficits and excesses in their
behavior. Caring for a child with ASD can be challenging and extremely demanding in many
aspects” (Twoy, Connolly & Novak, 2007, p. 252). In social setting, parents of CWA become
isolated; even the most extroverted parents feel discomfort in attending social gatherings due to
unpredictable behavior of the CWA (Solomon & Chung, 2012).

According to American Psychiatric Association (1994), the difficulties of individuals with ASD in
reciprocal social interaction, verbal and nonverbal communication, and stereotyped and repetitive
behaviors pose challenges to teachers in general education classrooms (as cited in Starr, Foy,
Cramer & Singh, 2006, p. 316).With regard to the perception of parents on education of the CWA,
Starr, Foy, Cramer & Singh (2006) explained that parents of disabled children are the best
advocates for their children as they know their children’s strengths, weaknesses and needs better
than anyone else.

Methodology
Population of the study included parents of children already diagnosed with autism by using
standard DSM-IV criteria. Among eight sample participants 6 mothers and 2 fathers were
interviewed. Few organizations like CNAC, SBK, BPF were the main source for selecting
samples, where the diagnosis of autism is made according to DSM criteria and using standardized
scales (like ADOS).
In order to fulfill the objective of the study and to answer the questions raised, the study followed
a qualitative research method. A semi structured interview questionnaire with open-ended
questions was developed for in-depth interview. A homogenous purposive sampling was done to
select the parents of children with autism where the child’s age was between 2 years and 8 years.
The face validity of the instrument was checked with help of expert opinion. The reliability of the
measures was ensured by pilot testing of the in-depth interview questionnaire.
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For data analysis an idiographic approach, beginning with analyzing individual transcripts and
then moving on to analysis across participants, was used. The data were coded by highlighting
text and making marginal annotations that comprise paraphrased data. Coded data were analyzed
for themes, sub-themes and a common ground of discussion.

Key summary findings

Experiences faced by parents in different stages of the child’s life
Lack of autism awareness was a common feature. Only few of the respondents who had better
education and exposure had basic ideas about autism before it was detected in their child. After
detection of autism, some parents were still confused about the concept of autism and the child’s
management.

Most of the parents did not complain about the process of diagnosis; but some of them felt
confused even after diagnosis. Complaints were made by parents living in semi urban areas and by
a parent who found contradiction among doctors during diagnosis. Autism caused parents to
migrate to urban areas which in turn increased their cost of living.

Coping was difficult for parents of children with autism, but mutual support between parents and
expert support were of great help to cope with the reality. Almost all the respondents regardless of
their gender or educational background got emotional while answering about their feelings right
after the diagnosis. There were parents who reported difficulties in coping due to financial
support, family support and constant tension for the child’s future.

It was seen that mothers were more involved with the children with autism than that of fathers and
they showed tremendous strength in accepting the reality and putting effort in managing the
CWA. Few fathers took the responsibility of planning guidelines for the CWA. It was also seen
that, a mother with higher education and a good job left her job after knowing that her child has
autism. Performance of working parents in managing time for autistic children varied between
doing activities with the child after coming home to just lying down and waiting for the child to
respond.
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Financial pressure in the management of a child with autism was mentioned by parents from every
income group. It was also seen that lack of financial support made parents less interested to learn
about autism, they felt less motivated. Child’s level of autism is also a point to consider; if the
child has mild autism, parents feel motivated to put effort and spend money for the development
of the autistic children.

Situations faced by parents in family and social context

In family context, support from spouse was seen an extremely important issue for parents of
children with autism. Although mothers are mainly responsible for the management of the autistic
child they expressed the need for both emotional and practical support from their spouses.
Siblings’ support was hardly seen; the adults had to play an important role to encourage other
children of the family to play and interact with children with autism.

Although most of the parents of autistic children reported having relatives sympathetic to their
situation, some parents did not inform their relatives about child’s autism as the relatives would
not understand it. Parents of children with autism mostly avoided neighbors to remain out of
undesirable circumstances. As people around them are not well aware about autism, they do not
feel comfort in disclosing the truth to others.

Challenges faced during schooling of the CWA

There is a difficulty in enrolling autistic children in regular schools which made all the participant
parents of school going CWA sending their children to special schools although they were advised
by the doctors to send the CWA to regular schools. At special schools, parents were mostly
satisfied as they thought that their CWA were being taught by trained teachers. Challenges faced
at regular schools were mainly due to lack of knowledge and training of the school teachers and
school authority on autism. Obstacles also came from parents of normally developing children.

Felt needs of parents of CWA

At the family level, parents of CWA expressed the need for a mutual support from spouse; both
parents required emotional and practical support from each other to make the journey easier with a
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CWA. In order to cope right after knowing child’s autism, support from the family, relatives and
experts in the field of autism is required. The participants expected the society to be
compassionate towards CWA. They expressed that the society should provide their safety, raise
social awareness about autism and campaign on positive behavior towards autistic people.

Regarding schooling of the children with autism, parents felt the need for an appropriate school in
the vicinity. There was a felt need that the regular schools should provide a positive environment
for autistic children. Parents of CWA felt a need for trained support, counseling and an effective
guidance about the strengths of their child.

As the management and schooling of an autistic child is expensive, parents felt the need for
Government intervention in health and education facilities for CWA throughout the country along
with regular counseling and home visits by trained personnel. Along with this, parents of CWA
mentioned the need for Government initiatives in widespread awareness raising programs for
autism too. Finally, the parents of autistic children have worries about the future of their autistic
child. They felt that Government should provide support for CWA in terms of vocational training,
appropriate job opportunity, security and a positive environment for living.

The study recommends, programs at Government and Non-Government level for raising
awareness about autism at family level, community level and for school authority; country-wide
easily available counseling support for parents of CWA on a regular basis; support centers for
parents of autistic children that would provide referral, advocacy support with relevance to
parents’ needs and collaboration among professionals; networking among parents of CWA. Policy
formulation requires ensuring enrollment of CWA in all schools, trained teachers and facilities for
CWA at schools, country-wide diagnostic and follow up centers for CWA. The study also
recommends further research with larger random sample and with different population groups for
a better representation and generalization of results.

In conclusion, facing the developmental challenges of long-term health care, education and
training to support autism, the policy formulation needs to be enriched by exploring and learning
from the perception, inner feelings and felt needs of parents of children with autism.
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 TABLE OF CONTENTS

Page

Acknowledgements..........................................................................................................viii
Executive Summary............................................................................................................ix
Table of Contents..............................................................................................................xiv
Glossary of Terms..............................................................................................................xv

Chapter 1: Introduction & Background........................................................................1

Introduction.....................................................................................1
Statement of the Problem.........................................................................2
Purpose of the study............................................................................5
Significance of the study.............................................................................6
Research Topic & Research Questions..........................................................................7

Chapter 2: Literature Review.................................................................................9

Literature Review.......................................................................9

Chapter 3: Methodology..............................................................................16
Research Participants................................................................................16
Research Site.................................................................................16
Research Approach..................................................................................17
Measures……………………………………………………………………………….18
Data Collection Methods................................................................................18
Sampling Procedure..............................................................................20
Data Analysis.................................................................................................................20
Ethical Issues & Concerns..........................................................21
Validity & Reliability..............................................................................22
Limitations of the Study..............................................................................22

Chapter 4: Findings & Discussion.......................................................................23

Findings.........................................................................23
Discussion.............................................................................43
Conclusion...............................................................................53
Recommendations...............................................................................54

References ..................................................................................55
Annex-1.............................................................................................................................60
Annex-2…………………………………………………………………………………..65

xiii
Glossary of Terms

ADOS Autism Diagnostic Observation Schedule

ASD Autism Spectrum Disorder
BPF Bangladesh Protibondhi Foundation
CDC Child Development Center
CNAC Centre for Neurodevelopment & Autism in Children
DCH Dhaka Children’s Hospital
DSM-IV Diagnostic and Statistical Manual of Mental Disorder, Fourth Edition
ECCD Early Childhood Care and Development
MOPME Ministry of Primary and Mass Education
SAAN South Asian Autism Network
SBK Shishu Bikash Kendro

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 Chapter 1
Introduction & Background

Introduction

“It was hot and we were all hot and I went over to the desk, to the counter, and ordered what I
wanted. And as I did, I sort of let go of Tessa, and she loves older people, and she saw these two
old ladies sitting drinking their tea and she made a dive to them and went straight over there and
the shop assistant says to me, ‘Do you mind taking your daughter away from those people. You
can see they are trying to drink their tea’ and he was really rude and arrogant” (Gray, 1993,
p.110). The above excerpt shows just one angle of the experiences the parents of autistic children
face in their everyday life with autism. This shows the embarrassment the mother experienced in a
public encounter while her daughter was trying to interact with others. These parents actually go
through a great deal of stress and difficulties in their day-to-day lives while raising a child with
autism (CWA). Many studies have confirmed that parents of CWA suffer from higher levels of
stress, anxiety and depression compared to parents of children with other disorders and with
parents of normally developing children (Pozo, Sarria, & Brioso, 2011).

Overall, the experience of each family with autistic child/children is unique. In Bangladesh,
having a CWA is generally considered a social barrier. Sometimes it is even seen as a curse;
parents, particularly working mothers are blamed (Autistic Children’s Welfare Foundation, 2011).
Fortunately, few families have their success stories as well. Despite having a CWA they can
manage successful psychological adaptation. The demands of living with a person with autism are
many and may cause considerable stress in the family.

Families also have their special needs when bringing up autistic children. Research on families of
CWA documented that factors influencing these families include severity of autism and
behavioral problems, social support, perception of problems and coping strategies with the
lifelong issue (Pozo et al., 2011). In addition, Gray (1993) explored parents’ difficulties in coping
with public behavior with their autistic children and found that most parents felt stigmatized by
their child’s behavior and mothers felt more stigmatized than fathers. Also the stigma was more
among those with severely affected children.

Parents are pivotal in the care of their children with ASD. Therefore, their perception and felt
needs require special attention when managing CWA. Parents’ every day experience with the
child, the situations they face in social context with an autistic child, challenges they face in
diagnosis, schooling and everywhere surely demand adequate attention while working for CWA.
Stoner (2005) stated that, when a child is diagnosed autistic, the immediate reaction of the parents
is to search for information and practical advice (as cited in Murphy & Tierney, 2005, p. 7). Lack
of such support puts them in terrible frustration; they feel less motivated to put effort it nurturing
their autistic child.

As a nation, facing the developmental challenges to long-term health care, education and training
to support autism, the policy formulation needs to be enriched by exploring and learning from the
perception, inner feelings and felt needs of parents of CWA. This study is expected to help gather
relevant information in this direction. The present study tried to explore perception and felt needs
of parents of children with autism, which in turn would provide information for working towards
development of autistic children.
This paper is composed in four chapters covering introduction and background, literature review,
methodology and findings and discussion of the research. In chapter 1, the following sections are
organized as statement of the problem, purpose of the study, significance of the study, research
topic and research questions.

Statement of the Problem

Children with autism are still struggling to get into proper and regular educational setting. Parents
of CWA face a great deal of challenges in raising their child. As the parents know their children
better than anyone else which is also true for parents of autistic children, it is important to explore
their experiences, perception, feelings and challenges in raising their children. Understanding and
addressing the felt needs of parents is essential to help their children develop and live as normal as
possible in society, with acceptance and positive influence. This will help ensure achievement of
2
the highest developmental potential by the children. It has been shown that parents’ demand
knowledgeable and supportive staff and teachers who are willing to make appropriate adaptations
in learning environment, so that children with exceptional abilities can achieve their highest
developmental potential (Starr, Foy, Cramer & Singh, 2006).

Globally, approximately 67 million people around the world are affected by autism, as reported
by Bob Wright, co-founder of Autism Speaks in 2010 (Akhter, 2012). The Center for Disease
Control and Prevention in the US reported a 57% increase in the prevalence of childhood autism
as compared to the estimate of 1 in 500 just a decade ago and they termed it as matter of urgent
public concern (Shapley, 2010). According to the Autism and Developmental Disabilities
Monitoring Network in 2012 most recent findings by the Center for Disease Control and
Prevention in the United States, approximately 1 in 88 children has ASD. It is also found that,
ASDs are almost 5 times more prevalent in boys (1 in 54) than in girls (1 in 252). Moreover,
ASDs are prevalent in all racial, ethnic and socioeconomic groups (Autism science foundation,
2012). Likewise, many Asian countries have also noted a significant rise in the number of children
with autism. According to the first comprehensive study of autism prevalence in South Korea, it
was observed that about 2.64 percent of school-aged children are affected by ASD which is
equivalent to 1 in 38 children (Yale News, 2011). In order to face the challenges of autism public
health crisis, a regional partnership, the South Asian Autism Network (SAAN) was formed in
early 2013 in New Delhi, India (Autism speaks, 2013).

In the context of Bangladesh, a recent official estimate shows that the number of autistic
children is more than 150,000 (Ethirajan, 2011). In addition, Child Development Center of Dhaka
Shishu Hospital Report (2007) showed that, there has been a 2 to 3 fold rise in behavior and
related neurodevelopment impairments, such as cognition and speech, from 1991-2000 to 2001-
2006 estimates. Similarly, The Dhaka Declaration on Autism Spectrum Disorders (ASD) and
Developmental Disabilities has also expressed concern regarding the high prevalence of autism in
all regions. Moreover, Bangladesh has also recognized the need of inclusion as a right of children
with disabilities. This recognition was followed by enrollment of 70,000 children with disability
in mainstream primary schools in 2007 (Annual report, MOPME, 2008). Bangladesh is a
signatory of Jomiten Declaration 1990, Salamanca Declaration 1994, Dakar Declaration 2000 and
3
UN Convention on Rights of the Child 1989 prioritizing those who were being excluded from
education. As a nation, Bangladesh is stepping forward to meet the issue of autism. The Dhaka
Declaration 2011 sets the vision towards adequate and equal opportunities for individuals with
autism and developmental disorders to achieve highest developmental potential and to participate
in society. ECCD Policy Framework - 2009 (draft) also states the common vision of inclusion.
Moreover, National Children Policy (2011) focused special program for autistic children in their
specific planning and undertaking programs.

In particular, several organizations in Bangladesh have started working in the field of autism, for
example, Child Development Center (CDC) or Shishu Bikash Kendro (SBK) of Dhaka Shishu
(Children) Hospital (DCH), Bangladesh Protibondhi Foundation (BPF), Centre for
Neurodevelopment & Autism in Children (CNAC). They are working to provide services for early
detection and intervention, disseminating disability/autism related knowledge and other essential
skills for doctors, teachers and parents. National media is supporting the notion with an awareness
program on national television, including an Autism Awareness Day.

It is being increasingly recognized that children with autism and their families face major
challenges associated with stigma, isolation and discrimination along with limited access to health
care and educational facilities. Parents feel awkwardness in social encounters, condescending
behavior, and even avoidance, and often excessive expressions of concern and sympathy. These
issues often lead the parents to isolate themselves and their families from social contact with the
outside world (Gray, 1993). However, Meral (2012) found that most families who have children
with developmental disorder reported having emotional support from relatives, friends and
neighbors, but they lack care support in terms of childcare support in daytime, night or weekends
and support in transportation primarily along with lack in other social support. He therefore
suggested that conducting research studies about care supports along with emotional support,
among families of children with developmental disorder would enhance the social support
perception of these families.
For educating children, a bidirectional relationship between educators and parents is important, in
which educators learn about the child and expectations of the parents from the parents and they

4
provide support for the family (Porter, 2002). Similar involvement of parents is required in policy
formulation for children with autism.

Purpose of the Study

The main aim of this study was to learn the perception and felt needs of parents of CWA. Their
perception is built with their everyday experience with the CWA in taking care of the child,
his/her difficulties or challenges, the diagnosis of autism, accepting autism in family, adjustment
with the disorder, facing the challenges in family and social context and also during schooling.

Therefore, the present study tried to focus on parents’ experiences; the obstacles and challenges
they face in family and society, at schools, at medical centers and elsewhere they approach and
visit with their CWA. Knowing their in depth feelings, their perception and what they felt needed
for proper development of the autistic children is important for further work in the area. The
present study therefore intended to shed light on parents’ perception as a whole while raising a
CWA and to learn their felt needs from family, society, schools and from the nation.

The statement of the problem already highlighted that, parents of children with autism face
difficulties in social context, in health and educational setting during different stages of the child’s
life. With this assumption thus, the specific objectives set for the study were,

 To explore the experiences of the parents of children with autism during different stages of
their child’s life

 To shed light on the situation that parents of children with autism face in the family and in
the social context

 To reveal the challenges faced by parents during schooling of their child

 To find out the felt needs of parents and their expectations from the community,
educational settings, and from the Government

5
Significance of the Study

The prevalence of autism is increasing around the world. However, knowledge, awareness,
acceptance and support to deal with the issue still pose a great deal of concern. Obviously, parents
are the primary stakeholders who face the struggles and challenges of raising the CWA in every
step of the child’s life. As discussed, in order to provide support to autistic children, it is essential
to identify the needs of parents and the difficulties faced by them when nurturing their children.
Simultaneously it is equally important to recognize the positive contribution of an autistic child to
family life, study family adaptation from a positive perspective, and to find factors that enhance
the psychological well-being of family life. Research in this area has just started and new research
work is required (Pozo et al., 2011).

As a developing nation, Bangladesh is committed to adequate and equal opportunities for

individuals with autism to help them achieve their highest developmental potential and to ensure
their participation in the society. However, very few research studies have been done on autism in
Bangladesh so far. These studies mostly covered teachers’ perception and challenges regarding
autism. A recent study by Majumdar (2011) on two oldest schools for autistic children of Dhaka
city focused on the views and perception of parents, teachers, school authorities, and staff from
every level in those schools. The study showed lack of awareness about autism, lack of quality
education and infrastructure, less motivated parents due to lack of knowledge and training
(Majumdar, 2011).

Another study by Akhter (2012) focused on teachers’ perception of autistic children at inclusive
schools. Both the studies revealed facts for children with autism mainly in the educational setting.
Some important points regarding parents’ perception on education of their CWA were also
discussed. The later study identified a gap in communication between parents and teachers. As
parents of children with autism feel that sometimes teachers are not responsive to their queries,
teachers on the other hand complained about the high expectation of parents and reluctance in
following guidelines provided to them (Akhter, 2012). Both studies mentioned the need for strong
teacher-parent-school collaboration, meaning parents’ involvement in their children’s education.
6
While these studies mainly focused parents’ perception on their children’s education, there is very
little information on the parents’ perception and needs as a whole.

As the parents play the most important role in the management of their child with autism, parents’
felt needs must come into light; their expectations from the community, from the school, from the
Government must be explored to help make it easier for them to face the challenges in every step
while raising their children with autism. Hence local research in Bangladesh is required to learn
about the perception and felt needs of parents who are facing the ground reality with their children
with autism.

Thus, the present study attempted to find out the in depth feelings, experiences and challenges as
well as the felt needs of parents of children with autism. It focused on very inner feelings of these
parents with regard to raising their children at every step starting from birth. This included
subjective issues like parents’ experience during diagnosis of autism, challenges in accepting the
reality, influence of other family members, relatives, and community, challenges regarding their
schooling and education. It also focused on their felt needs to meet the challenges to go ahead
with the children with autism as every other parent does with a child who does not have autism.

Research Topic & Research Questions

Research topic: Perception and felt needs of parents of children with autism.

Parents of autistic children go through various experiences and situations after the child with
autism comes to their life. These experiences are different from those of parents of normally
developing children or other disabled children. Autism being a lifelong disorder impairing
communication and social skills of a person definitely gives different experiences to parents.
Parents of CWA face severe stress in nurturing the autistic child, feel frustrated and less motivated
sometimes; their condition demands specific needs for parenting an autistic child. In order to
achieve highest developmental potential for children with autism, exploring the perception and
felt needs of parents of children with autism is essential.

7
Research Questions were set in accordance with the specific objectives of the study:
 What are the experiences of the parents of children with autism during different stages of
their child’s life?

 What are the unusual situations that the parents of children with autism are facing in their
family?

 What are the situations that the parents are facing in the social context while raising their
children with autism?

 What are the challenges faced by the parents during schooling of their children with
autism?

 What are the felt needs of the parents and their expectations from the community,
educational settings, and from the Government?

8
 Chapter 2
Literature Review

Literature Review
Parents’ perception and felt needs in handling children with autism is considerably a recent issue
in research arena. Significant studies have been conducted in this area. In Bangladesh, very few
research studies are done on autism so far. These studies provided input for the present study. The
following literature review will analyze the research issue from various perspectives and will
provide a rationale for further study in this field.

Literature on the key words will be discussed separately at first and then moving towards merging
them. Starting with the discussion of previous literature on ‘autism’, the review will be further
extended on ‘perception’, ‘perception of parents of CWA’, ‘felt needs’ and ‘felt needs of parents
of CWA’ in particular.

Autism
Autism is a lifelong disorder that causes severe problems with communication, social
relationships and behavior. This complex neurodevelopment disorder interferes with normal
functioning of the brain. The Diagnostic and Statistical Manual of Mental Disorders, DSM-IV
(American Psychiatric Association, 1994) defines autism as “a pervasive developmental disorder
characterized by impairments in communication and social interaction, and also restricted,
repetitive, and stereotypic patterns of behavior, interests, and activities” (Resource guide, 2000).
Initially autism was believed to be a disorder caused by parental negligence and gradually became
characterized as a neuro-developmental and developmental disorder (Holt, 2008).

In addition, Federal definition of autism confirms the above definition with few additions, and
defines autism as a developmental disability that seriously affects verbal and nonverbal
communication and social interaction, generally observable before age 3, and adversely affects a
child’s educational performance. Repetitive activities, stereotyped movements, resistance to
9
environmental change or change in daily routines, and unusual responses to sensory experiences
are often seen in autism (Simpson et al., 2005). In a simpler way Landa (2007) defined that, the
indicators of autism or ASD include ritualistic behavior, difficulty making friends, lack of eye
contact, lack of ability to express what he/she needs, unusual gestures and lack of responsiveness
(as cited in Holt, 2008, p. 1).

According to history of autism, the first documentary evidence of an individual who could be
reasonably defined as an autistic person was presented by a French physician J.M.G. Itard in the
early nineteenth century. Itard was recognized as the father of special education by many
(Hanbury, 2005). Later in 1943, Leo Kanner first used and described the word ‘autism’ (Simpson
et al., 2005). Currently, autism related disorders are termed as autism spectrum disorders (ASD).
ASD refers to the broader range that includes subtypes and levels of severity of autism that are
included in the spectrum of autism and pervasive developmental disorders (Simpson et al., 2005).

While seeking education, according to American Psychiatric Association (1994), the difficulties
of individuals with ASD in reciprocal social interaction, verbal and nonverbal communication,
and stereotyped and repetitive behaviors pose challenges to teachers in general education
classrooms (as cited in Starr, Foy, Cramer & Singh, 2006 p. 316).

Perception

According to the new world encyclopedia ‘perception’ is a process that translates stimulation of
senses into meaningful experience. Cognitive sciences provide a more detailed understanding of
perception as a process of acquiring, interpreting, selecting and organizing sensory information.
Similarly, educator Kendra Cherry explains that, “Perception is our sensory experience of the
world around us and involves both the recognition of environmental stimuli and actions in
response to these stimuli” (About.com Psychology, 2013, p. 1).

Perception creates our experience of the world around us and allows us to act within our
environment. In addition, McKellar (1968) described ‘perception’ as a learning process;
perceptions come out from the experiences we sense and the knowledge acquired from
10
experiences shared by others. The perceived knowledge after completion of the learning process
shapes our behavior and forms our expectations (as cited in Akhter, 2012, p. 24). Hence
perception comes from own sensory experiences and learning from experiences of others, and
interpreting all these experiences.

Perception of parents of CWA

“Children with ASD have a constellation of deficits and excesses in their behavior. Caring for a
child with ASD can be challenging and extremely demanding in many aspects” (Twoy, Connolly,
& Novak, 2007, p. 252). In addition, Twoy, Connolly, & Novak (2007) mentioned that, these
parents experience day-to-day level of stress arising from parenting; lack of confidence in
handling the child’s behavior; the lack of supportive services to meet the needs of the CWA; and
the realization that there is no cure for ASD; and these are only few of the stressors.

Lord & McGee (2001) explained that parents of a CWA experience stressors both from internal
sources within the family and from external sources when they approach health and social services
and also with education services for the autistic children. The stresses and challenges parents face
in raising a CWA are mostly linked to diagnosis of autism, adjustment with child’s ritualistic
behavior, getting involved in child’s education and therapy decision making, increasing contacts
with multidisciplinary professionals, resource scarcity and buying and using therapeutic or
technological supports (as cited in Twoy, Connolly & Novak, 2007, p. 253).
Lecavalier, Leone & Wiltz (2006), Hastings, Kovshoff, Ward et al., (2005) & Bromley, Hare et
al., (2004) also suggested that behavior and conduct problems of autistic children were most
strongly linked to parent stress rather than other symptoms of autism, severity of developmental
delay, or adaptive skills (as cited in Schieve et al., 2007).

Solomon & Chung (2012) further mentioned that, professionals may be unwilling to use the word
‘autism’ at first to the parents after diagnosis; this neither serves the parents nor the child. Parents
may end up with a feeling that they have lost the time to know the actual thing. In another study
Murphy & Tierney (2005) explored that parents of CWA found it helpful if the diagnosing
professionals informed the positive aspects as well as the negative aspects of autism and could
11
explain the impact of autism on the child’s development as well as impact on family’s way of life.
Too much negative information during diagnosis might be inappropriate as that could add further
stress and anxiety to an already delicate and vulnerable situation. “If there is any chance of autism,
encouraging parents to seek a full evaluation is preferable, even if the helping professional risks a
tear in the alliance” (Solomon & Chung, 2012, p. 254).

Fitzgerald et al. (2000) & Symon (2001) confirmed frustrated and difficult lives of parents of
children with autism as they go through increase in stress, depression, anxiety, financial
difficulties, or relationship problems along with decreases in self-competence and self-confidence
(as cited in Murphy & Tierney, 2005, p. 7). Furthermore, Nicholas & Marden (1997) suggested
that, it might be caused or aggravated by variety of factors including information lacking. More
specifically, unhelpful information might frustrate the parents even further (as cited in Murphy &
Tierney, 2005, p. 7).

Parents of children with autism become isolated; even the most extroverted parents feel
discomfort in attending social gatherings due to unpredictable behavior of the autistic child.
Parents may be split with one feeling of too anxious to take a chance and the other feeling that the
child can only learn to adjust by making trials (Solomon & Chung, 2012). In addition, Woodgate,
Ateah & Secco (2008) explained that parents may feel ashamed of their child’s autism while
attending social events with their children with autism; they may avoid such feelings by totally
remain out of the whole experience. Similarly, social gatherings that involve neuro-typical
children may trigger intense feelings of jealousy, sadness and anger (as cited in Solomon &
Chung, 2012, p. 260).
As the mothers are more involved with children and definitely the same is true for children with
autism, previous research found that, mothers of autistic children are at significant risk because of
enduring high levels of psychological distress; this distress results from high levels of child
behavior problem and low levels of informal support within the family. Both of these factors can
be treated by specific health and social interventions (Bromley, Hare, Davison & Emerson, 2004).

Starr, Foy, Cramer & Singh (2006) explained that with regard to the perception of parents on
education, parents of disabled children are the best advocates for their children as they know their
12
children’s strengths, weaknesses and needs better than anyone else. This leads to the need for a
parent-school collaboration while provide effective education for the child; parents should be
considered as an important team member while making an Individual Education Plan (IEP) for the
child concerned.
A pilot study conducted by Starr, Foy, Cramer (2001) focused on perception and satisfaction of
parents of children with ASD regarding their children’s education; the study found that these
parents were fairly satisfied with and they had positive perception about their children’s
education. The study also revealed that, the parents of younger children and those who were
nonverbal had more positive perceptions compared to those who had children older and verbal. It
was also indicated that parents of younger children were more satisfied as they had more contacts
with the school, especially in terms of volunteering in the classroom, picking up their children;
and also the fact that development gap is not as prominent at young ages (Starr, Foy, Cramer, &
Singh, 2006).

Felt needs

Felt needs refers to the needs that people feel the necessity of, and desire. As Onyeozu (2007)
asserts, “felt needs means something sincerely desired, something craved for. It means want,
longing or aspiration. It also means a strong object of inner wish or an object of heart-felt prayer
or something aimed at” (as cited in Onyenemezu & Olumati, 2013, p. 156). According to
Onyenemezu & Olumati (2013), felt needs means that emotional feeling for a need for some
change in order for the betterment of people. This ultimately makes them join together as a team
and move a driving force in the changing process which they consider essential for them. This
emotion includes their attitudes, values, hopes, aspirations and fears. When an attempt to induce
change neglects involvement of this emotional commitment, cohesion or manipulation might
occur.

Leagans (1964) explained need as a ‘deceptively complex, basically significant, and far reaching
in its implications’. The objective of any habilitation program is to help people learn to live better,
and to achieve their maximal potential. It is therefore essential that such programs must be in
accordance with the felt needs of parents. Strengths of extension lie in the flexibility in adjusting
13
according to peoples’ needs imposed by a changing environment. Felt needs are what adults
consider important, that means, what they want, think they need, and actually do need and get
these woven into a realistic, well-organized and concerted series of forceful activities. In the same
way, the parents of children with autism frequently require to access support services to face the
challenges of raising a child with a life-long impairment. Previous studies have suggested various
supports and coping strategies that are effective for adapting for a child with autism. On this point,
undoubtedly, parents’ own perceptions of needs, and whether parents felt their needs were being
met should be explored (Siklos & Kerns, 2006).

Felt needs of parents of CWA

According to Bailey, Blasco & Simeonsson (1992); Bailey, Skinner, et al., (1999); Carr &
O’Reilly (1996); Chadwick et al., (2002); Ellis, Luiselli, et al., (2002) & Treneman, Corkery, et al.
(1997), in order to adjust with the demands of nurturing a child with developmental disability,
majority of parents will need a range of supports including information support, social support
(e.g. expanding a parent’s social network), community services (e.g. access to professional
services), respite care and financial support (as cited in Murphy & Tierney, 2005, p. 8).

Reed & Osborne (2012) suggested that, parental functioning and their reaction to the reality of
having a child with autism should be assessed too as part of the diagnostic consultation. Parents of
children with autism who are in need of help and support should have a provision for support in
the form of counseling or even more intense ‘talking therapies’. Involving the parents, knowing
their perception and felt needs is crucially important to help the children with autism. According
to Alberta learning resources (2002), as parents are the main stakeholders and can reinforce the
concepts and processes learnt in school by their children, their involvement in planning, problem
solving and decision making in children’s education is extremely important. Experiences of
families with autism are very sensitive and critical. The process of getting accurate diagnosis and
proper treatment is also a long and frustrating experience. After being diagnosed as autistic, the
lack of available services becomes the major concern of the parents.

14
According to Anam & Zaman (2003), in educational setting many parents create an obstacle for
disabled children; they resist these special children to study with their own children. This is also
the real scenario of access to education in Bangladesh for the children with autism (as cited in
Akanda 2010, p. 29). In Bangladesh, parents of autistic children suffer a lot as they hardly have
any counseling facilities or support group to make them understand the concept and impact of
autism and help them coping. Most of these parents feel lost and confused about the future of the
children with autism when the parents would not be there with them. They do not have facilities
like supplemental security income and special needs support group in collaboration with the
Government which is a very common facility in western countries. Absence of such facilities has
made autism a challenge in Bangladesh (Majumdar, 2011).

15
 Chapter 3
Methodology

Research Participants

Population of the study included parents of children already diagnosed autism by pediatricians,
clinical psychologists, and special educators using standard DSM-IV criteria. Some parents also
got their children diagnosed as autistic from hospitals and psychiatrists. In-depth interviews were
conducted with parents either father or mother from each family depending upon availability of
the parents’ time. Both fathers and mothers were selected to learn whether any differences exist
between their perceptions, experiences and involvement. Parents were selected from both urban
and semi-urban settings. Although most of the participants were from nuclear family, only one of
them was from an extended family.

Among eight participants 6 mothers and 2 fathers were interviewed depending upon participants’
availability and willingness to participate. They were from various age groups with below 20
years on one end and about 45 years on the other end. Their education level varied between SSC
and Masters Degree.

Research Site

The concept and awareness about autism is a new and emerging issue in Bangladesh and the
knowledge and few facilities available are mostly within the capital city, Dhaka. Diagnostic
facilities and awareness activities for dealing with autism, special schools and inclusive schools
for autistic children are also consolidated in Dhaka. Few organizations like CNAC, SBK of Dhaka
Shishu Hospital and BPF were the main sources for selecting samples that make the diagnosis of
autism according to DSM criteria and using standardized scales (like ADOS).

16
The study was conducted in different locations of Dhaka city. As only those participants had to be
selected, whose children were diagnosed with autism according to DSM-IV criteria, relevant
centers conducting such autism diagnoses were the main research sites along with the centers
where these confirmed diagnosed children start schooling. The center authorities introduced the
parents of children with autism with the researcher.

For the convenience of the parents, most of the interviews took place either in a quiet corner of the
center, or in a separate room in the center premise arranged by the authorities, or in the library of
the center. Very few of the parents agreed and allowed the researcher to visit their home for a
second day interview; one of the participants even said before the home visit that her neighbors
are not informed about her child’s autism, so if the researcher could avoid mentioning that in front
of them.

Research Approach

In order to fulfill the objective of the study and to answer the questions raised, the study followed
a qualitative research method. Fleishman (2005) reports qualitative methodology to be effective in
disclosing the personal perspectives of parents of children with autism (as cited in Kidd &
Kaczmarek, 2010, p. 260).

For the present study, the qualitative research methodology was used to explore the experiences of
parents of children with autism. This allowed gaining a deep understanding of the lives of the
parents, and also tried to reveal a detailed and in depth view of the perception, experiences and
felt needs of them. Collecting comprehensive narrative information about the inner feelings of
these parents and their felt needs in raising children with autism has been conducted in this
research study. Knowing some common experiences is expected to be valuable for several groups
of professionals such as therapists, teachers, and policy makers (Creswell, 2007, p. 62).

Eight parents (6 mothers and 2 fathers) of CWA were selected for in-depth interview. Through in-
depth interviews, the researcher tried to gain access to these parents living with autism, which is

17
their world of experience or stories. Ethical approval for this study was obtained from the BRAC
University.

Measures
 In-depth interview questionnaire

A semi structured interview questionnaire with open-ended questions was developed for in- depth
interview. The main questions posed to the parents were focused on-

1. What are the experiences of parents of children with autism in terms of the management of

their emotions, their daily life roles, and their child’s behaviors and interventions in

various settings?

2. What strategies do these experiences suggest that might assist in the management of the

above?

Data Collection Methods

After receiving permission from relevant organizations where parents of autistic children visit for
child’s health or education purpose and after being introduced with parents of children with
autism, participants were recruited predominantly through purposive sampling; potential
participants were recruited only after written consent. In order to increase homogeneity, the
parents of children aged between 2 years and 8 years with autistic disorder based on DSM- IV
criteria were included. Given that one person can yield a multitude of concepts, large sample sizes
were not necessarily required to yield rich data.

Data collection was done using in-depth semi-structured interviews. The interview schedule was
based on the literature related to the experiences of parents of CWA, and on the authors’ clinical
and research expertise. Interview questions covered participants’ lifestyle, the impact of autism on
their life, the situations they face in family and social context, the challenges they face, and their

18
experiences in managing their roles, their child’s behaviors and therapies, their emotions and
finally their felt needs.

The researcher prepared the interview questionnaire/guide line. Before starting data collection,
rapport building was an important aspect to make the participant comfortable. Venues for the
interviews were fixed as per the convenience of the participants. Each interview took about 2 days
(depended on the participants’ response and availability). Interviews were conducted in different
settings, such as home, diagnostic center or school premise, when the child was around and not
around, participant alone and with other family members or neighbors. The researcher explained
the purpose of the study, and administered the questionnaire in the local language that was easily
understood by the parents. The question order was maintained. Interviews were recorded with
consent of the participants. Interviews were recorded using a digital audio recorder and field notes
were taken following each interview. Interviews were then transcribed verbatim by the trained
researcher.

Parents were interviewed by the researcher either right after getting introduced depended upon the
participant’s consent or with a preset time after getting introduced. During the in-depth interview,
the researcher also looked at the facial and emotional expressions of the participants, the
surroundings, interaction of parents with the CWA, and also with other family members or people
around. The researcher prepared the transcript of the interview with the parent’s permission.

Role of the researcher: I started conducting the first in depth interview on June 19, 2013 after
receiving permission from the facilitating organization. After rapport building the parent signed
the consent form and started answering the interview questions; she elaborated her stories as the
interview became in depth. The other interviews went on similarly. Being a teacher myself, I have
my earlier experience of teaching children and counseling parents. While interviewing the parents
of children with autism, at some points I found it quite challenging to resist myself from giving
suggestions to the parents and to maintain my role as a researcher.

19
Sampling Procedure

A homogenous purposive sampling was done to select the parents of children with autism.

Inclusion criteria
Parents of children with autism, where the child’s age was between 2 years and 8 years

Among 8 parents, both mothers and fathers were selected

Homemakers and a working mother were interviewed

Parents from nuclear family and from extended family participated

Participation was voluntary; the parents were selected if they were willing to participate. An
informed written consent was obtained from each participant.

Exclusion Criteria
Parents unwilling to participate or continue at any point of time were excluded.

Data Analysis

Data analysis was done as an ongoing process with data collection. Data analysis in qualitative
research consists of preparing and organizing the data (i.e. text data as in transcripts) for analysis,
then reducing the data into theme through a process of coding and condensing the codes, and
finally representing data in figures or tables or in a discussion (Creswell, 2007, p. 148). As the
study was a qualitative study in nature, data analysis began with the very first interaction between
the researcher and the participant. An idiographic approach, beginning with analyzing individual
transcripts and then moving on to analysis across participants, was used. The researcher organized
field notes and transcripts of the recorded data right after data collection. A true picture of the
setting and events was provided to understand the context of the participants. Interview
questionnaires were analyzed to understand the true picture. Researcher followed the sequence of
immediate de-brief in the field and then extended de-brief on the same day. The transcript and
field notes were read multiple times by the trained researchers. Then the data were coded by
highlighting text and making marginal annotations that comprise paraphrased data, Connections
20
were noted between data, and preliminary interpretations. This step was repeated and further
annotations were made.

Attempts were made to understand the meaning of the findings as part of interpretation of
qualitative analysis. Interpretation was reflective, integrative, and explanatory. Coded data were
analyzed for themes, sub-themes and a common ground of discussion. Themes were then
developed based on the annotations, and significant statements were sorted into the themes. The
themes were then reordered, clustered, and connected to achieve a set of themes and quotes that
adequately reflect the breadth of the experience depicted in the transcript. In addition, a narrative
was developed about the stories of the parent’s where fake names were used for participants.
However, different data analysis techniques were used for triangulation, like linking the story
narratives with findings, analyzing the individual transcripts first and then a cross among
participants, and finally a cross between study findings and previous literature findings were
conducted. Perception and felt needs were also discussed according to demographic categories
(e.g. age, education level, job, gender etc.) to determine if perception and felt needs differ by these
factors.

Ethical Issues & Concerns

Autistic Spectrum Disorder is a very delicate and sensitive issue. Interviewing the parents of
children with autism required extra attention and sensitivity, which considered important ethical
issues. The participants were explained about the nature of the study and the importance of their
participation. The researcher maintained confidentiality and anonymity throughout the study. The
participants had the right to withdraw at any time during the research period and they had the right
to ask for the copies of the draft of the written report and the transcripts at any time during the
research.

21
Validity & Reliability

The face validity of the instrument was checked with help of expert opinion. After preparing the
in depth interview questionnaire both in English and in local language, opinion from 3 experts
were sought for checking the face validity of the instrument. Then their feedback was
incorporated in the questionnaire.
The reliability of the measures was ensured by pilot testing of the in-depth interview
questionnaire. Pilot interview was conducted with two parents of CWA and feedbacks were
incorporated to refine the interview schedule.

Limitations of the Study

The study focused on parents whose children were already diagnosed autism by standardized scale
like DSM-IV and who have started some intervention for the child with autism. But there are also
some parents who are not attending any follow up services for CWA even after being confirmed
autism by DSM IV criteria. These parents could not be included in the study due to time
constraint.

22
 Chapter 4
Findings and Discussion

This chapter will shed light on findings of the study and discussion on them. Finally, it will
conclude with the study recommendations.

Findings
Eight in-depth interviews provided detail information on perception and felt needs of parents with
children with autism. Findings of the study will start with a demographic detail of the respondents
and then elaborating under the broad head of four specific objectives, experiences of parents at
different stages of life of the CWA, situations faced in family and social context, challenges faced
by parents during schooling of autistic children and finally the felt needs of parents of children
with autism. The findings will cover the research questions from every section. Research findings
will be enriched by quoting the answers and comments of the respondents directly.

Demographic details of parents

A total of eight (N=8) parents were interviewed where 75% were mothers and 25% were fathers
of autistic children. The respondents were from different age groups, like, 12.5% of the parents of
CWA were below 20 years, 25% of them in 20-29years, 50% of the parents in 30-39 years age,
12.5% of them were 40-49years of age. 87.5% of the respondents were from urban areas and only
12.5% of them were from semi urban areas. Among the parents from urban areas, 1 out of 7 used
to live in semi urban areas before detection of her child’s autism and moved to urban Dhaka for
better facilities for the CWA. 50% of the participants had an educational background of a Master
degree and 25% of them passed Secondary School Certificate.
Five out of eight parents were homemakers and three of them were in service, one working
mother was interviewed and one mother reported that she left her job after knowing that her child
has autism. 62.5% of the respondents reported a monthly income of between Tk.15,000 and
Tk.25,000, 12.5% of them reported below Tk.15,000 and 25% of them mentioned above
23
Tk.90,000 as their monthly income. Seven out of eight participants were from nuclear families,
only one of them was from an extended family.

Findings on experiences of parents at different stages of life of the CWA

Experiences before and during child birth

“Every parent wish that they would have a good child, would go to a good school, I wished my
child to become a doctor.” (Personal communication: Interview # 1, Date: June 19, 2013) All the
participants expressed their dream for a child developing normally when they were expecting a
child. Half of the respondents said that they had no problems during pregnancy and delivery of the
CWA. The other half of the parents reported difficulties before and during child birth; the
difficulties they reported were, forceps delivery, inexperienced doctor during child birth, water
bag rupture and premature birth of the child, placenta praevia, depression, delay in child-cry and
neonatal jaundice of the child right after birth.
Above findings sum up that the parents of CWA started with an expectation for a healthy child
and had different experiences during pregnancy and delivery. Some of them sadly experienced
that, even with a smooth and trouble free child birth, the child got autism.

Autism awareness
“I watched in TV about autism, but did not know in detail, did not know which symptoms in
children mean autism. Actually, I did not try to learn, I lacked interaction with others; I was so
busy with my child…” (Personal communication: Interview # 1, Date: June 19, 2013). 50% of the
participants reported that they never heard about autism before their child got diagnosed as
autistic, 25% said that they heard the word ‘autism’ but had no idea about it, the rest of the
participants claimed that they had some basic ideas about autism which made them aware when
they found some similar symptoms in their child.
Four out of eight parents reported that the child never talked, two of them said the child used to
say ‘two-word’ sentences and still talk the same, the rest two said that their children started using
single words, but deteriorated later. Two of the mothers also shared that they thought their child
would talk late as they saw other children in family or relatives who had speech delay and talked
alright when they started. One father said,
24
“My son used to say ‘baba’, ‘mama’, ‘dada’, ‘nana’ when he was 8/9 months of age; he used to
talk on his own; now day by day it is decreasing. From the starting he was little different; he used
to remain in his own world, did not respond, did not interact with others.” (Personal
communication: Interview # 3, Date: June 24, 2013). 62.5% of the parents informed that their
children used to play on their own, hardly had any interaction with others; others reported that
their autistic children used to play and interact with others but deteriorated later, mostly after 15
months of age. Only one of these parents could not find any reason for the child’s change in play
and interaction.

By summarizing above findings, it was seen that, most of the participants were unaware about
autism and became concerned when they noticed change in behavior or unusual behavior in their
children with autism, like speech problem, lack of interaction and socialization with others.

Diagnosis of autism
The study found that 50% of the parents received the confirmed diagnosis of autism before the
child was 4 years of age, 37.5% of them knew it before the child became 3 years old and 12.5% (1
out of 8) got her child’s autism detected when the child was 4-5years of age as she was living
outside Dhaka before and during the diagnosis. Two parents reported that their autistic children
had added difficulties; one had disability due to forceps delivery and he had difficulties using his
right hand and right foot; the other had occasional seizure attacks.
Almost all the parents first took their child to an ENT specialist or a neurologist when they
noticed delayed speech and alone play in their child, and then they were referred to relevant
hospitals where the diagnosis of autism was confirmed. Regarding the process of diagnosis, six
out of eight parents reported satisfied. The rest two expressed a need for more counseling during
diagnosis; one of them felt frustrated and said, “Doctors have contradiction among themselves
while prescribing medication for my son.” (Personal communication: Interview # 3, Date: June
24, 2013)
This father was very depressed, while narrating his experience; he informed that his child with
autism has some added difficulties because of forceps delivery. They have to take the child for
physiotherapy too. He shared dissatisfaction regarding diagnosis of autism and follow up
treatment. He complained about doctors prescribing medicine which was unavailable in the
25
market; he was frustrated that he could not even provide proper medication for his child; he
complained that he did not receive proper guidance from the doctors; he felt that the doctors are
experimenting, may be after 10 years there will be a medicine for autism, but by then his son
would not be benefitted. In his choked voice, he even mentioned the expenses of raising an
autistic child and expressed his deepest concern whether spending for the child would be worth.

Based on above findings, it is seen that, all 8 respondents got their child diagnosed before the age
of 5 years of autistic children. Most of them think that the diagnosis process was satisfactory; they
were given proper suggestions and counseling from the doctors and experts. The two unsatisfied
parents expressed their frustration for lack of counseling during diagnosis of child’s autism.

Migration
Child’s autism caused two of the eight respondents to migrate to Dhaka as there are no facilities in
rural areas for autistic children. A mother said, “While living outside Dhaka, at some point I
stopped visiting the doctor in Dhaka for my autistic child’s follow up.” (Personal communication:
Interview # 4, Date: June 29, 2013)
The mother shared her story of migration. The working mother said that she used to live in
Shoriyotpur. At 15 months of age, her son had high fever and seizure attack; after that he started
having speech problem; she took her son to Dhaka and after several visits to doctors the child was
diagnosed autistic. After diagnosis, the doctors advised for check up once in three months and to
start his schooling. She said that travelling far with the child was very difficult and she stopped
taking the child for follow up visits. Later, the doctor again emphasized her importance of follow
up for the CWA and advised her to move to Dhaka to avail proper facilities for the child. Then she
requested her senior officer for her posting to Dhaka and now she lives in Dhaka alone with her
child; her husband visits them every weekend as his workplace is outside Dhaka. She admitted
that although the child is now getting regular treatment and schooling, he has to stay with an
untrained maid at home when the mother is at work.

Another respondent reported that they are staying in Dhaka for treatment of the child with autism.
It would be less expensive and easier for them to live in village, but they had to take decision for
26
migration due to child’s autism. She also added that staying in village with the autistic child had
another drawback; people there used to laugh at their child.

These findings show that, after detecting autism, when these parents experienced lack of medical
and other support for autism in rural areas, they migrated to Dhaka to get support for the child,
even when it is very hard for them to bear the expenses of living in urban area.

Coping with the reality

The mother was in tears during her interview and said, “What sin did I commit that my only child
has autism! Why could not I learn it before?” (Personal communication: Interview # 1, Date: June
19, 2013) While narrating her story, Rina was seen confused and still could not accept her child’s
autism. Repeatedly, she was telling that, she had this child after lots of prayer; she had so much
expectation; now she is totally broken. She said that, there is no one who can console her; she
developed heart problems out of tension for her autistic child. Even after having support of her
spouse and financial stability she still could not cope. Sometimes she even hit her child when the
child got stubborn, threw things and broke things. She said in extreme situations, she felt like
tearing her apart!

Without any doubt all the parents got upset when their child was detected with autism. 75% of the
respondents reported that they felt sad, cried but tried to remain strong for sake of the child. They
accepted the fact that it is Almighty’s test for them and they have to face the challenge. One
parent expressed her concern regarding proper treatment and guidance for the CWA. The rest 25%
were still frustrated and not motivated. A mother with strong mentality said, “I was very sad, but I
was not broken; I felt that I have to work for him. At that time, I stopped doing regular chores
except cooking for the kids. I used to wake up early in the morning, finished cooking and rest of
the time I used to be with my son, and trained him everything started from going to the toilet.”
(Personal communication: Interview # 2, Date: June 23, 2013)

75% of the respondents coped with the reality as they had strong spousal support. They also
mentioned that doctors’ advice, behavioral therapy or advice from schools too helped them to

27
cope with the situation. Support from own parents and in-laws was also reported by two of the
participants.

Based on above findings, it is seen that although having a child with autism is highly frustrating,
mutual support between parents of an autistic child was of immense help to cope with the reality.
Secondly, expert advice and counseling helped them to start working for the CWA. Strong
financial status also strengthened the coping capability of parents of children with autism.

Management of the CWA

With regard to doctor’s visit, a parent said, “I used to take her to a doctor every month (before
detection), now I do not; since there is no medication for this (autism) what left to take her to a
doctor?” (Personal communication: Interview # 1, Date: June 19, 2013) Three of the participants
reported that they do not have to take the child to a doctor as their autistic children mainly require
behavioral therapy; the other three reported a doctor’s visit in 3 months interval; and the rest two
informed once a week doctor’s visit. One of the two who took CWA for weekly doctor’s visit was
just for check up to his known doctors and the other parent took her child to the doctor as the child
used to often get his head hurt. None of the eight parents took their child with autism to a support
center other than school or doctor’s chamber.

Regarding the food habit of the autistic children, six out of eight parents did not have any
complaint; the other two reported fewer intakes of food and making mess while feeding by self.
Sleep habits were reported alright by 50% of the parents; other 50% still could not fix the time
table for sleeping for the child with autism; sometimes the child does not go to bed until the
parents sleep, sometimes they oversleep; sometimes they sleep less; some children sleep during
day time instead of at night.
Regarding the way of interaction with the child with autism, a mother said, “He does not speak;
if he needs something, he holds my hand and takes me to that and shows me. I also just make him
do things what I want him to do.” (Personal communication: Interview # 5, Date: July, 01, 2013)
Similar comment was made by 6 out of 8 parents whose children with autism did not talk or could
talk only few words.

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By summing up above findings, it is seen that regarding child management, the respondents had
less complaints regarding doctor’s visit and child’s food and sleep habits; rather they faced
challenges in child’s speech and interaction with the child with autism.

Time management by working parents

Three working parents including one mother interviewed shared their way of managing time for
the CWA. Two of them mentioned that they try to give quality time to the child after they come
home; they take the child out for walk or cycling, do exercises, try to teach turn taking while
playing ball. A father shared his failed attempts to give time to his autistic child after coming
home at night. He said, “If he would take that time/ask time from me….when I see that, he is not
responding even after calling him repeatedly, I stop calling him; I remain watching TV or lying
down; if he would respond, we could have done something even I am tired.” (Personal
communication: Interview # 3, Date: June 24, 2013)

An unfortunate mother left her job just to take care of her child after knowing the child’s autism.
Although depressed she narrated her situation in a strong voice. She said that her parents advised
and supported her to leave a good job for the sake of nurturing her CWA. She was determined to
learn and get trained, so that she could help her son. She mentioned that, taking the decision of
leaving the job was not at all easy; her work was her pleasure and feeling of satisfaction too; it is
difficult for a professional to remain out of her regular work; but her son was her priority too; that
made her take the decision of leaving the job for the time being and made herself determined to
take the challenge of autism. (Source: Personal communication: Interview # 5, Date: July 01,
2013)

Based upon above findings, it can be summed up that, working parents were willing to manage
their time for the CWA, but sometimes they failed because of their own exhaustion and the extra
effort required for the CWA. Therefore, performance of working parents varied between doing
activities with the child after coming home to just lying down and waiting for the child to respond.

29
Present feelings about having a CWA
Five out of eight parents said that they would let the child do anything he/she would be good for.
Parents felt that, if the child’s talent could be identified, they would support the child accordingly.
Two parents wished if the autistic child could be normal; one parent whose child was just
diagnosed reported that she would follow the suggestions from experts and would train her child
with autism. Out of frustration a mother said, “After coming here (at a special school), seeing
other autistic children I became sure about my child’s autism...but actually there is no one to
console me, to make me understand. Now I feel like such children should only born in western
world, in America; they have different and better schooling system which we do not have here.”
(Personal communication: Interview # 1, Date: June 19, 2013)

By summarizing above findings, it is seen that most parents with autistic children are trying to
face the challenges of raising a CWA; they have started thinking positive. Few parents are still
struggling to even start thinking positive; they remain frustrated and less motivated.

Findings on situations faced by parents at family and social context

Spousal support regarding attitude of the spouse towards CWA

One of the distressed mothers sadly said, “My family has become haphazard because of my
child’s autism. At times my husband says, it is better to have no child rather than having an
autistic child.”(Personal communication: Interview # 7, Date: July 14, 2013)

While narrating her condition, she was emphasizing that if her husband could only be supportive
to her and could accept the autistic child positively, she would be more capable in raising her
CWA. She also said that her in laws blame her for the birth of the child with autism, her husband
hardly takes interest in managing the child; he blames the child birth too. The mother was in tears
and said that even after a year of diagnosis she could not start schooling of her child with autism.

Spouse support was reported by six out of eight parents and they reported receiving mental and
practical support from spouse; one out of eight informed that the spouse became frustrated and
confused; and the rest one said that her spouse was disappointed and unsupportive. Among the six
30
supportive spouses, one husband was still very emotional, could not take his child’s autism; the
respondent reported that her spouse often fell sick after detection of child’s autism. 87.5% of the
parents informed that their spouses are affectionate to the CWA; 12.5% said that the spouse is
good with the autistic child when the child is quiet. Among those 87.5% respondents, two out of
seven admitted that their spouse hit the CWA when they cannot manage. One father said, “My
wife sometimes hit the child; she becomes exhausted/annoyed while remaining after him (the
CWA) for the whole day; she loses temper and she feels bad after hitting him. Similar situation
happen with me too.” (Personal communication: Interview # 3, Date: June 24, 2013)

Spousal support in taking care of the CWA

62.5% parents reported that their spouses contribute in feeding, taking to bed, taking for shower,
time out with the child with autism when they get time, 12.5% said that the spouse (husband)
contribute in taking care of the autistic child occasionally as they have another child and planned
to take care of each child by each parent, 12.5% reported that the spouse cannot do the chores; and
rest 12.5% said the spouse only watches TV, or operates mobile phone or, play with a ball or, goes
for a walk with the CWA. Three mothers claimed that their husbands were very aware and
practical regarding the child’s management. One of them also informed that her husband made a
routine for the child with autism which all the members of the family follow regularly and
sincerely. On the other hand, two fathers reported that their spouses lost patience while managing
the children with autism and hit the child on several occasions; one of these two fathers also
informed that after receiving advice from service providers, now his wife can handle the child
more efficiently with his support and have stopped hitting.
Above findings suggest that except few exceptions, most of the parents reported that they had
spousal support in terms of mental support or guiding and sharing the management of children
with autism or sharing the chores. The extreme case shows the aggravated distress due to absence
of spousal support.

Reaction of the siblings

A mother shared about the situation between her two sons. She said, “Ratul’s( the CWA) elder
brother realizes that Ratul does not talk and play; so when he sees that Ratul is not participating,
the brother gets bored. They hardly have any interaction between them; the elder brother wants
31
him to join, talk and play; but since it is not there the interaction between them remain blocked.”
(Personal communication: Interview # 5, Date: July 01, 2013) Half of the respondents had only
one child and the other half had two children. Among those four parents, only one claimed that the
elder sibling of the autistic child is very cooperative. As the mother said, her elder sibling asks her
to give time to the CWA when she (the sibling) herself would do her homework. The sibling even
prepares crafts for her autistic brother and calls the neighbor kids to play altogether as she knows
that these are suggested for the improvement of her brother. Other three parents said that the
siblings want to play with the children with autism but they cannot as in some cases the CWA hits
the sibling or in some other cases they do not respond.

Based on above findings, it is clear that other than few exceptions siblings do not interact or play
with the children with autism. Usually, the younger siblings got pushed or hurt by the autistic
children if they approach to play, the older siblings lack interest to play with the children with
autism due to non-response or lack of interaction.

Attitudes of relatives
All respondents with one exception lived in nuclear family structure. Seven participants reported
that their relatives visit them and they visit the relatives as well; the participant who does not visit
relatives is mainly because the relatives live in village and they prefer to spend vacation in Dhaka
mostly to avoid people’s comments and difficulty in managing the child in openness of village.
Among those seven parents, all except one expressed that the relatives are sympathetic and nice to
the CWA and parents; one of them has very supportive relatives who visit them with children and
take initiative to play and interact with their autistic child; one parent said that they did not inform
the relatives that their child is autistic, they only know that the problem is of speech delay. One
out of eight parents expressed her grief that her in laws blame her for the child’s autism. In her
own words, “My in laws blame that my child is a result of our sin; he has autism as I did not say
my prayers properly, it is hereditary and the blame is on me. I rarely visit relatives as my son is
hyperactive and I have to remain after him all the time; sometimes relatives also make insensitive
comments to my autistic son.” (Personal communication: Interview # 7, Date: July 14, 2013)

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Above findings suggest that parents of autistic children face variable situations with their
relatives; mostly it was found that the relatives were sympathetic and supportive; in some cases
they are supportive but the parents do not disclose child’s autism; on the other hand few parents
are blamed by relatives because of the birth of an autistic child.

Avoiding the neighbors

“One of my neighbors did not welcome my son at her home after knowing that my child is
autistic; Zarif, my son wanted to play with those neighbor kids, but whenever the mother found
him, she closed her door; she had a feeling that her kids would learn hyperactivity from Zarif.
There were times when Zarif was crying at her door and she did not open the door intentionally.”
(Personal communication: Interview # 2, Date: June 23, 2013) Five out of eight parents visit
neighbors with their CWA and mostly reported nice and supportive attitude from them. One of
these parents did not inform the neighbors about her child’s autism; one has mixed experiences
from the neighbors; another parent said that his neighbors call his autistic son ‘mad’ behind his
back. Three of the participants mentioned that they do not visit or visit less to their neighbors
mainly to avoid negative situations as their autistic children may touch things there and break
them.

Based on above findings, the result shows that, mostly parents of autistic children are conscious
about visiting neighbors as the children with autism might create mess there, neighbors might get
annoyed and a negative situation might occur; so the parents prefer to avoid it. Mostly these
parents visit neighbors when they welcome the children with autism or when there is no chance of
any negative situation.

Attending social gatherings

“If we go out to any restaurant with my autistic son, he might throw away plates and break them.
There are other people there, they might think that why this child is brought here. It’s difficult to
take him outside or in social gatherings.” (Personal communication: Interview # 3, Date: June 24,
2013) This is how the father of an autistic child expressed his frustration while being asked about
people’s attitude towards the child with autism. Although 50% of the respondents did not mention
any negative experience while they went out with their autistic children, others mentioned that
33
people question why the child does not respond; whether the child is sick or autistic; one even
mentioned that people used to laugh at their autistic children.

These findings suggest that, other than few exceptions, most parents avoid taking out their
children with autism mainly because they do not want to face a negative situation or their child to
make a mess or outside people to make a bad comment.

Peer avoidance
One mother said, “Peers approach to my son, they want to play with him, but when they find that
he does not respond, then they leave. My son does not like people that much; he feels bothered if
people come.” (Personal communication: Interview # 4, Date: June 29, 2013) 75% of the parents
of autistic children said that peers want to play with their autistic child but their child either does
not respond or hits the other child or does not like others company. Only 25% of the participants
informed that their children with autism are learning to play with others. One of them even shared
that once the autistic child learned scratching from a peer and did the same with an older child and
got hit by the latter one.

By summing up above findings, it is evident that, almost all the respondents reported non-
response of CWA to peers as well. The only respondent that reported interaction of the child with
autism with peers was a result of effort by parents, school and relatives.

Findings on challenges faced by parents during schooling of the CWA

Failed attempts at regular schools

In tears and choked voice Salma was narrating her heart breaking life event about her experiences
with regular schools. She took Zarif to the first school where she stayed inside the school during
the school hours. Then the Principal asked her whether they could be strict with Zarif and on the
next day she was asked to wait outside the school or go home. She was upset but thought it would
be alright to maintain the school rules and waited outside. But after the school hours, she saw her
son coming; it seemed that he cried a lot and he was afraid. It took 4/5 days to make him normal.
Salma took another attempt and enrolled her son in a school in their community where she was
34
allowed to stay in his class. Her experience in this school was not satisfactory again. Although the
teachers were nice they used to create pressure on Zarif for writing; he became restless in the
classroom and teachers got annoyed. Parents of other students also mistreated Zarif and his
mother for such situations. Ultimately Salma had to plan for a special school for Zarif (Source:
Personal communication: Interview # 2, Date: June 23, 2013).

A similar reflection was found in the study that 62.5% of the respondents have started sending
their CWA to special schools. The rest 37.5% are planning for their child’s schooling. One parent
whose child was just diagnosed is planning to take management package from CNAC and to
follow that at home; one parent still could not send her son to a school because of no special
school in her area; one parent living in semi urban area was planning to set up an inclusive school
in his area for his CWA and others; he also tried to take the child to a school accompanied by the
mother where he worked. Among those 5 parents whose autistic children already started school,
two reported that the child used to go to the school willingly, the other three said, coming to
school is like a going out for the child; one of these children resist entering into the class.

Based on above findings, it can be said that although doctors and therapists prescribe to enroll the
autistic children to regular schools, almost all the parents interviewed sent or were planning to
send their children with autism to special schools. Only one parent wanted to set up an inclusive
school in his area for his child with autism.

Concerns regarding schooling

Parents shared various concerns while they were planning to enroll their child to a school. Two of
the respondents felt that the child might cry and might take time to adjust in the school; one
mother was anxious whether her child might fight and might have problem in toileting; concern
regarding effective support for the CWA was also expressed by a parent; two parents just want to
start schooling as soon as possible; one parent was more concerned about whether she would be
able to learn the management of her autistic child from the research based school; one frustrated
parent even expressed his concern whether spending money for the CWA is worth. The father
said, “I did not have much concern, but it came to my mind that whether it is a wastage of money;

35
I thought there won’t be any benefit; regular transport cost for him along with other expenses…is
it worth?” (Personal communication: Interview # 3, Date: June 24, 2013)

It was seen that, although having various concerns like, adjustment in the class, toileting, fighting
with peers, wastage of money, parents of CWA are sending or planning to send their autistic
children to schools thinking that expert help there might be beneficial to the child.

Trained teachers and facilities in special schools

Since all five respondents whose CWA started schooling sent their children to special schools,
they informed the facilities of trained teachers and staffs at those schools. Newcomers are still
need to know more about the process, getting track of what the child is learning, progress or
difficulties of the child with autism. A mother who just started coming to the class along with her
CWA said, “I have started learning taking care and tackling my child; the teacher guides me, but
my child does not give me time or opportunity to sit, talk and listen to others; she is not yet settled
in the class; teachers told me not to worry.” (Personal communication: Interview # 1, Date: June
19, 2013) One father also mentioned that there should be the initiative from parents to learn from
the teachers in class. Two parents whose CWA have not started schooling yet took management
package and counseling from the special school associated with the relevant medical center.

The above findings show that parents are depending upon the guidance provided by trained
teachers at special schools in managing and nurturing their autistic children.

Interaction between peers and among parents at school

Parents who were sending their CWA to schools informed that in a special classroom CWA do not
interact with each other, sometimes fight and take each other’s food; they are just learning to mix.
One parent found it difficult and challenging to make her child sit and stay in the class room; she
also reported that other parents shared that they too had same problem with their CWA. One
parent who sent her child to a mixed class room could not say anything about peer interaction as
she did not stay at school. Only one of the respondents who had an experience of sending her
CWA to regular schools reported how she felt challenged during an encounter with another parent
there. In her own words, “At that school in our community, one day when my son scratched a boy,
36
his mother told me directly whether it is a school for crazy kids that I took my son there! She told
me to send my son to a school for mental problem. She even physically mistreated my son and
became harsh.” (Personal communication: Interview # 2, Date: June 23, 2013) The mother could
not speak more on this and was in tears.

By summing up above findings, it can be said that to put effort in socializing the CWA among
peers is quite challenging. Parents who have autistic children are usually nice to each other but
parents of CWA sometimes face challenges with parents of normal children.

Findings on felt needs of parents of CWA

Family and expert support for initial coping

Four parents out of eight mentioned about the need for family support to cope with the reality
when they first heard about their children’s autism. Five parents felt the need for expert advice
either from doctors or from teachers which would help parents of CWA to cope well. One of them
said that a proper guideline would be helpful. Two parents mentioned a parent to parent
counseling; one of them more specifically said that, “Right after diagnosis if contacts of
successful parents of CWA could be provided from service providers or if there could be a
process of getting introduced with them; knowing their struggles and success with their CWA
could be a motivation for parents with recently diagnosed autistic children.” (Personal
communication: Interview # 5, Date: July 1, 2013) One respondent expressed that empathetic
attitude and cooperation from family, relatives and neighbors would help to cope with the reality.

Above findings suggest that, in order to cope right after learning about child’s autism, parents felt
the need for support from family, relatives and experts in the field of autism which include
doctors, teachers and experienced parents of CWA. Expert advice and proper counseling can help
to cope when they first know that their child has autism.

Trained support to manage the CWA

Mother of a recently diagnosed CWA said, “Both normal and autistic children need regular
nurture, the difference is an autistic child needs trained support for management; either the
37
mother needs to get trained or a trained tutor can set planning for the daily management of the
CWA and someone from the family can follow that.” (Personal communication: Interview # 5,
Date: July 01, 2013) Since daily management of an autistic child requires more attention and
more effort, all the parents interviewed expressed the need for a support at home, either in the
form of a trained tutor giving quality time to the CWA or a support staff to share other chores of
the mother so that she can offer quality time to her child according to expert advice. Mothers from
low income group mentioned that if a relative with positive attitude could stay with the family
(e.g. mother, mother in law, sister, etc) and shared the chores and child management with the
mother, it would be of great help. Two parents said that, providing appropriate toys for the CWA
at home would help. One of them explained that it would be helpful, if an appropriate
environment could be provided at home, like a big room for the CWA with proper toys and
facilities as seen in child centers for autistic children as well as facilities of a trainer or therapist at
home.

Based upon above finding, it can be said that although parents talked about various ways for daily
management of the CWA they strongly felt the need for a trained support for the child to take care
of his/her special needs.

Supportive family members and awareness of the society

All the respondents expected support from the family; one of them said that the CWA should have
more love, more care than others; a father expects that even in his absence he wants his autistic
child to be treated well and taken care of by the family; a mother specifically mentioned that
fathers could participate in taking care of the CWA and siblings could participate and interact
more with the autistic child.

The participants wished that the society should provide positive support for CWA and their
parents by ensuring their security, raising awareness and organizing large scale campaign. In her
own way a mother said, “There should be more write up on autism in news paper; it should be
addressed in TV drama and movies. The Indian movie ‘Tare zameen par’ showed the story of an
autistic child who was different but knew many other things better compared to his peers. That

38
child was fine afterwards. Did you see any such drama or movie in Bangladesh?” (Personal
communication: Interview # 1, Date: June 19, 2013)

Above findings show that, parents of CWA expect participation from all the members of the
family in management of the CWA. They want the society to be properly aware about autism;
behave positively to a CWA; and allow autistic children everywhere just like they do it with
normal children.

Trained teachers & facilities at special schools and supportive regular schools
Four out of eight parents said that they expect the school to find out the special ability or interest
of the CWA and help them become capable of doing their own. Two parents expected training and
parent counseling; one parent mentioned need for proper awareness on autism among principals
and teachers of every school; he added, as government is now encouraging inclusion in
government schools, it needs to be effective. One mother said, “For an autistic child, a school
can arrange some special time with the teacher to take him/her to play; an extra time and effort to
make things done by the CWA, to give him instructions like, ‘now it is time to write’, ‘you will
have tiffin now’ or ‘it is play time’; instructions and helping him to do them with other kids
without much pressure would be helpful for the CWA.” (Personal communication: Interview # 2,
Date: June 23, 2013)
Summarizing the above findings it can be said that parents of CWA felt a need for trained support,
counseling and an effective guidance from schools about the special abilities of their CWA.
Moreover they expected that all schools should be supportive and treat CWA positively.

Government support directly for CWA and in raising autism awareness

Five participants mentioned that the Government should provide more schooling facilities for
autistic children, two participants mentioned more centers for diagnosis and counseling with
facilities like SBK and CNAC; one parent felt that effective training for teachers and institutes for
autistic children is a major requirement. Many parents emphasized the requirement of schools in
the community to avoid travelling far every day. More provision for vocational training was also
expected by a parent. Almost all the parents expressed the need for campaigning on a large scale
on autism; along with print media and electronic media such campaigns should be spread in ward
39
and district levels to reach rural people as well. One parent suggested that Government could
provide trained personnel for weekly/monthly home visit for autistic children. She said, “If an
expert on autism comes for home visit, observes us how we manage the autistic child and advises
accordingly; both parents can remain present during home visit and learn about the child
management, it definitely would be helpful.” (Personal communication: Interview # 2, Date: June
23, 2013)

One of the eight parents expressed his felt needs for direct facilities for autistic children in job
and in social security. He said, “Government should consider their (CWA) social security
seriously. As an example, if an autistic person has some deposit at a bank, that money is not safe
at all; someone might harmfully snatch it from him or might somehow convince him and take it
away. So the CWA need protection regarding this.” (Personal communication: Interview # 3,
Date: June 24, 2013) Medical and schooling facilities in the whole country were mentioned as a
felt need by one participant. Two parents expressed that management and schooling of an autistic
child is expensive; those with lower income level expect help from the Government in terms of
financial help, free schooling for CWA, and institutes for CWA at district levels. Provision for
part time jobs for parents, especially for mothers of CWA was also expected by a participant.

Based on above findings, it is seen that parents expect direct Government involvement in medical
and schooling facilities for CWA, counseling and home visit by experts, future support and
security for the CWA, and raising awareness on autism throughout the country.

Positive environment for the CWA

In response to parents’ expectation for a positive environment for CWA, mostly parents talked
about people around them with positive mentality, cooperative attitude and patience which might
come from raising awareness in a large scale. One of the participants cited an example and said,
“As a part of the campaign, if at parks notices can be put like ‘please behave well with special
need children’, such initiatives would help general people to remain aware and positive.”
(Personal communication: Interview # 5, Date: July 01, 2013) one of the parents also mentioned
transport facilities for CWA.

40
Mainly, all parents felt a need for positive and supportive people everywhere to provide a positive
environment to the CWA.

Expectation for the future of the CWA

A mother said, “My child knows many things which older children than her do not know, again
she cannot do many things that a 2-year old can do.” (Personal communication: Interview # 1,
Date: June 19, 2013) With such a feeling in mind, 75% of the parents informed that they would
support the child in whichever field he/she can achieve. Using an example of a television
campaign, a father mentioned that, “I do not know whether it would be possible, but if I see that
my son takes interest in sports, I would support him as I saw in TV how a disabled person
achieved well in paraolympic.” (Personal communication: Interview # 3, Date: June 24, 2013)

Above findings show that, most of the parents interviewed are hopeful about a good future for
their CWA; some of them are still confused; few of them mentioned that if the child would not be
able to do his own in future, they would have to leave money for the child.

Key summary findings

The study findings showed that parents of CWA started with an expectation for a normally
developing child and some of them sadly experienced that even with a smooth and trouble free
child birth, their child got autism. Most of the participants were unaware about autism before
detection in their child and became concerned when they noticed change in behavior or unusual
behavior in their CWA. All the respondents got their child diagnosed before the age of 5 years of
CWA; most of them thought that the diagnosis process was satisfactory. The two unsatisfied
parents expressed their frustration for lack of counseling during diagnosis.

Coping was difficult for parents of CWA, but mutual support between parents was of great help to
cope with the reality; expert advice and counseling were also helpful. Some parents reported
difficulties in coping due to financial support, family support and had constant tension for the
child’s future. Few parents had to migrate to Dhaka from rural areas due to lack of medical and
other support there. Migration to urban area due to child’s autism raised their cost of living.

41
The study found that the participants had less complaint on doctor’s visit and child’s food and
sleep habits; rather they faced challenges in child’s speech and interaction capability.
Performance of working parents in managing time for CWA varied between doing activities with
the child after coming home to just lying down and waiting for the child to respond. Most parents
with CWA reported that they are trying to face the challenge of raising a CWA and they have
started thinking positively.

Regarding parents’ situation in family and social context, most of the parents reported that they
had spousal support in terms of mental support or guiding and sharing the management of CWA
or sharing the chores. Other than few exceptions siblings do not interact or play with the CWA.
Usually, the younger siblings got pushed or hurt by the CWA if they approached to play, the older
siblings lack interest in playing with the CWA.

A good proportion of Parents of children with autism reported that their relatives were
sympathetic and supportive; in some cases relatives are supportive but the parents do not disclose
child’s autism; on the other hand few parents were blamed by relatives because of the birth of an
autistic child. Parents were mostly conscious about visiting neighbors as the autistic children
might create mess there, neighbors might get annoyed.
Other than few exceptions, most parents avoided taking their CWA out as they did not want to
face a negative situation or their child to make a mess or outside people to make a bad comment.
Almost all the respondents reported non-response of CWA to peers as well. The only respondent
that reported interaction of CWA with peers was a result of effort by parents, school and relatives.

Although doctors and therapists advise enrollment of the children with autism to regular schools,
most of the parents interviewed sent or were planning to send their CWA to special schools. The
participants shared various concerns such as adjustment in the class, toileting, fighting with peers,
wastage of money while sending the children with autism to schools. At special schools, parents
depend upon the guidance provided by trained teachers in managing their CWA. Parents reported
that, at special schools, socializing the CWA among peers is quite challenging. Parents who have
autistic children are usually nice to each other but parents of CWA sometimes face challenges
with parents of normal children.
42
While answering about felt needs, parents of CWA mentioned that, in order to cope right after the
diagnosis of child’s autism, support from the family, relatives and experts in the field of autism is
required. For daily management of the CWA they strongly felt the need for a trained support for
the child to take care of his/her special needs. Parents of autistic children also mentioned about
participation from all the members of the family in management of the children with autism.

Parents with CWA wanted the society to be properly aware about autism, behave positively to a
child with autism, and allow autistic children to go everywhere just like they do it with normal
children. At schools, parents of CWA felt a need for trained support, counseling and an effective
guidance about the special abilities of their children with autism. Moreover they expected that all
schools should be supportive and treat autistic children positively.

The participants expressed their felt needs as direct Government involvement in medical and
schooling facilities for children with autism, counseling and home visit by experts, future support
and security for the autistic children, and raising awareness on autism throughout the country.
Mainly, all parents felt a need for positive and supportive people everywhere to provide a positive
environment to the children with autism.

Discussion

The study started with an assumption that parents of CWA face challenges in raising the child,
especially during the process of diagnosis, management of CWA and also during schooling of
CWA. The study findings suggest that most of the assumptions are right but the extent of these
challenges differ with different contexts of the participants.

Experiences of parents at different stages of life of the CWA

Awareness about autism

Only few of the respondents who had better education and exposure had basic ideas about autism
before it was detected in their child. They learned it because of recent awareness raising activities
43
and their own exposure and alertness. Some others, even with a good educational background
heard the word autism but could not relate it to their child’s symptoms as they had less exposure.
Few of the parents got alert by their neighbors who had experience with autism, which led them to
go for a hearing test of the CWA and followed up by autism detection. Because of less awareness,
parents waited for a long time for the child to start talking; thought that they would talk naturally
as they saw or heard about children who had delayed speech. Majumdar (2011) explained a
similar finding of lack of awareness on autism among ‘primary stake holders’ in a study in
Bangladesh. Surprisingly, she explored that some parents even in medical profession admitted
very limited knowledge about autism. This surely shows a poor awareness situation on autism in
the country.
After detection of autism in their child, some parents were found to be still confused about the
concept of autism and the child’s management. Some parents thought that autism in their child
might be cured. Parents were also confused and were searching reasons for their children’s autism,
whether complications during pregnancy and delivery, or an absence of a family member with
whom the child was much attached, or high fever and seizure of the child. This highlights that
there is considerable lack of awareness among parents regarding autism that leads to delay in
seeking diagnosis and in availing services even after diagnosis. There is thus a great need for
improving awareness regarding autism in the community.

Diagnosis & Migration

The study found the detection of autism was done mostly before the age of 4 years for these
children with autism although most of the respondents were not aware about autism before its
detection in their children. It was observed that almost all of them first went through a hearing test
as the child had no/less speech.

Gray (1995) & Schall (2000) suggest that some parents experience a ‘straightforward autism
diagnosis’ of their children; some others experience long and frustrating time towards the
diagnosis. By the time they are confirmed about child’s autism, they develop a suspicion and
mistrust about the professionals (as cited in Solomon & Chung, 2012, p. 253). In present study,
most of the parents did not complain about the process of diagnosis; they rather felt confused even
after diagnosis due to lack of knowledge and awareness about autism. Complaints were only made
44
by two parents as mentioned in the narrative stories; one of whom was staying in semi urban areas
during diagnosis and migrated to Dhaka later; and the other parent found contradiction among
doctors during diagnosis and follow up sessions. The latter parent of CWA reported some other
difficulties of the child along with autism. Parents living in semi urban areas suffer a lot during
diagnosis of autism as these facilities are concentrated in Dhaka.

It was observed that the medical centers also provide management package for CWA and counsel
the parents with follow up; the researcher had an opportunity to observe few assessments and
counseling sessions at the centers; parents were found satisfied with the process but still confused
for further management of the CWA. The researcher was informed by the institutes that
Government has taken initiatives to set up similar facilities outside Dhaka. Spreading diagnostic
facilities throughout the country is still in its infancy stage; parents of CWA from other districts
are still taking lot of hardship of travel to take medical support from centers in Dhaka. Migration
to Dhaka due to child’s autism was seen because of above reasons. This issue was brought by the
parents who had migrated although it was not mentioned in research question. Autism caused
parents to migrate in urban areas which in turn increased their cost of living and made them live
without usual support from family and extended family.

Coping
Twoy, Connolly & Novak (2007) found in their study that parents of CWA are ‘resilient in
adapting’ while facing the challenges of raising an autistic child. Other than support from
extended families and close friends, these families used social support systems within the
families’ social network in a large part. Families with children with autism utilized mobilization
of family support to understand autism and to get more information about the disorder. Parents
gained information and suggestion mostly from persons in other families who faced similar
problems; took help from community agencies and programs who work on similar issues; and
sought advice and information from family doctors.

The present study experienced a rather weak situation for the respondents while coping with a
CWA which is confirmed by both findings and story narratives. Almost all the respondents
regardless of their gender or educational background got emotional while answering their feelings
45
right after the diagnosis, they were either crying or got silent. For some parents, their choked
voice, tone and facial expression confirmed the extent of difficulty in coping with the reality.
Although problems with language are common characteristics of autism, more troublesome
symptoms like tantrums, self destructive acts and inappropriate public behavior that are often
associated with it, made it exceptionally difficult to cope with (Gray, 2008).
It was seen that sometimes the centers where the diagnosis and follow up counseling are
conducted, inform the parents of CWA gradually about the child’s autism. Similar expectation
came from a respondent’s voice. A mother of a child with autism expressed that being confirmed
about her child’s autism by the doctors made her more vulnerable; she added that she would have
coped better if the doctors would start with counseling about her child management rather than
directly informing about autism. These findings highlight the importance of proper counseling by
professionals (Singhi, 1988).
Few of the respondents who do not have proper spousal support suffer a lot, both emotionally and
in managing the children with autism. Families who have mutual support and understanding
between couples cope better with an autistic child. It was also observed that parents with stronger
financial status coped better than those with less income.

Management involvement by stay-home parents and working parents

Mostly the mothers were interviewed as they often accompanied their child to the school, to
doctors and support centers where the researcher was being introduced with the participants by the
authority. Fathers were less available for interview due to their work outside home. Fathers were
only found accompanying the mother and CWA to the doctor.
It was seen that mothers are more involved with the children with autism than that of fathers.
Regarding schooling of the child, it is the mother who takes the child to the class, communicates
with the teacher, and learns how to tackle the CWA at home. Few fathers take the responsibility of
planning a guideline for the autistic children, but still the mother is responsible for everyday
management of CWA. These findings are similar to findings from other developing countries
where mothers bear the brunt of managing a disabled child (Singhi et al., 1990). It was also seen
that, a mother with higher education and a good job left her job after knowing that her child is
autistic. Some fathers share the child’s responsibilities in care taking after coming home;
sometimes father takes the responsibility of the normal sibling of CWA while mother takes the
46
full responsibility of care taking of the autistic child. When the mothers get more involved with
the CWA, they start learning more about autism; they become more aware and expert in handling
the child. Few mothers also reported that the child with autism only clings to the mother and were
not so attached with father or anyone else. Akhtar (2012) found similar involvement pattern of
parents at schools of autistic children, to some extent that fathers were not even aware of which
class the CWA is attending. These findings highlight the importance of involving fathers and
other family members in the management of such children (Singhi, 1990).

Financial pressure in the management of a CWA was also mentioned by parents from every
income group. While mentioning the requirements for management of the CWA, a father
specifically mentioned that the cost involved with such arrangements is hard to afford by
moderate to low income earning parents. It was also seen that lack of financial support make
parents less interested to learn about autism, they feel less motivated. Goin-Kochel, Mackintosh &
Myers (2006) also stated that the process of diagnosis tends to be longer and more frustrating for
parents with lower levels of education and income (as cited in Solomon & Chung, 2012, p 253).
Similar findings have been reported from India wherein parents of disabled children experience
considerable financial stress (Singhi et al., 1990). The parents even had to count money for the
special schooling of the autistic children, and also the transport cost; they had a feeling of wasting
the money if the CWA does not improve. In such situations, child’s level of autism is also a point
to consider; if the child has mild autism, parents feel motivated to put effort and spend money for
the development of the children with autism.

It was also observed that, although parents mentioned that having a helping hand at home would
make it easier for the mother to take care of the autistic children very few of them really have a
helping hand. It might be because of the excess cost of involved with a helping hand or
unavailability of a helping hand in urban households.

47
Situations in family and social context that shaped perception of parents

Spousal support was seen an extremely important issue for parents of children with autism.
Although mothers are mainly responsible for the management of the CWA they expressed the
need for both emotional and practical support from their spouses. Families with an autistic child
where both parents are active for the child’s developments were seen confident and performing
better. Whereas, one of the mother as expressed in her narrative story that her family life has
become haphazard as her husband is not supportive for the child with autism and as she does not
get any emotional support from him too. Gray (1993) supports such situation. He stated that,
living with an autistic individual is stressful and that can affect the psychological well-being of
family members; it can also create conflicts among family members. Another survey on parent
perception on divorce and autism suggests that, raising a CWA might add some tension to an
already troubled relationship. Divorce does not happen solely because of child’s autism, but for
many parents child’s autism did contribute as a reason for divorce (Grosso, 2011).

Siblings’ support was not seen that much except in one family. This family including the sibling
of the CWA works as a team for the development of the CWA. This seems like a model family for
a CWA. The adults play an important role to encourage other children of the family to play and
interact with CWA. Gray (1993) explored a more positive side of the situation with siblings of the
CWA; most parents reported that the siblings of CWA were of great help in looking after the
CWA; those siblings mainly acted as minders and baby-sitters when the parents were out of home.
The study has highlighted the importance of relatives support in the management of CWA.

Relative’s support - Although most of the parents of CWA reported having relatives sympathetic
to their situation, some of them did not inform the relatives about child’s autism as the relatives
would not understand it, but they get mental support from some close relatives to cope with the
daily stress in handling the CWA. In a recent study Twoy, Connolly & Novak (2007) also found
that parents of CWA received support from close friends and extended families. They share
difficulties within extended families and also share concerns with close friends. The only one
participant from an extended family complained about lack of awareness and proper involvement

48
of the other family member towards the CWA and his parents in terms of sharing regular chores
and taking care of the child and the mother.
On the other hand, the parents who had to migrate to Dhaka for child’s autism expressed the need
for a relative to stay with them. The working mother who managed her transfer to Dhaka after
getting her son diagnosed autistic and advised by the doctor had to live alone with the CWA as her
husband was posted to another district. This mother had to rely on a maid to take care of her
autistic child when she was at work and she was not satisfied with that. She was concerned about
a lack of effective support for the CWA after school when she is not at home.

Neighbors and outsiders - Twoy, Connolly & Novak (2007) stated that families with children
with autism restrict themselves from socialization within the community as family, friends,
teachers and the community could not understand the characteristics and behavior of the CWA.
Present study revealed similar findings that parents of CWA do not share their problem with
neighbors in order to avoid undesirable circumstances. As people around them are not well aware
about autism, they do not feel comfort in disclosing the truth to others. They think that sharing the
problem with a less aware person would make them uncomfortable as they might comment
something that would be painful and unsupportive for the parents of autistic children.

The study also found parents avoiding taking the children with autism to social gatherings, so that
they would not face negative situations that could arise from child’s inappropriate behavior or
people’s bad comment. Gray (2008) explained that, parents of autistic children often face hostile
or insensitive attitude from outside people when their child has an inappropriate behavior. This
problem may even be aggravated by the normal physical appearance of these CWA. On the other
hand, Higgins, Bailey & Pearce (2005) explained that parents may feel themselves less confident
in handling the CWA exhibiting his own behavior (i.e., repetitive behavior, withdrawal behavior
and/or misbehavior) which make their social outings with the child difficult and challenging (as
cited in Twoy, Connolly, & Novak, 2007, p. 253).

Schooling
The findings of this study show a difficulty in enrolling autistic children in regular schools. The
study did not find any parent sending their CWA to a regular school although these parents were
49
advised by the doctors to send the autistic children to regular schools. Only one of the eight
parents was planning to set up a regular school in the semi urban area he lives, so that his CWA
can mix with normal children. At special schools, parents are mostly satisfied as they think that
their CWA are being taught by trained teachers. Again, some of the parents hope that the CWA
would be able to go to a regular school after some development in speech and behavior.

Parents hardly reported about peer interaction at special schools since most of the CWA do not
interact. Although it looks like a trouble free situation where peers do not fight, actually even in a
school environment peer interaction remains absent. Trawick-Smith (2006) stated that, according
to the socio-cultural theory of Lev Vygotsky (1962), the concept of ‘zone of proximal
development’ indicates that stimulation from an adult or more capable peer can assist a child to
learn a skill or acquire knowledge of greater difficulty than achieving it alone (as cited in Akhter
2012, p. 4). The theory confirms the need for schooling of CWA with normal children.

Challenges that one parent of CWA faced at regular schools were mainly due to lack of
knowledge and training of the school teachers and school authority on autism. Although they
allowed the autistic child to sit in the class, they hardly knew how to handle a child with autism.
Another obstacle came from a parent of a normal child. Teachers’ unfamiliarity with wide range
of behaviors associated with autism results in misunderstanding about the student with autism;
students with ASD are punished because of their disability, especially when these students show
superior skills in some areas and lack ability in simpler topics developmentally (Starr, Foy,
Cramer & Singh, 2006).

Most of the parents mentioned that distance from the school is important for them, traveling far
for going to school every day is difficult for them. This reflects the small number of schools for
CWA. The study also found a parent concerned about the closure of her child’s school. The school
announced that due to some technical problems in the school building they have to close it though
on parents’ strong demand they were still open during the time of interview. The mother was
extremely worried and expressed her concern. This again proves the scarcity of schools for
autistic children.

50
Felt needs
The experiences, situations and challenges faced by parents of children with autism shaped their
felt needs in raising their autistic children. Their experiences made them realize what the issues
are that needed to be taken care of by the family, society, schools and the nation as a whole to help
living with a child with autism.

From the family

Higgins, Bailey, & Pearce (2005) mentioned that families with CWA reported lower family
functioning in terms of adaptability and cohesion, and lower marital happiness compared to
families with normal children (as cited in Solomon & Chung, 2012, p 251). Similar situations
called for the need of family and spousal support in the present study. Since the nurturing of a
child with autism requires much more time, attention and effort compared to normal children,
parents get exhausted and sometimes frustrated. Moreover, they have their constant unhappiness
which is hidden sometimes because of the child’s lifelong disorder; they have their worries for the
future of the autistic child. In this circumstance, firstly, parents of CWA expressed the need for a
mutual support from spouse; both parents require emotional and practical support from each other
to make the journey easier with a child with autism.

From society
The participants expected the society to be compassionate towards CWA. They want their autistic
children to be treated by the society just like they do it with normal children. Parents demanded
that CWA should be allowed positively everywhere; people should not make any bad comment
about them; the society should provide their safety; raising social awareness about autism and
social campaign on positive behavior towards autistic people is a major requirement.

From schools
Regarding schooling of the CWA, parents felt the need for an appropriate school in the vicinity. In
order to provide special help for the CWA, the parents are getting their autistic children enrolled
in special schools, but they have a hope that with development of the CWA they would enroll the
child in regular schools. There is a felt need that the regular schools should provide a positive
environment for CWA. Starr, Foy, Cramer, & Singh (2006) also explained that parents of CWA
51
prefer a ‘full inclusion’ philosophy or insist on sending their children to general education setting
where educational team consisting of parental membership decide together the educational goals
and strategies to meet the child’s need. Effectiveness of such effort depends upon the presence of
an effective education team, classroom teachers’ understanding of disability, teachers’ knowledge
of implementing effective interventions and effective parent-teacher collaboration. In Bangladesh
context, Akhter (2011) found that teachers accepted the concept of inclusion, but they preferred
supportive inclusion with a special unit option in the school premises.

From the Government

The parents of CWA shared that management and schooling of an autistic child is expensive; it is
difficult to afford by moderate to low income earning parents. They felt the need for Government
intervention in medical and schooling facilities for CWA throughout the country. Parents of CWA
living outside Dhaka have to face hassles of traveling far several times for diagnosis and follow up
treatment and counseling for CWA. In order to make this process faster and easier, there is the felt
need for diagnostic and related facilities in other districts of the country too. The National Autistic
Society for NIASA (2003) asserted that both parents and professionals recognized benefits of
early detection of ASDs (as cited in Mockett, Khan, & Theodosiou, 2011, p. 2).

Moreover, Mockett, Khan, & Theodosiou (2011) stated the importance of earlier diagnosis of
ASD which would facilitate earlier educational, social and medical support. Reducing the waiting
time between referral and intervention is also essential. Parents participated in the present study
also expressed a need for regular counseling and home visit by trained personnel provided by the
Government. Along with this, Parents of autistic children mentioned the need for Government
intervention in widespread awareness raising programs for autism too.
Moreover, the parents of CWA have their worries about the future of their autistic child. They
want their child to become independent in future, but they have much concern about this. With
such worries in mind they felt that Government should provide support for CWA in terms of
vocational training, appropriate job opportunity, security and a positive environment for living.

However, the above discussion portrayed the picture where struggles of parents of autistic
children aggravate due to lack of knowledge and awareness about autism, and lack of support for
52
autistic children. On the other hand, the new knowledge also came out of the findings that the
mothers gained tremendous strength in managing their autistic children. Gradually they learned to
manage their frustration of having a CWA; accepted the reality; and then positively and actively
started working for their autistic children. Strength of these mothers could be a motivation for
other parents of children with autism.

Conclusion

The present study intended to reveal the perception of parents of CWA by knowing their
experiences, situations and challenges which actually shaped their perception. Based upon their
perception these parents also developed some felt needs in raising their autistic children. As
parents are the main stakeholders in the journey with their autistic child, their experiences made
them feel the requirements that would be most supportive for CWA and for their caregivers.

In order to reach perception and felt needs of parents of children with autism, eight in-depth
interviews were conducted to answer the research questions and to fulfill four specific objectives,
exploring the experiences of the parents of CWA during different stages of their child’s life;
shedding light on the situation that parents of autistic children face in the family and in the social
context; revealing the challenges faced by parents during schooling of their child; and finding out
the felt needs of parents and their expectations from the community, educational settings, and
from the Government.
The study explored significant lack of knowledge and awareness about autism, even after
diagnosis; parents satisfied with the diagnosis process if they are staying in the capital; difficulties
in coping little eased with family support and financial support; migration for the treatment and
follow up of the CWA; society’s unawareness causing isolation of parents of CWA; difficulties in
regular schooling; parents’ felt needs to receive counseling, raise awareness, effective family
support, significant number of schools for children with autism, and future support for them. The
study also found mothers’ strength in managing the child with autism which is motivational for
other parents.

53
This research started with some assumptions that parents of CWA may find challenges during
diagnosis, management and schooling of the autistic children. Most of the assumptions proved
right except for diagnosis. Parents mostly are satisfied with the diagnosis process, those who are
not satisfied sometimes associated with other factors.
To sum up, from the analysis, it can be concluded here that perception and felt needs of parents of
children with autism need to be prioritized in order to raise their strength in raising their CWA.
This would definitely help development of children with autism along with their parents living an
acceptable life with autistic children.

Recommendations

After observing the study findings, the study recommends,

 Further research with larger random sample and with different population group, for
example with population from both lower and higher socioeconomic groups

 Counseling support for parents of CWA in a regular basis and country-wide easily
available. Support centers for parents of autistic children that would provide referral,
advocacy support with relevance to parents’ needs

 Networking among parents’ of children with autism would be supportive for them

 Collaboration among professionals, for example, when a child visits a doctor for autism
detection, the doctor should refer to professionals, like therapists and relevant persons for
schooling

 Programs at Government and Non-Government level for raising awareness about autism at
family level, community level, for school authority and society level. Policy formulation
requires ensuring enrollment of CWA in all schools, trained teachers and facilities for
autistic children at schools, country-wide diagnostic and follow up centers for children
with autism

54
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 Annex 1

In-depth Interview Questionnaire

Research title: Perception and Felt Needs of Parents of Children with Autism

Date/time started: Date/time completed:

SSection A: Demographic information

1(a). Parent’s name: 2(a). Child’s name(optional):

1(b). Age: 2(b). Age:

1(c). Gender: 2(c). Gender:

Address: Phone No.

2. Location: (Please tick one)

Urban Semi urban Others (specify)

3. Marital status: (Please tick one)

Married Separated Divorced Widow/Widower

4. Education level: (Please tick one)

SSC HSC Graduation Masters Others (specify)

5. Occupation: (Please tick one)

Service Business Self-employed Home-maker Others (specify)

6. Monthly income: (If participant answers willingly)

__ Range: Tk. ---------------- to Tk. ----------------------_

7. Number of children:

8. (a). Name of child’s school (if attending)

(b). Number of years attending school: years__________ months

9. Type of family: (Please tick one)

Nuclear Extended Joint Others (specify)

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Section B: Experiences of parent at different stages of the autistic child’s life

1. What was your expectation or dream about the child before he/she came into your life?

2. How was your experience during the birth process of your child?

3. How was your experience with your child before you knew that he/she has autism?

4. Did you know anything about autism before your child’s autism was detected? If yes,
what did you know?

5. How and when did you come to know that your child has autism? Does your child have
any other disability/disorder with autism? If yes, please explain.

6. What was your experience during detection and diagnosis of your child with autism?

7. Did you think that the diagnosis could have been conveyed in a better way to you? If
so, how?

8. What were your feelings immediately after the diagnosis?

9. How did you start coping with the reality? Who helped you to cope?

10. Do you think that you should have had more support during the process of diagnosis?
What are the supports you think could have helped you more?

11. How often do you have to take your child to a doctor and why?

12. How often do you have to take your child to any other support
centre? Please share the experiences.

13. Does your child talk? How do you interact/communicate with

him/her?

14. Do you have concerns regarding your child’s food habits or

sleep?
15. If you are a working parent, how do you manage your time for
care giving to your child?

16. Please share your present feelings after living all these years
with your autistic child.
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Section C: Situation faced in family and social context

1. How did your spouse feel when he/she learnt about the diagnosis of
autism in your children?

2. What are your spouse’s attitudes toward the child with autism?

3. How much does your spouse contribute in care taking for the child with autism?

4. How did the siblings react initially when the symptoms of autism were visible?
What are the siblings’ attitudes toward the child with autism in terms of
interaction, play, sharing etc.? Please describe. (Applicable for children with
siblings)

5. How did the other members of the family react initially after knowing
about autism? (Applicable for extended/joint family)

6. What are your relatives’ attitude toward you and your child with autism
when they visit you?

7. Do you visit your relatives with your child with autism? What kind of
situation do you face there? or, If you do not take your child there, why
not?

8. Do you visit your neighbor with your child with autism? How does your
neighbor behave with you and your child at their places? Please explain the
situation. or, If you do not visit there with the child, why not?

9. Do you take your child outside of home (e.g. for shopping or to the
playground or any social gatherings)? How do people behave or react to
this? Please explain or, If you do not take the child outside of home, why
not?

10. What are the reactions of other children/peers towards your child with
autism? Please share a situation.

Section D: Challenges regarding schooling of the child

1. Has your child with autism started schooling? or what is your planning for
his/her schooling?

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2. Which type of school is he/she enrolled now or going to be enrolled? Why did
you select the present school? or Why are you thinking to send him/her to that
school? Do you think that the school has the required facilities to support
children with autism?
3. What were the issues that concerned you when you first wanted to send him/her
to school? or Do you have any concern for sending him/her to the school?
4. Does your child go to school willingly? What does he/she like most about the
school?
5. Do you know and keep a track of what your child is learning at school?
6. How does the teacher share your child’s learning progress or difficulties in the
school?
7. What support do you get from the teacher and school authorities?
8. How do the peers at school behave with your child? Do you have any concern
regarding that?
9. How do the support staffs of the school behave with your child? Please explain.
10. Did you face any challenge from other parents at school? If yes, what are the
challenges that you faced or are facing from other parents at school?
11. What is your expectation for your child’s schooling? How can it be achieved?

Section E: Expectations and felt needs of the parents

1. What kind of support do you think would be useful for parents to cope with the
reality right after they know that they have a child with autism?

2. What type of support do you need to manage your child? How do they
help/support?
3. What social support do you expect while you are out of home with your child
with autism?
4. As a parent of a child with autism, what is your expectation from the
family/School authority/society/ Government etc.?

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5. What is your idea about some support that the parents should receive in order to
deal with autism for a lifetime? From whom would you expect this support?

6. What do you think should be done to create a positive environment for autism?

7. What are your thoughts/expectations regarding the future of your child with
autism?

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Annex 2
Consent Form for the Parents

Title of the Research: Perception and Felt Needs of Parents of Children with Autism
Principal Investigator: Sanjana Jahangir

Dear Parent
Purpose of the research
I am conducting this research as a part of my Masters Degree requirement from the
Institute of Educational Development (IED) - BRAC University in order to explore
perception and felt needs of parents of children with autism.

Expectation from you

If you agree, you will be expected to share your feelings, views, experiences and
expectations in detail regarding your life with your child with autism. The in-depth
interview may take 2 to 3 days, depending upon your response and availability.

Risks and benefits

There is no risk to you for participating in this study; directly or indirectly parents and
children with autism may be benefited in future if any intervention program incorporates
your perception and considers your felt needs in raising children with autism.

Privacy, anonymity and confidentiality

All information collected from you will remain strictly confidential. I would be happy to
answer any of your queries about the study and you are welcome to contact me.

Future use of information

Some of the information collected from this study may be kept for future use. However,
in such cases information and data supplied to other researchers, will not conflict with or
violate the maintenance of privacy, anonymity and confidentiality of information
identifying participants in any way.

Right not to participate and withdraw

Your participation in the study is voluntary, and you are the sole authority to decide for
and against your participation in this study. Refusal to take part in the study will involve
no penalty.

If you agree to my proposal of participating in my study, please indicate that by putting

your signature in the specified space below.

Thank you very much for your cooperation.

Signature of Investigator Signature of Participant

Date: Date:

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