A Study On Experiences Amp Challenges Of Mothers Of Children With Autism In Dhaka City Course No. 1004 Course Title-Thesis

A Study on Experiences & Challenges of Mothers of Children
with Autism in Dhaka City
Course No. 1004
Course Title- Thesis
Presented by
M.S.S. 2nd
Semester
Exam Roll: 3495, Class Roll: 556
Reg. no: Ha-3677
Session: 2013-2014
Institute of Social Welfare and Research
University of Dhaka
March, 2015

Dhaka University Institutional Repository
ii
Acknowledgements
The completion of thesis within a short period of time accompanied by other course works was
really a challenging task. However, in conducting thesis those who helped me I am thankful to
them. At first, I would like to express my gratitude to the Academic Committee of Institute of
Social Welfare & Research, University of Dhaka for allowing me to conduct this thesis that has
contributed much to enrich my research potentialities. This thesis entitled A study on
Experiences and Challenges of Mothers of Children with Autism in Dhaka City - is the first
attempt of my academic life.
I would like to express my deep acknowledgement to my academic supervisor for his sincere
direction and keen observation from the very beginning helped me to finalize the thesis. It was
an opportunity to learn how to conduct a study.
I am extremely grateful to the Director of Institute of Social Welfare & Research who has
evaluated my potentialities and encouraged me to conduct the thesis. I am also very thankful to
the Dhaka University Central Library, Public Library, Institute Seminar, and IER Library of Dhaka
University for providing me with the relevant books on the thesis topic.
I would like to express my gratitude and respect to the authority of Society for the Welfare of
Autistic Children (SWAC) and Ananda Niketon European School (ANES) for kindly giving me
permission to collect data from their institution.
I immensely indebted to my respondents (Mothers of Children with Autism) who gave me full
support at the time of interview. Though many questions were related to their personal life, but
they all co-operated me to the maximum extent.
Last of all my special thanks goes to my mother, my family and my friends who supported me
lot in conducting this study.
With Thanks
M.S.S. 2nd Semester
Roll no. 3495, Class Roll: 556
Session: 2013-2014
Institute of Social Welfare and Research
University of Dhaka

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Abstract
Autism Spectrum Disorders (ASDs), also referred to as Pervasive Developmental Disorders
(PDDs), are characterized by deficits in verbal and nonverbal communication, social interaction,
and repetitive or restricted interests and behaviors. To date, much of the literature on ASDs has
been conducted from a western perspective, although interest in ASDs from a global
perspective has dramatically increased in recent years. In Bangladesh just a few years back,
people were merely aware about disability with Autism. Although a few researches on ASDs
have been conducted in Bangladesh, interest in ASDs from a global perspective has dramatically
increased in recent years. However, no research has been conducted in this area. The nature of
qualitative methodology makes it best suited for capturing the nuances and complexity of the
psychological phenomenon underlying the experiences being studied. These experiences help
to capture and reflect the ways in which culture impacts these experiences.
The purpose of this study was to examine the lived experiences and challenges of mothers
raising children diagnosed with an ASD in Dhaka City using a qualitative research approach. The
prevalence is currently rising in many countries around the world. Caring for and educating
children and young people with this condition places challenges on health care, education and
training programmers. The government is going to count the number of autistic children in
Bangladesh. About 10% of Bangladesh's people are challenged of those, 1% is estimated to be
autistic, amounting to around 1.5 lakh people. Many children diagnosed with ASDs in our
country have very limited access to educational settings, and an abundance of barriers to
treatment exist. As such, there is much to be gained from studying mothers experiences with
their child s early development and their initial concerns for their child s development, their
experiences with the diagnostic process, the perceived impact of raising a child on the
spectrum for themselves and their family, their daily living experiences, their experiences
accessing supports and services, their vision for the future, as well as any advice they would
give to mothers of children who were recently diagnosed. To this end, the experiences of 20
mothers raising a child diagnosed with an ASD and living in Dhaka City were captured through
open-ended interviews in this study.
The results of this study found a number of notable themes to emerge from interviews with
mothers raising a child on the spectrum and living in Dhaka City. In particular, a number of
mothers reported a typical pregnancy, with a slightly higher Cesarean-section rate than would
be expected and fairly typical early development noted in the child. Mothers reported first
noticing a number of different developmental concerns, most especially language delays, lack

iv
of eye contact, and unusual social interactions, although a number of mothers were not the
first to notice these issues.
Most mothers reported a number of stressors, in particular difficulties finding respite care,
appropriate educational settings for their child, as well as coping with the tremendous financial
burden they had in raising their child. They reported their lives to be busy, especially because
they were dealing with their child s challenging behaviors on a daily basis. The mothers all
varied greatly as far as the advice mothers would give to parents of children recently diagnosed
on the spectrum, with some saying to have hope or keep their faith and others noting the
importance of being the advocate and structuring the child early.
This study not only provides a better understanding of the experiences of mothers raising a
child on the spectrum in Dhaka City but also provides empirical support for their advocacy
efforts and the need for increased supports and services for these families. It also serves to
inform a number of ecological, systemic factors impacting families raising a child on the
spectrum in Dhaka City and a framework for other studies who seek to also understand the
various types of experiences that families of children on the spectrum have.

v
Acronyms
ABC = Autism Behaviour Checklist
ADHD= Attention Deficit Hyperactivity Disorder
ANES = Ananda Niketon European School
AS = Asperger s Syndrome
ASDs = Autism Spectrum Disorders
CAI = Computer Aid Instruction
CBR = Community Based Rehabilitation
CDD = Childhood Disintegrative Disorder
DCC = Dhaka City Corporation
DIR = Developmental, Individual Difference, Relationship-based
FGD = Focus Group Discussion
HFA = High Functioning Disorder
IQ = Intelligence Quotient
NSAC = National Society for Autistic Children
PDDs = Pervasive Developmental Disorders
PDD-NOS = Pervasive Developmental Disorders Not Otherwise Specified
PECS = Picture Exchange Communication System
SBRS = Social Behavior Rating Scale
SPSS = Social Performance Survey Schedule
SWAC = Society for the Welfare of Autistic Children
TEACCH = Treatment and Education of Autistic and related Communication-Handicapped
Children
WCC = Weak Central Coherence
WHO = World Health Organization

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Table of Content
Page no.
Acknowledgements i
Abstract ii
Acronyms iv
Chapter One: Introduction 1-8
1.1 Background 2
1.2 Statement of the Problem 3
1.3 Rationale of the Study 4
1.4 Objectives of the Study 5
1.5 Operational Definition of the Concepts 5
1.6 Methodology of the Study 6
1.6.1 Main Method 6
1.6.2 Area of the study 6
1.6.3 Population and Unit of Analysis 6
1.6.4 Sampling and Sample Size 6
1.6.5 Data Collection Techniques 6
1.6.6 Data Processing, Analysis and Interpretation 7
1.7 Ethical Consideration 7
1.8 Limitations of the Study 7
Chapter Two: Review of Literature 9-17
Chapter Three: Autism: Conceptual & Theoretical Framework 18-41
3.1 Autism Spectrum Disorder (ASD) 19
3.2 Types of ASD 20
3.3 Symptoms of ASD 22
3.4 Causes of ASD 24
3.5 Process of Autism Diagnosis 27
3.6 Treatment of ASD 29
3.7 Autism in Bangladesh 33
3.8 Theories Related to Autism Spectrum Disorder 35
Chapter Four: Presentation of Case Studies and FGDs 42-75
4.1 Presentation of Case Studies 43
4.1.1 Case Study-0ne 43
4.1.2 Case Study-Two 44

7
4.1.3 Case Study-Three 46
4.1.4 Case Study-Four 48
4.1.5 Case Study-Five 49
4.1.6 Case Study-Six 51
4.1.7 Case Study-Seven 53
4.1.8 Case Study-Eight 55
4.1.9 Case Study-Nine 56
4.1.10 Case Study-Ten 57
4.1.11Case Study-Eleven 58
4.1.12 Case Study-Twelve 59
4.1.13 Case Study-Thirteen 60
4.1.14 Case Study-Fourteen 62
4.1.15 Case Study-Fifteen 63
4.1.16 Case Study-Sixteen 64
4.1.17 Case Study-Seventeen 65
4.1.18 Case Study-Eighteen 66
4.1.19 Case Study-Nineteen 68
4.1.20 Case Study-Twenty 69
4.2 Presentation of FGDs 70
4.2.1 FGD-One 70
4.2.2 FGD-Two 73
Chapter Five: Overview of the Study 76-80
Chapter Six: Problems & Recommendations 81-85
6.1 Problems and Barriers of the Parents of Children with Autism 82
6.2 Recommendations 84
Conclusion 86
References 87-88
Appendices 89-91
Appendix-A: Guideline for Case Studies and FGDs 89
Appendix-B: Map of the Study Areas 91

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Chapter One: Introduction
1.1
1.2
1.3
1.4
1.5
1.6
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1.7 (
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Chapter One: Introduction
1.1 Background
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GH1;019. IJKK4) describes autism as the invisible disability. There are no facial anomalies or
outward evident signs that a child is affected by this distressing neurological disorder.
Autism is a neurodevelopment condition which is usually diagnosed in the first 3 years of life
by a deficit in social reciprocity, language and communication and behavior. It has been
estimated that there is 1 in 1000 children who is diagnosed as having autism. The causes can
be separated into psychological, neurological, genetic and environmental. The number of
people diagnosed with autism has been increasing dramatically since the 1980s, partly due
to changes in diagnostic practice and government subsidized financial incentives for named
diagnoses; generally parents become concerned when their child has delays in speech
development, limited social relatedness, and restricted interests and activities. The child
may avoid direct eye contact and exhibit odd behaviors. There may be unusual motor
movements such as hand flapping, self stimulation or walking on toes. Although the cause of
autism is unknown, it is generally believed that etiology may be due to multiple factors.
Many genetic, environmental, metabolic and neurological conditions that affect the normal
functioning of the brain are being researched.
Autism is such a developmental disability which has a great impact on the family s
adaptation and also social functioning. Both mothers and fathers may be impacted by
raising a child with significant needs. But, in particular mothers of children diagnosed with
an ASD tend to do more caregiving, engage in less leisure activities, and experience
significantly more stressful events than mothers of typically developing children among
other things (Smith, Hong, Mailick Seltzer, Greenberg, Almeida, Bishop, 2010). This is why
researcher wants to explore the lived experiences of mothers raising children diagnosed
with an ASD.
The word Autism is newly introduced and it is flourished in Bangladesh which is
differentiated from the other disabilities as spectrum disorder with multiple characteristics
of behavior and neurological mechanism. Autism Spectrum Disorders (ASDs), also referred
to as Pervasive Developmental Disorders (PDDs), currently encompass several disorders,
most notably Autistic Disorder, Asperger s Syndrome and Pervasive Developmental
Disorder-Not Otherwise Specified. ASDs are characterized by deficits in verbal and
nonverbal communication, social interaction, and repetitive or restricted interests and
behaviors (National Institute of Mental Health, 2008). Parents with autistic children have

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Parents of autistic children are to be at a higher risk for depression, social isolation and
marital discord. Some parents go through periods of disbelief, deep sadness and depression
and self-blame and guilt whereas others experience helplessness, feelings of inadequacy,
anger, shock and guilt. Autism affects girls and boys of all races and in all geographic regions
and has a large impact on children, their families, communities and societies.
The prevalence is currently rising in many countries around the world. Caring for and
educating children and young people with this condition places challenges on health care,
education and training programmers. The government is going to count the number of
autistic children in Bangladesh. About 10% of Bangladesh's people are challenged of those,
1% is estimated to be autistic, amounting to around 1.5 lakh people. Social stigma poses a
major challenge in the early diagnosis of autistic children. Due to lack of understanding of
autism, people are negligent about treating autistic children until it is too late. Bangladesh
needs to train community healthcare providers on how to understand signs and symptoms
of autism. Many parents don't want to face the reality that their children are autistic. They
often feel shame to disclose it to others in the early stages. Relatives and family members
should show respect to the suffering of such parents. In Bangladesh, treatment and
schooling for autistic children are expensive, which is a burden for a family that has to take
care of other children. In this backdrop, the study has been proposed to make an in-depth
inquiry about Autism Spectrum Disorder (ASD) and the experiences of mothers raising a
child with autism in the perspective of Dhaka City.
1.2 Statement of the Problem
In Bangladesh just a few years back, people were merely aware about disability with Autism.
Only the parents are mainly concerned about their children with Autism in urban areas. But,
at present the situation is improving gradually throughout the country. An intensive analysis
of the situation of disability in general and autism in particular, over a period of six months-
involving a cross-section of experts and stakeholders, both Government and private, reveals
that prevalence studies are very few in number and varied in design. Prevalence by type of
disability reveals that the developmental disabilities including Autism have been completely
neglected (except intellectual disabilities). The only study in Bangladesh which included
Autism, showed a prevalence of Autism to be 0.84% among children. This data suggests that
there may be significant under identification of children on the spectrum living in Dhaka.
Although a few researches on ASDs have been conducted in Bangladesh, interest in ASDs
from a global perspective has dramatically increased in recent years. However, no research
has been conducted in this area, and further exploration of cultural conceptualizations of
ASDs is needed. This study will focus specifically on Dhaka City. Dhaka is in its infancy in
terms of creating a standardized diagnostic process as well as government programs
designed to provide services to newly diagnosed children. As such, there is much to be

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gained from studying the current process and families experiences with the process in
order to better inform efforts toward improvement.
Despite the growing number of identified children with ASDs living in Dhaka, few schools
exist in Dhaka to serve children with ASDs and the schools where staffs have been trained in
meeting the needs of this population are overcrowded. There currently are no fully state-
funded schools or therapy centers designed to support students on the spectrum. Ministry
of Social Welfare on behalf of Bangladesh Government is playing some significant roles for
providing education to the students with disabilities as well as Autism in accordance with
their special needs. The constitution of Bangladesh has commitment in its article 15(D) to
improve disability and to help the poor, helpless, deprived children and adolescents with
disabilities. Children with mild disabilities enrolled in the primary schools totaled 53,303 of
which 30,142 are boys and 23,161 are girls in 2008.
Although progress has been made over the past several years, primarily through the work of
parent advocates, awareness of ASDs and access to proper treatment for related
symptomology is still very young within the country. Little is understood about the
diagnostic process experienced by parents seeking diagnosis for their children in Dhaka.
Even less is understood about the impact of the diagnosis on the lived experiences of
families.
1.3 Rationale of the Study
Autism is a fairly recent discovery in Bangladesh. Medical based diagnosis system in
Bangladesh has started to identify autistic children by the child development of Government
child hospital since 2001-2002. There has not been conducting any significant study on the
ASDs and the treatment for children with autism is not enough to back up the situation. In
this perspective, this study will provide a significant phenomena on the experiences and
challenges of mothers raised children with autism and the available services. The researcher
wants to explore in this field in order to get insight knowledge on behalf of the journey of
the mothers of a special child.
This research will make a number of contributions to the understanding of the experiences
of mothers raising a child diagnosed on the spectrum to the field. First, although research
examining the experiences of families, and in particular mothers, raising youth on the
spectrum has begun to take shape from various regions of the globe, no literature exists to
describe the experiences of families living in Dhaka City. This study provides a glimpse into
how some members of this culture may experience raising a child on the spectrum. To the
knowledge of the researcher, Dhaka has yet to conduct informal or formal research of this
kind. It is hoped that once this research will be shared with other researches, it may serve to
better inform the need for services and supports for families raising a child diagnosed with

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1.4 Objectives of the Study
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1. To identify how their child come to be diagnosed as having an ASD
2. To know the supports and services the child and family have received
3. To study their stress and coping with children with autism
4. To know the impact of autism on family life
5. To know their recommendations to overcome the problems of the parents and family of
children with autism
1.5 Operational Definition of the Concepts
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Autism Spectrum Disorders (ASDs), also referred to as Pervasive Developmental Disorders
(PDDs), is described as encompassing several disorders most notably Autistic Disorder,
Asperger s Syndrome, and Pervasive Developmental Disorder-Not Otherwise Specified. ASDs
are characterized by deficits in verbal and nonverbal communication, social interaction, and
repetitive or restricted interests and behaviors (National Institute of Mental Health, 2008).
™—š“•
Mothers are, for the purposes of this study, defined as women living in Dhaka and having a
child diagnosed with an Autism Spectrum Disorder.

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For the purposes of this study, children refer to the children and adolescents with autism
between the ages of 4 years to 14 years of age.
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For the purposes of this study, Dhaka City will cover the entire area under the jurisdiction of
Dhaka City Corporation.
1.6 Methodology of the Study
©ª6.1 Main Method
Qualitative research approach is used to conduct the study. This study is based on case
study and focus group discussion (FGD) method.
1.6.2 Area of the study
All area of Dhaka City Corporation (DCC) has been considered as the area of the study. But
here, two autistic institutions in Dhaka City are selected for the convenient of collecting data
such as Society for Welfare of Autism Children (Pisiculture, Shymoli) and Ananda Niketon
European School (Dhanmondi).
1.6.3 Population and Unit of Analysis
All the mothers having children with autism between the ages of 4 years to 14 years of age
of the selected area in Dhaka City is considered for the population of the study and each of
the mothers of the study area is considered as a unit of analysis.
1.6.4 Sampling and Sample Size
This study is conducted on the basis of case study and FGD. At the first the areas are
selected purposively and then the sample has been taken simply at random among them. A
total of 20 parents having children with autism attained for case study and two FGDs are
conducted with the intention of capturing a diversity of voices from around the greater
Dhaka City. A pre-test of case study is first conducted with two mothers of youth with a
diagnosis of ASD living in Dhaka City. Mothers participating in pre-test have given a brief
introduction to the process of case study and a reminder of the approximate time necessary
for completing the interview.
1.6.5 Data Collection Techniques
Interview and observation technique are applied to collect data. A guideline with semi-
structure question is used in conducting case studies and focus group discussions (FGDs).
These interviews are tape recorded and noted down on areas of particular importance or

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1.8 Limitations of the Study
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· Yet the researcher believes that, the findings of the study will be helpful to
further researcher as well as to the policy makers. The limitations of the study are described
below:
1. The study is based on an issue about autistic children. So collection of data regarding the
field was very hard for the researcher. It is not easy to get information from the mothers
of children with autism about their children.
2. Many mothers of children with autism have not enough time to give information
because of their busyness. As a result, the interviewer had to shorten the interview
session.

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3. Many mothers of autistic children do not know properly about autism and also the
importance of conducting research. So, it was disadvantage for the researcher.
4. There were limited books about autism. The researcher had to suffer for it.
5. The researcher used qualitative methods for data collection. So, findings from
qualitative methods are difficult to generalize.
6. Time is an important factor for successful completion of any research work. But this
study accomplished in a short period of time. As a course the investigator has to
complete it within a short spell on time. Therefore, some problems are very inevitable
due to time constrains.
7. Experience and skill is very much important for a creative research, there were some
problems as the investigators are apprentice in the investigation field.
8. The researcher had to bear entire cost of the study related to the Monograph such as
typing and printing, transportation to the field sides and binding the Monograph.
9. The investigator had to carry on the research activity with another work. So it was very
difficult to complete such complex task.
10. In this research case study and FGD have been used as the means of data collection. The
participants of the study were selected by random sampling technique. So it may do not
represent all the mothers of children with autism of Dhaka City and the literatures may
will not reveals the exact present situation also.

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Chapter Two: Review of Literature

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Chapter Two: Review of Literature
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D. E. Gray (2006) conducted a study entitled Coping over Time: the Parents of Children
with Autism . The paper reports the results of a longitudinal study of parents coping with
autism over a period of approximately a decade. The purpose of this study is to provide
information on this issue by examining how the coping strategies of a sample of parents of
children with autism have changed over time. The research method for the study was based
on ethnographic methods that emphasized in-depth interviews and participant observation.
Here focus on the child s medical history and referral experience, the effects of the autistic
children problems on the well-being of parents, the upshot of autism on the social life of
family members, parental coping strategies, illness ideas and the parents anticipations for
the future life. Results show that coping strategies changed from the time of the initial
study, as fewer parents coped through reliance on service providers, family support, social
withdrawal and individualism and relatively more parents coped through their religious faith
and other emotion-focused strategies. The reasons for these changes may reflect both the
changing problems of the children and the services currently available for their treatment.
Here the study did not able to show the present data to determine which of these factors
the changing nature of the children s problems or the access to appropriate services is the
most important in affecting the changes in the parents coping strategies. This study is also
highlighting the perceptions of mothers since they have to face challenges most. So fulfill
the lacking of this study and to create something new, the researcher want to conduct the
present study.
A study also conducted by Susan K. Dzubay (2011) on Parental Grief, Coping Strategies,
and Challenges When a Child has Autism Spectrum Disorder . The Study identifies
challenges faced by parents when their child is diagnosed with ASD. Researcher specifically
examines research related to the difficulties parents may experience related to the
diagnostic process, how parents respond and react to the diagnosis, what are the positive
and negative coping strategies used by parents, and identify specific challenges parents face
related to raising a child with ASD. Researcher also focused on articles where the child had
been diagnosed with ASD two to three years prior to the time of the study and children
were under the age of four when diagnosed. Results indicated that consistently parents
report a strong social support network is a necessary part of being able to cope. A strong

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; other parents sought solace in a belief
system after their child was diagnosed as a means to help them cope with the difficulties
they were experiencing related to their child s ASD. Negative coping through withdrawal,
escape, blaming, and feeling helpless were used more by mothers then fathers. Fathers
reported that it was difficult for them to maintain personal friendships and felt this led to
their feeling depressed. However it should also be noted that fathers did not view the child s
ASD as being as life changing as mothers did. In the present study has been conducted on
the experiences and challenges of mothers raising a child with autism. The study shows
specifically how the mothers maintain their daily life activities with handling a child with
autism. The study also wants to know the priorities parents have for their children s
development which is essential to treatment planning and also what kinds of supports and
services the child and family have received. This area did not investigate in this research.
In 2014, KN. Chowdhury et. Al conducted another study entitled Current Status of Service
Centers Serving Autism Spectrum Disorder in Dhaka City . The study was designed to
understand the current status of service centers serving autism spectrum disorder in Dhaka
City. This was a descriptive type of cross-sectional study conducted in three centers of
autistic children in Dhaka City where results show that these centers provide services purely
for autistic children. These are mainly non-governmental, non-profitable, non-political and
voluntary organizations. Their common activities are diagnosis and assessment of autistic
children, daily life scale training, vocational training, package program, outing program,
nursery program, parent counseling and training program, teachers training program,
integration of high functioning autistic children into normal schools, home visit program,
free treatment, seminar and workshops, periodical review, awareness program,
rehabilitation of young and trained autistic children, residential training. Common tools are
training materials such as chair, table, board, different types of wooden and plastic toys,
drawing board, color pencils, art paper etc; musical instrument like harmonium, guitar, table
etc; for technical training computer different categories of books, papers, magazines etc; for
parents, care givers and for general people brushier, newsletter, magazine etc; for physical
training trade mail, basket ball, football, rings, swings etc. Technologies used in these
centers are computer, internet, developed website, telephone services etc. Financial source
collected mainly from student s fees. Policy guideline for smooth running of these centers
was not available. They have limited fund, limited space, limited trained professionals,
limited machinery and tools and lack of social awareness. The current study conducted to
examines the experiences and challenges of mothers of children with autism. This study
data help researcher to know the current status of given services to the children with autism
and their family which expand the knowledge of the researcher to conduct the research.

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Changing the clinical picture of parents raising
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examination of the direct and moderating effects of various coping resources. Here the
researcher shared her experience, suggest that some parents raising children with autism
are quite distressed, others appear to be doing okay, and still others report that having a
child with autism has had a positive impact on how they view people, on their career or on
their perspective on life. Research has yet to really identify the factors that result in these
differences. The goal of this research was to explore various factors that may make a
difference in how a child with autism impacts mothers and fathers. This study examines how
parents beliefs about their parenting ability may impact on their feelings of overall well-
being. Similarly, this study also explores parents beliefs about their ability to intervene on
behalf of their child at school, in the community and politically. In addition to looking at the
beliefs that parents hold, this study also looks at other factors that may make a difference in
how parents are impacted by their experience of raising a child with autism, including
perceived social support from formal and informal sources, coping strategies and
involvement in advocacy. Participants consisted of 114 mothers and 76 fathers raising
children between 2 and 12 years of age with Autism Spectrum Disorder (ASD). Results
indicated both differences and similarities between how mothers and fathers were
impacted by their experience of raising a child with ASD. The results of the study have
implications for how clinicians assess and provide support to mothers and fathers. Findings
indicate that helping to facilitate the provision of support from informal sources both within
the family and within the community (e.g., spouses, friends, extended family, neighbours)
can have powerful effects on both mothers and fathers well-being, and even promote the
development of positive changes in mothers as a consequence of raising a child with autism.
Connecting families with formal support services may require greater thought and
exploration to ensure that mothers, who are often the primary caregiver, have appropriate
and helpful formal supports in place (e.g., daycare, social workers, early intervention
programs) while at the same time ensuring that interactions with formal supports services
are not increasing levels of parental distress for fathers or having negative impacts on family
life (e.g., increased financial strain, disruption of family routine, increased demands on
time). Findings in the current study encourage clinicians and researchers to take a more
contemporary view of mothers raising children with autism.
Another study led by Perry Condillac (2003) entitled Evidence-Based Practices for
Children and Adolescents with Autism Spectrum Disorders: Review of the Literature and
Practice Guide . The purpose of this Evidence-Based Practice Guide was to provide a
summary of empirically based assessment and intervention approaches for children and
adolescents with Autism Spectrum Disorders (ASDs) and best practices for supporting
families. Evidence-based treatment guidelines are especially important in the field of ASDs
as this field has been plagued by significant differences of opinion and controversies over

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/benefit analysis
required each time a new treatment option arises. It is essential that professionals consult
the current research and assist parents to understand the nature and strength of the
scientific evidence surrounding treatments. The empirical evidence gathered in this report
had been gleaned from primary research articles, book chapters, and literature reviews,
including reports from consensus panels (e.g., groups of knowledgeable researchers and
clinicians). This practice guide describes and evaluates interventions based on available data
as to whether they are evidence-based (i.e., convincing evidence they are effective) or
empirically disconfirmed (i.e., convincing evidence they are not effective or harmful). The
current study is highlighting on the experiences and challenges of mothers of the autistic
children. The experiences with diagnostic process, taking services and supports and family
and career life have been focused on the current study with is lacking in this study.
Majumdar (2011) conducted a research named Exploring the State of Educational Care
Giving Services for Autistic Children in Dhaka City: A Case Study of Two Schools that
attempt to explore the existing educational and care giving facilities in Dhaka City based on
a case study investigation of autistic school s teachers knowledge, perception and
motivation for working with these children, parents knowledge on autism and perception of
the schools, school authority s perception, and expectation from their respective schools
and through examination of physical resources of the schools. The case study was
exploratory in nature and used both qualitative and quantitative methods to get maximum
information from the parents, teachers and school authorities to understand the overall
situation of the educational and institutional care available for autistic children in Dhaka.
The two schools were selected purposively for the study was SWAC and AWF. Semi-
structured interviews of parents and teachers, in-depth interviews of the school authorities,
review of school s documents, classroom observations were done to get maximum inputs.
Quantitative data was analyzed by calculating Frequency Distribution and Percentage
whereas Grid Analysis and Thematic Coding were done to review the qualitative data. In the
findings lack of awareness and infrastructure was found in respect to training, schooling,
awareness, diagnosis and care. Children with autism were found lacking quality education,

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restricting their holistic development. Parents were found less motivated and
knowledgeable on the disability. Teacher s knowledge was limited and was not sufficient to
move these children ahead of their disability. The school authorities were found dedicated
but due to lack of funding and infrastructure, they were not able to match up to their
intentions. In conclusion, the autistic schools in Dhaka City were found not apposite to the
requirements of the autistic children and their families. The current study is also conducted
through the qualitative research approach. But it aimed to explore the stress and challenges
of mothers of children with autism who have to lead a very challenging life.
Another study on Experiences of parents of children with autism: Parenting, schooling,
and social inclusion of autistic children was conducted by Kourkoutas, Langher, Caldin
Fountoulaki in 2012. The purpose of this study was to reveal the impact of autism at
different stages of the child s development, on the way parents organize their family life and
deal with issues related to school, professional services, and social inclusion of the disabled
child. Focus groups were conducted with 24 parents of children with autism. Content
analysis of parents discourse revealed the stress and troubles that families experience
everyday when dealing with a child with autism, as well as the barriers they encounter in
their effort to support their child s inclusion in school and society. Findings also suggest the
importance of developing family-centered services that enhance parenting skills and
support parents in coping with extremely distressing emotions and obstacles. The present
study is about the experience and challenges of mothers raising a child with autism in
perspective of Dhaka City. For doing a deep analysis the researcher conduct the present
study based on case study and also focus group discussion.
In 2011 N. Hale published a book named Down syndrome parenting 101: Must-have
advice for making your life easier . This book is an inspirational guide for parents,
grandparents, and anyone who shares life with a person with Down syndrome. It's full of
uplifting advice and best practices gleaned from the author s personal and professional
experiences raising a son, now an adult, and 20 years spent tutoring children, teens, and
adults with Down syndrome. She offers realistic wisdom and support concerning a host of
important issues that parents may confront during their child's lifespan. She discusses
everything from recognizing and celebrating your child's personality and gifts, finding a
great teachers and therapists, and interacting with medical professionals, to learning how to
encourage discipline and independence, dealing with school issues, and acknowledging your
child as an adult. Chapters are purposely short so busy parents can read them individually or
sequentially. This book helped the researcher to conduct the current study. A multifarious
perceptions was taken to draw the figure more purposefully from study perspective as the
current study is related to the lived experiences and challenges of mothers who have raising
a child on the spectrum.

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descriptive cross sectional study and aimed to find the socio-economic profile of persons
with ASD and to correlate the condition of autism with the socio-economic profile. The
study was conducted in two autism schools in Dhaka City. All the subjects of the study are
the parents of autistic children who were educated and living in Dhaka. Results showed that
the highest numbers of autistic children were aged 7-9 years (32%) and 4-6 years (28%);
78% were male and 22% were female children. With respect to birth order, 58% were first
born and 33% were second born. Parents education and occupation were associated with
this disorder but family income was not. Autistic children were more likely to have illiterate
parents (32%) followed by parents with primary level education (21%). The majority of the
patients (87%) were from nuclear families and 66% were from urban areas. On the other
hand, only 38% of the children went to school regularly. This study highlighted the
relationship of autism with birth order, parent s education, economic status and family
status. The researcher also found that autistic children were less likely to attend a school.
The current study is conducted to explore autistic children s mothers daily experiences and
challenges while this study is based on socio-economic condition of autistic children.
Another study conducted by T. Murphy K. Tierney (2005) entitled Parents of Children
with Autistic Spectrum Disorders (ASD): A Survey of Information needs investigated the
information and education needs of parents of children with Autism Spectrum Disorder
(ASD). Here six focus groups with parents of children with ASD were conducted over a two
month period. Focus groups lasted for approximately two hours each and took place in the
evenings. A total of 27 mothers and 11 fathers participated. The focus group questions
emerged from a literature review of parents experiences of having a child with ASD and
parents perceptions of their information and education needs. Findings supported that
parents of children with ASDs experience further stress and frustration because of the delay
in obtaining a diagnosis. Many parents in the discussion stated that it would have been
helpful if the diagnosing professionals informed them about the positive as well as the
negative aspects of the ASD and how it might impact not only on the child s development
but on the family s way of life. Parents felt that the lack of collaboration among service
providers and professionals was somewhat responsible for their having to discover
themselves which needs were met by the different services. Parent participants reported
having significant information and education needs before, during and after the diagnosis.
They also reported wanting practical advice on how to apply what they learned from books
or training programs to everyday living with their child. Here, the current study was
conducted based on mother s experiences and faced challenges raising a child on the
spectrum which is slightly different from this study. The current study is conducted based on
case study and FGD method while this research used only the FGD method.

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Technology Supports for Individuals with Autism Spectrum Disorders was published by
J. M. Cafiero (2008) which presents an overview of technology and media based tools and
strategies currently used by families, researchers, and practitioners for individuals with ASD
as well as the tools used by individuals with ASD themselves. It considers strengths and
needs of individuals across the Autism Spectrum from those who are nonverbal and
require augmentative and alternative communication for basic communication, to those
individuals who are verbally and fully included with typical peers and who benefit from
technology that enhances their social skills and social awareness and describes selected
technology-based supports that address them. Here author successfully described why
individuals with autism use technology and media-based tools and strategies. Individuals
with ASD have certain difficulties that technology can address. Such as difficulty with
communication, difficulty with complex cues, difficulty with affective and social learning.
Use of Augmentative and alternative communication (AAC) with individuals with ASD can
promote the generation of communication as well as stimulate the development of speech
(Millar, Light, Schlosser, 2006). Visual cues may be created using Tangible objects (e.g., a
cup can be a symbol to represent the desire for a drink), computer generated symbol
systems, photographs representing steps to complete a task and text. Technology has great
potential as a vehicle for delivering instruction in communication and socialization. Internet,
virtual reality through virtual online communities, virtual environments software programs
etc can help an individual with autism in improving his/her level of communication and
social interactions. The current study is totally different from this study since it focuses on
the experiences and challenges of mothers having a child with autism.
In 2008 an article was published by Afroza Begum on The Journal of Social Development
entitled Unveiling the Children with Autism: Some Countries of Action to Deal with
Them . This article presents the overall diagram of autism and some courses of action to
deal with a child with autism. Autism is a severe developmental disorder that begins at birth
or within the first two and a half years of life, according to the Autism Research Institute.
Scientists don t believe symptoms can be detected before 6 months of. There are many
myths and misconceptions about autism. Contrary to popular belief, many autistic children
do make eye contact, it just may be less often and different from a non-autistic child. Here,
author discusses the history of autism; its classification, characteristics, effects, causes,
present situation in Bangladesh and more significantly the social strains of the parents of
autistic children and how to handle the autistic children. Author emphasizes that parents
should not hide their child from society or be afraid of getting exposed as the parents of an
autistic child. Instead, they should work with their child s autism; learn about that. She also
emphasizes that mothers have a pivotal role to play in helping autistic children overcome
their social limitations. In some cases, autism may be genetically linked, but blaming or
pointing out whose side is responsible serves no purpose whatsoever and this self-
destructive attitude can potentially tear families apart. So, parents should stand united and
this is important not just for the parents but the whole family, siblings, grandparents, etc.

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/his condition can improve dramatically. Here, the current study
highlighted on the experience and challenges faced by the mothers raising a child on the
spectrum.
Another study entitled Coping mechanisms of parents of children recently diagnosed with
autism in Taiwan: A qualitative study was conducted by Chang, Lin Tsai in 2008 focuses
on the coping mechanisms of Taiwanese parents whose children have recently been
diagnosed with autism. When a child is diagnosed with autism, the family life of that child
changed. Parents of a child with autism have been shown to cope with problem or emotion-
focused coping strategies. However, it is not known how parents in Taiwan adapt and cope
with the stresses of taking care of an autistic child, especially in the early period after
learning their child's diagnosis and while waiting for free national day care arrangements at
hospital. A descriptive qualitative design was used, with in-depth interviews. Parents of
children diagnosed with autism (n = 17) were recruited from a children's psychiatric
outpatient clinic at a medical center in northern Taiwan. The parents were still waiting for
free national day care arrangements at hospital. Data were collected through individual,
tape-recorded interviews and observations, and transcripts were analyzed by content
analysis for emerging themes and concepts. The study sample of parents of children with
autism described nine main coping mechanisms that fell into three core categories:
adjusting to self-change, developing treatments for the autistic child and seeking support.
The results of this study could be used by clinicians to help parents of autistic children
become aware of whether or not they are using healthy coping mechanisms, and to suggest
concrete and healthy coping strategies, particularly in the period after the diagnosis is
confirmed and they are waiting for free national day care arrangements at hospital. Both
father and mother have great impact for having a child on the spectrum. But the mothers
have more stress than father, the current study highlights on this issue.
To sum up, the prevalence impact of autism from a global perspective has dramatically
increased in recent years. Over the last decade, there have been numerous conceptual
papers attempting to explain what autism does and how autism might be understood in
other parts of the world. The above literature showed different perspective of autism and
the family with autism. However, little research has been conducted in this current study
area. The current study is based on the daily lived experiences and challenges of mothers of
children with autism. This research will make a number of contributions to the
understanding of the experiences of mothers raising a child diagnosed on the spectrum to
the field. Few researches examining the experiences of parents and families but the current
study highlighted the experiences and challenges of families in particular mothers of
children with autism living in Dhaka City.

ƒ8
Chapter Three-Autism: Conceptual
Theoretical Framework
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Chapter Three- Autism: Conceptual Theoretical
Framework
3.1 Autism Spectrum Disorder (ASD)
Autism is a life-long, often devastating, disorder that profoundly affects almost every aspect
of an individual's functioning. Impairments in communication limit the ability to understand
what is happening or why, and make it almost impossible effectively to control events,
people or the environment. Difficulties in social understanding mean that even the simplest
interactions are fraught with problems. Inability to cope with change and the need to
adhere to fixed routines and patterns of behavior can make every-day life threatening and
disturbing (Howlin Patricia, 1991:01).
The term spectrum refers to the wide range of symptoms, skills, and levels of impairment
or disability that children with ASD can have. Some children are mildly impaired by their
symptoms, while others are severely disabled. The latest edition of the Diagnostic and
Statistical Manual of Mental Disorders (DSM-5) no longer includes Asperger s syndrome; the
characteristics of Asperser s syndrome are included within the broader category of ASD.
Autism is the most common condition in a group of developmental disorders known as the
autism spectrum disorders (ASDs). Autism is a developmental delay that includes symptoms
such as speech difficulties, lack of eye contact, isolation and no fear of danger. Autistic
children act and sound like much younger children. The label had already been introduced
by the eminent psychiatrist Eugen Bleuler near the beginning of the twentieth century and
was well known in psychiatry. Hence the words autistic and autism from the Greek word
autos meaning self Today they are applied almost exclusively to the developmental
disorder that we now call autism. Above all the children seemed to be unable to establish
normal relationships with their peers (Frith Uta, 1989:05).
After above discussion, autism spectrum disorder (ASD) is characterized by:
 Persistent deficits in social communication and social interaction across multiple
contexts;
 Restricted, repetitive patterns of behavior, interests, or activities;
 Symptoms must be present in the early developmental period (typically recognized in
the first two years of life); and,
 Symptoms cause clinically significant impairment in social, occupational, or other
important areas of current functioning.

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3.2 Types of Autism
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Autistic disorder
Autistic Disorder is a impairment in social interaction, as manifested by at least two of the
following: marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye
gaze, facial expression, body postures, and gestures to regulate social interaction, failure to
develop peer relationships appropriate to developmental level, markedly impaired
expression of pleasure in other people's happiness, lack of social or emotional reciprocity,
delay in or total lack of the development of spoken language, stereotyped and repetitive use
of language or idiosyncratic language, lack of varied spontaneous make-believe play or
social imitative play appropriate to developmental level.
Asperger Syndrome (AS)
In 1944, Hans Asperger, a Viennese medical student unaware of Kanner s earlier report,
suggested the concept of autistic psychopathy or what is now usually termed Asperger's
syndrome. Asperger's description resembled that of Kanner in some ways, e.g. in the use of
the word autism to describe marked problems in social interaction. Asperger suggested that
the condition he described was seen only in males, was observed in the face of relatively
strong language and cognitive skills, and tended to run in families (Volkamar F.R,1998). The
term Asperger's syndrome was first used by Lorna Wing , who introduced the diagnosis in
an attempt to gain recognition for those very able autistic people who do not fit the Kanner
stereotype of being silent and aloof. She listed six diagnostic criteria based on Asperger:
 Speech delay, but content odd, pedantic, stereotyped;
 Non-verbal communication Í little facial expression, monotone voice, inappropriate
gesture;
 Social interactions - not reciprocal, lacking empathy;
 Resistance to change - enjoy repetitive activities;
 Motor coordination - gait and posture odd, gross movements clumsy, sometimes
stereotypes;
 Skills and interests - good rote memory, circumscribed special interests.
In addition to these, she reports Asperger's claim that this disorder is more frequent in
males than females and rarely recognized before the third year of life (Happe F.1994:83).

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(i) Language delay - only half of the group Wing would label as having Asperger's
syndrome developed language at the normal age.
(ii) Early development - before the age of 3 years the child may be odd, e.g. no joint
attention.
(iii) Creativity - Wing claims these children are not creative, and for example does not show
true pretend play. Rather than being original, their thought is inappropriate.
Rett s Syndrome
Rett (1966) reported an unusual syndrome, observed only in girls, where a very brief period
of normal development is followed by decelerated head growth, and loss of purposeful
hand movements and development of severe psychomotor retardation (Volkamar F.R,
1998).
Childhood Disintegrative Disorder
Childhood Disintegrative Disorder is apparently normal up to the age of at least 2 years. The
presence of normal age-appropriate skills in communication, social relationships, play and
adaptive behavior at age 2 years or later is required for diagnosis. There is a definite loss of
previously acquired skills at about the time of onset of the disorder. The diagnosis requires a
clinically significant loss of skills in at least two of the following areas: social skills or adaptive
behavior, expressive or receptive language, motor skills, bowel or bladder control, play.
Pervasive Developmental Disorder
The term pervasive developmental disorder-not otherwise specified (PDD-NOS) was
included in DSM-IV to encompass 'sub-threshold' cases. It is intended to describe individuals
who have a marked impairment of social interaction, communication or stereotyped
behavior patterns or interest suggestive of a pervasive developmental disorder but who do
not meet the criteria for any of the formally defined disorders in that class (Volkamar F.R,
1998). It also called Atypical Autism. Pervasive developmental disorders emphasized that
autism involves a serious abnormality in the developmental process itself and

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3.3 Symptoms of ASD
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 Social impairment
 Communication difficulties
 Repetitive and stereotyped behaviors.
Children with ASD do not follow typical patterns when developing social and communication
skills. Parents are usually the first to notice unusual behaviors in their child. Often, certain
behaviors become more noticeable when comparing children of the same age.
In some cases, babies with ASD may seem different very early in their development. Even
before their first birthday, some babies become overly focused on certain objects, rarely
make eye contact, and fail to engage in typical back-and-forth play and babbling with their
parents. Other children may develop normally until the second or even third year of life, but
then start to lose interest in others and become silent, withdrawn, or indifferent to social
signals. Loss or reversal of normal development is called regression and occurs in some
children with ASD.
Social impairment
Most children with ASD have trouble engaging in everyday social interactions. According to
the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition - Text Revision,
some children with ASD may:
 Make little eye contact
 Tend to look and listen less to people in their environment or fail to respond to
other people
 Do not readily seek to share their enjoyment of toys or activities by pointing or
showing things to others
 Respond unusually when others show anger, distress, or affection.
Recent research suggests that children with ASD do not respond to emotional cues in
human social interactions because they may not pay attention to the social cues that others
typically notice. For example, one study found that children with ASD focus on the mouth of
the person speaking to them instead of on the eyes, which is where children with typical
development tend to focus.3 A related study showed that children with ASD appear to be
drawn to repetitive movements linked to a sound, such as hand-clapping during a game of
pat-a-cake.4 More research is needed to confirm these findings, but such studies suggest
that children with ASD may misread or not notice subtle social cues a smile, a wink, or a
grimace that could help them understand social relationships and interactions. For these

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ability to interpret another person's tone of voice as well as gestures, facial expressions, and
other nonverbal communications, children with ASD may not properly respond.
Likewise, it can be hard for others to understand the body language of children with ASD.
Their facial expressions, movements, and gestures are often vague or do not match what
they are saying. Their tone of voice may not reflect their actual feelings either. Many older
children with ASD speak with an unusual tone of voice and may sound sing-song or flat and
robotlike.
Children with ASD also may have trouble understanding another person's point of view. For
example, by school age, most children understand that other people have different
information, feelings, and goals than they have. Children with ASD may lack this
understanding, leaving them unable to predict or understand other people's actions.
Communication issues
According to the American Academy of Pediatrics' developmental milestones, by the first
birthday, typical toddlers can say one or two words, turn when they hear their name, and
point when they want a toy. When offered something they do not want, toddlers make it
clear with words, gestures, or facial expressions that the answer is no.
For children with ASD, reaching such milestones may not be so straightforward. For
example, some children with autism may:
 Fail or be slow to respond to their name or other verbal attempts to gain their
attention
 Fail or be slow to develop gestures, such as pointing and showing things to others
 Coo and babble in the first year of life, but then stop doing so
 Develop language at a delayed pace
 Learn to communicate using pictures or their own sign language
 Speak only in single words or repeat certain phrases over and over, seeming unable
to combine words into meaningful sentences
 Repeat words or phrases that they hear, a condition called echolalia
 Use words that seem odd, out of place, or have a special meaning known only to
those familiar with the child's way of communicating.
Even children with ASD who have relatively good language skills often have difficulties with
the back and forth of conversations. For example, because they find it difficult to
understand and react to social cues, children with Asperger syndrome often talk at length
about a favorite subject, but they won't allow anyone else a chance to respond or notice
when others react indifferently.

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Children with ASD who have not yet developed meaningful gestures or language may simply
scream or grab or otherwise act out until they are taught better ways to express their
needs. As these children grow up, they can become aware of their difficulty in
understanding others and in being understood. This awareness may cause them to become
anxious or depressed.
Repetitive and stereotyped behaviors
Children with ASD often have repetitive motions or unusual behaviors. These behaviors may
be extreme and very noticeable, or they can be mild and discreet. For example, some
children may repeatedly flap their arms or walk in specific patterns, while others may subtly
move their fingers by their eyes in what looks to be a gesture. These repetitive actions are
sometimes called stereotypy or stereotyped behaviors.
Children with ASD also tend to have overly focused interests. Children with ASD may
become fascinated with moving objects or parts of objects, like the wheels on a moving car.
They might spend a long time lining up toys in a certain way, rather than playing with them.
They may also become very upset if someone accidentally moves one of the toys. Repetitive
behavior can also take the form of a persistent, intense preoccupation. For example, they
might be obsessed with learning all about vacuum cleaners, train schedules, or lighthouses.
Children with ASD often have great interest in numbers, symbols, or science topics.
While children with ASD often do best with routine in their daily activities and surroundings,
inflexibility may often be extreme and cause serious difficulties. They may insist on eating
the same exact meals every day or taking the same exact route to school. A slight change in
a specific routine can be extremely upsetting.1 Some children may even have emotional
outbursts, especially when feeling angry or frustrated or when placed in a new or
stimulating environment.
No two children express exactly the same types and severity of symptoms. In fact, many
typically developing children occasionally display some of the behaviors common to children
with ASD. However, if you notice your child has several ASD-related symptoms, have your
child screened and evaluated by a health professional experienced with ASD.
3.4 Causes of ASD
What causes autism specifically is not known. Some experts believe there are bio-chemical
reasons for autism; others suspect that it is a psychiatric disorder. The cause of autism is
unknown. It has long been presumed that there is a common cause at the genetic, cognitive,
and neural levels for autism's characteristic triad of symptoms. Medical research is currently
investigating possible causes such as immunizations, toxic chemicals, genetic mutations, and

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no definite post-natal environmental causes have been identified. The researcher discusses
all the possible causes of autism.
Genetic causes
As convincing evidence for the genetic causes of autism has now emerged, a new twist has
been added to the story. Kanner's and Asperger's clinical intuitions about the often
intellectual and detached parents of the children they saw were not mistaken. Well-
controlled studies have shown that fathers as well as mothers may have some of the same
traits as their children, often in very mild form (Frith Uta, 1989:30). Genetic factors are the
most significant cause for autism spectrum disorders. Early studies of twins estimated
heritability to be over 90%, in other words, the genetics explains over 90% of whether a
child will develop autism. Though autism s genetic factors explain most of autism risk, they
do not explain all of it. A common hypothesis is that autism is caused by the interaction of a
genetic predisposition and an early environmental insult.
Environmental causes
It has been found that prenatal exposure to particular teratogen an environmental agent
that can cause abnormalities in a developing organism, e.g., the rubella virus) is a risk factor
associated with autism and indicates that fetus mal-development is a likely path to autism.
Wier et al. describes a study of Swedish patients where prenatal exposure to a teratogen
occurred which resulted in a greater proportion of autism. They suggest that first-trimester
injury may impair brain development, which potentially leads to autism. Insults occurring
during gestation in the foetus lead to neuro-developmental disorders, particularly autism
spectrum disorders.
Environmental causes are attractive to consider because it might be possible to avoid them
and prevent the disorder. A famous example is phenylketonuria, a metabolic disease with a
genetic cause and an environmental trigger, phenylalanine, which the body in this case
cannot metabolize. This is critical, as phenylalanine is in much of the food we normally eat.
If unchecked, the consequence of the disease is subtle damage to the brain and intellectual
impairment (Frith Uta, 1989:72).Essentially, any environmental risk factor that can lead to
brain damage early in development may be considered a potential nongenetic cause of
autism. Prenatal factors and birth complications are risk factors that might result in brain
damage. A number of studies have shown that significantly more hazards of pregnancy and
birth are present in autistic than in normal children.

6
Psychological causes
Gillberg and Coleman (2000: 102) state that there are three psychological concepts involved
in autism. These are metalizing, central coherence and executive function. People with
autism have been found to fail tests for metalizing and central coherence. Not all people
with autism are impaired in all three areas; however, it is generally accepted that there are
many neuropsychological impairments in people with autism.
Neurological causes
According to Brothers, social intelligence is a function of three regions of the brain: the
amygdala, the orbitofrontal cortex and superior temporal sulus and gyrus, together called
the social brain. The amygdala is activated when decoding signals of social importance, such
as gaze, expression-recognition, and body movements (Baron-Cohen, 2005:400). Patients
with lesions in the amygdala have impairments to social judgment similar to autism.
Abnormalities of the amygdala have been found in people with autism. Such abnormalities
are: increased cell density in the amygdala, reduced amygdale volume and less amygdala
activation during an empathizing task. As the amygdala is linked to autism, it is likely that
there are other areas of neural abnormality possibly linked to autism. Cerebellar dysfunction
is indicated by difficulty walking in a straight line, reduced stride regularity with increased
variability in velocity and the coexistence of variable stride lengths and duration. Children
with autism have been found to be less coordinated and more variable and inconsistent
than other children.
Parental age
A child s risk of developing autism is associated with the age of its mother and father at
birth (Gardener H, 2009). The biological reasons for this are unknown: possible explanations
include increased risk of pregnancy complications; maternal autoimmunity; increased risk of
chromosomal abnormalities or unstable trinucleotide repeats in the egg, imprinted genes,
spontaneous mutations and confounding socio-cultural factors in the sperm since ages of
the father and mother are correlated, it is possible that only the mother s age, or only the
father s age or both, contribute to the risk (Ruiz Avant, 2005).
Although it is rare for families to have more than one child with autistic disorder, the risk of
a second child being affected by a form of autistic disorder has been estimated as 3-6
percent. This must be compared with a normal population risk of 0.6 percent, making is 5-10
times as high. In early research of autism there was said to be no genetic link. Today, autism
is thought to be one of the most heritable psychiatric conditions, however, there is æno
consensus on the mode of transmission of autism . According to Gillberg and Coleman
(2000: 232), there is a consensus that the autism spectrum is mainly composed of
underlying genetic diseases. This consensus is not proven and cannot be proven until each
person diagnosed with autism has a specific diagnosis. They have said that twin studies have


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/or an environmental insult that occurred during pregnancy that led to the congenital
anomaly and autism. They also suggest that congenital anomalies are on the causal pathway
to autism spectrum disorders.
Pregnancy cause
Two new studies add to a growing body of evidence pointing to pregnancy as a critical
period in the brain changes that lead to autism. But studies have found that children are at
higher risk for autism if they are born early or very small; if they are in medical distress
during delivery; if they have older mothers or fathers; or if they are born less than a year
after an older sibling. Autism risk also goes up if a mother has diabetes or high blood
pressure; is obese; is infected with rubella, or German measles; is exposed to significant air
pollution during pregnancy; had low levels of folic acid; takes medications such as an anti-
seizure drug called valproic acid; or makes antibodies toxic to the fetal brain. Science has
ruled out vaccines as a cause of autism, says Gregory, who notes that the original myth
about autism and immunizations arose from bogus research that has since been retracted.
Poor nutrition
It seems unlikely that malnutrition can cause autism. But megavitamin therapies have been
used for many years to treat autistic symptoms. Certain supplements, particularly omega
fish oils, do seem to be helpful for treating some aspects of autism.
3.5 Process of ASD Diagnosis
ASD diagnosis is often a two-stage process. The first stage involves general developmental
screening during well-child checkups with a pediatrician or an early childhood health care
provider. Children who show some developmental problems are referred for additional
evaluation. The second stage involves a thorough evaluation by a team of doctors and other
health professionals with a wide range of specialties. At this stage, a child may be diagnosed
as having autism or another developmental disorder.
Children with autism spectrum disorder (ASD) can usually be reliably diagnosed by age 2,
though research suggests that some screening tests can be helpful at 18 months or even
younger.
Many people including pediatricians, family doctors, teachers, and parents may minimize
signs of ASD at first, believing that children will catch up with their peers. While you may

8
be concerned about labeling your young child with ASD, the earlier the disorder is
diagnosed, the sooner specific interventions may begin. Early intervention can reduce or
prevent the more severe disabilities associated with ASD. Early intervention may also
improve your child's IQ, language, and everyday functional skills, also called adaptive
behavior.
Screening
A well-child checkup should include a developmental screening test, with specific ASD
screening at 18 and 24 months as recommended by the American Academy of Pediatrics.14
Screening for ASD is not the same as diagnosing ASD. Screening instruments are used as a
first step to tell the doctor whether a child needs more testing. If your child's pediatrician
does not routinely screen your child for ASD, ask that it be done.
For parents, your own experiences and concerns about your child's development will be
very important in the screening process. Keep your own notes about your child's
development and look through family videos, photos, and baby albums to help you
remember when you first noticed each behavior and when your child reached certain
developmental milestones.
Types of ASD screening instruments
Sometimes the doctor will ask parents questions about the child's symptoms to screen for
ASD. Other screening instruments combine information from parents with the doctor's own
observations of the child. Examples of screening instruments for toddlers and preschoolers
include:
 Checklist of Autism in Toddlers (CHAT)
 Modified Checklist for Autism in Toddlers (M-CHAT)
 Screening Tool for Autism in Two-Year-Olds (STAT)
 Social Communication Questionnaire (SCQ)
 Communication and Symbolic Behavior Scales (CSBS).
To screen for mild ASD or Asperger syndrome in older children, the doctor may rely on
different screening instruments, such as:
 Autism Spectrum Screening Questionnaire (ASSQ)
 Australian Scale for Asperger's Syndrome (ASAS)
 Childhood Asperger Syndrome Test (CAST).
Comprehensive diagnostic evaluation
The second stage of diagnosis must be thorough in order to find whether other conditions
may be causing your child's symptoms. For more information, see the section: What are
some other conditions that children with ASD may have?

9
A team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or
other professionals experienced in diagnosing ASD may do this evaluation. The evaluation
may assess the child's cognitive level (thinking skills), language level, and adaptive behavior
(age-appropriate skills needed to complete daily activities independently, for example
eating, dressing, and toileting).
Because ASD is a complex disorder that sometimes occurs along with other illnesses or
learning disorders, the comprehensive evaluation may include brain imaging and gene tests,
along with in-depth memory, problem-solving, and language testing.12 Children with any
delayed development should also get a hearing test and be screened for lead poisoning as
part of the comprehensive evaluation.
Although children can lose their hearing along with developing ASD, common ASD
symptoms (such as not turning to face a person calling their name) can also make it seem
that children cannot hear when in fact they can. If a child is not responding to speech,
especially to his or her name, it's important for the doctor to test whether a child has
hearing loss.
The evaluation process is a good time for parents and caregivers to ask questions and get
advice from the whole evaluation team. The outcome of the evaluation will help plan for
treatment and interventions to help your child. Be sure to ask who you can contact with
follow-up questions.
3.6 Treatment of ASD
While there's no proven cure yet for autism spectrum disorder (ASD), treating ASD early,
using school-based programs, and getting proper medical care can greatly reduce ASD
symptoms and increase your child's ability to grow and learn new skills.
Early intervention
Research has shown that intensive behavioral therapy during the toddler or preschool years
can significantly improve cognitive and language skills in young children with ASD.27,28
There is no single best treatment for all children with ASD, but the American Academy of
Pediatrics recently noted common features of effective early intervention programs.29
These include:
 Starting as soon as a child has been diagnosed with ASD
 Providing focused and challenging learning activities at the proper developmental
level for the child for at least 25 hours per week and 12 months per year
 Having small classes to allow each child to have one-on-one time with the therapist
or teacher and small group learning activities

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interventions that aim to help those with ASD reach their full potential. ABA-based
interventions include:
Verbal Behavior focuses on teaching language using a sequenced curriculum that guides
children from simple verbal behaviors (echoing) to more functional communication skills
through techniques such as errorless teaching and prompting.
Pivotal Response Training aims at identifying pivotal skills, such as initiation and self-
management that affect a broad range of behavioral responses. This intervention
incorporates parent and family education aimed at providing skills that enable the child to
function in inclusive settings.
Other types of early interventions include:
Developmental, Individual Difference, Relationship-based(DIR)/Floor time Model aims
to build healthy and meaningful relationships and abilities by following the natural emotions
and interests of the child.35 One particular example is the Early Start Denver Model, which
fosters improvements in communication, thinking, language, and other social skills and
seeks to reduce atypical behaviors. Using developmental and relationship-based

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TEACCH (Treatment and Education of Autistic and related Communication handicapped
Children) emphasizes adapting the child's physical environment and using visual cues (for
example, having classroom materials clearly marked and located so that students can access
them independently). Using individualized plans for each student, TEACCH builds on the
child's strengths and emerging skills.
Interpersonal Synchrony targets social development and imitation skills, and focuses on
teaching children how to establish and maintain engagement with others.
For children younger than age 3, these interventions usually take place at home or in a child
care center. Because parents are a child's earliest teachers, more programs are beginning to
train parents to continue the therapy at home.
Students with ASD may benefit from some type of social skills training program.37 While
these programs need more research, they generally seek to increase and improve skills
necessary for creating positive social interactions and avoiding negative responses. For
example, Children's Friendship Training focuses on improving children's conversation and
interaction skills and teaches them how to make friends, be a good sport, and respond
appropriately to teasing.
Working with child's school
Start by speaking with the child's teacher, school counselor, or the school's student support
team to begin an evaluation. Each state has a Parent Training and Information Center and a
Protection and Advocacy Agency that can help to get an evaluation. A team of professionals
conducts the evaluation using a variety of tools and measures. The evaluation will look at all
areas related to the child's abilities and needs.
Once the child has been evaluated, he or she has several options, depending on the specific
needs. If teh child needs special education services and is eligible under the Individuals with
Disabilities Education Act (IDEA), the school district (or the government agency
administering the program) must develop an individualized education plan, or IEP
specifically for the child within 30 days.
If the child is not eligible for special education services not all children with ASD are
eligible he or she can still get free public education suited to his or her needs, which is
available to all public-school children with disabilities under Section 504 of the
Rehabilitation Act of 1973, regardless of the type or severity of the disability.
During middle and high school years, child's teachers will begin to discuss practical issues
such as work, living away from a parent or caregiver's home, and hobbies. These lessons

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fvknfdfvy meaning aggression, self-harming acts, or temper tantrums in children
ages 5 to 16 who have ASD.
Some medications that may be prescribed off-label for children with ASD include the
following:
Antipsychotic medications are more commonly used to treat serious mental illnesses
such as schizophrenia. These medicines may help reduce aggression and other serious
behavioral problems in children, including children with ASD. They may also help reduce
repetitive behaviors, hyperactivity, and attention problems.
Antidepressant medications, such as fluoxetine (Prozac) or sertraline (Zoloft), are usually
prescribed to treat depression and anxiety but are sometimes prescribed to reduce
repetitive behaviors. Some antidepressants may also help control aggression and anxiety in
children with ASD.29 However, researchers still are not sure if these medications are useful;
a recent study suggested that the antidepressant citalopram (Celexa) was no more effective
than a placebo (sugar pill) at reducing repetitive behaviors in children with ASD.
Stimulant medications, such as methylphenidate (Ritalin), are safe and effective in
treating people with attention deficit hyperactivity disorder (ADHD). Methylphenidate has
been shown to effectively treat hyperactivity in children with ASD as well. But not as many
children with ASD respond to treatment, and those who do have shown more side effects
than children with ADHD and not ASD.

††
FDA warning about antidepressants
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doctor will usually start your child on the lowest dose that helps control problem symptoms.
Ask the doctor about any side effects of the medication and keep a record of how your child
reacts to the medication. The doctor should regularly check your child's response to the
treatment.
There have many options for treating a child's ASD. However, not all of them have been
proven to work through scientific studies. Read the patient information that comes with the
child's medication. Some people keep these patient inserts along with their other notes for
easy reference. This is most useful when dealing with several different prescription
medications. One should get all the facts about possible risks and benefits and talk to more
than one expert when possible before trying a new treatment on his child.
3.7 Autism in Bangladesh
An issue that is hidden inside the closet is perhaps the best way one could describe the
fate people suffering from autism in Bangladesh. With no means or hope of leading a decent
life and with a public system lacks the basic facilities; usually concentrated within the four
walls of their rooms. It is shown that 1 in every 100 individuals in the world suffer from an
autism spectrum disorder. Large number population of Bangladesh suffering from ASD is
therefore not a surprise. There are many problems in the field that needs to be addressed in
the upcoming years. Researchers in Bangladesh often term Autism more of a human rights
problem rather than a medical problem.
The reason behind that is the social conundrum that many have to face due to the
neurological disorder. Children can t go to school, families prefer locking the member
suffering from ASD within the corners of the house and at one point of time there were
rarely any quotas in the public sector for them. Since the independence of Bangladesh in
1971, the constitution mandates the equality, non discrimination and creation of equitable
measures for all those who are underprivileged under the auspices of the Ministry of Social

A Study On Experiences Amp Challenges Of Mothers Of Children With Autism In Dhaka City Course No. 1004 Course Title-Thesis

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