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dissertation entitled

THE ECOLOGY OF EXPERIENCES AND SUPPORTS OF
MOTHERS WITH CHILDREN WITH AUTISM SPECTRUM
DISORDER DURING THE CHILDREN'S EARLY YEARS

presented by

Victoria Rivera Martinez

has been accepted towards fulfillment
of the requirements for the

Ph. D degree in Family and Child Ecology

 

 

 

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THE ECOLOGY OF EXPERIENCES AND SUPPORTS OF MOTHERS
WITH CHILDREN WITH AUTISM SPECTRUM DISORDER
DURING THE CHILDREN’S EARLY YEARS
By

Victoria Rivera Martinez

A DISSERTATION
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of
DOCTOR OF PHILOSOPHY
FAMILY AND CHILD ECOLOGY

2009

ABSTRACT
THE ECOLOGY OF EXPERIENCES AND SUPPORTS OF MOTHERS
WITH CHILDREN WITH AUTISM SPECTRUM DISORDER
DURING THE CHILDREN’S EARLY YEARS
By
Victoria Rivera Martinez
The Objective of the research study was to explore the experiences, perspectives,
influences and challenges of selected mothers with children with autism spectrum
disorder (ASD) as they live, work, advocate, access information, gain assistance and
support for their children. The population trends indicate a marked increase in the
prevalence Of autism spectrum disorder in our country and state (US. Department of
Education, 2009; Michigan Public Schools Prevalence Report, 2004). These trends are
significant enough that we need to provide research that will study the families who are
directly involved in caring for children with autism spectrum disorders (ASD). Research
has shown that mothers have the primary responsibility for taking care of the child with a
disability (Traustadottir, 1991; Leiter, Krauss, Anderson and Wells 2004). Since the

mother’s central responsibility is caring for the child, it is very important to study the

social support networks and experiences of mothers who care for a child with ASD.

The study utilized a qualitative design to allow for the systematic collection,
organization, interpretation and analysis of rich data about human experiences through
Open-ended, semi-structured, interviews. The phenomenological approach is used for
collecting, coding and analyzing the data. In- depth interviews explored and examined

the participant’s perspectives and experiences that occurred during 1) pre and post-

diagnosis of the child’s ASD; 2) identification of participants’ social support systems; 3)
participants’ perceptions of levels of support in the ecological systems in which they

participated; and 4) evaluation of the intensity of participants’ perceived social support.

The study was conducted utilizing a small sample of thirteen mothers across
different racial/ethnic groups, age, family compositions, locations, and sociO-economic
status. Research results indicate that the mothers are very involved in caring for the child
and accessing services in support of themselves and their children framed in
Bronfenbrenner’s ecological systems theory. Mothers reported getting strong support
with varying degrees of perceived stress from parents, spouses and Significant partners,
friends, social affiliations/networks and service providers. Perceived barriers included
lack of financial, medical, and educational supports and access for the child’s health
condition, lack of support services for second language speakers, lack of compassion

from service providers, and miscommunication in service delivery.

A strong family- based support approach needs to be applied in servicing the
needs of families and children with autism spectrum disorder, with consideration and
attention to the ecological support systems attending to the needs of the mothers and the
children. Mothers could be empowered to engage with other families and practitioners in
the planning and implementing of service delivery for their children with ASD. Service
providers should recognize the emotional, social, educational, and financial support needs
and rights of parents and children. Promoting constructive feedback, compassionate
interactions and nurturing relationships between parents with service providers should be
the hallmark of an effective support and service delivery system for parents with children

with autism spectrum disorder.

Copyright by
VICTORIA RIVERA MARTINEZ
2009

DEDICATION

TO my husband, Art, and my sons, Adam and Aaron, you have been my
constant inspiration, my happiness, and my life. Thank you for always being so
loving, patient and understanding throughout this journey. Art, what a privilege
and an honor to be your wife and mother of our children!

I dedicate this work in loving memory to my father, Dominador T. Rivera,
who strongly believed in education, honesty, and hard work. I also dedicate it to
my mother, Victoria V. Rivera, who instilled in us the joy of learning, optimism,
and prayerful life.

Thank you, Lord, for all your blessings to our families.

ACKNOWLEDGEMENTS

I would like to give my heartfelt thanks to my committee, Dr. Julia R. Miller, Dr.
Yevonne R. Smith, Dr. Ester E. Onaga and Dr. Robert Griffore for their support,
brilliance, understanding, collaboration, and encouragement during this whole journey. I
have the sincerest appreciation for Dr. Miller, who is my committee chair, for always
keeping me motivated, on-task, tenacious, and hopeful. My family appreciates her
kindness, patience, and mentorship. I would like tO thank Dr. Smith for her wisdom and
faith. She stayed with me through the ups and downs and challenged me to constantly
think about how to make my work so much better. My gratitude for Dr. Onaga, who
gave me hope for my family, Opportunities for teaching and encouragement for the
future. I would like to thank Dr. Griffore who taught me to be committed to scholarly

work and persevere amidst the challenges of the journey.

I express my deep appreciation to my family and friends who always made me
feel supported. To my family, Imelda & Rudy Velez, Eleanor & Rey Doromal, Garree &
Roni Rivera, Chit Aducayen, JO & PD Gonzales, Butch & Mary Rivera, Mae & Ramon
Eizmendi, Zarah & Gus Martinez, and Billie Lee, you are all my vigilant cheerleaders!
To my friends, Elaine & Larry Blevins, Chandra & Steve Jones, May & Elizabeth Red,
Elizabeth & Ken Jordan, Virgil & Monette Rovillos, Vemette Monson, Lihua Huang,
Sherri &. Katie Summers, Jennifer & Hugh Adair, Mary & Frank Herzenstiel, Elnora
Ramsey, Lisa Davis, Sandra and Michael O’Connell, Joyce Loper, Joscelyn Andrews,
Susan Allen, Theresa Early, Ruth Sedelmaier, Stephanie Parentesis, Adele Flourry Jr.,
Sarah Baraily, Kathy & Ken Fuerst, Maria Jimenez & Luz Telleria, who all helped me

through thick and thin and who never allowed me to wallow in fear or uncertainty. Thank

vi

you to my adopted “MSU Mom”, Elaine Williams, who has encouraged me throughout
this process. I also thank all my Montessori parents, teachers and children who inspired

me to learn more so I can be a better teacher and mentor to others.

My heartfelt gratitude goes to the significant mentors and models during my
dissertation journey. I thank Dr. Anne Soderman, Dr. Kit Payne, Dr. Marvin McKinney,
Dr. Sherri Oden, Dr. Joanne Keith, Dr. A1 Roberts, Betty Yancey, Dr. Rosalind Kirk, Dr.
Francesca Pernice-Duca, Dr. Ambika Bhargava and Dr. Julie Ricks-Doneen. I express

gratitude in loving memory of Dr. Tom Luster and Hester Hughes.

Finally, thank you to all the mothers who participated in the research project.
Your perspectives and experiences about your families and children give me hope,

inspiration, and encouragement as a parent and educator.

There were a lot of people in my life that helped and supported me in my journey
and I could not have done it without a circle of family, friends, parents, and mentors. The

day that I donned my cap and gown, was the day that we all collaboratively graduated.

Thank you from the bottom of my heart. I hope to be able to pass your kindness,

generosity, love of learning, expertise, and support forward.

vii

TABLE OF CONTENTS

LIST OF TABLES ........................................................................... x

LIST OF FIGURES ........................................................................... xi

INTRODUCTION ............................................................................... 1
Statement of the Problem ............................................................. 1
Background of the Study ............................................................. 5
Purpose of the Study ................................................................... 7
Significance of the Study ............................................................. 7
Rationale for the Qualitative Study ................................................. 8
Theoretical Framework/Conceptual Model ....................................... 10
Terminology ........................................................................... 12
Limitations of the Study ............................................................. 13
Summary .............................................................................. 14

CHAPTER TWO

REVIEW OF LITERATURE ............................................................... 16
Discussion of Developmental Disabilities
and Autism Spectrum Disorder ..................................................... 16
Research on Autism Spectrum Disorder ........................................... 20
Quality of Life ........................................................................ 23
Role of Mother as the Primary Parent ............................................. 24
Support Systems ...................................................................... 25

CHAPTER THREE

RESEARCH METHODS .................................................................... 27
Qualitative Research Design ......................................................... 28
Subject/Participant Selection ........................................................ 30
Instrumentation ........................................................................ 3 1
Data Collection Procedure ........................................................... 31
Data Analysis Procedure ............................................................. 34
Reliability and Validity of Data .................................................... 35

CHAPTER FOUR

RESULTS ...................................................................................... 37
Demographic Data .................................................................... 39
Mothers’ Experiences and Perspectives ........................................... 42
Identification of Mothers’ Social Support Systems .............................. 53
Mothers’ Types and Levels of Supports
based on Ecological Systems Theory ............................................... 6O

viii

CHAPTER FIVE
SUMMARY, DISCUSSION, CONCLUSION,

AND RECOMMENDATIONS ...........................................
Summary of Findings ...........................................

Discussion of the Ecological Systems Theory

and Mothers’ Support Systems ...................................
Recommendations .................................................

APPENDICES ..............................................................
Introductory Letter to Agency/School ......................
Introductory Letter to Parents ...............................
Informed Consent Form ......................................
Demographic Data .............................................
Interview Questions ............................................
Participants’ Eco—Map .........................................

REFUGE”?

BIBLIOGRAPHY .........................................................

ix

ooooooooooooooooooo

Table 1

Table 2

Table 3

Table 4

LIST OF TABLES

Demographic Characteristics of
Participants/Mothers in the Study
Demographic Characteristics of Children’s
Participants in the Study

Participants’ Responses on Sources of
Supports Measured in Units

Participants’ Responses on Sources of

Supports Measured in Percentages

Figure 1

Figure 2

Figure 3

LIST OF FIGURES

Theoretical Model: Mothers’
Experiences and Supports nested in
Bronfenbrenner’s Ecological
Systems Theory

Participants’ Responses on Sources
of Supports Measured in Units
Participants’ Responses on Sources
of Supports Measured in
Percentages

xi

OOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO

CHAPTER 1

INTRODUCTION

Statement of the Problem

According to the federal government and the provision contained in the
Developmental Disabilities Assistance and Bill Of Rights Act Amendments of 1990, the
term “developmental disability means a severe, chronic disability of a person 5 years of
age or older which is attributable to mental or physical impairment or combination of
mental and physical impairments; is manifested before the person attains age twenty-two;
is likely to continue indefinitely; results in substantial functional limitations in three or
more following areas of major life activities of self care, receptive and expressive
language, learning, mobility, self-direction, capacity for independent living and economic
self—sufficiency. When applied to infants and young children from birth to age 5,
developmental disability means substantial delay or specific congenital or acquired
conditions with high probability of resulting in developmental disability if services are
not provided (Wolfe, 1992). Autism spectrum disorder (ASD) is a category under
developmental disabilities.

Numerous studies have reported a high increase in the diagnosis of autism
spectrum disorder in the past twenty years with ASD representing the most common
neurodevelopmental disorder (Lawler, 2008). In the United States, the Center for
Disease Control and Prevention (2007) has found that one out of one hundred and fifty
children in its multi-site study in 2002 had autism spectrum disorder (ASD). This

disorder is four times more likely to occur in boys than girls. Autism spectrum disorder is

the fourth most commonly diagnosed disorder after specific learning disabilities,
speech/language impairment and mental retardation.

In 2004, there were 693,245 children ages 3-5 years Old who were served under
the Individuals with Disabilities Education Act (IDEA). The number and percentage Of
children and youth ages 3-21 receiving special education services in regular classrooms
increased nearly every year since the inception of IDEA (US. Department of Education,
2009).

The Center for Disease Control and Prevention conducted two national surveys of
parental report of diagnosed autism with children 4-17 years of age in 2003-2004. The
National Health Interview Survey (NHIS) covered 18,885 children and the National
Survey of Children’s Health (NSCH) had 79,590 children with data similar across, sex
and racial/ethnic populations. The results showed consistency and suggest high reliability
with NHIS reporting prevalence rate of 5.7 per 1,000 children and a rate of 5.5 per 1,000
children for NSCH. There are at least 300,000 children from ages 4-17 with autism in the
United States in 2003-2004 (CDC, 2006). In 2005, the Center for Disease Control and
Prevention (2009) recorded that there are 193,637 children aged 6 through 21 years
receiving services for autism up from a reported 22,664 children from 1994.

The Institute of Medicine (IOM, 2007) Report stated that” the trend showed that
over a 40 year period, the proportion of children reported to have major limitations in
their activities related to play and school had gone from less than two per cent (2%) to
close to seven per cent (7%). The trends in the epidemiology of childhood illness and
functioning includes a marked increase in the treatment Of leaming-related disabilities

like autism spectrum disorder with its broader range of conditions (Asperger’s syndrome,

other childhood disintegrative disorders, pervasive developmental disorder, unspecified),
and better identification of medical and health professionals of disorders (IOM, 2007).

The U.S. Department Of Education reported that there are 3,449 children aged 6-
21 served by the Individuals with Disabilities Education Act (IDEA) in Michigan who
had autism in 1999-2000, up from 288 children reported in 1992-1993 (U.S. Department
of Education, 2009). In another Michigan report, it stated that there are 7,259 children in
the state between the ages of 3-22 years Old with autism in 2003 with the increase in
prevalence attributed to younger children with autism, and a 437% cumulative growth
rate in autism diagnoses from 1992-2003 (Michigan Public Schools Prevalence Report,
2004.)

In 2005, the Michigan Birth Defects Registry Vital Records reported that there
were 10,762 cases of birth defects for children less than one year of age for a rate Of
840.0 cases per 10,000 live births. For the same children born during 2005, there were
12,095 cases reported for children less than two years of age. This translates into a
prevalence rate of 944.0 cases per 10,000 live births (Michigan Department of
Community Health, 2005).

Population trends indicate the prevalence of developmental disabilities of children
in general, and autism spectrum disorder, in particular, is a continuing concern for our
families, communities, and country. The marked increase in autism prevalence is
systemic across the United States (Michigan Public Schools Autism Prevalence Report,
2004). These trends are significant enough that we need to provide research that will
study the families who are directly involved with caring for children with autism
spectrum disorders (ASD). There are social, economic, and moral dimensions to this

problem. There is a need to study the role of families, especially mothers, in assisting

their children with autism spectrum disorder, and to identify the social support systems
that will assist the families in accessing early intervention services. Furthermore, there is
a need to involve and engage the families in programs that will assist them in caring for
the children, and making sure that the children have equal Opportunities to education and
societal opportunities for possible employment and independence.

This research study highlights the important role of mothers in caring for children
with ASD. The birth of a child is a source of great anticipation in the family and the
awareness that the child may have been born with challenging characteristics, especially
for the mother, is a source of utmost concern. Research has Shown that mothers have the
primary responsibility of taking care of the child with a disability. Following the trends
that roles of caring for children with disabilities are still assigned according to gender,
women still traditionally hold this status even in current society (Traustadottir, 1991).
The research of Leiter, Krauss, Anderson and Wells (2004) indicated that “maternal
caregiving could reach almost 20 hours a week of home health care to children with
special needs and that this intense caregiving occurs largely during the child’s early and
formative years.” With the mothers’ central responsibility of caring for the child, it is
very important to study the social support networks that will scaffold them in assisting
their children with a disability. Social supports may come from the immediate family, the
extended family, medical and professional communities, schools and institutions. In
family theory and therapy, studies are being conducted on the positive and negative
influences of persons around the nuclear family (Seligman, Goodwin, Paschal, Applegate
and Lehman,l997). According to Dunst, Trivette and Deal (1997), the presence of
different forms of support to families with identified needs enriches parent and family

well being, decreases time demands on the family with a disability, and provides the

parents with positive perceptions of the child’s abilities. This study will significantly
contribute to research on maternal roles, experiences, and social support systems with
families of children with autism spectrum disorder.
Background of the Study

Definition of Developmental Disabilities and Autism Spectrum Disorder

The Centers for Disease Control and Prevention (2008) states that people with
developmental disabilities have problems with major life activities such as language,
mobility, learning, self help and independent living. These disabilities usually last
throughout a person’s lifetime. This position aligns with the mandated definition of the
federal government. Autism spectrum disorder is a neurological developmental disability
that affects the individual’s cognitive development, social communication, behavioral
skills and sensorial integration processes. The broad category Of autism spectrum disorder
includes autism or “classic” autism, Asperger Syndrome, pervasive developmental
disorder not Otherwise specified, Rett syndrome and childhood disintegrative disorder
(Volkmar et a1, 2005)
Legislations in support of persons with disabilities

There were major legislations affecting individuals with developmental
disabilities in the period from 1970 onwards. The Developmental Disabilities Services
and Facilities Construction Act (PL. 91-517) in 1970 first established the concept of
“developmental disabilities. The Education for All Handicapped Children’s Act (PL. 94-
142) in 1975 guaranteed a free and appropriate education to all children. In 1990, this Act
was reauthorized by Former President George H.W. Bush into the Individuals with
Disabilities Education Act (IDEA). The Act included people before the onset of the

disability, expanded the definition Of disability to include children with autism and

traumatic brain injury, and provided support for students with serious emotional
disturbances. The Individuals with Disabilities Education Act Amendments of 1990
(IDEA) required all states to provide free and appropriate education for all children age 3
through 5 years with disabilities, and required states to provide services to infants and
toddlers from birth through 2 years of age with disabilities. These services are called
early intervention services that were directed for prevention and intervention (Anderson,
R. & Littman, R., 1992). The U.S. Department of Education and each state’s Department
of Education was required to record and report specific childhood disabilities including
autism every school year by virtue of IDEA. The autism spectrum category was included
in the reporting requirement in 1991, and it was only until 1992 that most states started
reporting the number of diagnosed cases of autism to the federal government (Michigan
Public Schools Autism Prevalence Report, 2004). Since then, every state has reported an
increase in the number of students with autism (Yazbak, 2003).

The American with Disabilities Act strengthened the rights of persons with
disabilities by extending the civil rights for individuals and providing access in
employment settings, public transportations and public establishments (Wolfe, 1992).

In 1997, Congress passed amendments to IDEA that required states to collect data
on race/ethnicity of students identified as having special education needs. The most
recent reauthorization of IDEA was in 2004 (U.S. Department of Education, 2008).

These legislations made an impact in political rights of parents with children with
disabilities, and mandated schools and institutions to comply with the standards of the
law. But, much needs to be done in the area of applying the law to the practice of caring

for children with disabilities and their families.

Purpose of the Study

The purpose of this research study is to explore the experiences, perspectives,

influences and challenges of mothers with children with autism spectrum disorder as they

live, work, advocate, access information, assistance and support for their children.

Specifically, the following research questions are addressed in this research study:

1.

4.

What are the mothers’ experiences and perspectives during the period of early
detection and period Of diagnosis of the child’s autism spectrum disorder
(ASD)?

What are the mothers’ experiences of social support systems that affect,
influence, assist and challenge mothers in assisting their children during their
early years (birth to early years)?

Using Bronfenbrenner’s ecological systems theory, what are the mothers’
levels of social support in the four systems: microsystem, mesosystem, and
exosystem and macrosystem?

What are the mothers’ perspectives of the relationships and support systems
that Offered the highest degree Of support to the mothers with children with
autism spectrum disorder?

Significance of the Study

Although there is a lot of research on parental engagement and family

involvement especially with the general education population, there is still much to be

studied regarding the research on maternal perspectives of parents with children with

autism spectrum disorder during the child’s early years of birth. Dale, J ahoda, and Knott

(2006) indicated that there iS a need to explore the mothers’ experiences as they try to

make sense of their children’s condition and diagnosis. This research study will address

the mothers’ experiences during early detection and diagnosis of the child’s autism
spectrum disorder. It is important to study the mothers’ experience at this early stages
since this will provide a basis Of understanding their perspectives, responses, intensity of
reactions, and sources and intensity of supports in particular settings. This will be a
qualitative study for the researcher to capture the richness Of the mothers’ experiences
and perspectives as they navigate their way through the special education system.

This research study will be invaluable to the academic community, medical/
healthcare specialists, special education community and mental health professionals. The
research will provide information for families with children with autism spectrum
disorder, and will assist them with wrap—around, consistent care and support services.
Potentially, a level playing field for families with children with disabilities can be
provided. In addition, professionals that are involved in early intervention could use this
information of effective informal and formal support systems to improve best practices.

The study will make a contribution to the knowledge base of maternal and
familial perspectives regarding autism spectrum disorders, generate research interest in
this area of special education, and establish the trustworthiness of utilizing human
ecology theories in framing the experiences of families with disabilities. Furthermore, it
will positively contribute to the improvement of support systems and service delivery to
families with children with autism spectrum disorders and other developmental
disabilities.

Rationale for the Qualitative Study

The qualitative design of this research study will document the mothers’

experiences and perspectives in detail, and provide a holistic, contextual approach to

collecting, categorizing and analyzing data. Cresswell (1994) defined the qualitative

method as process Of problem solving utilizing a holistic approach of detailed views of
participants conducted in natural settings. By using semi-structured interviewing the
study will be able to guide, provide probing questions, and enable the participants to
share their experiences, perspectives, and social support systems in context, and explain
the phenomenon Of living with autism spectrum disorder. The research will utilize the
phenomenological analysis as the means Of collecting data on experiences and meanings,
coding data, and integrating themes to provide a holistic interpretation of the experiences
of the participants (W illig, 2001).
Theoretical F ramework/Conceptual Model

The concept Of social support human networks is closely tied to the ecological
systems theory of human development. The mothers’ experiences as they relate to their
relationships with their children, their spouses, their immediate and extended family
members, and institutional service providers will be closely explored. The mothers’
interrelationships in the context Of schools, neighborhoods and communities in which
they live and raise their families are included in the context of their experiences living
with their children with autism spectrum disorder. The mothers’ experiences,
perspectives, influences, and support systems will be framed and examined within the
theoretical framework of Bronfenbrenner’s ecological systems theory.

The ecology of human development is defined as the “scientific study of the
progressive, mutual accommodation between the developing person and the changing
properties of the immediate and broader contexts in which the person lives
(Bronfenbrenner, 1979, p.21).” The lives and experiences of the mothers with children
with autism spectrum disorders will be described utilizing the ecological systems

approach as it provides a multi-perspective, multi-layered analysis of the research.

 

Spiritual Beliefs

 
    

Government Laws

and Policies __MaCfOSZStem

    
    
 

Erogystem
Mesosystem

    

Spouse or
Partner

    
 
    

Hospital or Medical
Institutions

  
 

Political Ideologies

  

Cultural Beliefs

 

 

Examination of Material
Experience, Perspectives,
Influences, Challenges,
and Supports

 

 

 

 

Figure 1: Theoretical Model: Mother’s experiences and supports nested in
Bronfenbrenner’s Ecological Systems Theory

 

Bronfenbrenner (1979, pp. 23-26) defines the different systems, thus:

A microsystem is a pattern of activities, roles, and interpersonal relations
experienced by the developing person in a given face-to face setting with
particular physical and material features containing other persons with
distinctive characteristics of temperament, personality and systems of belief.

The mesosystem comprises the linkages and processes taking place
between two or more settings containing the developing person (relations between
home and school, school and workplace). It is a system of microsystems.

The exosystem encompasses the linkage and processes taking place
between two or more settings, at least one of which does not ordinarily contain
the developing person, but in which events occur that influence processes within
the immediate setting that does contain that person (for a child, the relation
between the home and the parent’s workplace; for a parent, the relation between
the school and the neighborhood group).

The macrosystem encompasses the culture as a whole in forms of social
organization and associated beliefs and lifestyles.

The microsystem consists of the mother, child, siblings, and spouse (as

applicable) having the immediate family in the very first layer of this ecological systems

theory. By examining the mesosystem, the study allows the researcher to examine the

mothers’ relationships with extended families, friends, workplaces, schools or non-profit

agencies, and their networks of support. The exosystem is another layer that is pertinent

to the discussion because it encompasses the state and federal government’s policies and

directives regarding children with autism spectrum disorder and other developmental

disabilities. The macrosystem consists of the beliefs and value systems of the bigger

11

culture that affects the families’ successes in accessing services and Opportunities for the
children with autism spectrum disorder.

The mothers’ experiences will be explored in the context of their relationships
with their immediate and extended families and maternal perspectives Of social supports
from the circle of friends, schools, institutions, and governments. The study will examine
their perspectives as they advocate, support, and assist their children for equal
opportunities to support services, education and placement.

Terminology
American with Disabilities Act (ADA)

The Americans with Disabilities Act protects the civil rights of individuals with
disabilities similar to those provided to individuals on the basis of race, color, sex,
national origin, age, and religion and the law guarantees equal opportunity for individuals
with disabilities in public accommodations, employment, transportation, State and local
government services, and telecommunications (ADA, 2009).

Autism Spectrum Disorder (ASD)

Autism Spectrum Disorder is a complex neurological developmental disorder
classified into five broad categories of disorders namely: autistic disorder, Asperger
syndrome, pervasive developmental disorder not otherwise specified, Rett syndrome and
childhood disintegrative disorder (Daniels, 2006; O’Brien & Daggett, 2006)

Center for Disease Control and Prevention (CDC)

The Center for Disease Control and Prevention is an agency under the U.S.
Department of Health and Human Services responsible for developing and applying
disease control and prevention activities, environmental health, health promotion and

education in order to improve the health of the United States population (CDC, 2009).

12

Developmental Disability

Developmental disability means substantial delay or a specific congenital or
acquired condition with a high probability Of resulting in a developmental disability if
services are not provided (U.S. Department of Health and Human Services, 2009).
Ecological Systems Theory

Ecological systems theory defines the person’s development within a complex
system of relationships affected by multiple levels of the surrounding environment into
four nested structures: microsystem, mesosytem, exosystem and macrosystem
(Bronfenbrenner, 1979).

Individual with Disabilities Education Act (IDEA)

The Individuals with Disabilities Education Act (IDEA) is a law ensuring early
intervention, special education and related services to children with disabilities
throughout the country by state governments and public agencies (IDEA. 2009).
Phenomenology

Phenomenology is a qualitative research approach that explores subjective
experiences and defines the meaning, structure and essence of the lived experience or
“phenomenon” by a person or group of people (Moustakas, 1988; Spinelli, 1989; Patton,
2002).

Limitations of the Study

The study is limited geographically to residents of Michigan so it cannot be
generalized to the population. The small number of participants may limit the
significance of conclusions that may be derived from the research study. The use of
purposive sampling discourages the generalizability to the population due to the focused

research on mothers with children with autism spectrum disorder.

13

The data collection design Of using face-tO-face interviews where the researcher is
present may encourage socially acceptable responses to the questions. Additionally, the
participants’ responses may also be affected by the disclosure of the researcher being a
mother with a child with autism. The use of the phenomenological method of analysis
has limitations in terms of interpretation due to the “representational validity of
language” (Willig, 2001). By using the phenomenological method, the participants will
express the experience in context and the researcher will transcribe the experience based
on the words used and expressions conveyed by the participants during the interview and
will be subject to the interpretation of the researcher.

Summary

The study utilized a qualitative design with semi-structured interviewing that
focused on experiences, perspectives, influences and social support systems of mothers as
they live, work, advocate, support, and acquire assistance and supports for their children
with autism spectrum disorder. It explored their actual experiences and perspectives and
detailed the phenomenon of being a mother with a child with autism spectrum disorder. It
focused on capturing the lives and experiences of mothers who journey with their
children with autism and create a picture of their everyday realities, challenges, supports,
and their dreams for the future of their children.

The study framed the mothers’ experiences using Bronfenbrenner’s ecological
systems theory. Population data, public policies and trends in research are discussed to
provide a general background of the state of disabilities. The study included information
on the significant changes in the past couple of years in the area Of children’s disabilities

in general and autism spectrum disorder in particular such as: inclusion of diagnoses,

14

awareness of medical and professional practitioners, newer research on special education,
and government regulations.

The study can contribute to the understanding Of maternal perspectives of having
a child with autism spectrum disorder and provide ways for families to be able to relate
more effectively with immediate and extended networks of relationships in support of
their families and children. Furthermore, the study identified and explored the similarities
and differences of the mothers’ experiences. This information can assist in identifying
positive patterns in families and community relationships and improve service delivery.
The study can contribute to the body of knowledge by enabling and empowering the
parents to be able to access support services with solid knowledge of policies and best
practice, and assist families to effectively work with schools, agencies, governmental

institutions, and healthcare professionals.

15

CHAPTER 2

REVIEW OF LITERATURE

The concept of social support human network is closely tied to the ecological
approach to the study of human development. The ecology Of human development has
been defined as the “scientific study of the progressive, mutual accommodation between
the developing person, and the changing properties of the immediate and broader
contexts in which the person lives (Bronfenbrenner, 1979, p.21).” The lives and
experiences Of mothers with children with autism will be described utilizing the
ecological systems approach as it provides a multi-perspective analysis of the research.
The review of literature will address the following topics: 1) Discussion of developmental
disabilities and autism spectrum disorder; 2) Research on Autism Spectrum Disorder; 3)
Quality of Life; and 4) Role of the Mother as the primary parent; 5) Support Systems.

Discussion of Developmental Disabilities and Autism Spectrum Disorder

Childhood disability is defined in many different ways depending upon the intent
of the policy, program or research for which the term is being used (Aron, LOprest and
Steuerle, 1996). These definitions can be based on self-reports of limitations, particular
conditions, or program involvement, for example, enrollment in Supplemental Security
Income ($81). The definition developed by Hogan, Msall, Rogers & Avery (1997) for
children ages 5—17 using the National Health Interview Survey-Disability Supplement or
N HIS-D is based on having a limitation in at least one of the four domains: l)leaming;

2) self care; 3) mobility; and 4) communication. The population characteristics of the
sample of children in the NHIS-D report are as follows: approximately, 3.9 million (8%)

of children between the ages of five and seventeen experience some sort of disability with

16

the top categories of limitation in children reported as follows: learning limitation, 88%
of the total number of children with disabilities, communication limitation (25%), a
mobility limitation (15%) and self care limitation (9%) (Hogan, Msall, Rogers & Avery,
1997).

The federal government defined the term “developmental disability” as a severe,
chronic disability of a person 5 years Of age or Older which is attributable to mental or
physical impairment or combination Of mental and physical impairments; is manifested
before the person attains age twenty-two; is likely to continue indefinitely; results in
substantial functional limitations in three or more following areas of major life activities
of self care, receptive and expressive language, learning, mobility, self-direction, capacity
for independent living and economic self-sufficiency. When applied to infants and young
children from birth to age 5, developmental disability means substantial delay of specific
congenital or an acquired condition with a high probability of resulting in a
developmental disability if services are not provided (U.S. Department of Health and
Human Services, 2009). There is still a lot of ambiguity regarding the definition of
developmental disability even after the term was stated and legislated by the federal
government. Hamner and Turner (2001) stated that the research of Hahn and Kauffman
(2000) defined developmental disabilities as kinds of diagnoses that may overlap with
other conditions. The diagnoses may change over time. Furthermore, many exceptional
children remain undetected, and often parents resist having their children identified as
exceptional because of the stigma attached to labeling their children with the diagnosis.

The term “autistic” was first used as an entry in the 1912 American Journal of
Insanity indicating “instances where thought is divorced from logic and reality” as stated

in the Oxford English Dictionary (O’Brien & Daggett, 2006). In 1922, the Swiss

l7

scientist Eugen Bleuler used the term “autism” and “autistic thinking” to describe “loss Of
contact with reality” (Asperger, 1991). Leo Kanner in 1943 described the syndrome of
childhood autism in a clinical seminal study of 11 children with “autistic disturbances of
affective contact” (Volkmar et al, 2005). Kanner indicated that children with this
syndrome have a constitutional disorder lacking in social interaction and affective
communication. The condition was labeled early infantile autism often misdiagnosed as
having mental retardation or schizophrenia (Volkmar et al, 2005; O’Brien & Daggett,
2006). Hans Asperger elaborated on autism disorder in 1944 and called it “autistic
psychopathy” (Asperger, 1991). Individuals diagnosed with Asperger syndrome have
problems in communication and social skills but have better language abilities and may
achieve more successful adaptation (Frith, 1991).

There is a wide continuum of ranges of severity for the autism spectrum disorder
with some children exhibiting severe language disorders but good motors skills and no
sensory problems while others are challenged socially but gifted with language skills
(O’Brien & Daggett, 2006).

Autism spectrum disorder is one of the thirteen categories of developmental
disabilities. It is a complex neurological developmental disorder with three
classifications, namely, autistic disorder or classic autism, Asperger syndrome and
pervasive developmental disorder not Otherwise specified (Daniels, 2006). However,
according to O’Brien and Daggett (2006), the Diagnostic and Statistical Manual of
Mental Disorders Fourth Edition has classified the autism spectrum disorders (ASDs)
into five broad categories of disorders namely: autistic disorder, Asperger syndrome,
pervasive developmental disorder not otherwise specified, Rett syndrome and childhood

disintegrative disorder. The autistic disorder or “classic autism” is Kanner’s original

18

diagnosis of children having social communication difficulties, repetitive and patterned
behavior and restrictive range of activities. Asperger syndrome shows social deficits and
repetitive behavior but shows no communication or cognitive delay. Children with
Asperger syndrome often score high on Intelligence Quotient (IQ) tests and Show high
general intelligence but struggle in social situations. Pervasive Developmental Disorder-
not otherwise specified is a variable diagnosis depending on the degree of severity and
subjective professional evaluations. This applies to children who meet some of the
criteria of autism, but not the social, behavioral or developmental core areas. These
children may exhibit degrees of social problems in peer interactions, or a range of speech
language delays and behavioral challenges. Rett syndrome is a rare, genetic, disorder
most commonly found in girls that causes physical, mental and neurological decline.
Lastly, childhood disintegrative disorder is a rare condition diagnosed with children who
suffer developmental decline in language, motor or social development. This
developmental decline results in severe autism disorder with concurrent mental
retardation and seizure disorders (O’Brien & Daggett, 2006).

The Center for Disease Control and Prevention (2009) describes autism as a
disability that affects social interaction, communication, sensory integration, and consists
of unusual behaviors and interests with varying ways of learning. The disorder begins
before the age of three years old and lasts through adulthood (CDC, 2009). The autism
spectrum disorder is a behaviorally based diagnosis ranging from mild to severe with the
low functioning person with autism exhibiting non-verbal characteristics, cognitive
impairment, self-injurious and social disconnection to higher functioning abilities of
persons with autism consisting of above average cognitive ability, verbal and social

interactions but with idiosyncratic tendencies (Newschaffer & Curran, 2003).

19

Nevertheless, there are considerable needs for services and supports for children with
autism Since it is a lifelong impairment, and may have concurrent medical conditions
such as Fragile X syndrome, tuberous sclerosis and neurofibromatosis (Gilberg &
Coleman, 1996). According to the CDC report (2009), there was a marked increase in
2005 of 193,637 children aged 6 through 21 years receiving services for autism up from a
reported 22,664 children in 1994.

The Autism and Developmental Disabilities Monitoring Network (ADDM) of the
CDC (2009) through its seven sites (Arizona, Georgia, Maryland, New Jersey, South
Carolina and West Virginia) in the United States reported that the average autism
spectrum disorder (ASD) prevalence was 6.7 per 1,000 for 8 year olds in the year 2000
and 6.6 per 1,000 8 year olds in 2002 which amounts to 1 in 150 children. This study
disclosed that the ASD prevalence was higher among boys than girls with median age of
earliest ASD diagnosis around the ages of four years and four months to four years eight
months. Internationally, the study reported that countries in Europe and Scandinavia
found 12 in l, 000 children diagnosed with autism (CDC, 2009).

Research on Autism Spectrum Disorder

The last two decades have seen a surge of public interests in the area of autism
spectrum disorder. There are national and international research currently ongoing to
address its causes with risk factors that are both genetic and environmental. Research in
early intervention programs has also showed marked increase in funding (Lawler, 2008).

With greater funding allocated to research and higher public attention to autism,
there has been a higher number of diagnosed cases of autism in children making it the
fourth most diagnosed developmental disability after specific learning disability,

speech/language impairment and mental retardation.

20

According to Lawler (2008), increased funding for autism spectrum research can
be accounted for due to increased changes in awareness, diagnostic practices and
availability of services. There is a need to discuss environmental agents such as
pesticides, agrichemicals, pharmaceuticals, nutrition and lifestyle (Lawler, 2008). Family
studies have indicated that there are genetic implications related to the cause of autism
(CDC, 2009). The studies among identical twins have shown that there is a 75%
probability of the other twin being affected if one child has autism; in non-identical
twins, the probability is 3%. Additionally, there is a 2%- 8% chance that parents with
children with autism could have other children that would have the disorder (CDC,
2009). In 1944, Asperger wrote that there is evidence of genetic predisposition and
similar familial characteristics of autism in family members. Recent findings indicated
that “autism spectrum disorders have a high degree of inheritability (Volkmar et al,
2005). The cause of autism in children has also been reported to be linked to the measles-
mumps-rubella (MMR) vaccine and the diphtheria-pertussis-tetanus’ (DPT) use of
thimerosal, a type of mercury used in childhood vaccines. Parents were very concerned
about its causal implication to autism spectrum disorders. According to O’Brien and
Daggett (2006), studies in Denmark, United Kingdom and California had shown no
causal connection of measles—mumps-rubella (MMR) to autism spectrum disorders. In
2004, the Institute of Medicine of the National Academy of Sciences with its
Immunization Safety Review Committee reported that there is no causal link between
vaccines and autism spectrum disorders, and not vaccinating against diseases poses a
greater risk to children (O’Brien & Daggett, 2006).

Various agencies have started promising research projects on the autism spectrum

disorder. Research funding for autism has increased from $11 million in 1995 to $56

21

million in 2001 (Newschaffer & Coleman, 2003). In 2001, the National Institute of
Environmental Health, U.S. Environmental Protection Agency funded the University of
California Davis’ Center for Children’s Environmental Health and Disease Prevention.
This Center conducted the Childhood Autism Risks from Genetics and the Environment
Study (CHARGE) using the large scale population epidemiology study of genetic and
environmental risk factors for autism (Hertz-Picciotto et al, 2006).

The Center for Disease Control and Prevention (2009) started the Centers for
Autism and Developmental Disabilities Surveillance and Epidemiology (CADDRE) to
work on a large population based study called SEED (Study to Explore Early
Development). This study examined the physical and behavioral characteristics of autism,
health and scientific conditions, causes, and risk factors of autism. The SEED study
participants included 2,700 children ages 2 through 5 years of age and their parents. The
CADDRE Network, with site locations in California, Colorado, Georgia, Maryland,
North Carolina and Pennsylvania, are working together to track the prevalence of autism,
improve public awareness to comprehensive care of children and undertake
epidemiologic research on autism and other developmental disabilities.

Hume, Bellini and Pratt (2005) wrote that the National Institutes Of Health
Interagency Autism Coordinating Committee (IACC) developed a 10- year research plan
and matrix of goals and activities supporting autism research. The National Research
Council (2001) conducted a systematic study on early educational interventions for
children with ASD and found significant progress with the majority of children from
birth through 8 years in response to the intervention. In 2007, the National Institute of

Health Genes, Environment, and Health Initiative started funding research in joint effects

22

of genetic and environmental factors in complex disorders advancing the awareness about
environmental influences in the autism spectrum disorder (Lawler, 2008).

There is an international research project in Norway called the Autism Birth
Cohort (ABC) involving the collection of information from pregnant Norwegian mothers
with a projected 100,000 infants in a large, longitudinal, prospective designed study
measuring the natural history and risk factors of autism from birth to early childhood
(Szpir, 2006). Funded by the United Stated Institute of Neurological Disorders and
Stroke, the study is cooperatively led by Columbia University and the Norwegian
Institute of Public Health. The study of autism spectrum disorder has shifted from the
psychological examination of behaviors and diagnostic tools to epidemiological studies
examining genetic causes and environmental factors (Szpir, 2006).

Quality of Life and living with Autism Spectrum Disorder and
other Developmental Disabilities

The concern for quality of life takes into account the factors that affect persons
who are living with autism spectrum disorder and other developmental disabilities.
Quality of life “takes into account the effects of the disability on the quality of life of
significant others particularly the immediate family (Bendell, Stone, Field and Golstein,
1989), The family, especially the mother, bears the responsibility of caring, nurturing,
and raising the child with a developmental disability (Traustadottir, 1991). Primarily,
there will be understandable adjustments in the family responsibilities depending on the
severity of the condition of the disability. There will be changes in the roles of the family,
and challenges and stresses to family members which are factors that will affect the
quality of life of the family and the child with the developmental disability (Weisberger,

1991). According to Gallagher and Powell (1989), the diagnosis of a child with a

23

disability becomes an emotional burden for the parents and siblings in the family
dynamics. Often, the siblings and immediate family feel a sense of guilt, failure, and
lowered self-esteem (Gallagher & Powell, 1989). The emotional stresses, altered
lifestyles, and financial burdens for expensive direct services and intensive intervention
considerably affect families (Newschaffer & Coleman, 2003).
The Role of the Mother as the Primary Parent

Legislation of the Individuals with Disabilities Education Act PL. 94-142
(IDEA) brought family involvement in the educational process to light with the
legislative mandate for parental participation. Recent legislation has also emphasized the
importance of family support and input in service provisions. Parents have been given the
right to informed consent, due process, and the educational planning of their children’s
curriculum (U.S. Department of Health and Human Services, 2009). Wolfe (1992) in her
research reported parents undergo a process of professionalization taking the roles
educator, decision maker, advocate, teacher, case manager, and program evaluator. The
philosophy behind the IDEA legislation is the inclusion of families in early intervention
and prevention, with the key areas of family involvement and adaptation to the child with
special needs, assistance to the access and utilization of services and facilitating service
delivery to the parents and farrrilies (Anderson & Littman, 1992). The role of the parents
is a very important factor in accessing services for children with developmental
disabilities. Weisberger (1991) indicated in his research that successful adults with
disabilities reported that parental supports contributed towards their development of
independence as adults. Parents have an important role in facilitating and supporting
their children’s learning by positive attitude, patience and support. Research shows that

mothers hold a primary role in the care of children (Traustadottir, 1991) especially in

24

families with children with special needs (Traustadottir, 1991; Leiter, Krauss, Anderson
and Wells, 2004; Inocenti, Huh & Boyce, 1992).

Weisberger (1991) stated that the parents play a key advocacy role for children
disabilities especially they are young. The parents are taking steps to protect the rights
and responsibilities of the persons with disabilities especially when they are minors.
Since the mother holds the primary responsibility of caring for the child, then the role of
the mother grows in importance as the child grows (Traustadottir, 1991). Weisberger
(1991) stated if the child is in infancy or early childhood, the parent acts as an advocate
by noting any unusual delays or imbalances in the development of the child.

Support Systems

Research of Marcenko and Meyers have reviewed Gottlieb’s (1983) definition of
support systems which. Gottlieb defined social supports as verbal or non verbal
information, advice, and aid or action with beneficial, emotional or behavioral effects.
House (1981) has indicated four types Of social supports as follows: 1) emotional support
which provides care, esteem, empathy, love, trust, concern and listening; 2) instrumental
support which provides aid, direct help, money, labor or time; 3) informational support
which covers advice, suggestions, and information to problems; and lastly, 4) appraisal
support which provides affirmation, feedback, comparison, and self evaluation. Mothers
of children with autism spectrum disorder need these types of support for their children to
thrive.

Furthermore, the research of Marcenko & Meyers (1991) discussed the outcomes
of several researchers which included the influence of social supports of families of

children with disabilities, positive adaptations of families, fewer out of home placements,

25

lower maternal stresses, and better parent-child interactions (Cole and Meyer, 1.989;
Kazak & Marvin, 1984; Dunst, Trivette & Cross, 1986; Marcenko & Meyers, 1991).
Hamner and Turner (2001) stated the positive relationships between social
supports and the family’s level of stress with critical spousal support. The authors
reported that several researchers have concluded that there is a relationship between the
mother’s well being on depression, marital adjustment, child-mother relationships and
parenting and the partner’s support. The authors also indicated that Trivette and Dunst
(1992) has found that greater informal social support relates to positive parental
emotional and physical well being, less time demands, and integration of family units
with more parent-child interactions and positive perceptions of children’s behavior.
Claire Tregaskis (2006) of the Economic and Social Research Council in London,
England was involved in a research project called Parents, Professionals and Disabled
Babies: Identifying Enabling Care. The purpose of the project was to explore family
experiences of health and social care of babies or young children who required specialist
support in identifying practices that support enabling care for families (Tregaskis, 2006).
According to Tregaskis, the research, which is still in process, disclosed that there are
still fundamental inequalities, structural and attitudinal barriers that persist which
prevents families from accessing health and social care. This makes it more significant
and important to examine the experiences of mothers with autism spectrum disorder. This
research study is necessary in order to identify the assets that provides support and access
and examine the barriers that prevent the mothers and their children from getting help,

assistance and access to much-needed special education services (Tregaskis, 2006).

26

CHAPTER 3
RESEARCH METHODS

The study utilized a qualitative research design. The targeted study sample was
thirteen mothers (n=13) residing in Michigan who are parents of children with autism.
They were recruited through formal means (nonprofit agencies, schools and institutional
contacts) and informal means (parents’ networks). This study used an exploratory
approach to gain a broader and deeper understanding of the parental experiences,
perspectives, influences, supports, and challenges of parents with children with
developmental disabilities specifically during the children’s early years. The study
utilized semi-structured interviews with open ended, in-depth, and probing questions as
the primary form of data collection. The researcher is a doctoral candidate from the
Department of Family and Child Ecology, College of Social Sciences, majoring in
Family and Child Ecology. The researcher is a parent of a child with autism. This fact
was disclosed to the study participants prior to the interviews. The researcher exercised
utmost care not to contribute her perspectives, bias or experiences to the study
participants. This required special sensitivity to the issues facing parents of children with
developmental disabilities and consideration for their values and perspectives in the
formulation of methods and process of interviewing participants. Validity was addressed
by utilizing “pattem-matching” (Campbell, 1975) by working on periodic review of

transcriptions for accuracy, and careful review and analysis of interview and field notes.

27

Qualitative Research Design

The researcher utilized qualitative design as the method of inquiry since this will
allow the systematic collection, organization, interpretation and analysis of data through
interviews. Babbie (2001) stated that a qualitative interview “is an interaction between
an interviewer and a respondent in which the interviewer has a general plan of inquiry
at the same time, it is vital for the qualitative interviewer to be fully familiar with the
questions to be asked.”
Phenomenological Analysis

Edmund Husserl defined transcendental phenomenology as “a philosophic system
rooted in subjective openness” (Moustakas, 1988). Patton (2002) clarified Husserl’s
view by stating that the person’s subjective experiences and reality focuses on meaning-
making as the essence of his/her human experience. Phenomenological inquiry implies
the importance of knowing and understanding the person’s experiences and his/her
interpretation of the reality of the world. The phenomenon should be methodologically
experienced as directly as possible by the researcher through participant observation and
in-depth interviewing (Patton, 2002).

The science of phenomenology was defined by Moustakas (1988) as a research

method framework, thus:

1. Phenomenology focuses on the appearance of things, a return to things just as
they are given, removed from everyday routines and biases of what we are
told is true in nature and in the natural world of everyday living.

2. Phenomenology is concerned with wholeness, with examining entities from
many sides, angles and perspectives until a unified vision of the essence of

experience is achieved.

28

3. Phenomenology seeks meanings in the way things appear, and arrives at
essences through intuition, perception, feelings and reflections on conscious
acts of experience, leading to ideas, concepts, judgments and understandings.

4. Phenomenology is committed to descriptions of experiences, not explanations
or analyses.

5. Phenomenology is rooted in questions which give a direction and focus to
meaning, and in themes which sustain an inquiry, awaken further interest and
concern, and account for our passionate involvement with whatever is being
experienced.

6. Subject and object are integrated — what I see is interwoven with how I see it,
with who I see it with and with who I am.

7. At all points in an investigation inter-subjective reality is part of the process
yet every perception begins with my own sense of what an issue or object or
experience is and means.

8. The data of experience, my own thinking, intuiting, reflecting and judging are
regarded as the primary evidences of scientific investigation.

9. Every method relates back to the question and is developed solely to
illuminate the question, give the phenomenon rich, layered textures and
meanings on the joumey of looking again and again and elucidating the
essence of whatever is being examined and explored.

The research utilized the phenomenological approach as a means for collecting,

coding and analyzing the data. According to Patton (2002), “phenomenology is a focus
on exploring how human beings make sense of experiences and transforms experiences

into consciousness, both individually and as shared meaning it describes how people

29

experience some phenomenon - how they perceive it, describe it, feel about it, judge it,
remember it, make sense of it, and talk about it with others.” The phenomenological
analysis will consist of descriptive narratives synthesized into master themes that reflect
the shared experiences of the participants (Cresswell, 1994; Willig, 2001).

The qualitative phenomenological design is the most appropriate analytical
method to utilize in capturing the experiences of mothers of children with autism, Since
the in-depth interviews will be conducted with mothers who are directly experiencing the
phenomenon of autism spectrum disorder within themselves, their children, families, and
social institutions. The interviews will serve as “windows” through which other families
without children with autism can understand the complexity of the situation.

Subjects/Participants Selection

The targeted study sample was thirteen mothers (n: 13) residing in Michigan who
are parents of children with autism spectrum disorders. The study recruited participants
through purposive sampling. Purposive sampling is defined as selecting a sample “on the
basis of the population and the purpose of the study” (Babbie, 2001). In this case, the
researcher interviewed mothers who have, specifically, children with autism spectrum
disorders and explored their experiences as the “phenomenon” of the study. The
eligibility requirements for the research study were: a) the participant has a child with
autism spectrum disorder as diagnosed by a medical professional, school official or
special education specialist; b) the participant’s child age is within the range of 2-10
years Old; c) the participant’s gender is female. The participants were recruited through
formal and informal means. An information letter was sent to agencies or organizations
that had access to mothers Of children with autism spectrum disorder. These agencies

included, but were not limited to, Head Start Programs, public and private early

30

childhood centers, nonprofit agencies, schools, special education support Offices, and

parent support networks, associations supporting families with special needs and

specialists’ offices (speech therapists, occupational therapists and physical therapists).
Instrumentation

The interview documents consisted of demographic data sheet, list of interview
questions and eco-map document for the participant. The researcher took field and
observation notes during the interviews.

The demographic data included the participants’ names, ages, s, ---highest level
of education], religion (not mandatory), marital statuses, employments, household
incomes, races/ethnicities, family compositions and locations of domicile. It also
included the participants’ children’s information such as ages, genders, sibling
composition, and autism diagnoses. The interview questions were conducted in a semi-
structured, open procedure (See Appendix D). The participants’ responses to the
interview questions and probes were audio-taped or digitally recorded with informed
consent from the participants. The participants were informed and requested to complete
an eco-map (Appendix E). The researcher wrote field and observation notes during and
after the interviews.

Data Collection Procedure
Recruitment procedure

Information and consent letters were given to the interested participants following
the policy of the Institutional Review Board of Michigan State University regarding the
research of human subjects. The researcher met with the interested participants, oriented,

and debriefed them regarding their participation in the research study. The researcher

31

thoroughly discussed the Institutional Review Board policy regarding human subjects for
research and its confidentiality agreement.

The participants were informed that participation in the study is voluntary. The
researcher assured the participants of confidentiality. The researcher informed the
participants that the research will: protect the participants’ privacy by assigning
pseudonyms or participant codes to each participant, keep all interview data confidential,
assign numbers to the participants’ interviews so no identifying information is attached to
the data, and keep all interview data confidential. The participants were informed that all
data collected will only be used for academic purposes.

The researcher disclosed that she is a mother of a child with autism prior to
participation in the study. The researcher took the role of acquisition of knowledge and
did not contribute her perspectives, bias or opinions to the research study.

Participants were informed about the purpose of the study, schedules and timeline
for the research project. They were asked to Sign the informed consent agreement to
confirm participation in the study, after which time the interview was scheduled.

The participants were informed that if there are any inquiries or concerns about
the research, they can contact the researcher, the Chair of the Dissertation Committee, or
the Chair of Michigan State University Institutional Review Board. Furthermore, the
participants were informed that, at any time, they can withdraw without penalty.
Interview Procedure

Participants were asked to complete a demographic data sheet, eco-map, and to
answer a series of open-ended questions. Each interview was audio taped or digitally
recorded and transcribed verbatim. The interview sessions lasted 1.5- 2 hours. The

researcher also recorded field notes and observations. Approval of the project was

32

secured from the Institutional Review Board of the University Committee on Research
Involving Human Subjects, Michigan State University. The participants’ consents were
obtained before conducting the interviews.

The researcher asked the participants for a site that would be most convenient for
the interview. The site was to be a natural setting where the participant would be most
comfortable. The researcher offered three office sites located in Lansing, Detroit and/or
Oakland County for the interviews. The researcher made every effort to establish a
relationship with the participants that was neutral, professional, and as objective as
possible in the conduct of the research project.

The study utilized semi- structured with open-ended, in-depth, and probing
questions as the primary form of data collection. The researcher conducted all interviews
in order to establish rapport and trust with the participants. There were a total of 13
interviews conducted during the study. . The interviews were conducted using the
questions that were designed to investigate, and examine maternal perspectives regarding
their experiences of being mothers of children with autism spectrum disorder, and
probing for their ecological support systems. Responses to the interview questions were
audio-taped or digitally voice recorded, transcribed and analyzed by researcher. The
researcher asked the participants to complete an eco-map. The eco-maps served as visual
diagrams of the participants’ social support systems. The researcher took field notes
divided into empirical observations and subjective interpretations during the interview
sessions and recorded additional observation notes immediately after leaving the
interview Sites.

Data were transcribed from the participants’ audio-taped or digitally voice

recorded interviews. Emerging themes were identified from the specific interviews. The

33

data were rigorously analyzed and confirmed using the transcriptions and field notes
during and immediately after leaving the interview sites. By utilizing transcribed audio -
recorded data, completed eco-map, and field notes, the researcher was able to capture as
much thematic categories and establish the reliability and validity of data.
Research Audit Trail

Researcher kept a calendar of day-to-day activities and corresponding
methodological notes about the project. The data were from participants’ interviews and
rigorously transcribed. The data included participants’ answers to probing questions, field
notes and researcher observations. Each participant was assigned a participant code
immediately after the consent form had been signed. The participant codes were
subsequently used by the researcher on all documents (demographic information,
interview transcriptions, field notes and Observations) to maintain confidentiality and
privacy of proceedings. For example, the first participant to be interviewed was assigned
Al; the second participant was assigned B1 for her interview and so forth. The
documents were only reviewed and made available to the researcher, Chair and members
of the Dissertation Committee, and the Institutional Review Board as necessary. All
documents were kept in a locked storage in the Dissertation Faculty Chair’s office.

Data Analysis Procedure

The researcher had the following documents for data analysis: demographic
information, transcripts of the interviews, completed eco-map by the participant, field
notes, narrative documents, thematic analysis notes of the researcher, and examination
records of thematic output documents.

The research utilized the phenomenological approach as a means for collecting,

coding and analyzing the data. The data collected were periodically reviewed and

34

categorized by participants’ findings and initial themes based on the theoretical
framework of the study. The qualitative data analysis looked for patterns in the data by
identifying frequencies, magnitudes, order of occurrences and processes, causes and
consequences (Loffland & Loffland, 1995). The analysis searched for patterns, themes,
relationships, significance, meanings, and degree of parental affect of the maternal
perspective of the support systems available to parents with children with developmental
disabilities. The researcher used open coding by examining, reviewing, naming, and
categorizing the data. This procedure broke down the data into distinct parts, was
reviewed and examined for similarities or differences, and was questioned about the
phenomena that the data is presenting (Strauss and Corbin, 1990). The researcher used
index cards and charts in the process of coding the data. The researcher charted the
reconstruction of data by developing the categories and themes, analyzing the statements
and findings, connecting the data to existing literature and integrating the concepts. The
procedure employed cross-analyzing the data by methodically reviewing the
interrelationships between and among the data (Huberrnan & Miles, 1994). The outputs
for analysis included transcripts of the interviews, narrative documents (field notes and
observations), thematic analysis notes and output documents of the researcher. All of

these outputs were cross referenced to improve the reliability and validity Of data.

Reliability and Validity of Data
The research assured the reliability and validity of the qualitative data by
comparing the transcribed participant interviews with participants’ completed eco-maps,
the researcher’s field notes and the thematic research documents. With the use of

interviews, eco-maps, and field notes, the researcher will be able to check for

35

consistencies of what people say overtime (Patton, 2002). With the use of audio or digital
voice recording during the interview as part of the process, the researcher was able to
review the findings in the data for accuracy and fair reporting of the phenomenon.
Through this process, the records and answers of the participants were confirmed. These

methods increased the reliability and validity of the data.

36

CHMJWIHI4

RESULTS

The researcher informed the participants about the research study, explained the
nature and background information of the research, and notified them of the informed
consent form. All the participants read, reviewed, and signed the informed consent forms
as approved by Michigan State University Institutional Research Board (IRB) prior to
participation in the study. This chapter covers the following topics: 1) Demographic
Data; 2) Mother’s Experiences and Perspectives; 3) Identification of Mothers’ Support
Systems; and, 4) Mother’s Types and Levels of Supports based on Ecological Systems
Theory.

Demographic data were collected from the participants to secure the following
information: age, race/ethnicity, highest level of education, religion (not mandatory)
marital status, socio—economic status, employment status of participants and spouses,
their household incomes, family composition at home, and location of domicile (urban,
suburban, rural or other specified). Additionally, participants’ child demographic data
information included age of child at time of interview, gender/sex of child, number of
Siblings or sibling composition, and nature of diagnosis based on mothers’ self reports
from educational agencies, schools or medical institutions . The interview questions
covered the major research questions regarding the mothers’ ecology of experiences and
supports of parenting children with autism spectrum disorder.

The data were organized and analyzed in a careful, detailed and logical manner.
All informed consent forms, completed demographic questionnaires, participant eco-

maps and interviewer’s notations were carefully filed after each every interview. Each

37

interview was carefully logged in a participant document list. Researcher listened to the
audiotapes twice in order to be familiar with the data. Each interview session was
carefully transcribed from audiotapes. These transcripts were carefully re-checked by
listening to the audio tapes for accuracy.

The transcripts were read and re-read for content analysis in which “both the
content and context of documents are analyzed: themes are identified with the researcher
focusing on the way the theme is treated or presented and the frequency of its occurrence
(Ritchie and Lewis, 2003).” The transcripts were coded for accuracy and researcher
developed a preliminary framework of codes based on the major research questions.
Ritchie and Lewis (2003) further indicated that the use of a framework is significant in
explanatory analysis because it has the “ability to look within cases across a range of
different themes and phenomena and ability to move rapidly between thematic and case
based analysis because of the matrix display.” Based on the framework, each case was
carefully read, re-read, reviewed, analyzed, and coded. Data were coded and charted
within a matrix display. Coding was done by identifying each participant’s responses
into clusters. The clusters of responses were categorized into themes which were directly
linked to the major research questions. The clusters were derived from the participants’
interviews and explanations of their experiences with the phenomenon of parenting
children with autism. Furthermore, clusters were derived from participants’ interviews
with similar qualities or characteristics of responses. The researcher used the actual
words of participants’ responses in order to code and integrate the results of the
interviews into the themes for analysis. The themes of analysis consisted of emergent

themes, contextual factors and thematic sections.

38

Demographic Data
Demographic Data of the Participants/Mothers

Results of the demographic data of the participants (see Table 1) are as follows:
four (4) of the participants are ages 26-35 years and nine (9) ages 36-45. The results
reveals race/ethnic composition of eight (8) Whites or Caucasians, two (2) African-
Americans, one (1) Asian-American, and two (2) Hispanic-Americans/Latino. The
religious affiliations of the participants are three (3) Protestants, five (5) Catholics, two
(2) Lutheran, one (1) Unity, one (1) Christian, and one (1) marked other but no specific
religion. The marital statuses of the participants were 11 married, 1 single and 1
divorced/separated.

The majority of the mothers are over 26 years old at time of interview and
married with varied race/ethnic composition. Most of the mothers are Christians.

Levels of education of participants include one (1) high school graduate, three (3)
with Associate degree, seven (7) with Bachelors’ degree, and two (2) with Master’s
degrees. The results of the participants’ employment statuses are 8 employed, 8
unemployed and one (1) in-between job. Reported , household income data of
participants are reported as follows: out of 13 participants, one participant reported an
income within the range of $100,000.00 —$149,999.00; eight participants reported
income within the range of $75,000.00 - $99,999.00; three participants reported income
within the range of $35,000.00-$74,999.00 and one participant reported an income of

$34,999.00 and lower.

39

Table 1: Demographic Characteristics of Participants/Mothers in the Study

 

 

 

 

 

 

 

 

 

Variable Research Variable Rmmh
Participants (N) Participants (N)
Agg Race/Ethnicity
19-25 0 White Caucasian 8
26-35 4 African American/Black 2
36-45 9 Asian American 1
46-55 0 Native American 0
Over 55 0 Hispanic American/Latino 2
Other 0
Variable Rw'd' Variable “fem"

Participants (N)

Participants (N)

 

Religion

Highest Level of Education

 

 

 

 

 

 

 

 

 

 

 

 

 

Protestant 5 High School 1
Catholic 5 Associate Degree 3
Jewish 0 Bachelors Degree 7
Islamic 0 Masters Degree 2
Hindu 0 Doctoral Degree 0
Other 0 Other 0
None 3

. Research . Research
Variable Participants (N) Variable Participants (N)

Marital Status Employment Status

Married 1 1 Employed 4
Not Married 1 Not Employed 8
Div/Sep 1 In Between Jobs 1
Variable Research Variable Research

Participants (N)

Participants (N

 

Household Income! Ran e

$200,000/up

Family Commsition at Home
Father /Partner

12

 

$150,000-
199,999

Mother

13

 

$100,000-
149999

Other Children

10

 

$75000-
$99,999.00

Grandparents

 

$35000-
74,999.00

Other Relatives

 

34,999/lower

Friends

0

 

Other

 

 

 

Variable

Research
Participants (N)

 

Locations of Domicl
Urban

il_e

2

 

Suburban

8

 

 

 

Rural

3

 

 

40

 

The majority of the participants accomplished post-high school academic degrees
with two mothers accomplishing graduate degrees. Most mothers have family incomes of
over $75,000.00.

Marital statuses of the participants were 11 married, 1 single and 1
divorced/separated. Family composition at home consisted of twelve (12) mothers with
fathers/spouses living at home, ten (10) with children other than the child with autism
spectrum disorder (ASD), and two (2) of the participants with grandparents living at
home (Figure 8). The participants’ locations of domicile are as follows: two (2) urban,
eight (8) suburban, and three (3) rural.. The results indicate that mothers have stable
households with 12 Spouses/partners living at home. One mother has a spouse and child’s
grandmother living at home. Another mother has a child’s grandmother living at home.
All the mothers have two- parent households with spouses and grandmothers serving as
parents.

Demographic Data of Participants’ Children

The demographic characteristics of children of participants are indicated in Table
2. There are eleven (11) boys and two (2) girls with ages as follows: one (1) 4-year old
child, two (2) 5-year old children, five (5) 7-year old children, one (1) 8-year old child,
one (1) 9 year old child, two (2) 10-year old children, and one (1) 11-year old child The
Sibling composition of the participants’ children with autism spectrum disorder (ASD) is
as follows: two (2) of the children have no siblings, eight (8) of them have one sibling,
two (2) of the children have two siblings, and one (1) child had three or more siblings .
The nature of autism spectrum diagnoses as reported by the mothers are as follows: 8
Classic Autism, 3 Asperger Syndrome and 2 Pervasive Developmental Disorder Not

Otherwise Specified.

41

Table 2: Demographic Characteristics of Participants’ Children in the Study

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Variable Research Variable Research
Partrcrpants (N) Participants (N)
Gender Age;
Male 11 4 years old 1
Female 2 5 years old 2
7 years Old 5
8 years old 1
9 years old 1
10 years old 2
1 1 years old 1
. Research . Research
“"3”" Participants (N) vanable Participants (N)
m . . Autism Diaggosis
Compgsrtlon
None 2 Classic Autism 8
1 sibling 8 Asperger Syndrome 3
2 siblings 2 Pervasive DDNOS 2
3. or more 1 Rett Syndrome O
srbhggs
Child Disintegrative Disorder 0

 

 

Most of the participants’ children with ASD are boys, over 7 years old of age and
have siblings in the family. Most of the mothers’ self reported diagnoses of the children
are categorized under Classic Autism.

Mother’s Experiences and Perspectives during Early Detection and Diagnosis

Research question #1: “What are the mothers’ experiences and perspectives
during the period of early detection and period of diagnosis of the child’s autism
spectrum disorder (ASD)?

Two-thirds of the mothers have difficult pregnancies due to the children’s
premature birth or mother’s sickness during pregnancy. Most of them have reported.
Observing the children’s developmental delays starting at 12 months. The children started
exhibiting screaming fits, challenging behaviors, playing in isolation, and difficulty in

socialization. The mothers’ experiences ranged from feelings of uncertainty, insecurity,

42

disbelief, and fear of the future. During the interviews, the majority of the mothers had a
difficult time even sharing their first experiences with the child who later on received the
diagnosis of autism. One mother said,

“Maybe a little bit of denial. So we figure okay we’ll put him in a
religious-based environment, and maybe that would help. Yeah. So he was doing
okay there, but then the behavior started to run out the building, being disruptive,
the screaming for no reason. So the director of the facility said, “Well let’s call in
the school district and have them meet you because something is not right. You
really need to consider having them reviewed him. ” Maybe still a little bit of
denial (for me) but more so, I think it’s the mom. You kinda know something is not
right. ”

A majority of the parents expressed relief over finally getting the diagnosis. Most
of them said that there is a sense of relief that they felt after getting the confirmation of
diagnosis. On the one hand, they said they wished they were proven wrong. Nevertheless,
after a period of grieving, most of them decided that they needed to move forward and
find support and services for their children. One mother turned to her family for support
and she shared,

“After the diagnosis, something changed in me. Because our family is a
very much a part of our children ’s lives. You know helping us raise them. We
firmly believe in “It takes a village. ” And quite frankly without them, we can ’t do
what we do. So I just sat them down and said, “You know, this is what’s going on.
I mean, “Do you guys (wish to) participate in helping us? And this is how I need

you to participate. ”

43

Still, for three of the mothers, the journey was not easy. Their spouses or
significant others were either busy with work and not engaged in the child rearing, or the
spouses themselves were not accepting of the children’s condition and its attendant
implications. One mother said,

“Yes. Well, he ’s not as involved as I am with the children and he works a
lot. He always traveled a lot. I was still working part-time at the time. Actually
no, I wasn ’t at that time, I thought. As soon as I got laid 01% as soon as (name of
child) was born, you know, I wasn’t, but he works a lot and this stufi all falls on
me. ”

Changes in Lifestyle

There were definite changes to the lifestyle of parents that included: adjustments to
the different routines of the children with ASD ( especially in the case of 2 or more
children in the family), less time with spouse and other family members, administering
medical procedures such as giving shots or prescription medicines to the children,
learning to converse with medical and school professionals to obtain necessary help for
the children, and learning to be more open to the public about the child’s disability.

Most of the mothers felt emotionally challenged by the untoward treatment of their
children by other people’s intolerance or lack of compassion. Due to these challenging
Situations, the mothers report that they are more understanding of other people’s children
and their behavior. They continue to work through understanding other family members’
reactions towards their children, especially during gatherings and social situations. The

majority of the mothers attended national and local conferences/workshops/meetings to

find out about cutting-edge programs. Two mothers participated in university research

studies. The majority of the mothers volunteered at their children’s schools and engaged

professionals in order to obtain the assistance they need for their children.

Avoidance of Public Places

Most of the participants shared their uncertainty and avoidance to go to public
places or social situations due to their child’s diagnosis and possible behavior in public
situations. One participant shared about not being able to go in public theatres. She

shared,

“Yes, in the cinema, the supervisor, because she (the child) start to look
the first movie and in the movie somebody say, “uh, oh, ” and she say, “uh, oh. ”
So, in the room, in the movie, ten people, we are four and when they say, “Could
you stop your daughter because we don ’t want to hear it anymore? ” (My
daughter) doesn ’t stop she only say, “uh, oh, uh, oh!” The supervisor comes pull
me out of the cinema, (my daughter) is crying, my son is crying because I am

angry and my husband is angry. ”

Similar to this experience, another participant said,

“I mean I would take him to my in laws or if I had to go anywhere, I
didn’t, I never took him with me. I was in grief. I didn’t go to people ’s houses. I
didn’t take him to anybody’s homes because he would destroy (things) and I
would never be able to have a conversation because he was screaming the whole
time, so it just wasn ’t worth it to me and I was -- it wasn ’t that I was embarrassed
but yeah, at the same time, I felt it was constantly explaining his behaviors to

people... constantly. “

45

Difficulty in Social Relationships

Another participant discussed her difficulty of connecting with other mothers or

joining in social situations. She said,

“I really didn’t have (recreation time). It was hard to make friends. I tried
to though they have a mom ’s club I tried to go to those but it ’s hard because they
have play dates and he would hit other kids and poke other kids and I believe

really frustrated for sure, I guess that’s true. But it didn ’t work. ”

One mother use to avoid going out in public and shared her story. She said,

“Now, I will say that we don’t let things really stop us now. I mean -- See,
I think one of the things I grieved was just having a normal family life because I
love to do things with my kids. I mean they’re my life and it was really hard for
me to realize that, “Okay, (name of child with ASD) cannot. ” He can ’t function
in a restaurant. He can 't function on a family vacation. I mean it was just like I
lost everything. I thought, “Oh my gosh! ” I can 't, you know, for (name of sibling
of child). I thought she ’s going to really sufi‘er and I ’m just not. I ’m one of those

parents that if there ’s a will, I ’m going to make it. . . ”

Allowance for more Medical Appointments and Specialists’ Visits

Upon diagnosis, participants reported more medical appointments and specialists’

visits. One mother indicated that,

“It was more like too many doctors’ ofi‘ices to go to. When he was
diagnosed as you know, there ’s something with him, with the neck, with the eye,

with the stomach, constipation, with the autism, with, you know, asthma. It took a

46

lot of doctors to help (him), a lot of emergency (visits) for loss of breath, loss of,

you know, shortness of breath. ”

Mother’s Perspectives on Recovery or Healing from Autism

One participant, who is a special education teacher, shared her perspective about
the condition of autism. She said,

“When I heard that Dr. (medical doctor’s name) said he could easily grow
out of it, with autism, you can ’t grow out of autism, at least from my
understanding. True autism you never outgrew it, and so I really questioned that
and when I shared that with our pediatrician, I didn’t share my thoughts on that
but my pediatrician ’s response and me were the same. You can’t really outgrow
autism and so I’m glad I’m not the only one who have that thought you know, it
just was like that proved me true.”

However, three participant s believed that autism spectrum disorder is a disorder
that could be healed. One participant shared that,

“It’s -- there are -- there ’3 a movement in the United States...0kay. It’s

called DAN. Defeat Autism Now is the acronym...and it basically says that these

kids have medical issues that have to be treated. It ’s not just a
mental/psychological behavioral issue...and if you can heal those issues, then

you basically heal autism and it is basically a detox program. It’s detox. “

This mother made a commitment to do the detoxification program for her son.

Her son is taking prescribed vitamins and is on a gluten-free casein-free diet. For a while,
she went through a period of pain while administering the program with her son’s

hallucinations, screaming fits, and challenges with verbal communication. She indicated

that after a period of 14 days from Start of treatment, he started showing improvements.

47

She said she believed in DAN’S programs and will continue to follow their program of
child recovery from ASD. One mother felt the organization motivated parents to be more

involved in search for treatment of autism. She stated,

“Overwhelmed but excited, that I was doing something for my son, like
okay we ’re being proactive and we ’11 get the right things, put them in place.
We’re gonna start. We’re gonna beat this because a lot of those moms then were
doing biomedical intervention. What the biomedical approach is usually
overseen by a DAN doctor and DAN stands for Defeat Autism Now. This DAN
doctor specializes in everything on physiological, biological level on the body.
Initially, you do some blood work. They will look at everything - how the
‘workings’ are working in the body any signs of oxidation. You know, heavy metal
toxicity. I mean lots of stufl they look at because what they have found by doing
this biomedical is that each child of autism is very different. They may have the
label of autism; but how it aflects their body, no two children are alike.
Everything about (name of child) is all information in the body, everything we

have done to target (the disorder). ”

Feelings of Denial, Sadness, Uncertainty and Grief
One mother reported her sadness and uncertainty with her child. In retrospection,

she shared her story, thus:

“Now, when she was young, when you look back, when she was younger
around 2. . . Remember, when early on when (someone) talked to you about it,
were you the one who felt there was something a little different? Or was it

because somebody approached you because you were feeling fine and she was

48

playing and she was quiet? Were there people around you who said, hmm, you

know? ”

One participant felt sad about how other mothers treat her and her child.

“I feel sad or worry but when passing time is like a family. You put out
this people that you like . . . they say, “Oh, why do you think (it) happen(ed)?” I
feel ignored. I have depression. But, after an hour, I say, “Yeah, okay, it is
nothing new to me. It’s okay. Time to get new friends. ”

All of the participants expressed the feeling of grief over the experience of having
a child with ASD and some are still not quite accepting of the situation. One participant
deeply shared her grief and said,

“I just -— I felt like it wasn’t fair. It wasn’t fair that I couldn’t have a
normal experience with the two of them (her two children). I think I really
grieved a long time, the fact that I didn’t, I couldn ’t know what a real typical boy
was like and what a brother-sister interaction...should be like, so I really did
grieve out a lot. ”

Another one said,

“I worry about the day something may happen to me. Who would be there
for him ? ”

Acceptance of the diagnosis and maternal empowerment: Tenacity for the

present and hope for the future

One participant indicated that,

“There will always be bad times and good times with your child and

always be there when they need help . . . that what you know is not just being out

49

when they have fun but be there with them and have a good time and when they

have you because that is always going to be until they grow up. ”

Creating Positive Experiences for Child

Two of the participants discussed about conducting summer program on social
skills activities with other mothers with children with similar diagnosis. One of the

mothers said,

“Like me and another friend, we made our own class and we let some
other mothers, friends and their children participate on that and you know, after
that year -that summer, he did not need some social skills anymore. I was
amazed at the progress that he made. He still gets something through the

school. ”

Determination in obtaining information, resources and services for the

children: The quest for researching the diagnosis

All participants were very proactive in researching information, resources and
referrals about their children’s diagnosis. They seek resource information through
medical and educational professionals, professional and personal networks, national and
local conferences on autism, books, and website/online resources. Most of the
participants are internet—savvy and get their information about matters they do not

understand by looking them up online. One mother said,

“I would say that 80% of it was our own research because when you have
a child with autism, your doctors (can help you), your partner, but you really

have to do (it) on your own. I believe you have to do your own research and you

50

have to and then I use my doctor as a tool -- not as a tool but obviously -- but as a
partner in healing (your child). I have another friend. It ’s kind of a longer way.
The Lord kind of led me to this certain people and there’s -- I have a friend who —-
she became a friend of mine because I home-school and I went to a conference.
This would have been the May after (name of child) was diagnosed, so about
seven months later. She was doing a breakout session on autism and home-
schooling kids with special needs and she was doing it from a medical perspective

9

as well and so I started talking to her.’

Recapturing one’s sense of being and maturity

Participants have reported not being able to take care of themselves as they parent
their children with special needs. They found themselves in situations wherein they
needed to renew themselves, to take stock of the situation and recapture their sense of
self and direction. One participant was struggling with her marriage and herself and

found it through therapy and exercise. Thoughtfully, she shared this experience.

“There was a lot of underlying issues that had occurred over the past ten
years that needed to be addressed, but because I’m such I want to fix things I
thought I could do on my own but I couldn’t. The relationship I was having with
my daughter at that time, it was turning into a relationship I had with my mom,
and I didn’t like that. There was more a lot of yelling and screaming, it just you
know hard, hard discipline, I was just not liking the person I was becoming, so I
had a lot of emotional stufl because finally at that time last year, I was able to sit
down, relaxed and think about what had gone on . . . I went 0 my God and all the

old emotions started to resurface, I have suppressed them for so many years, they

51

started to resurface . . . Yeah, definitely it was the therapy, and actually exercise.
I have been an athlete my whole life. You know, that was my medicine. Everything
(was) put on hold because (it) is all about your kids; it is nobody else but your
kids. And I have devoted myself so much that I have lost myself along the way of
who I was, what I was and what I wanted, and I just saw myself as mom. I didn’t
see myself as (name of participant) anymore -the woman whom my husband chose
to fall in love with for many years. But I know, I changed and matured but there is

(6

always that part of you that makes (you) who you are.

Another participant shared her growth as a person through the experience of

parenting a Child with ASD. She shared,

“I don’t attend church on a regular basis but I do pray and I do. My
patience is a lot better as (I am not) a patient person . . . and I think this was in a
strange way, part of a test in my development as a person. I needed to develop a

lot more patience and a lot more understanding for people in general. ”

Knowledge Sharing

All participants stated that they are willing to share their knowledge of what they
have learned and are learning through the process of parenting a child with ASD.
Although, some of them have expressed reservations that they would rather be asked and
not initially offer their knowledge to other parents as those parents may not be in a place
where the latter are ready to accept the diagnosis and receive help. One participant

expressed her enthusiasm and optimism and said,

52

“Any chance I get, if I know I can help a parent this much, I ’m all about it
because knowledge is wealth. And you know, and it ’s power too - to have a
confident parent of a child with autism is a thousand times better with a parent
who has no direction and is complacent just accepting it for what it is. We know
we have far too much available. We know so much more about it now. Just accept
it for what it is and acceptable for me (but you) need to (go) forward and dive in

and get in, and get information and say I have options. There is hope. ”

Identification of Mothers’ Social Support Systems

Research question #2: What are the mothers’ experiences of social support
systems that affect, influence, assist and challenge mothers in assisting their children
during their early years (birth to early years)?”

All participants were asked to complete an eco-map to indicate and enumerate
their sources of support. Sources of supports were as follows: parents, spouses, friends,
specialists (occupational therapists, physical therapists, nurse practitioners, speech
therapists), school teacher, medical doctors, social affiliations, autism spectrum disorder
(ASD) support group, siblings of the children, daycare worker, other children or friends
of child with ASD, church group, other family (sisters of participants) and neighbors.
Furthermore, participants were asked to indicate on the eco-map their level of perceived
relationships using the following indicators: very strong support, strong support, very
strong and stressful support, strong and stressful support and stressful support (See
Tables 3/Figure 2 & Table 4/ Figures 3). This reporting does not indicate any level of
intensity or interval relationships but rather, allows the participants to express their

perception of relationship to their sources of support. Collectively, the participants

53

identified parents as giving very strong support at 38.89% (7 out of 18 times) and 33.33%
as giving strong and stressful support (6 out of 18). Twelve of the participants reported
that their spouses were sources of very strong support at 50% (6 out of 12 times) with the
other half reporting stressful perceptions at 25% (3 out of 12 times) for strong and

stressful support.

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Participants perceived and reported their friends 27 times as strong sources of
support and 59.26% (16 out of 27) of those friends were described as giving very strong
support. Four specialists were indicated by participants with 75% (3 out of 4 specialists)
giving very strong support. Meanwhile, participants perceived school teachers across the
board with 29.41% (5 out of 17 times) reporting strong support, 23.53% (4 out of 17
times) reporting very strong support, and 23.53% (4 out of 17 times) reporting strong and
stressful support. Doctors were reported by the participants as giving strong support
54.55% (6 out of 11 times) with perceived stress at 18.18% (2 out of 11 times) for
stressful support and 18.88% (2 out of 11 times) for strong and stressful support. The
participants reported stressful relationships with their medical practitioners.

Social affiliations through attending conferences were reported by one participant
as a source of strong support. Autism spectrum disorder support groups in their school or
community were considered by participants as sources of strong support at 100% (3 out
of 3 times). Participants reported varying degrees of perceived support for the siblings of
children with ASD with 42.86% as source of very strong support (3 out of 7 times),
28.57% as stressful support (2 out of 7 times) and 28.57% as strong and stressful support
(2 out of 7 times). One participant reported a day care worker as giving strong support.
The participants reported that other children or friends of participants’ child with ASD
gave them very strong support at 75% (3 out of 4 friends). The majority of church
groups/members were perceived by participants as source of strong support at 50% (4 out
of 8 times) and 37.5% (3 out of 8 times). Some participants reported about concerns over
other family members like sisters perceived as sources of stressful support at 41.67% (5

out of 12) and neighbors at 75% (3 out of 4 times as sources of stressful support).

59

Mothers’ Types of and Levels of Supports based on Bronfenbrenner’s Ecological
Systems

Research question #3: “Using Bronfenbrenner’s ecological systems theory, what
are the mothers’ levels of social support in the four systems: microsystem, mesosystem,
and exosystem and macrosystem?

Research question #4: “What are the mothers’ perspectives of the relationships
and support systems that offered the highest degree of support to the mothers with
children with autism spectrum disorder?”

The majority of participants reported strengths of social supports as coming from
spouses, parents and friends. Fifty per cent of the 12 respondents reported very strong
support from their spouses with the other 50% reporting varying strengths of stressful
support. Participants perceived their parents as giving very strong support at 38.89% with
an additional 33.33% as strong and stressful supports. The group collectively qualified
their friends as strong sources of very strong support at 59.26%.

Parental support

All participants reported getting strong support from their parents, whether or not
the parents were accepting of the diagnosis of the child or not. One participant shared

about her parents’ solid support after the child was diagnosed. She shared,

“My parents? They were completely supportive, they got books, they

could read some more and learn some more and they shared books with me.’

One mother got teary-eyed when asked about the person who gives her the most

support and she responded that her mother’s support for her family and children remains

60

on top of her list. She shared,

“She ’s still my hero, because she ’5 been through a lot with my father. You
know her own family thing. You know, she still makes time to say, “Okay, I ’m
going to the store and make me a list.” It’s not always, she will actually buy it.
Like, I don’t have to give her the money back. It is like, I know what she makes
and I know her situation, you know, taking care of the kids for me and taking him
to the doctor. I don’t have to take off work. She does a lot. Her feeling has
always been, “I can ’t give you money. I can’t give you a million dollars. And
this is my way of helping you in your life. And that’s by supporting you with your
family. “
Spousal Support
Participants described the feeling of grief and inability to function in the midst of
family support. They expressed that it helped that there were people around them who
maintained optimism and remained proactive despite the challenges of parenting a child
with ASD. When asked about family dynamics between her husband and her, one

mother shared,

“Absolutely! He did. He is very -- he’s not. I wouldn’t say, not
emotional. He is emotional. He’s an emotional person, but he’s more of a “let ’3
just get it done. Let ’s fix it. ” So I think as soon as we knew for sure he was like,
“All right. What do we do? Let ’s fix that, ” where I was more like, “Okay, let me
grieve this for a while... ” (Laughs) ...and he has literally just started researching
immediately... and I was, I just started home-schooling (name of sibling of child

with ASD) like it was a month into it. My life was perfect. I was thinking, “0h

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this is great. I ’m going to home-school, ” and tlzen, I get the autism diagnosis and
just totally overwhelmed (me), like I couldn’t even function. I was in bed. I just
like, couldn’t get out of bed for a while, and I finally started seeing that there was
hope, so then once I realized there was hope and that people were getting their
kids better, then I’m like, “Okay. I can tackle this. ” Well then I would -- I kind of
have my roller coaster moments, where it would be like, “Okay. I can do this.
Oh, my gosh! I can ’t do this, ” and it was such a slow process of seeing progress.
At least for me, it seems slow even though, we are like now going only to two
years to get him to where he is. It ’s a long two years and it actually started
before the two years...because it started when he was even over 15 months old, so
to me, it’s been almost four years because he’ll be 5 in December - -- so about

three, four -- three and a half years, I guess now.”

One participant expressed her appreciation about the level of support she gets

from her husband. She said,

“I am grateful about it. We’re team players!”

Additionally, when this participant was asked who supported her the most, she indicated,

“That would be my husband, for sure! The most meaningful is the
relationship with my husband. I mean we have really a solid relationship. We are
definitely team players, we communicate, and we share our feelings honestly with
each other. I think that probably is the most meaningful because just having the
safe person that I can say and share anything and know that he is not going to

judge me or look difi‘erentl y at me. ”

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Support from friends

Participants reported having strong relationships with their friends who may have
shared or not shared similar experiences with autism spectrum disorder. Most of them
expressed gratitude over their friends’ understanding of their children’s special needs,
support over a period of years and their kindness and assistance to their families and
children as they navigate through their maternal journeys. One participant described her

two significant friendships that helped her work through her own grief. She shared that,

“I have two who I consider my best friends and she, my other best friend,
(name of friend), lost a child when she was 5 weeks old. She was 5 weeks old.
Yeah, and she would have been (name of child ’s older sibling) ’s age and so
actually, we weren ’t friends before -- we weren’t acquaintances before her
daughter died and that situation, because I just started going to see her ...... made
us really close friends and so when (name of child with ASD) was diagnosed,
there’s a lot of similarities between your feelings, and I ’ve never lost a child and I
will not say that this is the sanze because I know it’s not, but (name of friend) ’s
emotions, and she still deals with those. You know, it has been seven years now,
and my emotions with (name of child with ASD) because I felt like I lost, I felt like
I lost my dreams for him at that time, and so she and I could really connect
because her grief and my grief were very similar. Even though they weren’t the
same, we still went through the same emotions. Even though it was a totally
difi‘erent situation where she lost, she actually physically lost her daughter. I

thought I physically lost my son. ”

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One mother described her friendships with both mothers with and without

children with ASD. She shared,

“Yes, I have both. I ’m definitely closer I think. It’s hard to describe. I
don’t know because I have close relationships. (They are) different. I can relate to
both. But I can relate more with my friend who two sons of the same age and
difi‘iculties so I can relate more to her. I think probably there is just a stronger
bond because you go through with things that other people don t have children

that have those difficulties that would help them understand. ”

Institutional support

The educational institution was a source of social and service support for the

mother and the child. One mother reported that,

“The stafl that I have worked with the school, is wonderful, like, take for
instance like last year when they were evaluating him because they thought they
were going to re-certify him last year they change their mind, she was saying
when he was five that if he would qualify in anything, they would make sure that
he would stay. Very proactive. Because they see something there but they just
don ’t know what it is . . . even if he doesn’t qualify in any (of) them they (are) still

H

gonna give him this that he will be able to get the services.

One institution called J udevine Center for Autism was considered to be a lifesaver
for one of the participants when she learned of her son’s diagnosis. When asked about

supports for autism from infancy to adulthood, she enthusiastically shared,

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“Pretty much! They have tons of programs and this actually, this center as
referred to us by the gentleman that my husband work with because they had done
it and they said that was kind of our first introduction to ABA (behavioral support
program) because they kind of did it, it like a trial. Its where they introduced that
and after that, we already had our people in place ready to go because by the
time we did the summary meeting at the end of it all, I had my ABA consultant, I
had my OT( occupational therapist), I had my PT(physical therapist)), everybody

was there ( to help us). ”

ASD parent support groups

One participant, who was a certified elementary school teacher, expressed her
enthusiasm about being a part of a network of parents with children with special needs.

She said that,

“I was one of the parents that could share . . . (other parents) they’ve seen
through with this and most of them have children who are older so I could learn a
lot. And from them, they could share their experiences during those meetings
about things that they have done with the school, things that they have done with
the other parents, and getting their kids together, and just the resources are
shared places you can go, difierent tools they have used that have been helpful. I

think it has been an immense help.”

In another situation, a participant got connected to a mothers’ network, met a
friend of her husband who was going through a similar experience with their child and

the friend then shared his networks with them. She said,

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“(I got notice) through the state, I would say, just through the initial
program. Those people that I was directing with, they were the ones who say,
“Okay I know this person. “ And then Molly and then the other mom were okay.
She had lived in Missouri her whole life, and had learned to get to know other
people. (She said), “You need to talk to this person, find out who this person,
what he is doing, I ’ve heard that this gal is the one that is doing ABA and she’s
the consultant to have that’s kind a help. It was all network and parents. (My
husband’s friend), he ’s the one who recommended Judevine and so all or a lot of
our support and information came from other parents. We didn’t get anything

from the doctors; it was all from the parents. ”

The results showed similar experiences of emotional, physical and social
challenges of mothers during early detection and period of diagnosis. The microsystems
parents, spouses, friends, social affiliations/networks, and medical and school service
providers provided reciprocal supports with the microsystems of mothers and children in
the mesosytem. The ecological systems theory provided an excellent theoretical

framework in discussing the mothers’ social support systems.

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CHAPTER 5

SUMMARY, DISCUSSION, CONCLUSION AND RECOMMENDATIONS

As stated by Bendell, Stone, Field and Golstein (1989) and Weisberger (1991),
the quality of life of family members who take care of children with developmental
disabilities is affected. In this study, the mothers are and continue to be, the primary
caregivers of the children with autism spectrum disorder (ASD). This chapter covers the
following topics: 1) Summary of Findings; 2)Discussion of the Ecological Systems
Theory and Mother’s Support Systems; 3) Recommendations for Practice and Future
Research.

Summary of Findings

The sample participants are characterized as follows: The majority of the
participants are over 36 years of age and married. They are all Christians. The mothers all
have post-high school degrees with the exception of one participant. In fact, there are two
mothers with advanced degrees. Eight out of 13 are unemployed. Nevertheless, the
majority have yearly household incomes 6f over $75,000.00.

The majority of the mothers have two parent- households. In one case of a single
mother, a grandmother serves as the other parent. All in all, there is a perception of
stability in the households. Majority of the children with ASD have siblings with the
exception of two families. There is a balanced geographic representation of the group
with rural, suburban and city dwellers.

The children diagnosed with autism spectrum disorder in the study are mostly

boys (11 out of 13) and have diverse age ranges from 4 years to 11 years old. Majority of

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the children with ASD have sibling with the exception of two families. The majority of
the children were diagnosed with Classic Autism.

According to interviews and complementing eco—map, and field notes reporting,
strong sources of support come from parents, spouses, friends, other parents, other
children, service providers and person from social affiliations and networks with varying
degrees of perceived strength of support and stress. The linkages of relationships and
experiences lie in the microsystems of the persons in contact with the mothers in our
study. The linking of these microsystems forms the mesosystem. The mothers’
microsystems linked in the mesosystem are characterized by the different sources of
support in varying perceived intensities of strength and stress. Sources of support
originate from the microsystems of parents, spouses, friends, other parents and children,
people from social affiliations, networks and institutional providers (medical practitioners
and school professionals). The majority of participants reported that strong social
supports primarily come from their parents, spouses, and friends. Fifty per cent of the 12
respondents reported very strong support from their spouses with the other 50% reporting
varying strengths of stressful support. Participants perceived their parents as giving very
strong support at 38.89% with an additional 33.33% as strong and stressful supports. The
group collectively qualified their friends as strong sources of very strong support at
59.26%.

Discussion of the Ecological Systems Theory and Mothers’ Support Systems

According to Bronbenbrenner’s (1989) ecological systems theory of human
development, “contexts are described from the perspective of the developing person.” In
this case, the mothers’ microsystems are described according to their perceptions and

experiences of primarily being a mother with child with ASD. The use of

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phenomenological method was the best way to describe the mothers’ supports and
interrelationships in the systems. Their experiences uncover the complexity of
relationships and activities in their settings of being a mother with a child with ASD. The
mothers’ microsystems consist of the “pattern of activities, roles, and interpersonal
relations experienced by the developing person in a given face to face setting with
particular physical and material "features containing other persons with distinctive
characteristics of temperament, personality and systems of personal belief
(Bronfenbrenner, 1989).” The mothers experience their roles as parents with children
with autism spectrum disorder in the microsystem. They establish interpersonal
relationships with other microsystems (parents, spouses, friends and others) as they
exchange information and engage in activities. The mothers’ microsystems link with
other microsystems forming the mesosystem characterized by linkages of relationships,
activities and experiences. The mesosystem is characterized by the interpersonal
relationships between mothers and children, mothers and their parents, mothers and
spouse, mothers and their friends, service providers and others (See Figurel).

According to Bronfenbrenner (1979), the mesosystem is “a system of
microsystem formed by interconnections inclusive of links in formal and informal
communications and knowledge and attitudes in the phenomenological domain.” The
mothers’ interconnections with the microsystems of parents, spouses, friends and others
provide strong sources of support as they navigate their journeys of parenting children
with autism spectrum disorder.

Inge Bretherton (1993) indicated that the originality of Bronfrenbrenner’s work
lies in “its emphasis on studying interrelationships among subsystems during periods of

transition and attending to the communicative processes between two settings with its

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supportive links of shared goals, mutual trust, positive orientation and consensus.” The
mothers who participated in this study were primarily linked to the parents’
microsystems, spousal microsystems and friends’ microsystems. Additionally, the
mothers’ microsystems were also linked to the service providers’ microsystems, persons
from social affiliations and networks, other parents’ microsystems and other children’s
microsystems. Their perceptions of the “communicative processes” between these
microsystems provide linkages and sources of support and are best explained by
Bronfenbrenner’s ecological systems theory. This study revealed that the maternal
microsystems’ links with these other microsystems made up the mesosystem which
continues to be a strong source of support for the mothers. This mesosystem provide the
mothers with strong, emotional support and an inordinate source of resources, referral
and information in order to, in turn, support their children’s microsystems. The mothers’
relationships and links which serve as strong sources of support occur in the mesosystem.

The mothers’ responsibilities cover the spectrum of daily care and establishing
routines for their children with ASD inclusive of the scheduling medical and hospital
appointments and working with medical professionals and specialists to obtain care for
the diagnosis. The mothers also attend school conferences, plan and implement daily
activities for the children, and research information, resource and referrals to assist the
children in obtaining appropriate care. They attend workshops and conferences about the
disability, network with parents, church or institutional groups coordinate playgroups and
socialization opportunities for the children and link with family members and friends in
creating a web of support for the children. Concurrently, the mothers still attend to

household chores and continue to be the primary caregivers to all their children.

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Spouses, partners, parents, friends and significant others provide secondary
support in the daily care of the children such as providing respite for the mothers,
providing comfort through active listening and assurance of their presence when
necessary. They are also available as emergency contacts for the mothers and their
children. They bring the children to medical and hospital appointments, attend school
conferences, assist with household chores, and care for the other children in cases where
the mother had to attend to the child with ASD. The spouses, parents, friends and
significant others assist the mothers in researching and obtaining additional information,
resource and referrals. They link the mothers to networks and affiliations that would help
the mothers obtain appropriate care and support for their children and themselves.

The mothers learn to advocate for their children and develop relationships outside
of the family in order to create opportunities and socialization activities for their children
with ASD. The primary role of the mother is a key factor in the advocacy of services and
appropriate care for the child. There were mothers in the study who, in their perspective,
successfully advocated for their children by developing the courage to ask questions,
providing alternative solutions to medical and school professionals, and finding new
information to challenges by referencing the web. There were mothers who embarked on
finding experts in the field of autism, reading books, articles, and journals about autism,
attending conferences/workshops, and locating networks of parents and professionals
who have gone through similar experiences and challenges with their children.

Wolfe (1992), in his research, was accurate in stating that mothers had taken on the
roles of “educator, decision maker, advocate, teacher, case manager, and program

evaluator.” In their quest to find appropriate care for their children with ASD, these

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mothers have courageously assumed these roles despite their feelings, at times, of denial,
grief, loneliness, and sadness.

The mothers in this study continue to move forward to explore, learn, and
maintain tenacious support to improve services for their children with ASD. Most of the
mothers in the study believed that they can improve their children’s lives by servicing
their needs as early as possible in their growing years. For those whose realization and
acceptance of their children’s disability came later, they continue to help their children
by networking and linking with like-minded parents in order to get the services that their
children need as soon as realistically possible. The mothers whose children are younger
definitely take the role of advocacy in order to get critical services for them. This
responsibility grows as the child gets older. This is supported by Weisberger (1991) and
Traustadottir (1991) in their study that the parent “acts as an advocate by looking for
unusual, developmental delays in early infancy” and the “role of mothers continue to
grow in importance as the child matures.”

The mothers’ perspectives on their support systems are critical in their survival as
caregivers for their children with autism spectrum disorder (ASD). From the time of pre-
diagnosis and their challenging journeys towards acceptance of the diagnosis, the
mothers’ microsystems links to the other microsystems (spouse, parents, friends,
siblings and affiliations) continue to play critical roles in the mothers’ journeys of
parenting. There are complexities to the interplay of relationships which can prove
beneficial or detrimental to the mothers. The support is beneficial in the form of
emotional, instrumental, information and appraisal supports (House, 1981). The support
can be detrimental when help is extended to the children but is not in compliance to how

the children with ASD need to be serviced based on best practice or specialists’ advice.

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The results show high support for mothers linked with their parents, spouses,
friends, social affiliations, and networks. House’s (1981) study on the four types of social
support confirms the quality of support the mothers receive from their parents, spouses
and friends, especially on the emotional and informational categories of support.
Institutional support from medical practitioners and school professionals come in the
form of instrumental and information support. Additionally, all the mothers know how to
access information and knowledge online and consistently uses the web as a practical
resource for inquiries.

Recommendations for Practice and Future Research

Claire Tregaskis (2006) ongoing research on “fundamental inequalities, structural
and attitudinal barriers that prevents access to health and social care by families” is a
critical starting point of discussion for these mothers of children with ASD. By
discussing the barriers to access for appropriate services, there is a plethora of
opportunity to offer solutions to these challenges and problems. The study disclosed
critical areas that need to be addressed in order to improve services for families of
children with ASD.

Implications for Practice

Recommendations regarding financial, insurance, or medical supports for

children’s health condition

Based on the findings in the study, the mothers reported the lack of financial,
insurance or medical supports for the child’s health condition. The majority of the
families take care of the children’s special dietary needs, intervention programs,
supportive activities, and medical expenses out of their own pockets. Three participants

reported the lack of medical supports for specialized care for their children with ASD.

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One participant reported spending thousands of dollars in order to get appropriate care for
her son’s diagnosis. She believed in the detoxification program supported by the
organization, Defeat Autism Now or DAN and really wished for intervention care and
financial assistance for children with ASD. A majority of the participants reported the
difficulty of accessing insurance coverage for neurological and behavioral assessments
for young children with suspected developmental delays.

There is a need to explore preventive and wraparound care for children with ASD.
Developmental assessments and clinical tools for evaluation are not as prevalent as with
other childhood diseases or ailments. Parents may wish to initiate and conduct
discussions with their government officials/ legislators and insurance providers to explore
the ongoing problems and challenges of insurance coverage for assessments, intervention
programs and medical care for children with autism spectrum disorders and other
developmental disabilities.

There is a need and opportunity to train medical practitioners, especially,
pediatricians, in offering assessments for children with ASD and linking them to
neurologists, psychologists, and/or nurse practitioners who are specialists in the area of
autism spectrum disorder.

Recommendations to address lack of support services for second language speakers

One participant, who is a second language speaker, really struggled with
understanding medical professionals. She had a challenging pregnancy and her child had

suffered complications after birth. She shared her story, thus:

“In (name of hospital), and I say, “Ok. I wait for (name of child). ” I

arrived in the hospital 3o’clock in the morning and (name of child) 11:45 am and

74

I say ok and the doctor take care of the baby, cleaned, all of the baby. I look the
baby and I say, “Oh, oh, you are here! ” And I give a kiss. (The) doctor says, “I
need to take the baby because she needs shots, ” and I said, “Ok. ” (Doctor said),
“I (will) be back, maybe in three minutes. ”And I say, “Ok.” And after three
minutes, nobody came with the baby. Nobody tell me nothing. I say, “What
happened because he had the baby?” In my mind, I don’t know, she having a
mark or something. I say, “Maybe somebody is stealing the baby go and see. ”
(My aunt says), “Ok. ” My aunt is with me, translation me with the doctor. He
said, “Okay, ” and she goes. In the past two hours, nobody coming, I am alone in

,

the room.’

Two other bilingual mothers had varying challenges understanding and resolving
the service providers’ explanation of the diagnoses of their children, rationale, and
procedure of care for their children with ASD. There is a need for parents and
medical/school service providers to come together and collaboratively work towards

finding solutions towards improved working relationships for the benefit of the children.

The Individual with Disabilities Education Act (IDEA) has federally mandated
parental involvement in servicing families with children with disabilities or special needs.
In order to effectively engage and involve the parents in educating their children, there is
a need to develop, distribute and maintain supportive and assistive services, devices,
information and collateral materials that serve multiple and diverse populations of
families. Emerging from this study is the need for translated service documents and
translators for mothers with children with special needs. The translators need to be adept

with the nuances of the disability, medical and legal terminologies and familiar with

75

documents and service delivery procedures. The translators’ expertise is significant in
order to clarify, review and confirm diagnoses, instructions and services for the families
with children with ASD.

Servicing procedures need to have mandatory evaluations or outtake processes to
make sure parents and families understand the diagnosis, rationale for the diagnosis,
medical and health condition, process and service delivery for the children.

Mothers, especially women of color and/or second language speakers, need to
network and work together to articulate their needs, disclose challenges and difficulties in
effective service delivery. They need to contribute, gather, and share information and
resources with each other. Mothers should communicate their children’s needs to their
families and networks. It is very important that they establish a working relationship with
service providers in order to access appropriate and timely care for their children with
ASD.

Recommendations to address compassion and understanding from service

delivery providers

Service providers need to understand that the time of detection and period of early
diagnosis are especially sensitive and emotionally difficult time for parents of children
with ASD. It is a “first time experience to have a child with ASD” for ten out of the
thirteen mothers. The weight of responsibility and emotional challenges for the other
three mothers with other children with developmental disabilities are not any lighter or
less.

Some of the mothers reported lack of compassion from service delivery providers.

In one case, a mother reported,

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“I don ’t feel better because these papers, the people who are here know nothing
about my feelings, they tell you all about (name of child) mental number, she ’s a number,

it ’s a number, sometimes their diagnostic, I don’t understand. “

This participant shared that she would bring her relative to translate for her in the
medical clinic, hospital, or the school but they ended up waiting a long time anyway to
obtain services for her child. She expressed frustration over matters that were not clearly
explained to her by service professionals. There was even a situation that she asked for
her child’s hospital records and the medical professional did not give it to her until the

mother threatened to talk to her lawyer about the matter.

One of the participants was a young, bright mother and she felt that the medical
doctors were ignoring her concerns for her child just because of her youth. She was a
student in the medical field and was very observant of her eldest, young, son’s
development. Her son stopped talking when he was about 12 months and preferred

playing in isolation and away from other children.

“My pediatrician told me that he’s fine. He’s just probably not talking
(because, according to her) “You had your kids so close together,” - which
insinuates because I was young mother who have 3 children . . . maybe this is
why (he is) not talking. And so when she told me that, I left (her) Dr. (name of
doctor). I left. So, you think there’s anything wrong ( with ) the fact that he doesn ’t
speak? I know he can hear me coz’ when I call him, he looks, but he’s not
speaking. Mind you it didn’t matter (that I) was (an) educated mother who knew a
little about psychology. No, it didn ’t matter. I was a young mother (who) doesn 't

know what I was doing so I left her and went to another pediatrician. And, oh

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goodness, I can’t remember these pediatricians’ name. I literally went (through) 3

or 4 (pediatricians). ”

In one situation, a medical professional disclosed the diagnosis to the mother

without prior explanations or preparations. The participant was caught unaware by the

diagnosis. She shared,

“She (the doctor) was like, “You know, yes, I do believe your son has a lot
if sensory issues but it ’s more sensory than autism but there may be still a chance

that there is an autism there... ’ and of course, so I was just like, “Oh, my gosh,
my husband was right, there was something wrong with my son. ”And she ’s like,
“You know, nobody has told you. ”And I completely broke down in the office. She
said, “Oh, my gosh, I thought someone had said something to you and you (were)

just going to get confirmation. ” And (I said), “You’re the first one to ofi‘icially say

that my son (has autism).

She didn’t know but that was kind at the end of the appointment and she
said, “Don ’t worry. We’ll take care of you. ” But that was that. And so, then it was
through the neurologist that they asked lots of questions, (did) observations, and
he was like, “Yeah, (he has autism), but he (neurologist) wasn’t very nice about
it. ”

Service providers need to recognize that there are gender differences in

responding and providing programs for parents with children with ASD. Although both

parties go through the stages of grief and emotional cycles, service providers need to be

trained in how parents cope with challenging situations. The service providers need to

78

assist mothers and fathers/significant others to be positive and proactive in providing care
for their children with ASD.

The educational plans of children with ASD should clearly detail the category for
parental engagement and with this document, address family concerns such as translation
services, therapy, and information about supportive and assistive networks and agencies.
Mothers and families need information about networks and agencies that could support
and assist them, in case their immediate families, especially spouses, partners, or parents,
are not available or prepared to help them.

Intake and outtake program of services for families of children with ASD need to
include training on compassion and understanding of the experiences that primary and
secondary caregivers of children with ASD go through in parenting and assisting the
children. By guiding parents with understanding, kindness and compassion, service
providers would be able to transition parents into accepting this unexpected and new
situation. This is especially crucial for first time parents who may have differing
expectations of their first child.

Mothers, through their networks, can share names of doctors who are giving
compassionate, positive, professional help to other parents with children with special
needs. Participants have expressed that other parents’ referrals have been very valuable as
they access information and services for their children. Mothers who joined a network of
other parents felt empowered about advocating and supporting their children with ASD.

Recommendations regarding effective communication and relationships

between families and service providers

One mother expressed her satisfaction with her children’s pediatrician. Her family

has been with this pediatrician for 12 years and she is very pleased with her. She shares,

79

“My eldest child has cerebral palsy, my third has attention deficit disorder
and my fourth one has autism spectrum disorder. Dr. (name of doctor) has always
been very good to us. She makes sure that the children are well taken care of. She
refers us to other specialists so we could obtain the proper assessments for our
children. She always follows up on the health conditions of the kids and keeps us
informed.”

On the other hand, one participant expressed her difficulty and frustration with
medical professionals and her struggle of being referred from one medical professional to

another without being given a thorough explanation of the diagnosis.

“She said, “Dr. (name of doctor), you bring the report (name of child) is
autistic and you never tell me, why never tell me? He say, “Oh yes, I tell you
(name of child) is autistic but were using different names with autistic.” And I
say, “I am confused now. I wanna know tell me what happen. ” (Doctor says)
“Oh, yes she is autistic. ” And, she explain( ed) to me what is autistic. I say, “I feel

very bad because I say autistic is a new word for me and I don’t know. ”

“Nobody tell me and I go to the library and the computer and I check
autistic and I say (name of child) have the symptoms but I say I ’m not a doctor. I
see the report, I see the truth. Now I tell you that (name of child) is autistic, that ’s
the truth. He (the doctor) tell (told) me, “Don ’t believe me. ” He tell (told) me,
“You go to Children’s hospital and get a second opinion.” (Second doctor) tell
me, “Yes, (name of child) is autistic because (other doctor) tell me but I can tell

you the truth if you go to the psychiatric and have assessment for the truth. . . but

80

my inference is not for this time, it is for autistic. ” Now I have this special child

that needs health care.”

For most of the mothers, there were initial challenges with communicating with
their medical practitioners. The majority of the mothers have multiple medical
practitioners for their children due to varying insurance coverage, dissatisfaction in care

and lack of perceived appropriate service for their children.

Service providers need to provide parents with available, clear, concise, and
detailed information about the assessment tools, diagnosis, rationale for the diagnosis,
and medical/ health conditions of children with ASD. There is a great opportunity for
service providers to inform parents about institutional support services that are available
to families. Information, resources, and referrals about content, duration and costs of
medical care or intervention programs after diagnosis would be helpful to parents figure
out their next steps to helping their children. This way, parents can make the appropriate
decision for their children’s welfare.

Parents are advised to clarify and ask questions if there is anything in the
conversation or delivery of services that they could not understand. Service providers can
be more resilient and flexible in taking the time to explain rationale, methods and
procedures of care for the families.

Recommendations regarding access to services and medical, educational,

institutional support

There were research participants who were concerned about the lack of access to
services and medical, educational and institutional srtpport to families of children with

autism. The factors ranged from the school’s uncertainty about diagnosis, lack of process

81

or navigation system for families so they could access appropriate assistance, and lack of
resource, and referral information so the children can be helped promptly with

appropriate intervention. One participant expressed her concerns about the school’s

uncertainty over the child’s diagnosis which is affecting his services. She said,

“I guess it would just be the uncertain diagnosis. The school doesn ’t want
to recognize that diagnosis. They’re not going to provide some service for
children that would be on that spectrum . . . he could benefit from that a little

bit. ”

Participants are concerned about the appropriate services for their children. One
mother had asked the school to follow up on updating her child’s educational program

but the school was not responsive. The mother shared,

“I think (name of child ’s father) thinks that the (school) need our son in
ASD class because they’re sure that if he was in there, they can have the class. If I
take my son out to move out of that class, they won ’t have an ASD class. They
won ’t have a special education class. No, I think, I don’t get as much support

from teachers and no, I am not satisfied. ”

Families need to informed and aware of their rights and privileges as parents of
children with ASD. Service providers could provide a list of agencies, non- profit
institutions, schools, hospitals, medical clinics or specialists’ offices that provide care for
children with ASD. By law, schools provide parents with legal documents explaining

their rights to services for their children. Individual education plans could include line

82

items for parental (intended for parents and legal guardians) intake and outtake
procedures for care of the children and the families to address parental engagement.

Key Recommendation to improve practice

A strong family based support approach needs to be applied in servicing the needs
of families and children with autism spectrum disorders, with consideration and attention

to the ecological support systems that are linked to the mothers and children.

Recommendations for Future Research

This study will contribute to family research of children with ASD. Future
research should cover involvement of a more diverse pool of human subjects (more
Asian- Americans, Arab-Americans, African- Americans, Native-Americans, and
Hispanic/Latino). A larger sample of participants would increase the generalizability of
the study. Research could also be conducted with fathers as the focus of the research
using the same set of questions for qualitative and, comparative analysis. Study on gender
differences and resiliency could be integrated into future research for families with
children with ASD. Research could also use variables of socio-economic status and
location of domicile for human subjects and its effects on experience and perspectives of
parents and receipt of services for the children. It would be interesting to conduct a
comparative and in-depth study of service provider sites that would utilize and apply the
recommendations stated in this study as intervention procedures for servicing families
and compare it with sites that do not use these recommended procedures. These studies
could contribute towards improving practice and service delivery to families with

children with ASD.

83

These recommendations were formulated based on mothers’ perceptions and
experiences of parenting children with ASD. Recommendations from the mothers and
professionals could be integrated into a balanced service delivery program for the
children.

This is one of the parental research studies that address the mothers’ perspectives
regarding parenting children with autism spectrum disorder with the goal of providing
insights and information about experiences, supports and perspectives. The research
study has solid objectives of providing suggestions and recommendations for service
providers as they assist mothers, parents, grandparents, families and children. A key
recommendation is the formulation, utilization, and implementation of strong family-
centered support programs in addressing the needs of primary and secondary caregivers
of children with ASD. Parents, especially mothers, need to be empowered and have
proximal positions of input, perspective, authority, engagement and involvement in the
access and delivery of services to their children and families. Medical, school, and
institutional systems need to promote authentic intake and outtake procedures for
families, compassionate interaction and clear instruction of procedures, and diverse and
culturally-sensitive tools and programs in order to promote nurturing relationships with

parents with children with autism spectrum disorder.

84

APPENDICES

85

APPENDIX A

Introductory Letter

Agency/School Recruitment of Participants to the Study

86

APPENDIX A

Introductory Letter
Agency/School Recruitment of Participants to the Study

The ecology of expgriences and supmrts of mothers with children with autism smtrum
disorder during the children’s early years

Dear Administrator/Head of School:

My name is Victoria Martinez and I am a doctoral student at Michigan State University,
College of Social Sciences & Department of Family and Child Ecology. I would like to request
your assistance in the recruitment of mothers to participate in a study exploring the experiences
and supports regarding being a parent with a child with autism, especially during the child’s early
years. I would like to disclose that I am a parent with a child with autism. Participation in this
study is voluntary and the participants can withdraw anytime without penalty.

If the mothers agree to participate, they will be asked to fill out a demographic
questionnaire, complete an eco-map, and be asked to participate in interviews consisting of a
series of open-ended questions regarding her experiences and support systems being a mother of
child with autism. They will be asked to participate in interview sessions which will last 1.5 to 2
hours with an option for a follow up interview lasting no more than 1 hour if necessary for clarity
of responses. The participants will be asked by the interviewer whether they will allow the
interview to be audio-taped or digitally voice recorded. They have the right to stop the recording
at any time during the interview. This study is for academic purposes only. All interviews are
strictly confidential and are conducted under the strict policies of the Institutional Review Board
Human Protection Program of Michigan State University.

Aside from filling out the demographic questionnaire and participating in qualitative
interviews, there will not be any additional requirements. If you have any questions regarding this
research project, you may call me at (248) 390-1861 or email me at marti464@msu.edu. If you
have any questions or concerns regarding the rights of the study participants or are dissatisfied at
any time with any aspect of this study, you may contact, anonymously or otherwise, my
Dissertation Chair, Dr. Julia Miller, Ph.D., of the College of Social Sciences -Family and Child
Ecology, by phone (517) 432-3818, by email at jrmiller@msu.edu or by regular mail 10 Human
Ecology, East Lansing, MI 48824 and/or Dr. Daniel Ilgen, Ph.D., Chair of the Social Science,
Behavioral, Education Institutional Review Board by phone (517) 355-2180; fax (517) 432-
4503; email at irb@msu.edu or by regular mail at 202 Olds Hall, East Lansing, MI.

Your help in this matter is greatly appreciated.

 

Thank you.

Victoria Martinez-Doctoral Student Mailing Address:

Michigan State University 7235 North Village Drive

College of Social Sciences Clarkston, Michigan 48346
Department of Family & Child Ecology (248) 390-1861 marti464 @ msu.edu

87

APPENDIX B

Introductory Letter

Parent Consent for Participation in Study

88

APPENDIX B

Introductory Letter
Parent Consent for Participation in Study

The ecoloa of experiences and supports of mothers with young children with
autism spectrum disorder

Dear Parent:

My name is Victoria Martinez and I am a doctoral student at Michigan State
University, College of Social Sciences & Department of Family and Child Ecology. I would
like to invite you to participate in a study exploring your experiences and supports regarding
being a parent with a child with autism spectrum disorder, especially during your child’s
early years. I would like to disclose that I am a parent with a child with autism spectrum
disorder. Participation in this study is voluntary and you can withdraw anytime without
penalty.

If you agree to participate, you will be asked to fill out a demographic questionnaire,
complete an eco-map, and be asked to participate in interviews consisting of a series of open-
ended questions regarding your experiences and support systems being a mother of child with
developmental disabilities. You will be asked to participate in an interview session that will
last 1.5 to 2 hours with an option for a follow up interview lasting no more than 1 hour if
necessary for clarity of responses. You will be asked by the interviewer whether you will allow
the interview to be audio-taped or digitally voice recorded. You may stop the recording at
any time during the interview. This study is for academic purposes only. All interviews are
strictly confidential and are conducted under the strict policies of the Institutional Review
Board Human Protection Program of Michigan State University.

Aside from filling out the demographic questionnaire and participating in qualitative
interviews, there will not be any additional requirements. If you have any questions regarding
this research project, you may call me at (248) 390-1861 or email me at marti464@msu.edu.
If you have any questions or concerns regarding your rights as a study participant or are
dissatisfied at any time with any aspect of this study, you may contact, anonymously or
otherwise, my Dissertation Chair, Dr. Julia Miller, Ph.D., of the College of Social Sciences —
Family and Child Ecology, by phone (517) 432-3818, by email at jrmiller@msu.edu or by
regular mail 10 Human Ecology, East Lansing, MI 48824 and/or Dr. Daniel Ilgen, Ph.D.,
Chair of the Social Science, Behavioral, Education Institutional Review Board by phone
(517) 355-2180; fax (517) 432-4503; email at irb@msu.edu or by regular mail at 202 Olds
Hall, East Lansing, MI 48824.

Thank you.
Victoria Martinez-Doctoral Student Mailing Address:
Michigan State University 7235 North Village Drive
College of Social Sciences Clarkston, Michigan 48346
Department of Family & Child Ecology (248) 390—1861

marti464@msu.cdu

 

89

APPENDIX C

Informed Consent Form

Parent Consent for Participation in Research Study

90

APPENDIX C
Informed Consent Form

Parent Consent for Participation in Research Study

The ecology of exmriences and supmrts of mothers with children with autism spectrum
disorder during the children’s early years

Investigators: Julia Miller, Ph.D.
College of Social Sciences
Department of Family and Child Ecology
(517) 432-3818

Victoria R. Martinez, M.A.

College of Social Sciences

Department of Family and Child Ecology
(248) 390-1861

Purpose

We would like to invite you to participate in a research study exploring your experiences
and supports regarding being a mother with a child with autism spectrum disorder during the
child’s early years. The secondary investigator is a parent with a child with autism. Participation
in this study is voluntary and you can withdraw at anytime without penalty. This study is being
undertaken as part of a doctoral dissertation research project. Your participation in this study will
consist of an interview of 1.5- 2 hours with an option for a follow up interview lasting no more
than 1 hour if necessary for clarification of your interview responses. You have been selected as a
possible participant in this study because of the following: a) you are a mother over the age of 18
years old with a child with autism spectrum disorder (ASD) as diagnosed by a medical
professional, school official, or special education specialist; b) your child’s age range is within 2-
11 years of age. If you are under 18 years of age, you cannot be in this study without parental
permission.

The population trends indicate a marked increase in the prevalence of autism spectrum
disorder in our country and state. These trends are significant enough that we need to provide
research that will study the families who are directly involved with caring for children with
autism spectrum disorders (ASD). There is a need to study the role of families, especially
mothers, in assisting their children with autism spectrum disorder, and to identify the social
support systems that will assist the families in accessing early intervention services and family
supports. This research study highlights the primary and significant role of mothers in caring for
children with ASD.

Procedure

If you agree to participate, you will be asked to fill out a demographic questionnaire,
complete an eco-map, and be asked to participate in interviews consisting of a series of open-
ended questions regarding your experiences and support systems being a mother of child with
autism spectrum disorder. The interview session will last 1.5 to 2 hours with an option for a
follow up interview lasting no more than 1 hour if necessary for clarity of responses. hug
participation is completelv voluntgy. The interviewer will ask whether you will allow the
interview to be audio-taped or digitally voice recorded. You may refuse to answer questions,
request that the recording be stopped at any time during the interview, or withdraw your

91

participation at any time. This study is for academic purposes only. You may request the results
of the research from the investigators upon completion of the study.

All interviews are strictly confidential and are conducted under the strict policies of the
Institutional Review Board Human Protection Program of Michigan State University. Aside from
filling out the demographic questionnaire, completing an eco-map and participating in qualitative
interviews, there will not be any additional requirements.

Benefits and Risks

There are no implied benefits in your participation to the study. However, the study will
generate valuable knowledge to mothers and families who have children with autism spectrum
disorder (ASD) in exploring beneficial social support systems as they access services for their
children. This study will contribute towards the understanding of more effective support systems
for families with children with ASD. The results of this study will only be used for academic
purposes and the researcher can provide you with the findings of the research upon your written
request.

There are minimal risks associated with this research study associated with feeling a
sense of discomfort about answering questions relating to your experiences and perspectives.
However, if you become tired or feel uncomfortable revealing personal information to the
researcher, you may take a break at any time or refuse to answer any question. Always remember
that your participation is completely voluntary and you may withdraw from participating at any
time.

Privacy and Confidentiality

Your privacy will be protected to the maximum extent permitted by law. All completed
forms, interviews, and conversations are strictly confidential and are conducted under the strict
policies of the Institutional Review Board Human Protection Program of Michigan State
University. If you consent to this research study, your interview will be audio-taped or digitally
recorded to assure correct transcription of participant information. However, you may stop the
recording at any time. All participant data will be identified by a code number and a list of code
number linked to the participant name will be kept in a locked file in the primary investigator
faculty’s office along with the audio-tapes and transcriptions for three years. Only the researcher,
dissertation committee members and the Institutional Review Board have access to the data. After
the period of three years, all data connected to this research study will be destroyed.

Your Rights to Participate or Not Participate

Your participation in this research study is complete voluntary. You maintain the
right to withdraw at anytime. For your protection, you will also be told of any significant findings
that may develop during the research process that may affect your willingness to continue. There
will be no money or material compensation for your participation. If you have consented to the
study and later on decide to discontinue, you may tell the investigators/researchers, withdraw
your consent and immediately stop your participation in the study. There will be no penalty for
your withdrawal or refusal to participate at any time.

Conflict of Interest and Disclosure

The Principal investigator and the Dissertation committee members have no significant
financial interests connected to this study.

The secondary researcher is a parent with a child with autism. As the secondary
researcher, the role will be taken to acquire knowledge for research purposes and not contribute
personal perspectives to the study. You may withdraw from the study without penalty if this
poses a possible conflict or problem with your participation in the study.

92

Contact Persons for the Research Study
If you have any questions regarding this research project or the nature of your
participation, please contact:

Julia Miller, Ph.D. OR Victoria Martinez, M.A.

College of Social Sciences College of Social Sciences
Department of Family & Child Ecology Dept. of Family & Child Ecology
10 Human Ecology (248) 390-1861

East Lansing, MI 48824 marti464@msu.edu

(517) 353-9467
jrmiller@msu.edu

If you have questions or concerns about your role and rights as a research participant,
would like to obtain information or offer input, or would like to register a complaint about this
study, you may contact, anonymously if you wish, the Michigan State University’s Human
Research Protection Program at 517-355-2180, Fax at 517-432-4503, or email irb@msu.edu or
regular mail at 202 Olds Hall, MSU, East Lansing, MI 48824.

FOR THE PARTICIPANT:

My signature below indicates my permission and voluntary agreement to participate in this
research study.

 

Print Name of the Participant / Subject

 

Signature of the Participant / Subject
I agree for this interview to be audio-taped.

Yes No

 

Signature of the Participant! Subject

 

Date

 

Signature of the Person Obtaining Consent

 

Date

93

APPENDIX D

Demographic Data

94

APPENDIX D

 

 

 

 

 

Demographic Data
Date of Interview: Code—
Site Location:
PARTICIPANT INFORMATION
Ag; Race/Ethnicity Highest Level of Education
_ Less than 18 _ White/Caucasian _ High School
_ l8 — 25 _ African-American __ Associate Degree
__ 26 — 35 _ Asian-American _Bachelors Degree
_ 36- 45 _ Native American _ Masters Degree
_ 46- 55 _ Hispanic—American/Latino _ Doctoral Degree
__ Over 55 _ Other __ Other
3211ng (not mandatory) Marital Status Employment Status
_ Protestant _ Single _ Employed
_Catholic __ Married If employed, nature of
__ Jewish __ Divorced/Separated work
__ Islamic _ not employed
_ Hindu _ _ In between jobs
_ Other ____ __ Spouse’ Occupation
_ None __ Spouse Not Employed

95

Household Income Family Composition At Home
_ $200,000.00 and up __ Spouse

__ $150,000.00 - $199,999.00 _ Partner

__ $100,000.00 — 149,999.00 __ Mother/Father of Participant
__ $75,000.00 - $99,999.00 __ Grandmother/Grandfather
__ $35,000.00 - $74,999.00 __ Other Relatives

$34,999.00 and lower Friend

CHILD INFORMATION
Code

Age of Child at time of interview __
Sex of Child __ Male __ Female
Does the child have siblings? _ Yes _ No
Indicate number, ages and sex.
When was the child diagnosed? Indicate Month/Year
Who or what institution did the diagnosis?
What instrument or tools were used for the diagnosis?
What is the diagnosis of the child?
_ Classic Autism
_ Asperger Syndrome
__ Pervasive Developmental Disability Not Otherwise Specified
__ Rett Syndrome
_ Child Disintegrative Disorder

Is the child currently receiving help for the diagnosis? _ Yes _ No

96

Indicate and please specify:

_ Public School

_ Private School

_ Early On

_ Private Professional

_ Public Agency/Non Profit

Is the child currently enrolled in an educational/service program?
Indicate and please specify:

__ Public School

_ Private School

_ Head Start Program

_ Agency Program

__ Other

Would you like to share any other information that would be pertinent to this research

study?

Thank you for completing this questionnaire.

All information will remain confidential.

97

APPENDIX E

Interview Questions

98

APPENDIX E

Interview Questions

 

 

 

Code __

RESEARCH QUESTIONS INTERVIEW UESTIONS
1. What are the mothers’ 1. Describe your experience with your child
experiences and perspectives and your first memories of your child’s
during the period of early development.
detection and period of PROBE:
diagnosis of the child’s autism Cite a situation wherein you were interacting
spectrum disorder? with your child and how he/she behaved with

you.

2. Describe your perspectives when your
child plays/interacts with your
spouse/partner, siblings, family members
or especially, with other children. How
did you feel about these interactions?

PROBE:

When did you suspect that something was

“different” with your child? How old was the

child at that time?

3. Who did you approach with this

suspicion? How did they react?

 

 

99

 

 

 

 

PROBE:

How did the people react to your suspicion?
Did they share the same suspicion as you
have? How did they express it? Did you tell
them right away or did it take time for you to
open up about your suspicions?

4. Who did you first approach to ask for
help? How did they react to you? Were

they helpful? Were they indifferent?

PROBE:

If you are married, how did you tell your
husband? Or did he initially approach you?
Did you tell your husband right away or did it
take time for you to ask for assistance or
help?

If your child has a sibling, did you tell
him/her and how did you express it?

How did you tell your family member? Or did
the family member initially discuss it with
you? Did you tell your family member right
away or did it take time for you to ask for

assistance or help?

 

100

 

 

 

 

If you approached a friend, a significant

person or professional, how did you open up

with this person? Did you tell this person

right away about your suspicion or did it take

time for you to ask for assistance or help?

5. Describe how you were able to obtain
assistance/help for your child.

PROBE:

What type of professional was initially

referred to you?

Did they refer you to someone else? Was the

referral helpful?

What type of referral did they provide to you

and was the referral helpful?

What type of professional was initially

referred to you?

6. What was your experience at the time that
you were searching for answers? How did

you feel?

PROBE: When you got some initial answers
to your concerns, how did you

feel? Did you explore the questions of

 

101

 

 

 

 

 

possible causes for the diagnosis?

7. Who and what were the
persons/institudon/organization that
finally provided you with the diagnoses?
How did you feel when you learned about
the diagnosis?

PROBE:

How hard/easy was it to for you to get an

evaluation for your child?

Did they provide you with any other kinds of

support for your child and your family?

8. What was your reaction to the diagnoses?
What was your husband or family
member’s reaction to the diagnoses?

9. How did you obtain help for your child in
connection with the diagnosis? How long
did it take from the time of the child’s
diagnosis to the time of obtaining the help
that you needed?

PROBE:

Who (person) or what (organization) assisted

you in order to get the help that you need for

yourchfld?

 

102

 

 

10. Were there changes in your family

role or lifestyle when the child was born and
when he/she was finally diagnosed? How did
you feel when they informed you about the

diagnosis?

PROBE:
Describe differences/similarities in your
role or lifestyle before and after the child’s
diagnosis.
11. Did the diagnosis of the child change the

way you behaved with your child?

 

 

RESEARCH QUESTIONS 12. Keeping in mind that persons or
2. What are the mothers’ institutions that assisted you in obtaining
experiences of social support your child’s diagnoses, what were the
systems that affect, influence, kinds of supports that they provided for
assist and challenge mothers in your child, your family and yourself?
assisting their children during How did they help you? (information
their early years (birth to early gathering, emotional support, social
years)? networking)

PROBE:

Were they helpful? Did you feel that they

 

 

103

 

 

understood your situation?
Did you feel alone? Did you feel

supported?

 

 

3. Using Bronfenbrenner’s
ecological systems theory, what
is the mother’s level of social
support in the four systems:
microsystem, mesosystem,

exosystem, and macrosystem?

 

13. Describe the levels of support from:
immediate (husband) or partner, other
children, family members, friends, school
district (teachers, principals, Early on,
special education teachers), and
community and/or parent groups?

PROBEx

Who/what do you feel helped and supported

you the most during your challenging times?

How about your friends?

How about your social affiliations?

Friends with children? Neighbors? People at

the school bus stop? People at work?

How about your personal beliefs?

14. What were the barriers that you
encountered in the process of getting help
for your child (second language,
miscommunication, lack of
medical/financial support, lack of family,

school, or institutional support?

 

104

 

 

15. Describe your relationships/experiences
with mothers/families with children with
autism spectrum disorders/developmental
disabilities and your
relationships/experiences with those
mothers/families that do not have children
with autism spectrum/developmental
disabilities.

16. How did you feel during this whole
journey? Did you feel sad, depressed,

elated, empowered, and helpless?

 

 

RESEARCH QUESTIONS

4. What are the mothers’
perspectives of the
relationships and support
systems that offered the
highest degree of support to
the mothers with children with

autism spectrum disorder?

 

17. Share a meaningful experience about how
you were supported or helped.

PROBE:

Who was the most significant

person or group of people or

association/organization who helped you

made sense of your child’s challenges and

your family’s struggles?

What are the ways that you feel you have

been helped?

18. What have you learned that you need to

do in order to get the help you need for

 

105

 

 

your child and for your family??

PROBE:
Who are the people that you need to get

involved in order to get help?

19. Identify the “success” you feel you have
accomplished while accessing the
supports for your child.

PROBE:

What did you need to do and what kind of

information do you need to successfully

access the support?

20. Having these rich experiences of being a
mother with a child with ASD, how do
you feel about sharing this knowledge
with other parents or professionals?

PROBE:

Did this experience changed the way you

relate to other parents and professionals?

 

 

 

Is there anything else you would like to share

with regarding your experiences?

 

106

 

APPENDIX F

Participants’ Eco-Map

107

APPENDIX E

Participants’ Eco-Map
Code
0 MOTHER 0
Relative
Child

School
Teacher

 
  

  
   
 

Instructions: Identify significant people / institutions and fill in empty circles as
applicable. Fill in connections where they exist. Indicate nature of connection by drawing
lines. Identify strength of support / relationship by the following:

................ For strong

:::::::::: For very Strong
++++++++++ For stressful

108

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109

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