MUSLIM PARENT PERSPECTIVES ON AUTISM SPECTRUM DISORDERS

IN THEIR SCHOOL AGED CHILDREN

Yasmin Sitabkhan, Ph.D.

A THESIS SUBMITTED TO THE GRADUATE FACULTY IN SPEECH-LANGUAGE

PATHOLOGY IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE

DEGREE OF MASTER OF SCIENCE IN SPEECH-LANGUAGE PATHOLOGY

ST. XAVIER UNIVERSITY

Chicago, Illinois

May, 2013

This project was approved by

Advisor

Advisor

Dean, College of Arts and Sciences

ACKNOWLEDGEMENTS

I extend a heartfelt thank you to all the families who participated in this study, as well as

the mosque and support group leaders, colleagues, and friends who assisted me in recruiting

participants.

I owe a very special thank you to my co-advisors on this project, Dr. Gail Harris Schmidt

and Dr. Carol Szymanski, for their invaluable input, guidance, support, and encouragement

throughout the duration of this project.

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TABLE OF CONTENTS

ABSTRACT……………………………………………………………………………………..vii

CHAPTER I: INTRODUCTION………………………………………………………………...1

Background of the Problem……………………………………………………………….1

Purpose of the Study………………………………………………………………………2

Research Question………………………………………………………………………...2

Definition of Terms…………………………………………………………………….….2

Assumptions…………………………………………………………………………….…3

Limitations and Scope……………………………………………………………………..3

CHAPTER II: REVIEW OF LITERATURE…………………………………………………….5

Characteristics of Autism………………………………………………………………….5

Islamic Beliefs and Muslim Perceptions of Disabilities…………………………………..6

Muslim Perceptions on the Cause of Disabilities…………………………………………7

Effects of Stigma in Muslim Communities Regarding Attitudes on Disability and Impairment………………………………….……9 Impact of Stigma Related to Disabilities On the Involvement of Families In Their Religious Community………………………..11

Seeking and Attainment of Intervention by Muslims Families Affected by Disabilities………………………………………….12

Stress and Coping Strategies of Families of Individuals With ASD…………………….15

Responsibilities and Considerations of Service Professionals in Treating Muslim With Disabilities……………………………………………………17

Summary…………………………………………………………………………………19

CHAPTER III: METHODOLOGY……………………………………………………………..20

Research Question……………………....……………………………………………….20

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Participants…………………………………………………….…………………………20

Procedures and Materials…………………………………….…………………………..21

Procedures………………………………………………….………………………21. Materials…………………………………………………………………………...22

CHAPTER IV: RESULTS………………………………………………………………………24

Research Questions………………………………………………………………………24

Demographics of the Respondents……………………………………………………….25

Demographics of the Respondents’ Children With ASD………………………………..25

Opinions on the Cause of ASD……………………………………………………27

Parent Report on the Ability to Secure Intervention for Their Children With ASD……………………………………………………..27

Parent Report on the Intervention and Progress of Their Children With ASD……………………………………….……………...28

Parental Expectations on the Future Progress of Their Children With ASD………………………………………………………29 Parental Expectations on Future Care and Independence of Their Children With ASD………………………………………………………30

Participation in Support Groups……………………………………………...……31

Influence of Religious Beliefs on Perceptions Related to ASD……………....…..32

Family Participation in Their Religious Community and Community Stigma…………………………………………………………...35

Summary…………………………………………………………………………………39

CHAPTER V: DISCUSSION……………………………………………………………….…..41

Perceptions on the Cause of ASD………………………………………………………..41

Influence of ASD Severity on Muslim Parent Perceptions……………………………...42

ASD and the Will of God………………………………………………………………..43

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Ability to Secure Intervention……………………………………………………………43

Difficulty in Special Needs Family Integration into the Muslim Community……………………………………………………………..44

Muslim Community Pressures and Expectation………………………………………....44

Possible Implications of the Results……………………………………………………..46

Limitations of the Study and Call for Research………………………………………….46

REFERENCES…………………………………………………………………………………..48

APPENDIX A: SAINT XAVIER UNIVERSITY INSTITUTIONAL REVIEW BOARD APPROVAL…………………………………..……….52

APPENDIX B: REQUEST FOR PERMISSION LETTER…………………………………….53

APPENDIX C: PERMISSION FORM FOR LEADERS OF MOSQUES……………………..55

APPENDIX D: PERMISSION FORM FOR LEADERS OF SUPPORT GROUPS PROMOTING SPECIAL NEEDS AWARENESS………………….57

APPENDIX E: PERMISSION FORM FOR CLINICAL SUPERVISORS AT THE LUDDEN SPEECH AND LANGUAGE CLINIC…………………………………….59

APPPENDIX F: CONSENT TO PARTICIPATE IN A RESEARCH STUDY…………..........61

APPENDIX G: RESEARCH SURVEY……………………………………………………...…63

APPENDIX H: RESULTS…………………...…………………………………………………69

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ABSTRACT

MUSLIM PARENT PERSPECTIVES ON AUTISM SPECTRUM DISORDERS IN THEIR SCHOOL AGED CHILDREN

By

Yasmin Sitabkhan

The purpose of this study was to determine whether a difference exists between Muslim

versus non-Muslim parent perspectives, anxiety, and ability to secure services for their school-

aged children with autism spectrum disorders (ASD). Muslims have unique religious values and

belief systems that may influence parents’ perceptions on ASD and how the condition is

managed. While some Muslim parents may feel that a child’s condition is God-intended, others

may be affected by a stigma towards disability that is prevalent in their Muslim community.

Both Muslim and non-Muslim parents of school-aged children with ASD in the moderate

to severe range were recruited in the Chicagoland area for a survey-based research study. Survey

questions focused on the parents’ perceptions on the cause of ASD, the impact of intervention,

progress and independence of their children, coping strategies and participation in support

groups, the influence of religious beliefs in managing experiences related to ASD, and possible

stigma related to special needs present in their religious community. Survey results revealed

trends in the responses from Muslim parents of children with ASD. Most of the concerns

expressed by Muslim parents were unique compared to responses from non-Muslim parents.

Many of the Muslim parents’ concerns were rooted in the difficulties and stigma they

encountered in their religious community, due to a lack of special needs awareness. Several

Muslim parents expressed discontent and chose to avoid participation in their religious

community. Several of the Muslim participants expressed difficulty in their ability to integrate

vii

their children with ASD into the Muslim community. Despite experiencing disconnect with their

religious community, several Muslim parents maintained a strong, personal religious foundation

that they utilized as a coping strategy. Some of the Muslim parents expressed feelings of shame

related to their children's disability. Several relied on privacy within their families. In contrast,

responses from non-Muslim parents uncovered little evidence of discontent with their

experiences within their religious communities with regard to their children's disability.

viii

1

CHAPTER I

INTRODUCTION

Background of the Problem

Several factors that are characteristic of Muslim families may influence their perceptions

and management of disabilities. These factors include maintenance of strong family ties across

generations, preservation of both religious and cultural identity, and minimal acculturation to the

ideologies of the Western world. The requirement for Muslims to submit to the will of God can

also have an impact on how disability is viewed by Muslim parents. Muslim parents may take

the submission to the will of God to mean that while a child’s particular condition is what God

intended, parental responsibility is not relinquished in terms of using current knowledge to

manage the condition. Alternatively, Muslim parents may view submission to God’s will to

mean that a child’s disability must be accepted without question since it is what God intended.

Muslim parents holding these beliefs may feel that no strenuous effort should be put forth to

“improve” a child with an impairment. Another factor that may affect a Muslim parent’s attitude

towards disability is a possible stigma towards certain conditions that may be prevalent in their

religious community. In this case, feelings of shame due to the negative attitudes of religious

community members may hinder the ability of a parent to seek out resources and intervention for

a child with a disability (Jegatheesan, Miller, and Fowler, 2010).

Several studies to date have highlighted factors that influence stress and coping strategies

adopted by parents of children with ASD (Dunn, Burbine and Tantleff-Dunn, 2001; Twoy,

Connolly and Novak, 2007), including studies on the attitudes of Muslim immigrant parents on

ASD (Jegatheesan, Miller, and Fowler, 2010) and Asian communities’ attitudes toward

2

disabilities in general (Croot, Grant, Cooper and Mathers, 2008). In contrast to these reports,

few studies have examined the influence of a United States-based Muslim community in shaping

Muslim parents’ perceptions on ASD. Insight into the religious factors that influence the

perception of ASD by Muslim parents and how they manage the condition is an important

consideration for service professionals in order most effectively address the needs of Muslim

clients and their family support network.

Purpose of the Study

The aim of this study was to uncover possible commonalities in the concerns of Muslim

parents regarding ASD, a better understanding of which could lead to the support of these

parents in managing intervention for their children. The present study was therefore undertaken

to provide insight into Muslim parent perspectives on ASD, with a focus on the impact of

religious community-related influences.

Research Question

Is there a difference between Muslim versus non-Muslim parents’ perspectives, anxieties, and

ability to secure services for their school-aged children with ASD?

Definition of Terms

Autism – A neurological disorder of the brain causing impairment in communication, restricted

or repetitive behaviors, and impairment in the ability to engage in social interactions

A utism spectrum disorder (ASD) - a range of conditions classified as pervasive developmental

disorders (including autism, Asperger syndrome, pervasive developmental disorder not otherwise

specified (PDD-NOS), childhood disintegrative disorder, and Rett syndrome) in the Diagnostic

and Statistical Manual of Mental Disorders (DSM-IV) (AllPsych Online, 2011). These

3

disorders are typically characterized by social deficits, communication difficulties, stereotyped or

repetitive behaviors and interests, and in some cases, cognitive delays

Quran – a book that Muslims consider the verbatim word of God as revealed to Prophet

Muhammad

Hadith – traditional accounts of the teachings, sayings, and practices of Prophet Muhammad

Islam - a monotheistic Abrahamic religion based on the Quran. Islam is defined as submission

Muslim - an individual who is an adherent of Islam

Assumptions

In this study, input was gathered from participants living in the Chicagoland area in the

United States. No assumptions were made regarding the gender, race, country of birth, or

education of the participants of this study. The sample population included families of children

with autism. Although many of the participants were located through support groups and

specialty clinics, it was not assumed that participants were well informed about their child’s

disability.

Limitations and Scope

This study was descriptive in providing data on attitudes and experiences. A between

subjects research design was implemented, involving a comparison of Muslim and non-Muslim

parents with children with ASD. Due to the inclusion requirements for the study, each subject

group size was limited to thirty participants. Participants were recruited from a variety of

sources, including the Ludden Speech and Language Clinic at Saint Xavier University, Autism

Society Illinois, as well as mosques and Muslim organizations. Participants from each group

were surveyed with identical, open-ended questions, which allowed for the contribution of

detailed information on experiences and viewpoints. Questions were designed to be neutral in

4

order to avoid any wording that might possibly influence certain answers. Similar themes and

trends were extracted from the responses.

5

CHAPTER II

REVIEW OF LITERATURE

Characteristics of Autism

Autism is a complex neurological and developmental disorder that is characterized by

communication difficulties, sensory challenges, deficits in social interactions, and restrictive

and/or repetitive behavior and interests (National Institute of Child Health and Human

Development [NICHD], 2012). Autism can persist throughout an individual's life, and the

effects of the disorder can be long-lasting for the affected individuals and their families.

Behaviors can range from mild to severe. Since different people with autism can exhibit

different symptoms, it is termed an autism spectrum disorder or ASD (a group of disorders

spanning a range of similar features). The incidence of ASD is currently estimated at 1 in 88

children (Centers for Disease Control and Prevention [CDC], 2012). In most cases, no specific

cause of ASD can be identified (NICHD, 2001).

Most professionals state that the earlier the intervention, the better the prognosis. Early

detection of autism that leads to early intervention is key to improving developmental outcomes

(Wallace & Rogers, 2010). Therapies and behavioral interventions for ASD are designed to

address specific symptoms and can lead to substantial improvement. The ideal treatment plan

coordinates therapy and interventions that meet specific, individual needs. People with an ASD

usually continue to require services and support as they get older, but many are able to live and

work successfully and independently or within a supportive environment (National Institute of

Neurological Disorders and Stroke [NINDS], 2013).

6

Islamic Beliefs and Muslim Perceptions of Disabilities

Islam is the fastest growing and the second largest world religion (preceded only by

Christianity), with more than one billion followers worldwide (U.S. State Department, 2010, Ali,

Liu, and Humedian, 2004). The majority of Muslims adhere to Shahadah, which includes belief

in one God (Allah) and the Final Prophet Muhammad, Salat (five prayers a day), Zakat (charity),

fasting during the holy month of Ramadan, Hajj (pilgrimage to Mecca in Saudi Arabia at least

once in a lifetime), and other obligatory practices pertaining to diet, gender roles, dress, family

values, and interpersonal relationships. All these factors are believed to directly impact one’s

mental and physical health (Mehmud, 2000).

Islam serves a variety of functions, such as the provision of meaning, identity, comfort,

spirituality, and community. Muslim societies, regardless of ethnicity or culture, are a collective

whole rather than individualistic. Islam teaches that Muslims of all ethnicities are brothers and

sisters and are bound together by shared religious beliefs, rituals, customs, and values. The role

of the Muslim community is to meet the emotional needs of all of its members. Similarly, a

Muslim family is not isolated but is part of a greater whole, the “ummah”. Within the family,

there is a strong focus on the collective whole rather than the individual needs and wants of

family members. The well-being of a family is fostered by cooperation, mutual dependency,

loyalty, and conforming to expected roles and behaviors, which all are in contrast to Western

values of individuality. Loyalty, obedience to parents and cultural leaders, and conformity to

both family and community expectations and cultural norms are all expected of Muslims (Ali et

al., 2004).

Health and sickness are both seen in Islam as originating from God. In Islam, God allows

sickness and suffering as a means to draw an individual closer to Him. Islam means submission,

and accordingly, Muslims faced with sickness may view their situation as a test from God and

7

simply accept their predicament. This belief is considered to be a virtuous trait and essential to

one’s faith (Butt, 2012). Regardless, the seeking of therapeutic and medical intervention does

not run counter to the teachings of Islam. In fact, individuals who are sick are instructed in

various Hadith (the Prophet’s Sayings) to seek treatment (Adib, 2004). The sanctity of human

life is affirmed in the Quran, and the teachings of Islam state that each moment of life must be

valued and preserved. Human beings are considered to be responsible for the care of their own

bodies, which are viewed as gifts from God (Butt, 2012).

Muslim Perceptions on the Cause of Disabilities

Several studies have shed light on the influence of the Muslim community on perceptions

of disabilities and the ability to secure intervention. Rather than adhering to a universal belief

regarding disabilities, varying perceptions among Muslims have been documented. Such

attitudes may not necessarily have a religious basis; a cultural impact may have a more

significant influence.

Some Muslims adhere by the fact that Islam encourages individuals to find cures for their

impairments and seek appropriate treatment (Ansari, 2002). Other Muslims abide by the belief

that a disability is a test from God that should be endured, with a focus on patience and

acceptance of God’s decisions. The condition, under this belief, is not thought to be curable.

Some Muslims hold beliefs that disabilities arise from a weak character. For instance, some

Muslims believe that mental illness is caused by pressures that are counter to the teachings of the

holy book of Islam, the Quran. Under this notion, it is believed that as doubt and conflict within

an individual increase, symptoms of mental illness develop (Farooqi, 2006).

Cinnirella and Loewenthal (1999) conducted interviews with thirteen Muslims with

depression. Over half of the study participants stated that their condition resulted from religious

8

causes, due to fate or God’s will. Similarly, interviews of 109 Muslims of Pakistani origin with a

diagnosis of epilepsy revealed that the participants were more likely to interpret their condition

as a divine test of personal faith (Rhodes, Small, Ismail and Wright, 2008). While most

participants had a proactive approach to their condition, other participants saw their experience

with disability as a means of expiating past sins (Rhodes, et al. 2008).

Similarly, in a study conducted in the United Kingdom (U.K.) by Bywaters, Ali, Fazil,

Wallace, and Singh (2003), interview responses from five Bangladeshi and 15 Pakistani parents

of children with disabilities revealed the importance of Islam in the families’ lives. However,

only a minority of the parents referred to God as the cause of their children’s impairment. Of the

parents who viewed the disability as the will of God, the disability was actually viewed as a

punishment from God. Many parents were found to be poorly informed on the cause of their

children’s impairment or on prognosis, due to language barriers in particular.

Croot, Grant, Cooper and Mathers (2008) conducted a study involving 16 in-depth

interviews with Pakistani parents and grandparents of children with severe impairments. This

study was conducted based on a rising concern that mainstream services in the United Kingdom

were ill-equipped to provide services to Pakistani parents who used alternative solutions to

address disabilities. All parents referred to theologically-based explanations for the presence of

their children’s disabilities. All parents viewed their children with disabilities as gifts from God.

These parents believed that they were specially chosen by God for a divine purpose to have

children with disabilities. Further, all parents gave additional explanations, including

biomedically-based ones, for their children’s disabilities.

9

Effects of Stigma in Muslim Communities Regarding Attitudes on Disability and Impairment

Communities with religion as a fundamental resource for their framework tend to give

rise to cultures with specific traditions and attitudes. These patterns are learned and passed on

from generation to generation. Likewise, negative attitudes can give rise to community-related

stigma that can persist through generations. Cultural factors that are intertwined with behaviors

and attitudes may assume a significant role in how families perceive, experience, and manage

their children’s disabilities (Myers & Ravindran, 2012; Berry, Poortinga, Segall, & Dasen,

2012). For example, cultural factors may prompt families to opt for treatments without proven

efficacy (Levy & Iyman, 2003). It is important then to understand the cultural context behind the

reason that families make particular treatment decisions.

Corrigan (2004) describes two types of stigma: public stigma and self-stigma. Public

stigma is the perception held by a group or society that an individual is socially unacceptable,

thus leading to negative reactions towards the individual. Views associated with public stigma

are harmful as they can lead to prejudice, discrimination, and stereotyping of the individual.

Self-stigma is the perception held by the individual that he or she is socially unacceptable. Self-

stigma can result in the decline of an individual’s self-esteem or self-worth due to the individual

labeling himself or herself as an unacceptable person.

Regardless of any particular ethnic or religious/cultural background, numerous people

avoid intervention in order to avoid public stigma, being “labeled” by their community members,

and the prejudice and discrimination associated with the label. Cultural stereotypes and false

images about disabilities arise from such labels and are attributed to the individual. Once an

individual is labeled by his/her community, he/she may internalize the stigmatizing ideas,

10

resulting in a decrease in the perception of self-worth. Society tends to endorse stigmatizing

ideas in relation to disabilities (Corrigan, 2007; Soheilian & Inman, 2009).

Exploring the relationship between attitudes towards disabilities and cultural stigma is

crucial in order to determine effective ways to reach out to certain populations. Rao, Feinglass

and Corrigan (2007) suggested that ethnic, racial, and religious backgrounds may contribute to

increased mental illness stigma. Research has identified stigma from the Muslim community in

particular as having an impact on how Muslim families perceive, approach, and navigate

disabilities. For example, interviews with Bangladeshi and Pakistani Muslim families with

children with severe impairments revealed that the parents encountered negative responses in

their community regarding their children with disabilities. Several parents held feelings of

shame and did not have extended family support (Bywaters, Ali, Fazil, Wallace & Singh, 2003).

Pakistani Muslim parents in the Croot et al. (2008) study also reported that members of their

communities held stigmatizing beliefs, such as the possibility of a disability being transferred or

“caught” from another child, or that maternal diet during pregnancy or an inherent flaw in either

parent could have caused their children’s disabilities. The parents refuted these ideas but were

nonetheless affected by the stigmatizing beliefs.

In traditional Middle Eastern American Muslim families, there is also a strong sense of

community and identity centered on God and culture. According to interviews conducted by Sue

and Sue (2008), Middle Eastern Muslim Americans tend to be concerned with the appearance

and reputation of the family or community. In the Middle Eastern culture, an individual is

subordinate to the group and is influenced by the values and needs of both family and the

Muslim community when making decisions. Al-Damarki (2003) reported via survey that within

the Middle Eastern Muslim culture, self-disclosure to outsiders is considered unacceptable

11

behavior. Individuals from Middle Eastern Muslim American communities may be stigmatized

for seeking intervention instead of turning to family or surrendering to God. Turning to someone

outside the family (e.g. a service professional) can be seen as an insult to the family and can

suggest family dysfunction to community members. Middle Eastern Muslims may avoid seeking

help for fear of bringing shame on themselves as well as their family or community. For this

reason, seeking help and intervention not only affects the individual, but also the family image

and status in the religious community as well (Soheilian & Inman, 2009).

Impact of Stigma Related to Disabilities On the Involvement of Families In Their Religious Community

Research studies have been conducted to examine how the pressure associated with

having a child with a disability impacts family inclusion within the religious community. Parker,

Mandleco, Roper, Freeborn and Dyches (2013) surveyed 111 Christian parents of typically

developing children and those with a child with a disability to determine whether a difference

exists between the groups regarding family relationships and religious community involvement.

Parents of typically developing children were shown to have higher levels of religious

community involvement compared to parents of children with Down syndrome and other

disabilities (Parker et al. 2013). It was suggested that parents of typically developing children

may simply have more time to engage in religious practices compared to parents with a child

with a disability, due to the difficulty in taking a child with special needs to worship services.

Specifically, since children with disabilities may have unpredictable and inappropriate behavior,

parents may avoid the hardship of keeping the child under control by avoiding religious

gatherings altogether. Speraw (2006) reported additional challenges families with children with

disabilities face in dealing with unwelcoming leaders and members of their religious

communities.

12

Few studies have highlighted the barriers to religious community involvement

encountered by Muslim parents with a child with a disability. Among those studies was one

conducted by Mirza, Tareen, Davidson and Rahman (2009). This study revealed via survey of

Pakistan Muslim parents of children with intellectual disabilities that stigma contributed to

decreased opportunities for the families to participate in community activities.

Seeking and Attainment of Intervention by Muslims Families Affected by Disabilities

Islamic religious and cultural beliefs can influence Muslims’ views and actions on life,

health, disease, and death. An appreciation of the influence of religious as well as cultural,

ethnic, and national factors on individuals of the Muslim faith is crucial in order to understand

what drives their ability to effectively seek interventions for disabilities. Farooqi (2006)

examined how Islamic traditions and Pakistani cultural norms affect healthcare choices of

psychiatric patients of Pakistani origin. Bedside interviews of patients involved questions on the

type of healing practices that were sought, their choice of treatment, and frequency of

interventions per week. All patients reported having previously sought some type of traditional

healing practice. Male patients participated in a higher number of visits to traditional healers per

week compared to female patients. This result may highlight Pakistani cultural influences

related to gender discrimination in mobility and taboos on women’s consultation and interaction

with male healers. Although Pakistanis typically hold in regard the complete submission to

God’s will, the lack of intervention sought by Pakistani women was suggested to be due more to

a cultural rather than religious influence. Patients with schizophrenia were also more likely to

seek multiple traditional healing methods compared to patients with anxiety disorders. Patients

revealed that anxiety disorders in particular are perceived in the Pakistani culture to be an

outcome of a “weak will power”. Such Pakistani cultural influences, according to Farooqi

13

(2003), may be rooted in centuries of Hindu influence, misunderstood Islamic beliefs due to

poverty, political and economic instability, blaming of the supernatural for misfortune, and lack

of costly support services in rural remote areas of Pakistan.

Considering that Pakistan has one of the highest rates of childhood intellectual disabilities

in the world, Mirza et al. (2009) examined via survey Pakistani community management of

intellectual disabilities. Results showed a delay between detection and the search and attainment

of intervention. Results also revealed elevated parental stress, home management consisting of

physical containment, and a lack of knowledge regarding the cause of and effective interventions

for intellectual disabilities. In contrast, Rhodes et al. (2008) conducted interviews of 109

Muslim individuals of Pakistani origin with a diagnosis of epilepsy. For most of the participants,

belief in the will of God did not prevent them from actively seeking treatment. Most of the

participants had also used a form of religious healing, through either personal prayer, pilgrimage,

or consultation with a religious healer.

In a study by Bywaters et al. (2003) that gathered responses via interviews from five

Bangladeshi and 15 Pakistani families with children with disabilities, families were found to be

open to medical treatment for their children. Although evidence confirmed the importance of

religion in the lives of most of the parents interviewed, the families were not adverse to adopting

medical explanations (e.g. illness, pregnancy issues) for their children’s impairment and in

seeking assistance, regardless of any belief in God’s will. Families declined services if the needs

of the family were unmet. These parents desired and sought intervention, but did not consider

formal services for the future care of their children.

Rhodes et al. (2008) conducted interviews of 109 Muslim individuals of Muslim

Pakistani origin with a diagnosis of epilepsy. For most of the participants, belief in the will of

14

God did not prevent them from actively seeking treatment. Many participants saw their

disability as an opportunity to demonstrate their personal strength and courage in the face of

adversity. There was little evidence in the participants’ responses that indicated passivity or

resignation in an acceptance of God’s will as the basis of their disability. Most of the

participants had also used a form of religious healing, whether through personal prayer,

pilgrimage, or consultation with a religious healer.

In the study by Jegatheesan et al. (2010), three multilingual South Asian Muslim

immigrant families of children with ASD shared their experiences, including the process of

seeking assistance. All families expressed a preference for service professionals of a similar

linguistic and cultural background. All parents felt frustration due to a lack of individualized

discussion (including a lack of parental involvement in setting goals) with service professionals.

An Arab Muslim population was the focus of a study by Aloud and Rathur (2009) on

factors that impact treatment for mental health issues. The Arab Muslim population was chosen

for the study’s focus since members of this population had reported issues of cultural adjustment,

immigration problems, domestic violence, and child abuse, all of which are correlated with

mental health status. The events of September 11, 2001 were also cited as a contributory factor

to mental health problems and a need for a focus on this population regarding problems related to

mental health management. It was reported that within the Arab Muslim culture, cultural norms

such as heavy family responsibility and concepts of privacy influence attitudes with regard to

seeking intervention. A survey was distributed to 285 Arab Muslim community residents of

varying educational backgrounds in Columbus, Ohio. Responses revealed that Arab Muslim

individuals born in the United States were more likely than foreign-born individuals to consult

with mental health professionals. Foreign-born participants tended to experience societal stigma

15

and regarded the seeking of mental health services as shameful. Some participants stated that

they tolerated mental health problems for an extended period of time before considering

intervention. The authors of the study suggested that this may be due to the cultural tendency of

Arab Muslims to view complaints about pain as a negative aspect of their personalities. Among

the participants with lesser education, the reluctance to seek formal help was linked to both a

lack of knowledge or familiarity with the health care system (Aloud and Rathur 2009).

Stress and Coping Strategies of Families of Individuals With ASD

It has been recognized that parents of children with ASD experience clinically significant

levels of stress and depression and exhibit characteristic profiles of stress (Bekhet, Johnson &

Zauszniewski, 2012). Parents have revealed that their concerns are related to issues of their

children’s dependency, lack of current or potential independence, and the long-term burden of

managing the disorder (Koegel, Schreibman, Loos, Dirlich-Wilhelm, Dunlap, Robbins & Plienis,

1992). It is important for service professionals to be cognizant of the pervasive influence of

ASD symptoms on the mental well-being of parents and the importance of assisting parents in

coping with the behavioral and social impairments of their children. Effective coping strategies

may especially serve parents in alleviating specific stress areas and the impact of stress on

aspects of the family life. Coping strategies can include family attributes that help parents

“regenerate” (including family integration, organization, and adaptability), support from family

and friends, and social support (including parental training programs, and respite and support

groups). Religious coping strategies can also be utilized as parents turn to religion for meaning,

comfort, and emotional well-being (Tarakeshwar & Pargament, 2001).

Twoy, Connolly, and Novak (2007) examined the coping strategies that were adopted by

94 parents of children with ASD. Parents completed a questionnaire as well as the Family Crisis

16

Oriented Personal Evaluation Scale (F-COPES) with items on coping strategies and level of

adaptation. F-COPES scores revealed that fathers scored higher (more favorably) on the coping

scale compared to mothers. Results also indicated that parents enlisted the support of friends,

other families with children with ASD, and service agencies. A higher coping score for

reframing (the ability of an individual to redefine a stressful event in a manner to make the event

more manageable) was observed for Asian American parents while a higher score of passive

appraisal (the ability to address problems by means of passive behaviors, such as avoidance) was

observed for Caucasian parents. A majority of parents (regardless of ethnicity) used passive

appraisal as a strategy in coping with their children’s diagnosis of ASD.

Dunn, Burbine, Bowers, and Tantleff-Dunn (2001) also revealed difficulty with stress in

parents of children with ASD. In this study, 58 parents of children with ASD were surveyed on

stress-related factors. Results revealed that these parents were more prone to negative outcomes

(including social isolation, depression, and impact on spousal relationships) compared to parents

of children with other disabilities. Evidence revealed a greater influence of coping strategies as

opposed to social support on the different negative outcomes.

Several studies have examined stress-related factors and coping strategies adopted by

Muslim parents of children with ASD. A study by Abraham (1995) revealed that during times of

difficulty, Middle Eastern Muslim Americans tended to rely heavily on family for help in coping.

Individuals in Middle Eastern Muslim culture rely on families in discussing and resolving

emotional issues (Al-Damarki, 2003).

Jegatheesan et al. (2010) focused on the experiences of three multilingual South Asian

Muslim immigrant families with their children with ASD. All parents experienced similar

feelings of shock, denial, stress and confusion upon learning of their children’s diagnosis. All

17

parents did not rely on extended family and felt uncomfortable seeking out support groups due to

language issues and feelings of embarrassment. Interestingly, all parents expressed relief that

their children were boys and that the disabilities were not overtly visible.

Regardless of ethnicity or religious background, raising a child with an ASD can be

overwhelming for parents and families. The pervasive deficits often present in children with

ASD are associated with a plethora of difficulties for parents, including decreased parenting

efficacy, increased parenting stress, adverse effect on marital relationships, and an increase in

mental and physical health problems (Tarakeshwar & Pargament, 2001). Service professionals

should consider both parent and family stress effects and how they can negatively impact not

only the child with ASD but also the potential reduction of any positive gains of intervention.

Responsibilities and Considerations of Service Professionals in Treating Muslim With Disabilities

Parents from diverse cultures face unique challenges and barriers in how they manage

their experiences, education, and intervention for their children with disabilities. It is widely

accepted that therapy is the most effective when the therapist understands and exhibits sensitivity

to the client’s cultural, spiritual, and religious backgrounds. Service professionals can best serve

clients by establishing personal contact with the family (while keeping in mind that individuals

from different cultures may feel that contact with a service professional is disrespectful),

realizing the importance of effective language communication, establishing trust with families of

different cultures, and asking questions that convey important information without shaming the

family (Rogers-Adkinson, Ochoa & Delgado, 2003).

Considering the fundamental importance of family, community, and religion to Muslims,

service professionals have been recommended to explore both family and community resources

in providing intervention to Muslim clients (Ali et al., 2004). Bywaters et al. (2003) revealed

18

that service professionals lack knowledge in the beliefs that may be held by Muslim parents

(specifically, feelings of shame, a choice to rely on privacy within their families as opposed to

allowing intervention, poor expectations of their children’s prognosis, and the view of their

child’s impairment as the will of God). It was suggested that service professionals may face

difficulty in connecting with and treating individuals from ethnic communities due to language

barriers and a perception of the complexity of services. This lack of knowledge held by service

professionals may impact the delivery of services. It was emphasized that service providers have

a responsibility to address the feelings, attitudes and knowledge of ethnic families and to

appreciate the religious beliefs that may shape coping strategies adopted by some families.

Service professionals should also consider the degree of acculturation of Muslim clients

and/or their families. Family members in later generations are assumed to have higher levels of

acculturation compared to members of the first generation. Determination of acculturation level

can have a positive impact on both assessment and treatment planning. Service professionals

should also consider being responsive to a different communication style. Muslim clients and/or

their families may not respond openly and frankly to direct questions. Shyness, a lack of self-

disclosure, periods of silence, and minimal eye-contact may be misinterpreted by service

professionals (Springer, Abbott & Reisbig, 2009). Finally, service professionals should be aware

that they may encounter a situation that calls for a need to encourage a reluctant Muslim client or

the family of a Muslim client. Many Muslims may decline to seek intervention due to the belief

that Islam should provide answers to all personal issues. (Sayed, 2003).

Given the centrality of Islam to many Muslims, service professionals may wish to

consider inviting Muslim clients and/or their families into a conversation geared towards

understanding how religion impacts the family and their management of the disability. Abu

19

Raiya and Pargament (2010) suggested that families should be questioned as to whether the

disability has affected the individual/family unit religiously or spiritually, and if religion or

spirituality has been involved in the way the individual and/or family perceives and copes with

the problem. By inviting clients to engage in a religious dialogue, barriers can be lowered in

order to enhance understanding. By developing cross-cultural competence, service professionals

can open the door to a more meaningful therapeutic conversation with clients and/or their

families. Sidestepping religious and cultural issues in therapy can lead to an incomplete picture

of the lives of Muslim clients.

Summary

Practitioners are faced with a growing need to gain awareness and knowledge of family

beliefs in order to develop culturally appropriate ways to work with parents and children with

disabilities. Research findings such as those reviewed above may contribute to a better

understanding of different attitudes about disabilities within varied families and communities.

Service professionals will best serve Muslim clients and their families with the benefit of a clear

picture on the ways that Islam influences the lives and actions of its followers.

The study detailed in this thesis was conducted in order to gain more insight the

perceptions, ability to seek intervention, and religious community-related influences experienced

by Muslim parents of children with ASD residing in the Chicagoland area. The purpose of this

study was to uncover possible trends in the concerns of Muslim parents regarding ASD, a better

understanding of which could lead to the support of these parents by service professionals in

managing intervention for their children.

20

CHAPTER III

METHODOLOGY

Research Question

The purpose of this study was to determine whether a difference exists between Muslim

versus non-Muslim parent perspectives, anxiety, and ability to secure services for their school-

aged children with ASD. Emphasis was centered on the question of a possible impact of Muslim

community-related influences on Muslim parent perspectives on ASD.

Participants

Two groups participated in this study: Muslim parents and non-Muslim parents of

school-aged children (age 5-18) with ASD in the mild to severe range. Parent participants in

both groups were in the age range of 25-50 years. Muslim participants included members of

mosques and organizations in the Chicagoland area that promote support and awareness of

families with children with special needs. Non-Muslim participants were recruited from the

Ludden Speech and Language Clinic at Saint Xavier University (Chicago, Illinois) and Autism

Society Illinois. The anticipated size of each group was 30 participants. An even representation

of severity of ASD in the mild to severe range was expected. A total of 34 surveys were returned

anonymously via U.S. mail. Thirty-three surveys were usable for the study.

No assumptions were made regarding gender, age, education, country of birth, or race of

the participants in either group. However, while no particular ethnicity was the intended focus of

this study, all of the Muslim parents who agreed to participate in this study were of Indian (South

Asian) or Pakistani ethnicity. All of the non-Muslim parents who participated in this study were

Caucasian, with the exception of two participants, one of whom was of Spanish descent and the

other who was of Indian (South Asian) descent.

21

Procedures and Materials

Procedures

Prior to the distribution of surveys to potential participants, approval was sought and

obtained from the Institutional Review Board at Saint Xavier University (approval number

FA12008AP1018, dated October 18, 2012, see Appendix A). In order to gain assistance in

recruiting participants from various organizations, the researcher contacted the Clinic Director

from the Ludden Speech and Language Clinic at Saint Xavier University via U.S. mail (see

Appendix B), the organization leader from Autism Society Illinois via email, local mosques

(Muslim Society Illinois in Glendale Heights, Illinois and the Islamic Foundation in Villa Park,

Illinois) via U.S. mail (see Appendix C), and Muslim organizations (Muslim Women’s Alliance

and Muslims Caring About Special Needs) via U.S. mail (see Appendix D) and email. In

addition, with the permission of the leaders of Muslim Women’s Alliance and Muslims Caring

About Special Needs, the researcher posted requests for participants on the groups’ listservs,

which reached approximately 200 individuals. The Clinic Director from the Ludden Speech and

Language Clinic distributed a letter (see Appendix E) requesting assistance for the study to the

clinic supervisors, who then distributed the Informed Consent form (see Appendix F) and survey

(see Appendix G) to the family members of clients. The leaders of Autism Society Illinois,

mosques, and Muslim organizations distributed the cover letters and surveys directly to their

group members who had children with ASD. A total of 120 Informed Consent forms and paper

surveys were sent via U.S. mail to organization leaders, who distributed them to the group

members who qualified for the study.

Confidentiality of the members who agreed to participate was preserved. Participants

either completed the survey by hand or by email using a hard copy of the survey or a copy that

22

was emailed to them. The participants from the Ludden Speech and Language Clinic were

provided with a paper survey and completed it by hand. The completed survey was returned to

one of the faculty advisors of this study at the Ludden Speech and Language Clinic. The

participants who chose to respond electronically returned the completed survey by email to the

researcher’s email address. The participants’ email addresses were not retained by the researcher

or used for any other purposes.

A total of 34 surveys were returned, 13 of which were from Muslim parents and 21 of

which were from non-Muslim parents. Thirty-three of the surveys returned were usable for the

purpose of this study. The subjective comments from the open-ended survey questions were

grouped by the researcher in order to reveal trends in the respondents’ beliefs, actions, and

community-related experiences regarding ASD.

A letter requesting assistance in recruiting participants was sent to the Ludden Speech

and Language Clinic at Saint Xavier University, Autism Society Illinois, and local mosques and

Muslim organizations. Data were collected from November 2012 through March 2013 using a

ten question survey that was anonymously returned to the researcher by U.S. mail. No

identifying information was contained in any of the surveys. The Informed Consent form was

attached to each survey that confirmed the anonymity of the survey.

Materials

The survey contained ten questions regarding the participants' perceptions of the cause of

ASD, the impact of intervention, progress of their children, expectations on the future

independence of their children, coping strategies and participation in support groups, the

influence of religious beliefs in managing experiences related to ASD, family inclusion within

the religious community, and possible stigma related to special needs within the religious

23

community. The survey included several opportunities for the participants to provide subjective

information, in order to gather as much insight as possible from the respondents. Questions on

the survey were designed with the purpose of gaining information that would be most applicable

to this study.

24

CHAPTER IV

RESULTS

Research Questions

The purpose of this study was to uncover possible trends in the concerns of Muslim

parents regarding ASD. A better understanding of the concerns of Muslim parents by service

professionals could lead to more efficient support of these parents in managing intervention for

their children with ASD. Emphasis was placed on the impact of religious community-related

influences. Specifically, the researcher questioned how religious community-based factors affect

Muslim versus non-Muslim parents both emotionally and in their ability to make intervention

decisions for their children.

The following questions were the focus of this study:

1. What are the perceptions of Muslim versus non-Muslim parents of children with ASD on

the cause of the condition?

2. What are the perceptions of Muslim versus non-Muslim parents on the benefit of and

ability to secure interventions for their children with ASD?

3. What are the concerns of Muslim versus non-Muslim parents on the future care and

independence of their children with ASD?

4. Are there differences in the ability of Muslim versus non-Muslim parents of children with

ASD to locate and participate in support groups?

5. Are there differences in how religious beliefs shape the experiences of Muslim versus

non-Muslim parents of children with ASD?

6. Are there differences in the degree of religious community involvement of Muslim versus

non-Muslim parents of children with ASD?

25

7. Are there differences in the abilities of Muslim versus non-Muslim parents to integrate

their children with ASD into their religious community?

8. Are there differences in Muslim versus non-Muslim parents’ experience of stigma related

to ASD within their religious community?

Two groups participated in this study: 13 Muslim parents and 20 non-Muslim parents of

school-aged children (ages 5-18) with ASD in the mild to severe range. Twenty responses were

from non-Muslim mothers or fathers of one or more children with ASD. Thirteen responses

were from Muslim mothers or fathers of one or more children with ASD.

Demographics of the Respondents

All of the respondents resided in the Chicagoland area. The Muslim respondents ranged

in age from 27 to 42, while the non-Muslim respondents ranged in age from 37 to 50. Eighty-

five percent of the Muslim respondents were mothers and 15 percent were fathers. Ninety-five

percent of the non-Muslim respondents were mothers and five percent were fathers. All of the

respondents (both Muslim and non-Muslim) were highly educated and held a bachelor’s degree,

master’s degree, or a Ph.D. All of the Muslim respondents were of Indian (South Asian) or

Pakistani descent, with 62% of Indian descent and 38% of Pakistani descent. Ninety percent of

the non-Muslim respondents were Caucasian, 5% were of Spanish descent, and 5% were of

Indian (South Asian) descent.

Demographics of the Respondents’ Children with ASD

The characteristics of the children of the respondents are important to take into account,

as the number of children with ASD per family, the degree of severity of ASD, and the verbal

ability of the child can impact parental perceptions, attitudes, and relative optimism. All of the

respondents had one or more school-aged children with a diagnosis of ASD. Ninety-two percent

26

of the Muslim respondents had one school-aged child with ASD, while 8% of the Muslim

respondents had two school-aged children with ASD. Ninety-five percent of the non-Muslim

respondents had one child with ASD, while 5% of the non-Muslim respondents had two children

with ASD.

The school-aged children of both the Muslim and non-Muslim participants varied in age.

The children of the Muslim respondents ranged in age from four to 15, while the children of non-

Muslim respondents ranged in age from five to 17. Most of the Muslim and non-Muslim

participants had male children with ASD as opposed to female children affected by the disorder.

Ninety-three percent of the Muslim respondents had a male child, and 7% had a female child.

Eighty-five percent of the non-Muslim respondents had a male child, and 15% had a female

child. Both Muslim and non-Muslim participants had children with a varying range of severity

of ASD. Muslim participants had more children with ASD that was mild in severity, while non-

Muslim participants had more children with severe ASD. Forty-six percent of the Muslim

respondents had a child with mild ASD, 46% had a child with moderate ASD, and 8% had a

child with severe ASD. Thirty percent of the non-Muslim respondents had a child with mild

ASD, 45% had a child with moderate ASD, and 25% had a child with severe ASD. Both

Muslim and non-Muslim groups had approximately equal distributions of parents of verbal

children as opposed to non-verbal children. Sixty-nine percent of the Muslim respondents had a

child with ASD who was verbal, while 31% had a child with ASD who was non-verbal. Sixty-

five percent of the non-Muslim respondents had a child with ASD who was verbal, while 35%

had a child with ASD who was non-verbal.

27

Opinions on the Cause of ASD

Both Muslim and non-Muslim participants held similar perceptions on the cause of ASD.

No trends were observed in the occurrence of particular responses from the Muslim respondents

compared to non-Muslim respondents. Most perceptions on the cause of ASD held by both

Muslim and non-Muslim parents included a genetic basis, environmental toxins, diet, or a

combination of all three. No respondent, Muslim or non-Muslim, expressed any personal feeling

of responsibility or guilt due to their child’s condition. As Non-Muslim Respondent 11 stated,

“It is my understanding that my son’s condition is not a result of parenting or something I did

during my pregnancy.” Only one Muslim respondent suggested that the cause of their child’s

condition was due to the “will of God”. As Muslim Respondent 2 stated, “It (my child’s ASD) is

in the hands of Allah (God). In retrospect, I do not believe that autism is triggered by

contributing factors, such as immunizations, genetics, or environment.”

Similarly, only one non-Muslim respondent attributed her child’s condition to a higher

power or fate. According to Non-Muslim Respondent 2, “I believe some people were meant to

be different. Environmental factors may have contributed, but our son was just made the way he

was supposed to be.”

Parent Report on the Ability to Secure Intervention for Their Children With ASD

All 13 Muslim respondents reported ease in their ability to secure intervention for their

children. Seventy percent of non-Muslim respondents reported ease in their ability to secure

intervention, while 30% of non-Muslim respondents reported difficulty. The non-Muslim

respondents who reported difficulty in securing intervention for their children attributed high

cost and poor insurance coverage as barriers to access of intervention. As Non-Muslim

Respondent 17 reported, “We have a very expensive clinic where we live, but it costs $10,000,

28

so we can’t afford it. We hear about fancy places (interventions) that we can’t afford either. Are

we hurting him (our son) because we aren’t sending him to these places? We often wonder if we

are doing everything possible for him. I wish there was more information about autism so we

would know if we are doing this correctly.”

Parent Report on the Intervention and Progress of Their Children With ASD

Sixty-nine percent of the Muslim parents (nine out of 13 respondents) reported progress

in their children with ASD as a result of intervention, although varying degrees of progress were

expressed. Muslim parents’ positive reports on intervention were not associated with having

children with mild ASD and therefore more easily manageable issues. Of the nine Muslim

parents that reported positively on experiences with intervention, four had children with mild

ASD, two had children with moderate ASD, and two had children with severe ASD. Four

Muslim parents reported a lack of progress or no progress in their children as a result of

intervention.

Of the non-Muslim parents, 85% (17 out of 20 respondents) reported satisfaction with

their children’s intervention. Similar to the Muslim respondents, non-Muslim parents’ positive

reports on intervention were not associated with having children with mild ASD. Of the

seventeen non-Muslim respondents who reported gains due to intervention, six had children with

mild ASD, seven had children with moderate ASD, and three had children with severe ASD.

Three non-Muslim respondents reported dissatisfaction with their children’s intervention and

progress. Of these non-Muslim respondents, two had children with mild ASD and one had a

child with moderate ASD.

Non-Muslim Respondent 11 interestingly stated more of a personal benefit from

intervention as opposed to any positive impact of therapy on her son: “We do a lot of

29

interventions but my son seems to progress at his own rate. Often I think intervention has helped

to educate me and to connect with my son more than it has helped him overcome his difference.

So I think it has impacted me more than him.”

Parental Expectations on the Future Progress of Their Children With ASD

There were no trends in the responses among Muslim versus non-Muslim parents

regarding their beliefs regarding their children’s progress with further intervention. Unlike the

parent reports on the benefits of intervention, parent reports on their expectations on the future

progress of their children were associated with the degree of severity of the child’s ASD. None

of the parents (Muslim or non-Muslim) of children with severe ASD expressed a positive

outlook on the future progress of their children. Forty-five percent of Muslim parents (five out

of 11 parents) who provided a response expressed an optimistic view on the future progress of

their children with ASD. Of the five Muslim parents who provided positive responses, four

parents had children with mild ASD and one had a child with moderate ASD. Fifty-five percent

of Muslim parents (six out of 11 parents) expressed concern on the future progress of their

children with ASD. Of these parents, three had a child with mild ASD and three had a child with

moderate ASD. As Muslim Respondent 11 stated, “I am trying to strengthen my faith to help me

hope for the best. I wish I had a crystal ball to tell me what the future would hold. It scares me.

I had never been very religious, but I am trying to increase my faith, because it helps me

maintain hope in facing the uncertainty.”

Thirty-eight percent of the non-Muslim parents who provided a response (five out of 13

respondents) stated their optimism on the future progress of their children with ASD. Of these

five non-Muslim respondents, three had children with moderate ASD and one had a child with

mild ASD. Sixty-two percent of non-Muslim respondents (eight out of 13 respondents)

expressed concern on the future progress of their children. Of these eight non-Muslim

30

respondents, three had children with severe ASD, three had children with moderate ASD, and

two had children with mild ASD.

Parental Expectations on Future Care and Independence of Their Children With ASD

There were no trends noted in the responses of Muslim versus non-Muslim respondents

regarding expectations on the future independence of their children. Nine out of 13 Muslim

parents provided a response. Twenty-three percent of Muslim parents (three out of nine

respondents) expressed optimism on the future care of their children, while 67 percent of Muslim

parents (six out of nine respondents) expressed concern. Of the Muslim parents who expressed

optimism, three had children with mild ASD and three had children with moderate ASD. Of the

Muslim parents who expressed concern, two had children with mild ASD and one had a child

with moderate ASD. There were no responses to this question from Muslim parents of children

with severe ASD. Muslim Respondent 2 pointedly attributed her unease regarding her child’s

future care to the lack of resources and support in her religious community: “I cannot help but be

worried about it. There are currently no known Muslim organizations that cater to adults with

disabilities. That needs to change.”

Twelve out 20 non-Muslim parents provided a response regarding expectations of the

future independence of their children. As opposed to the Muslim parents, some responses were

received from non-Muslim parents of children with severe ASD. Twenty-five non-Muslim

parents (three out of 12 respondents) expressed optimism in the future independence of their

children, while 75 percent non-Muslim parents (nine out of 12 respondents) expressed concern.

Of the non-Muslim parents who expressed concern over their children’s future independence,

one had a child with mild ASD, four had children with moderate ASD, and five had children

with severe ASD. Of the non-Muslim parents who expressed optimism regarding their

31

children’s future independence, two had children with mild ASD and two had children with

moderate ASD.

Participation in Support Groups

Both Muslim and non-Muslim parents reported ease in their ability to .participate in

support groups. However, all Muslim parents reported that the support groups in which they

were involved were not based in their religious community. All Muslim parents reported a lack

of support groups within their religious community. As Muslim Respondent 11 stated, “They do

not exist in our community. There has been little effort or interest in spearheading them. I have

relied on my family primarily. That’s my support group that has been readily accessible.”

Of the non-Muslim respondents who provided a response on involvement in support

groups, 42 percent (five out of 12 Christian respondents) reported successful participation in

support groups, while 58 percent (seven out of 12 respondents) did not. Reasons for not

participating in support groups included: difficulty to secure childcare, reliance on family and

friends for support, unsatisfying experience with support groups, lack of time to access support

groups due to the intensive needs of the child, and difficulty in locating support groups. Of the

non-Muslim parents who participated in support groups, 25 percent stated that their churches

provided services and support for families with special needs children. As Non-Muslim

Respondent 5 stated, “My church prides itself in celebrating differences and recognizing people

of all backgrounds, including those with special needs. This is why I joined. It is a non-

judgmental, welcoming, and progressive environment that is dedicated to the inclusion of

everyone.”

32

Influence of Religious Beliefs on Perceptions Related to ASD

Trends were uncovered in the responses by Muslim parents on how religious beliefs

shaped their experience in approaching and managing intervention for their children with ASD.

Varying perceptions were reported, but the unifying notion held by all Muslim parents was that

religious beliefs did have a significant impact, either positive or negative.

Sixty-nine percent of Muslim parents (nine out of 13 respondents) felt that religion

shaped their perceptions on their experience with ASD in a positive manner. Fifteen percent of

Muslim parents (two out of 13 respondents) saw their children as special gifts from God. As

Muslim Respondent 1 stated, “We see her as a blessing every day.” One Muslim parent felt that

God had specially chosen her for the challenge of raising a child with ASD: “We feel we are

chosen for this and there will be a reward (in the hereafter)” (Muslim Respondent 1). Twenty-

three percent of Muslim parents (three out of 13 respondents) felt that religion supported their

acceptance the disorder in their children. As Muslim Respondent 4 stated, religion helped her

“pacify things in terms of moving on”. Muslim Respondent 5 felt that religion did not help in

their acceptance of the disorder as much as it did to “give hope that my son’s autism could be

overcome and that he could be cured”. Fifteen percent of Muslim parents (two out of 13

respondents) believed that their children’s condition were due to the will of God and not due to

any personal responsibility. As Muslim Respondent 7 stated, “My situation is God-given. I

don’t blame myself for it. I did not do anything to make it happen.” Fifteen percent of Muslim

parents (two out of 13 respondents) felt religion benefited them in “providing a source of solace

and comfort during (the) darkest times” (Muslim Respondent 10). On the other hand, Muslim

Respondent 6 felt that the Quran had more of a therapeutic benefit on her son: “Quranic

recitation actually calms my son down, so it’s positive for him.” One Muslim parent felt that

33

having a son with ASD had sparked a desire to become more religious: “I am impressed by

others I see who have children with more significant disabilities than my son who handle it with

such strong faith and a solid religious foundation. I see people who have not faltered in their

faith. I would like to increase my faith and knowledge in Islam which I think will be positive for

our entire family” (Muslim Respondent 11).

Fifteen percent of Muslim respondents (two out of 13 respondents) felt impartial to

whether religion impacted their perceptions of ASD. Notably, both of these parents were the

only male Muslim respondents. Fifteen percent of Muslim respondents (two out of 13

respondents) felt that religion had a negative impact. As Muslim Respondent 8 stated, “It (my

experience with ASD) has distanced me from religion at this point.” One Muslim parent

admitted that she previously viewed “autism as a punishment and that God was turning His back

on us” (Muslim Respondent 3).

Eighty percent of non-Muslim respondents (12 out of 15 respondents, all of Christian

faith) felt that religious beliefs shaped their perceptions of ASD in a positive manner. Many of

the perceptions paralleled that of Muslim parents. Thirteen percent non-Muslim parents (two out

of 15 respondents) felt they were chosen by God to raise their special children with ASD: “I feel

that God put my son with me because He knew we could handle it and that our son could teach

us a lot about what is important in life” (Non-Muslim Respondent 6). Seven percent of non-

Muslim parents (one out of 15 respondents) felt that she would be rewarded in the afterlife for

having raised a child with ASD. Seven percent of non-Muslim parents (one out of 15

respondents) held a belief “that God has a plan. I’m not sure what that is, but I pray for

guidance” (Non-Muslim Respondent 3). Seven percent of non-Muslim parents (one out of 15

34

respondents) believed her son was “God’s gift to me and my family and the world” (Non-

Muslim Respondent 9).

Seven percent of non-Muslim parents (one out of 15 respondents) stated that their

religion led them to consider the perspective of their affected children and the difficulties they

face. As Non-Muslim Respondent 11 stated, “My religious beliefs have taught me to love and

care for others as we would want for ourselves. With this in mind, I constantly put myself in my

son’s shoes and empathize with his experiences. Yes, I am extremely frustrated that he does not

understand me. But then I imagine how frustrated he must feel. If I were in his position, I would

want a mother who is patient with me unconditionally.”

Thirteen percent of non-Muslim parents (two out of 15 respondents) felt that religion

equipped them with inner strength and comfort in facing the difficulties of managing their

children’s ASD: “Christianity teaches us faith and patience in the face of adversity” (Non-

Muslim Respondent 1). Seven percent of non-Muslim parents (one out of 15 respondents) felt

that religion helped them accept their children’s ASD. Non-Muslim Respondent 12, a mother of

two children with ASD, stated that religion not only helped her in accepting her children’s

disorders but also supported her in finding ways to help them: “My faith in God has allowed me

to accept my children’s challenges, observe and obtain opportunities, and continue searching for

all that is possible to help them.”

Seven percent of non-Muslim parents (one out of 15 parents) felt that religious beliefs

had no impact on their perceptions of ASD. Thirteen percent of non-Muslim parents (two out of

15 parents) felt that religious beliefs had a negative impact. As Non-Muslim Respondent 17

stated, “When my son was first diagnosed, he (my husband) didn’t know if he believed in God

anymore. He didn’t think God would do that to a child. I think we have both grown and

35

matured since then and our faith is stronger than ever.” On the other hand, Non-Muslim

Respondent 15 experienced a negative attitude towards religious faith that persisted: “I was not a

religious person before (my child’s diagnosis), and I am even less religious now.”

Family Participation in Their Religious Community and Community Stigma

Nine out of 13 Muslim parents provided a response on their ability to participate in their

religious community. All nine Muslim parents experienced difficulty with the integration of

their child and family as a whole into their religious community.

Twenty-two percent of Muslim parents (two out of nine respondents) stated their

reluctance to inform other community members of their children’s diagnosis. As Muslim

Respondent 5 stated, “We don’t tell people he (my son) has autism. Only my parents know. I

just tell people he has ADHD (attention deficit hyperactivity disorder). We have seen kids

recover, and I don’t want the autism label to follow him, which is what would happen in the

Muslim community. I don’t want the microscope on him.” Similarly, Muslim Respondent 13

stated, “Now that our son has shown considerable improvement, my wife and parents are telling

me to stop telling people (that my son has ASD), because he seems normal to most people unless

they spend a lot of time with him or try to talk to him…I tried to tell them that this was not

something we could hide. I don’t think they were ashamed by it, but they just didn’t want people

to think any less of our son.”

Twenty-two percent of Muslim parents (two out of nine respondents) stated their

difficulty in dealing with pressure in the religious community for children to excel academically.

As Muslim Respondent 5 stated, “In the Muslim community there is an overbearing pressure to

push your child to excel. My son does not look disabled on the surface, which makes it hard for

others to understand why we are not living up to their expectations. Our community does not

appreciate that my child learns differently. This makes me feel bad. So I stay away.” This

36

parent further added, “I have come to realize that my son’s success in academics is not the end-

all. I just want him to be functional and independent in the community.”

Muslim Respondent 6 shared similar views in stating, “I don’t feel that people are being

deliberately mean or cruel. They just need to be educated. There is a casting system in the

(religious) community. People thrive on status and where they stand in the community. The

community thrives on a high level of intelligence and excellence. This is draining for a parent of

a special needs kid.” Muslim Respondent 11 offered a similar sentiment, “There is a lot of

pressure (in the Muslim community) on the outward appearance of children, with regards to how

they succeed academically and how much they have achieved. This can be seen as a positive

thing, but in the community it’s just for show and it solidifies your status. It has negative

connotations and it’s an attitude that has been passed down through generations. If one does not

achieve the high expectations of the Muslim community, he or she is valued less and looked

down upon. This puts an extraordinary pressure on Muslim families with children with special

needs, who can’t possibly live up to those expectations.”

Twenty-two percent of Muslim parents (two out of nine respondents) stated that their

choice to withdraw from their religious community stemmed from the community members’ lack

of understanding, awareness, and education on ASD. As Muslim Respondent 1 stated, “there is

not much understanding of (my daughter’s) disorder, behavior, or needs, so we may opt out of

events or leave her with a sitter. We would be more involved if we had more support around

us.” Muslim Respondent 2 suggested a lack of resources for special needs children in her

Muslim community in stating, “I need to limit my involvement since noisy gatherings and events

are often not appropriate for my son.” Muslim Respondent 4 also voiced concern over the lack

of provisions for special needs in Islamic schools: “Teachers in Islamic schools are only

37

volunteers and lack the experience and understanding of kids with special needs. My son would

act up and I would have to be in the class because the teachers could not handle it. I wanted my

son to get the basics of religion, but it was a struggle. I thought, why bother. I should just teach

him on my own.”

Sixty-seven percent of Muslim parents (six out of nine respondents) expressed discontent

with negative reactions by religious community members towards their children with ASD. As

Muslim Respondent 3 stated, “The Imam (leader of the mosque) is welcoming, but the looks and

stares from the community are there.” According to Muslim Respondent 10, “Most Muslims

have a low tolerance for ‘mischief’. We don’t go to the mosque because it is hard to get our son

to behave for long stretches of time. It is really quite isolating. We have developed a thick skin

and try not to take things personally.” As Muslim Respondent 3 stated, “With those we don’t

know, we’ll get looks. One day we went to the mosque, and it was sensory-overload for my son.

He ran in front of people praying. I was so stressed. The men and women are separated in the

prayer hall, so it made it hard to handle my son and two other children. My husband wanted to

help but couldn’t since we were separated in the prayer hall. We finally got home and I realized

I hadn’t had the chance there to perform my own prayers after a day of fasting. I felt going there

was not worth it.” As Muslim Respondent 7 (a mother of two boys with ASD) stated, “I have

encountered very negative reactions. My elder son has verbal stims and flaps, so his disability is

obvious. (Muslim) people have an ego and feel superiority when they see my situation. People

stare, point, and have said rude things, knowing that I can hear. There is a complete difference in

how I am treated by the Muslim community versus how I am treated by people outside the

Muslim community.” Muslim Respondent 7 went on further to state, “When my boys were

younger, they would gravitate towards other kids. Their parents would pull their kids away as if

38

my sons were contagious. We had tried to take (my eldest son) to the mosque for Friday prayers

when he was two. My son was running up and down the aisles. Other women there told me not

to bring him there anymore. That was my last day there.”

An experience of negative reactions from children as well as adults in the Muslim

community was reported. As Muslim Respondent 1 stated, “(There are) quite negative, rude

comments, intolerance (and) inflexibility to accommodate. Adults as well as children lack

awareness. We opt out of events and this impacts our entire family.” Muslim Respondent 10

also felt that negative attitudes of the community were adopted by Muslim children as well as

adults: “I know they are just children, but I feel like the Muslim kids are less tolerant than the

general population. My son has better luck with his cousins because they are family and better

luck with his classmates at the Catholic school he attends. I am overwhelmed with the big hearts

of these little children, and am disappointed that our own Muslim children are not as kind to

him.”

One Muslim parent reported that religious community pressures led to feelings of shame.

According to Muslim Respondent 6, “We feel embarrassed, so even though we don’t want (our

son) to be left out, we avoid community events. We feel different from other people in the

community. Our dynamic is different. It’s hard to face people with that.”

The responses from non-Muslim parents differed from that of Muslim parents in that

there was no mention of feelings of shame regarding their children’s ASD or religious

community pressure for their children to excel. Eleven out of 20 non-Muslim parents (all of

Christian faith) provided a response regarding their ability to integrate their children into the

religious community. Thirty-three percent of non-Muslim parents (four out of 11 respondents)

stated that they did not involve their children in religious events due to the inappropriateness of

39

the settings. Specifically, Non-Muslim Respondents 5 and 6 stated that their children were

unable to tolerate the noise and singing in their churches. Thirty-three percent of non-Muslim

parents (four out of 11 respondents) felt that although their church had made an effort to

accommodate families with special needs children, the provisions were not sufficient enough to

support inclusion of these families within the religious community.

Unlike the Muslim parents (none of whom was able to integrate their children completely

within their religious community), nine percent of non-Muslim parents (two out of 11

respondents) were able to successfully integrate their children in their religious community. As

Non-Muslim Respondent 17 stated, “Our church has embraced our son with open arms. He goes

to a religious class and they are terrific with him.” It should be noted that the child of this parent

had mild ASD with presumably more manageable issues in comparison to a child with ASD of

greater severity.

None of the non-Muslim parents who were of Christian faith experienced overtly

negative attitudes from religious community members. Only one non-Muslim respondent of

Hindu faith expressed discontent with negative attitudes of community members towards her

child with ASD: “I avoid taking my son out in the community. No one understands him and I

can’t avoid the stares and the pointing. My son doesn’t realize or care, but it hurts me too much

to go.”

Summary

The results of this study uncovered trends in the responses from Muslim parents of

children with ASD (see Appendix H). The concerns expressed by Muslim parents were unique

compared to responses from non-Muslim parents. Muslim parents’ responses were similarly

rooted in their perceptions of difficulties and stigma encountered in their religious community

40

with regard to a lack of special needs awareness. On the other hand, responses from non-Muslim

parents uncovered little evidence of discontent with their experiences within their religious

communities in relation to their children’s disability.

Muslim participants’ difficulties within their religious communities with regard to ASD

involved feelings of shame, reluctance to disclose the ASD diagnosis, community pressure to

excel, and lack of community understanding related to ASD. It is noteworthy that the Muslim

participants had more children with mild ASD (46%) compared to non-Muslim participants

(30%). Likewise, Muslim participants had fewer children with severe ASD (8%) compared to

non-Muslim participants (25%). Thus, Muslim participants expressed unique concerns and

difficulties that presumably had less association with having a child with more manageable

issues. The greater ease of Muslim participants in securing intervention for their children (100%

for Muslims versus 70% for non-Muslims) and in successful participation in support groups

(100% for Muslims versus 42% for non-Muslims) did not alleviate the concerns and difficulties

of the Muslims participants.

None of Muslim participants were able to integrate their children into their religious

communities, while 45% of non-Muslim participants were able successfully integrate their

children. However, despite experiencing disconnect with their religious community, several

Muslim parents maintained a strong, personal religious foundation that they utilized as a coping

strategy and that positively impacted their experiences with ASD.

CHAPTER V

41

DISCUSSION

The purpose of this study was to examine Muslim parent perspectives on ASD in their

school-aged children, with a focus on religious community-related influences. The results of this

study supported the conclusions found in the current literature. While most of the Muslim

parents in this study maintained a strong personal religious foundation and were able to secure

intervention for their children, several felt disconnect with their religious community related to a

lack of understanding, provisions, resources, and support. Similar to what has been reported in

the literature, some Muslim respondents experiences negative attitudes and pressure from their

religious community, leading to feelings of shame and fear of the label associated with an ASD

diagnosis.

It is interesting to note that the only non-Muslim respondent of Hindu faith reported

similar difficulty in integrating her son with ASD into her religious community, due to negative

encounters with community members. Since this individual is of Indian (South Asian) descent,

and all of the Muslim respondents of this study were of either Indian (South Asian) or Pakistani

descent, it may be suggested that cultural rather than religious factors may play a more profound

role in shaping parent perceptions on ASD. Although the Muslim parents in this study were

pointedly asked questions regarding religious factors that influence their perceptions and choices,

it should be recognized that cultural and religious influences are intertwined and difficult to

separate.

Perceptions on the Cause of ASD

Both the Muslim and non-Muslim parents in the present study stated a belief in either a

genetic component, environmental triggers, or a biomedical basis as the root of their children’s

ASD. The beliefs of both the Muslim and non-Muslim parents about the influence of these

42

factors in the incidence of ASD may reflect an increased comfort level in seeking out current

information, resources, and research on ASD.

As Non-Muslim Respondent 17 stated, “I wish there was more information about autism

so we would know if we are doing this correctly.” There is an excess of interventions for ASD

to date, many of which are alternative, unproven approaches. Parents can feel a burden due to

the abundance of approaches that offer hope but do not necessarily have solid evidence-based

backing. Parents’ decisions on which direction to take in intervention are further confounded by

the astronomical costs associated with various approaches, lack of insurance coverage, and the

uncertainty on a tangible cause of ASD from which to base a particular intervention.

Influence of ASD Severity on Muslim Parent Perceptions

The degree of severity of a child’s ASD may reasonably be expected to impact parents’

perceptions and concerns. The ASD severity of the children of the respondents was considered

in order to ascertain whether the level or degree of impairment could have influenced trends seen

in certain responses. For both the Muslim and non-Muslim respondents, positive reports on the

benefits of intervention were not correlated with mild ASD in their children. Muslim and non-

Muslim parents with children with mild, moderate, and severe ASD all reported positively on

intervention. Similarly, for both Muslim and non-Muslim respondents, negative or neutral

reports on experiences with intervention were not associated solely with a severe ASD in their

children. Unlike the parent reports on the benefits of intervention, parent reports on their

expectations on the future progress of their children were associated with the degree of severity

of the child’s ASD.

ASD and the Will of God

43

It has been widely reported that Muslim parents of children with disabilities often adhere

to the belief that their children’s condition is due to the “will of God” (Butt, 2004). While such a

belief is seen in a positive light in Islamic societies as a testament to the strength of one’s faith,

there is concern that this belief may lead to passivity in seeking necessary intervention and

resources. Most of the respondents of the present study (Muslim and non-Muslim) did not offer

the “will of God” as the reason behind their children’s ASD.

Ability to Secure Intervention

Many Muslims abide by the belief that a disability is a test from God that should be

endured, with a focus on acceptance of God’s decisions (Farooqi, 2006). Some Muslims may

believe that submission to God’s will equates to making no external effort in “correcting” what

God has done. All of the Muslim respondents of this study secured intervention for their

children; none avoided intervention due to a belief that their children’s condition is in God’s

hands. All the respondents assumed an active rather than a passive role in their children’s

intervention and progress.

Similarly, there were no differences in the concerns of Muslim versus non-Muslim

parents on the future independence of their children. None of the respondents stated that their

children’s future independence lay in God’s hands. Most of the respondents (both Muslim and

non-Muslim) felt anxiety and concern over their children’s future independence.

The parents’ acceptance of the child’s diagnosis and effectiveness of coping strategies

can also play into how parents view issues such as progress and what the future holds for their

children. Muslim Respondents 11 and 12, as a married couple, had different outlooks related to

how they viewed their child’s condition. Muslim Respondent 12 stated, “(I feel) very positive.

We will expect some limitations, but most of the obstacles can be overcome.” His wife, Muslim

44

Respondent 11, was less optimistic: “I worry about how his deficits will impact his future. I

have gone through the years since his diagnosis hoping that he would outgrow it. It has been

hard for me to accept and that just compounds my worry.”

Difficulty in Special Needs Family Integration into the Muslim Community

Speraw (2006) highlighted challenges that families with children with disabilities face in

dealing with unwelcoming leaders and members of their religious communities. Similarly,

several Muslim respondents in this study reported difficulty in their ability to fluidly integrate

their children and families into their religious community. It may be reasonable to assume that

parents of typically developing children simply have more time to engage in religious practices

compared to parents with a child with a disability. However, the Muslim respondents

specifically reported facing hurdles related to their children’s unpredictable and inappropriate

behavior, lack of resources and provisions at mosques and religious events, and overtly negative

attitudes from religious community members. Several Muslim parents reported that they chose

to circumvent these difficulties by avoiding religious gatherings altogether.

Muslim Community Pressures and Expectation

According to Sue (2008), in the Middle Eastern Muslim culture, an individual is

subordinate to the group and is influenced by the values and needs of both family and the

Muslim community when making decisions. Self-disclosure to outsiders is considered

unacceptable behavior, and accordingly, an individual may be stigmatized for seeking

intervention instead of turning to family or surrendering to God. Muslim respondents of this

study similarly reported experiencing religious community pressure to refrain from disclosing

their children’s ASD diagnosis. However, the reason for their reluctance to “come out” with

their children’s diagnosis had less to do with a desire to avoid behavior deemed unacceptable by

45

the community. Rather, some Muslim respondents stated that they wished to avoid branding

their children with a label that would be seen in a negative light in the religious community.

Muslim parents reported feeling concern that such a label would follow their child and have a

future impact on how their children would be viewed and valued in the religious community.

According to Ali et al. (2004), conformity to family and community expectations and

cultural norms are all expected of Muslims. This may explain the pressure experienced by the

Muslim respondents with regard to meeting the high standards of the excellence in children that

is dictated by the religious community. Families of special needs children face a greater

challenge compared to those with typical children in the attempt to meet the expectations of the

community. If their children are unable to meet those expectations, families often have no

choice but to withdraw and isolate themselves from their religious community. The isolation of

families as a result contributes to a cycle that perpetuates the lack of special needs awareness in

the Muslim community. Families withdraw from their religious community due to negative

attitudes and lack of support for special needs children in the community. When families with

special needs children withdraw from the community, community members no longer have

exposure to children with special needs and their families. This lack of exposure leads to

community members’ poor understanding and empathy regarding the needs and experiences of

families with special needs children. Negative attitudes within the community can carry through

generations, as was suggested in this study in which Muslim parents reported negative attitudes

not only from adults in the Muslim community but children as well.

Possible Implications of the Results

46

The results of this study highlight the unique perceptions encountered by Muslim parents

based on religious community-related experiences. While intervention for children with ASD

may not be impacted, a need for support of parents is indicated. Negative attitudes toward

disabilities may have a root in culture and over time may have led to a misinformed religious

basis for the social stigma surrounding disability. Work needs to be directed towards raising

special needs awareness in the Muslim community and breaking the cycle of family isolation and

poor understanding and support within the community. Service professionals in particular can

best serve a Muslim child with ASD and their families via a better understanding of the complex

cultural and religious community-based factors that impact the Muslim family unit.

Limitations of the Study and Call for Research

Limitations of the study include:

The sample size of both Muslim and non-Muslim participants was small, which limited

the generalization of the results.

No controls were created for age, ethnicity, socioeconomic status, parents’ marital status,

ASD severity level, or number of children in the family with an ASD diagnosis. The lack

of controls limited generalization of the results.

Because ASD is a heterogeneous disorder, the results of the study cannot be applied to all

parents (Muslim or non-Muslim) of school-aged children with ASD. Many children with

ASD may be lower or higher functioning than the children represented in this study.

Therefore, parents may have different experiences than those of the participants of this

study.

Additional research in the following areas will add to understanding of the unique

concerns and difficulties experienced by Muslim parents with school-aged children with ASD:

47

Parents of children with higher-functioning ASD may have different experiences than

parents of children with lower functioning ASD. Additional research can focus on a

comparison of Muslim parents with school-aged children with higher versus lower

functioning ASD. A comparison of these groups would serve to determine of the level of

severity, functioning, or independence of children with ASD impacts the experiences of

Muslim parents.

Although participants of this study were not selected based on any particular ethnic

background, a majority of the recruited Muslim participants were of South Asian or

Pakistani descent while a majority of the non-Muslim participants were Caucasian and of

Christian faith. It is noteworthy that the single non-Muslim participant of South Asian

descent and Hindu faith expressed concerns and discontent with the Hindu community

that mirrored the concerns expressed by Muslim participants. Further research should be

conducted to focus on concerns expressed by Muslim and non-Muslim participants of a

broader range of religions and ethnicities. A study with a focus on particular religions

and ethnicities would ascertain whether commonalities exist in concerns expressed by

Muslim parents of children with ASD. The goal of such a study would be to uncover root

causes of difficulties expressed by parents of particular religions and ethnicities and

possible solutions (i.e., intensive special needs awareness programs) in bringing

communities that are lagging in special needs awareness up to par with others.

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APPENDIX A

52

S AINT • X AVIER • U NIVERSITY Institutional Review Board

October 18, 2012

Re: “A Comparison of Muslim and Non-Muslim Parent Perspectives on Autism Spectrum Disorders in School-Aged Children”

Approval Number: FA12008AP1018

Dear Ms. Sitabkhan, Dr. Szymanski, and Dr. Harris-Schmidt:

Thank you for submitting the documentation requested by the IRB for the research project named above. The IRB has determined that all procedures are in compliance with university and federal guidelines governing protection of rights of human subjects. Your request for approval is hereby granted. You may begin collecting data for your project at any time.

Please note that institutional and federal regulations require that any changes in data collection procedures, sampling design, record keeping procedures, or other aspects of the research protocol must be immediately reported to the Institutional Review Board. Approval is granted for one year. If your study extends beyond one year, it will be subject to an annual review. Please include the IRB approval number in any correspondence. The submission of a letter requesting this review will be due on 10/18/2013.

This is the only letter you will be sent. Please print a copy of this message for your records. If you have any questions, or if you require a hard copy of this letter, contact me at (773) 298-3229 or korenman@sxu.edu.Best wishes for success with your research project!

Sincerely,

Tamara Korenman, PhD.Saint Xavier UniversityInstitutional Review Board

53

APPENDIX B

October, 2012

Mrs. Pamela Klick. M.A., CCC-SLP/LSt. Xavier UniversityDirector, Ludden Speech and Language ClinicDepartment of Communication Sciences and Disorders3700 W. 103rd St.Chicago, IL 60655

Dear Mrs. Klick:

I have chosen to conduct a thesis as a part of the requirements to obtain my degree. My study seeks to compare Muslim and non-Muslim parent perspectives on autism spectrum disorders (ASD) in school-aged children. Muslim and non-Muslim parents of school-aged children with ASD will be surveyed to collect information regarding their perceptions on the cause of autism spectrum disorders, interventions, the progress of their child, accessibility of support groups, and the impact of religious beliefs on their perceptions. A better understanding of the attitudes of Muslim parent on ASD could serve to improve the support of these parents in securing appropriate and timely intervention for their children with ASD.

I am writing to request your permission to survey non-Muslim parents of school-aged children with ASD that attend the Ludden Speech and Language Clinic. In order to request participation from this specific group of parents at the Ludden Speech and Language Clinic, I am in need of assistance from the clinical supervisors who oversee the therapy of the children of these parents. I will rely on these clinical supervisors to first identify non-Muslim parents of school-aged children with ASD. I will then provide the clinical supervisors with Consent to Participate forms and the surveys to distribute to the parents. The Consent to Participate describes the research study’s purpose and assures the parents of complete anonymity in the study (all information gathered is anonymous in that there are no codes or identifiers on any of the surveys). The survey will take approximately 15-20 minutes to complete, and I am requesting that the surveys be submitted by 12/1/12. Information included in the project report will be grouped so that no individual responses can be identified. The report will be used to share what I have learned as a result of this project with other professionals in the field of speech-language pathology.

I appreciate your time and consideration. If you have any questions or would like further information about this study, please contact me at ysitabkhan@yahoo.com.

I grant permission for the distribution of questionnaires in the Ludden Clinic. _______

I do not grant permission for the distribution

54

of questionnaires in the Ludden Clinic. _______

_______________________________Signature and Title

Sincerely,

_______________________________Yasmin SitabkhanGraduate Student

_______________________________Carol Szymanski, Ph.D., CCC-SLPGraduate Student Director, Associate ProfessorFaculty Sponsor, szymanski@sxu.edu

_______________________________Gail Harris-Schmidt, Ph.D., CCC-SLPProfessorFaculty Sponsor, harris@sxu.edu

55

APPENDIX C

Permission Form for Leaders of Mosques

10-13-12

Dear Sir or Madame:

I am a graduate student in the Department of Communication Sciences and Disorders at Saint Xavier University. I have chosen to conduct a thesis as a part of the requirements to obtain my degree. My study seeks to compare Muslim and non-Muslim parent perspectives on autism spectrum disorders (ASD) in school-aged children. Muslim and non-Muslim parents of school-aged children with ASD will be surveyed to collect information regarding their perceptions on the cause of autism spectrum disorders, interventions, the progress of their child, accessibility of support groups, and the impact of religious beliefs on their perceptions. A better understanding of the attitudes of Muslim parent on ASD could serve to improve the support of these parents in securing appropriate and timely intervention for their children with ASD.

I am writing to request permission to distribute Consent to Participate letters, paper and pen surveys, and pre-stamped envelopes to Muslim parents of your mosque/organization who have a child with ASD. The Consent to Participate describes the research study’s purpose and assures the parents of complete anonymity in the study (all information gathered is anonymous in that there are no codes or identifiers on any of the surveys). The survey will take approximately 15-20 minutes to complete, and I am requesting that the surveys be submitted by 12/1/12. Information included in the project report will be grouped so that no individual responses can be identified. The report will be used to share what I have learned as a result of this project with other professionals in the field of speech-language pathology.

My research proposal has been reviewed and approved by the Institutional Review Board at Saint Xavier University. Participation in this research study is completely voluntary and participants may withdraw at any time. No identifying information about any participant will be collected. The returned surveys will not be accessible to anyone other than me or my faculty sponsors, and the gathered results will be aggregate.

Please sign and return this page to me in the return envelope I have provided. If you agree to assist me with this project and distribute this survey, I will follow up with you and provide you with the appropriate number of surveys. Thank you for your time and consideration. If you have any questions or concerns, please feel free to contact me at ysitabkhan@yahoo.com.

I agree to allow distribution of Consent to Participate letters and surveys. _______

I do not agree to allow distribution of

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Consent to Participate letters and surveys. _______

_______________________________Signature and Title

___________________________Organization

Sincerely,

_______________________________Yasmin SitabkhanGraduate Student

_____________________________Carol Szymanski, Ph.D., CCC-SLPGraduate Student Director, Associate ProfessorFaculty Sponsor, szymanski@sxu.edu

_______________________________Gail Harris-Schmidt, Ph.D., CCC-SLPProfessorFaculty Sponsor, harris@sxu.edu

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APPENDIX D

Permission Form for Leaders of Support Groups Promoting Special Needs Awareness

10-13-12

Dear Sir or Madame:

I am a graduate student in the Department of Communication Sciences and Disorders at Saint Xavier University. I have chosen to conduct a thesis as a part of the requirements to obtain my degree. My study seeks to compare Muslim and non-Muslim parent perspectives on autism spectrum disorders (ASD) in school-aged children. Muslim and non-Muslim parents of school-aged children with ASD will be surveyed to collect information regarding their perceptions on the cause of autism spectrum disorders, interventions, the progress of their child, accessibility of support groups, and the impact of religious beliefs on their perceptions. A better understanding of the attitudes of Muslim parent on ASD could serve to improve the support of these parents in securing appropriate and timely intervention for their children with ASD.

I am writing to request permission to distribute Consent to Participate letters, paper and pen surveys, and pre-stamped envelopes to Muslim parents of your mosque/organization who have a child with ASD. The Consent to Participate describes the research study’s purpose and assures the parents of complete anonymity in the study (all information gathered is anonymous in that there are no codes or identifiers on any of the surveys). The survey will take approximately 15-20 minutes to complete, and I am requesting that the surveys be submitted by 12/1/12. Information included in the project report will be grouped so that no individual responses can be identified. The report will be used to share what I have learned as a result of this project with other professionals in the field of speech-language pathology.

My research proposal has been reviewed and approved by the Institutional Review Board at Saint Xavier University. Participation in this research study is completely voluntary and participants may withdraw at any time. No identifying information about any participant will be collected. The returned surveys will not be accessible to anyone other than me or my faculty sponsors, and the gathered results will be aggregate.

Please sign and return this page to me in the return envelope I have provided. If you agree to assist me with this project and distribute this survey, I will follow up with you and provide you with the appropriate number of surveys. Thank you for your time and consideration. If you have any questions or concerns, please feel free to contact me at ysitabkhan@yahoo.com.

I agree to allow distribution of Consent to Participate letters and surveys. _______

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I do not agree to allow distribution ofConsent to Participate letters and surveys. _______

_______________________________Signature and Title

___________________________Organization

Sincerely,

_______________________________Yasmin SitabkhanGraduate Student

_______________________________Carol Szymanski, Ph.D., CCC-SLPGraduate Student Director, Associate ProfessorFaculty Sponsor, szymanski@sxu.edu

_______________________________Gail Harris-Schmidt, Ph.D., CCC-SLPProfessorFaculty Sponsor, harris@sxu.edu

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APPENDIX E

Permission Form for Clinical Supervisors at the Ludden Speech and Language Clinic

Dear Clinical Supervisor:

I have chosen to conduct a thesis as a part of the requirements to obtain my degree. My study seeks to compare Muslim and non-Muslim parent perspectives on autism spectrum disorders (ASD) in school-aged children. Muslim and non-Muslim parents of school-aged children with ASD will be surveyed to collect information regarding their perceptions on the cause of autism spectrum disorders, interventions, the progress of their child, accessibility of support groups, and the impact of religious beliefs on their perceptions. A better understanding of the attitudes of Muslim parent on ASD could serve to improve the support of these parents in securing appropriate and timely intervention for their children with ASD.

I have received permission from Mrs. Klick to proceed with this study and to inquire if you could distribute my surveys to non-Muslim parents of school-aged children with ASD whose therapy you supervise at the clinic. In order to request participation from this specific group of parents at the Ludden Speech and Language Clinic, I am in need of assistance from the clinical supervisors who oversee the therapy of the children of these parents. I am requesting that you identify non-Muslim parents of school-aged children with ASD. I will then provide you with Consent to Participate forms, the surveys, and return envelopes (addressed to Dr. Gail Harris-Schmidt) to distribute to the parents. The Consent to Participate describes the research study’s purpose and assures the parents of complete anonymity in the study (all information gathered is anonymous in that there are no codes or identifiers on any of the surveys). The survey will take approximately 15-20 minutes to complete, and I am requesting that the surveys be submitted by 12/1/12. Information included in the project report will be grouped so that no individual responses can be identified. The report will be used to share what I have learned as a result of this project with other professionals in the field of speech-language pathology.

I appreciate your time in assisting me with this project. Please inform me regarding how many questionnaires you would be able to distribute to the parents of your clients with ASD. If you have any questions or would like further information about this study, please contact me at ysitabkhan@yahoo.com.

Sincerely,

_______________________________

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Yasmin SitabkhanGraduate Student

_______________________________Carol Szymanski, Ph.D., CCC-SLPFaculty Sponsor

_______________________________Gail Harris-Schmidt, Ph.D., CCC-SLPFaculty Sponsor

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APPENDIX F

Consent to Participate in a Research Study

“A Comparison of Muslim and Non-Muslim Parent Perspectives on Autism Spectrum Disorders in School-Aged Children”

Dear Participant,

I am currently enrolled in a master's degree program at Saint Xavier University, and as part of this program I am carrying out thesis research. I am examining Muslim parent perspectives on autism spectrum disorders in school-aged children.

The purpose of this project is to gain insight into the underlying basis of the attitudes of Muslim parents on autism spectrum disorder in their school-aged children. A better understanding of the attitudes of Muslim parent on autism could serve to improve the support of these parents in securing appropriate and timely intervention for their children with autism.

Please find attached a survey. The survey includes questions asking for your perceptions on the cause of autism spectrum disorders, interventions, the progress of your child, accessibility of support groups, and impact of religious beliefs. This paper and pencil survey will take approximately 15-20 minutes to complete. The completion of this survey allows me to include you in the reporting of information for this research project. All information gathered is anonymous in that there are no codes or identifiers on any of the surveys. Information included in the project report will be grouped so that no individual responses can be identified. The report will be used to share what I have learned as a result of this project with other professionals in the field of speech-language pathology. If you choose to complete this survey, please place your completed form in the envelope provided and return to Dr. Gail Harris-Schmidt.

Participation in this study is completely voluntary. You may choose, for any reason, not to answer certain questions or you may withdraw from the study at any time with no penalty or loss of benefits to which you are otherwise entitled. Your decision to participate will in not impact your relationship with any religious organization to which you belong.

If you have any questions or would like further information about my project, please contact my research advisors, Dr. Carol Szymanski at szymanski@sxu.edu (773-298-3563) or Dr. Gail Harris-Schmidt at harris@sxu.edu (773-298-3568). For issues related to protection of human subjects, contact the faculty advisers or the Institutional Review Board at Saint Xavier University (IRB.sxu.edu or 773-298-3945).

Thank you so much for your consideration.

Sincerely,

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___________________________

Yasmin Sitabkhan (Saint Xavier University Graduate Student)

___________________________

Dr. Carol Szymanski, Ph.D. CCC-SLP/LGraduate Program Director, Associate Professor

___________________________

Dr. Gail Harris-Schmidt, PhD CCC-SLP/L Professor

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APPENDIX G

A number will be assigned to each participant completing the survey in

order to maintain confidentiality.

Completion of the survey implies consent to participate

Age of parent completing survey: _____________

Gender of parent completing survey (male or female): _________________

Education level of parent completing survey: __________________

Do you identify with an ethnic group? If so, which one? ________________________

Please specify your beliefs (check one): ____ Christianity ____ Jewish

____ Islam/Muslim ____ Hindu

____ Atheist/Agnostic ____ Other. Please specify: ______________

Age of child: ______________

Gender of child (male or female): _______________

Is your child’s autism mild, moderate, or severe? _______________

Is your child verbal or nonverbal? __________________________________________

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1. What are your perceptions on the cause of autism?

2. Please describe how intervention has impacted your child.

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3. What are your expectations on the future progress of your child?

4. What are your feelings regarding the independence and/or future care of your child?

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5. How have your religious beliefs shaped your experience with autism?

6. How involved are you and your family within your religious community? Do you primarily interact at a social level with individuals belonging to your religious community, with individuals outside of your religious community, or with both?

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7. Please describe your experiences with your child within your religious community. Have you been able to integrate your child within your religious community with ease or with difficulty? Have your experiences been positive or negative? Please elaborate.

8. Do you feel any stigma from your religious community regarding your child’s disability?

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9. Do you feel that you are able to take advantage of support groups? If your answer is no, please explain why.

10.Do you feel that you are able to search for and implement treatment for your child? If your answer is no, please explain why.

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APPENDIX H

RESULTS

Demographics of Parents

Muslim Non-MuslimFathers 15% 5%Mothers 85% 95%Caucasian 0% 90%Indian (South Asian) 62% 5%Pakistani 38% 0%Hispanic 0% 5%

Demographics of Children With ASD

Muslim Non-MuslimMale 93% 85%Female 7% 15%Mild ASD 46% 30%Moderate ASD 46% 45%Severe ASD 8% 25%Verbal 69% 65%Non-verbal 31% 35%

Parent Report on Ability to Secure Intervention

Muslim Non-MuslimEase 100% 70%Difficulty 0% 30%

Parent Report on Progress of Their Children Due to Intervention

Muslim Non-MuslimProgress Reported 69% 85%Lack of or No Progress 31% 15%

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Parent Expectations on Future Progress of Their Children

Muslim Non-MuslimPositive Expectations 62% 38%Negative Expectations 38% 62%

Parent Expectations on Future Care of Their Children

Muslim Non-MuslimOptimistic 23% 25%Concerned 67% 75%

Parent Participation in Support Groups

Muslim Non-MuslimSuccessful Participation 100% 42%No participation 0% 58%

Influence of Religious Beliefs on Parent Perceptions Related to ASD

Muslim Non-MuslimReligion Positively Shapes Parent Perceptions 69% 80%Religion Supports Acceptance of ASD 23% 7%Religion Supports Empathy Towards Child 0% 7%Religion Provides Strength and Comfort 15% 13%Religious Faith Increased Due to Experience with ASD 8% 0%ASD Is Due to Will of God 15% 0%Belief That God Has A Plan 0% 7%Children With ASD Are Gifts from God 15% 15%Parents are Chosen By God to Have Children with ASD 8% 13%Belief of Reward in Afterlife Due to ASD Experience 0% 7%Religion Does Not Impact Perceptions 15% 7%Religion Negatively Shapes Perceptions 15% 13%Religious Faith Decreased Due to Experience with ASD 8% 13%ASD is Due to Punishment of Parents By God 8% 0%

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Family Integration into Religious Community

Muslim Non-MuslimAble to Integrate 0% 45%Unable to Integrate 100% 55%

Parents Report on ASD Experiences in Relative to Religious Community

Muslim Non-MuslimPositive Effort By Community to Provide ProvisionsFor Special Needs Children

0% 33%

Parent Reluctance to Inform Community of ASD Diagnosis 22% 0%Parent Report of Community Pressure to Excel 22% 0%Lack of Community Awareness/Understanding of ASD 22% 0%Lack of Community Provisions for Special Needs Children 11% 33%Parent Report of Negative Community Reactions to ASD 67% 9%Parent Report on Feelings of Shame 10% 0%