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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.
iii
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
iv
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
v
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
vi
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 [email protected] 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 [email protected].
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, [email protected]
_______________________________Gail Harris-Schmidt, Ph.D., CCC-SLPProfessorFaculty Sponsor, [email protected]
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 [email protected].
I agree to allow distribution of Consent to Participate letters and surveys. _______
I do not agree to allow distribution of
56
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, [email protected]
_______________________________Gail Harris-Schmidt, Ph.D., CCC-SLPProfessorFaculty Sponsor, [email protected]
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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 [email protected].
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, [email protected]
_______________________________Gail Harris-Schmidt, Ph.D., CCC-SLPProfessorFaculty Sponsor, [email protected]
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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 [email protected].
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 [email protected] (773-298-3563) or Dr. Gail Harris-Schmidt at [email protected] (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%