Focus Autism Other Dev Disabl OnlineFirst, published on April 5, 2010 as doi:10.

1177/1088357610361344

Focus on Autism and Other

Autism From a Religious Perspective: Developmental Disabilities

XX(X) 1–12
© 2010 Hammill Institute on Disabilities
A Study of Parental Beliefs Reprints and permission:
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in South Asian Muslim DOI: 10.1177/1088357610361344

http://focus.sagepub.com

Immigrant Families

Brinda Jegatheesan1, Peggy J. Miller2, and Susan A. Fowler2

Abstract
Three multilingual immigrant South Asian Muslim families who have children with autism were interviewed to ascertain
their beliefs about autism. Data were drawn from interviews and conversations recorded during 17 months of ethnographic
fieldwork in homes and community. Results indicate that families understood the task of raising a child with autism in
religious terms. In keeping with the precepts of Islam, their overarching goal was to raise their children as normally as
possible, incorporating them into ordinary social, linguistic, and religious practices at home and in the community. Parents
strongly contested experts’ understandings of autism, which they believed undermined rather than promoted their
children’s development. Findings have implications for multicultural teacher education and enhancing home, community,
and school collaboration.

Keywords
Muslim families, religion, autism

In the United States there are an estimated 6 million children
under the age of 18 years from culturally and linguistically
diverse backgrounds who have a communication disorder,
such as autism (Battle, 2002). To date, very few researchers
have focused on children with autism from diverse back-
grounds. The federal mandate to address cultural and linguis-
tic diversity among children with disabilities underscores the
pressing need for taking into account minority and indigenous
beliefs and childrearing practices as applied to children with
autism (Zhang & Bennett, 2003; Zionts & Zionts, 2003)
One of the most seriously neglected groups is Muslim
immigrant families who have children with disabilities.
Muslims have strong intergenerational family ties and values
of collectivism, preservation of their cultural and religious
identity, and minimal acculturation to Western ideologies
(Azmi, 1997). However, the Muslim culture too often is
portrayed as primitive and violent; women are seen as
uneducated and oppressed, with little to contribute in a patri-
archal society; and Muslims are viewed as a single ethnic
group (Suleiman, 1999). Since the 9/11/01 tragedy and the
Iraq war, these negative views of Islam and Muslims have
become more pronounced and such stereotypical negative
images of Islam have had damaging effects on Muslim
families who have children attending schools in the United
States (Rizvi, 2005).
There is a growing recognition in research on children
with disabilities that religious beliefs can play an important
role in how individuals interpret and explain disability. Like
all families, families of children with special needs hold a
variety of religious beliefs that inform their understanding
of children and childrearing. Following the diagnosis of a
disability, religious parents may draw upon their faith to
help them make sense of and construct meanings around
disability.
In a study that involved 250 Latino mothers of young
children with developmental disabilities (Skinner, Bailey,
Correa, & Rodriguez, 1999; Skinner, Correa, Skinner, &
Bailey, 2001), 55% of the mothers believed that their child
was a sign from God, a finding that the authors interpreted
as reflecting, in part, their Catholic faith. Three percent of
the families who interpreted the child’s disability as a sign
from God believed that they were being punished for their
1
University of Washington, Seattle
2
University of Illinois at Urbana-Champaign
Corresponding Author:
Brinda Jegatheesan, 322 J Miller Hall, Box 353600,
University of Washington, Seattle, WA 98195
Email: brinda@u.washington.edu

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2 Focus on Autism and Other Developmental Disabilities XX(X)
sins, whereas the majority interpreted the sign in a more
positive light (e.g., as a blessing, as an experience that would
make them more compassionate).
Shaked’s (2005) qualitative study of 30 ultra-Orthodox
Jewish Israeli families of children with autism revealed sim-
ilarly positive interpretations. Twenty families regarded their
children as having a high spiritual status or appointed to carry
out an important religious mission, a view that is based on
the Jewish variant of the doctrine of reincarnation. However,
parents in this study were troubled that their children with
autism would not be able to conform to the Jewish rites and
studies. Yet, all mothers aspired to have their children take
part as much as possible in religious rites. Ten mothers
reported resistance from their husbands in this matter.
Coulthard and Fitzgerald (1999) interviewed 60 parents
in the Republic of Ireland about the impact of having a child
with autism and found, in contrast to the previously men-
tioned studies, that 45% reported that this event in their lives
had prompted them to distance themselves from God and
their religion. However, some parents said that they trusted
God to take care of the situation.
Researchers in two studies shed light on the religious
beliefs of families from South Asia. Gabel (2004) conducted
a 2-year ethnographic study of 20 Asian Indian Hindu fami-
lies of children with mental retardation in the United
States. In keeping with Hindu beliefs about reincarnation
and karma, parents believed that disability was a gift from
God, given to them as a result of sins committed in their
previous life. They believed that the person with the dis-
ability or his/her family had lessons to be learned in their
present life as a result of past life actions. The birth of a
child with a disability also was a way to release them from
the cycle of death and rebirth. In a chapter on American fami-
lies with South Asian cultural roots, Jacob (2004) provides
a brief overview of similar cultural beliefs of retribution for
past evil deeds. The author describes how South Asian par-
ents, both Hindus and Muslims, turn to prayers, pilgrimages,
and religious adornments such as amulets and saffron threads
for ensuring the well-being of their children.
In sum, the relevant research traditions provide very
limited information about the meanings parents from dif-
ferent cultural groups associate with autism and other dis-
abilities or about whether and how religious beliefs inform
their understandings of how to raise a child with autism.
This study was designed in an attempt to remedy this situa-
tion by providing an in-depth examination of parental beliefs
about autism in three multilingual South Asian Muslim
immigrant families. The questions to be answered in the
current study are: How did South Asian Muslim immigrant
parents make sense, within their cultural meaning systems,
of the experience of having a child with autism? Specifi-
cally, what were their beliefs about autism? And what were
their childrearing goals?
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Method
The aim of this study was to look at the family as nested in
its cultural system and take into account how parents
make sense of their children’s disabilities when it comes to
childrearing goals and practices. The study was grounded in
17 months of fieldwork that included more than 700 hrs of
participant observation in the home and community envi-
ronments of three families.
Participants
The three multilingual families who participated in the study
were Muslim families from South Asia, living in a large
Midwestern city in the United States. Criteria for the selec-
tion of families were: (a) being immigrants from a South
Asian country; (b) having a child with autism in the age
range of 2 to 8 years; and (c) being from a multilingual back-
ground with either spoken, written or comprehension ability
of two or more languages. The involvement of three families
was appropriate as the labor-intensive nature of long-term
ethnographic work aims to develop highly detailed nuanced
understandings of insider perspectives.
The families ranged from low to middle socioeconomic
status. Reported annual family income ranged from $20,000
to $60,000. Observations of the families’ community, home,
and quality of life confirmed their reported income. For
example, the family with the lowest income lived in a dilapi-
dated and unsafe apartment that lacked heating in winter. The
family with the highest income lived in a well-maintained
private apartment with modern amenities. Two families were
Sunni Muslim and one family was Shiite Muslim.
Parents of the three families were in their 30s and 40s
and had lived legally in the United States for approximately
10 to 15 years. Each family had one son with autism who
participated in the study. The boys were between the ages of
5 and 6 years at the onset of the study. The children began to
show characteristics of autism between 12 and 18 months
of age, such as obsessive desire for sameness, loss of lan-
guage, oversensitivity to stimuli, and preference for being
alone. Final diagnoses were given when the children were
around 2 to 3 years of age, after consultations with a wide
range of pediatricians and psychiatrists. At the beginning of
the study, two of the children were nonverbal and used ges-
tures to communicate. The third child was semiverbal (a
few words in Hindi and English). Table 1 provides sum-
mary information on the three families. A pseudonym was
assigned to each participant to maintain anonymity.
Procedure
The study was longitudinal in design and ethnographic in
approach. It combined participant observation with audio
Jegatheesan et al. 3

Table 1. Family Profile

Current Age at
Age Diagnosis Languages Family Family Members in Parent
Child (years) (years) Country at Home Religion Status Siblings Home Occupation

Jalil 6 3 M: Bangladesh Bangla Sunni Extended 1 Mother, father, F: transport

Khan F: Bangladesh Hindi Muslim family grandmothers personnel
Arabic (2), aunts (6), M: housewife
English uncles (5),
cousins (2)
Raqib 5 2 M: Pakistan Hindi Shia’ Extended 0 Mother, father, F: small business
Yoosof F: Bangladesh Urdu Muslim grandmothers (2), owner
Kachhi grandfather (1), M: housewife
Gujarati aunts (2), uncles
Arabic (2), cousins (4)
English
Aziz 5 3 M: Pakistan Hindi Sunni Nuclear 0 Mother, father F: Hourly paid
Latif F: Pakistan Urdu Muslim family blue-collar
Arabic worker
English M: part-time
night clerk
Note: F father; M mother.

and video recordings of everyday speech and audiorecorded
interviews with caregivers (e.g., Miller, 1982; Ochs, 1988;
Schieffelin, 1990). The parents’ beliefs about autism were
drawn primarily from interviews and conversations involv-
ing the ethnographer (first author) and the parents.
The first author’s cultural and linguistic background as a
Singaporean of Indian ancestry and her experiences living
and teaching in multicultural and multilingual societies
such as Singapore, India, and Hawaii, where people of the
Islamic, Hindu, Buddhist, and Christian faiths are an inte-
gral part of society, helped her to recruit and interact with the
families in a manner that was culturally and religiously
appropriate. She is multilingual and fluent in two of the her-
itage languages of the families (Hindi and Urdu).
Recruitment of participants. Early intervention and early
childhood special education teachers and service providers
helped recruit the first two families. Another two families
were identified through the first family’s connections in the
community. One of these families participated and another
withdrew 3 months into the study. The first author contacted
each family in person and verified eligibility for participa-
tion, answered parents’ questions, and obtained family con-
sent. Families were given a description of the study with a
consent letter in English (with an option of having it trans-
lated into their native languages). They also were informed
of their rights, such as freedom to decline to answer specific
questions and to withdraw from the study at any time.
Interviews. One of the hallmarks of ethnographic research
is that procedures must be adapted to local cultural mean-
ings and practices to yield culturally valid findings. This
involves customizing the interview to local communicative
norms (Briggs, 1986; Miller, Hengst, & Wang, 2003; Miller,
Wang, Sandel, & Cho, 2002; Quinn, 2005). In the current
study, the first author’s fieldwork with the families led her
to realize that formal one-on-one interviews in a stationary
location would not work in busy households involving
many family members. Accordingly, she aimed for a more
conversational style of interviewing that fit more comfort-
ably into the flow of daily life. Interviews with the mothers
occurred mainly at home, as the mother went about her house-
hold duties; some interviews occurred en route to the grocery
store or in the park as the child played nearby. Use of a small,
battery-operated tape recorder made it possible to record
these interviews in transit. Each mother was interviewed at
least 8 times, yielding at least 15 hrs per mother.
Fathers were interviewed separately from their wives. In
respect for religious beliefs that restricted face-to-face inter-
action between men and women other than their wives, the
authors decided that phone interviews would be the most
comfortable medium for the first author to use in talking
with the fathers about their perspectives. Indeed, this proved
to work well, with fathers willingly and even eagerly par-
ticipating, usually in the late evening. Each father was inter-
viewed a minimum of 5 times, amounting to at least 8 hrs
per father. The content of the initial interview was shaped
by the first author’s observations in the homes and the com-
munity, where she paid particular attention to spontaneous
remarks that parents made about their children and about
the challenges that they faced in raising them. It was during
the observations that the first author began to notice that the

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4 Focus on Autism and Other Developmental Disabilities XX(X)
parents’ religious beliefs informed their childrearing under-
standings and practices. Interview topics included parents’
beliefs about having a child with autism, how to parent a
child with autism, religious precepts and practices relating
to childrearing and disability, multilingualism, caregiver/child
communicative behavior, and experiences with speech ther-
apists and other professionals. For both mothers and fathers,
questions for the second and subsequent interviews were
developed based on the issues that emerged during the anal-
ysis of the preceding interview(s). In this manner, analysis
of previous interview transcripts helped shape questions for
subsequent interviews.
Following the parents’ lead, the ethnographer used a
combination of Hindi, Urdu, and English during the inter-
views. Paraphrasing, a form of informal member checking,
was used during each interview to ensure accuracy of inter-
pretations (Lincoln & Guba, 1985). The first author tran-
scribed all interviews and recordings in the languages in
which they were spoken. Two native speakers of Hindi, Urdu,
and Bangla checked all of the transcripts for accuracy by
reading the transcripts while listening to the tapes. In addi-
tion, the parents reviewed selected portions of the interview
transcripts as a final check for accurately conveying what
they intended or wanted to say.
Development of Analytic Codes
Consistent with ethnographic methodology, analysis was an
ongoing and multileveled process (e.g., Miller et al., 2003).
The first author searched the data corpus, which consisted of
audio transcripts and field notes, to form initial inductive cat-
egories (Glaser & Strauss, 1967). She made repeated passes
through the data, identifying patterns common across the
families as well as those that were unique to a family. She
discerned relationships among categories and sought evi-
dence for and against emerging patterns and relationships.
She continually sought multiple perspectives of both the par-
ticipants and others. For example, parents and close relatives
such as grandparents and aunts provided their perspectives
on their topic during conversations at home. Qur’anic and
Islamic theology teachers who were recommended by the
families also provided insights. This feedback from the field
continually expanded insights and helped to refine data col-
lection and analysis, which led to improving, altering,
replacing, eliminating, and merging one or more categories
as warranted by the data. The first author compared previ-
ous categories with emerging ones (Glaser & Strauss, 1967;
Miles & Huberman, 1984).
To triangulate the data and obtain additional insights
about some of the interpretations provided by the families,
the first author also read books on Muslim religious prac-
tices and beliefs pertaining to child development and learn-
ing. She read the explanatory translated version of the Qur’an
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Table 2. Themes that Emerged from Data Analysis
Overarching Themes
1. Moral, loving, and resilient parents
2. Protectors of Allah’s child
3. Fate and Karmic connection to the child
4. Parental goals: Full inclusion in everyday life
5. Parental goals: Full inclusion in a multilingual world
(Pickthall, 1996) to gain a fuller and more personal under-
standing of the religious teachings and beliefs. In addition,
three scholars (two from the community and one from aca-
demia) knowledgeable in the teachings of the Qur’an read
and commented on selected original interview transcripts,
pointed out critical issues, and corrected misinterpretations.
This process, known as indefinite triangulation, is a stan-
dard part of ethnographic practice. It refers to the process of
collecting a wide variety of data and using these different
sources of evidence as checks against each other (Cicourel,
1974; Corsaro, 1985; Erickson, 1986; Gaskins, Miller, &
Corsaro, 1992). Finally, the three authors engaged in dis-
cussions of the interpretations (both through contesting and
supporting responses). Through this process evidence of
initial inferences were confirmed or disconfirmed, and
final interpretations were developed.
Findings
For the families in this study, Islam permeated daily life
and provided the primary framework within which they
understood the meaning of having a child with autism.
Their Islamic faith informed their acceptance that their
child had autism, their expectations for their sons, and their
own parenting behavior.
Beliefs About Having a Child With Autism
A key theme that emerged from the interviews and off-the-
cuff remarks was that parents felt blessed to be a family cho-
sen by Allah to raise “His special child.” Parents constantly
made reference to doing their best for their son who was
sent to them by Allah. They also stated that they “found God
in their lives,” which helped them acquire a fuller and
deeper understanding of having a child with a disability.
Parents believed that, before making a decision to give them
a child with a complex disability, Allah took into consider-
ation several factors: the parents’ moral character, loving
nature, and resilience; their ability to protect the child; and
their fate or Karmic connection to the child. Table 2 pro-
vides a summary of the themes.
Moral, loving, resilient parents. The six parents agreed that
love, hard work, piousness, and ability to nurture their sons
Jegatheesan et al.
in abundant ways were family characteristics considered
by Allah when he chose them to receive his special children.
Mr. Khan said, “I think Allah found that we have the capa-
bility to handle it. We have the strength to deal with it. Not
to be rude to him, I mean not to blame the child, but love
the child very much.” Parents also noted that Allah knew
that caring parents would not give up on his child but would
provide opportunities for the child to enhance his abilities.
Parents repeatedly said that they were determined to try
everything, to be understanding, and not to lose patience.
They said that they also taught cousins and siblings to be
patient and not complain about their relative with autism.
Another characteristic that parents often talked about
was their ability to get through tough times and move on.
Being resilient was defined by these parents as not abandon-
ing their child due to any kind of crisis at home and assidu-
ously pursuing their goals for their child. When parents
talked about being moral, they made reference to fulfilling
family responsibilities and refraining from bad habits. For
example, the Latif parents, who lived in impoverished con-
ditions and whose son’s condition was complicated by sei-
zures and severe behavior problems, repeatedly talked about
how one’s ability to “be a good person” and “not break
down” was the basis for Allah’s decision. All three fathers
in the study expressed the belief that Allah was testing them
spiritually to see if they passed the “test with flying colors”
or if they failed the test by “becoming immoral” and “tak-
ing on negative life ways,” such as becoming depressed or
developing addictions. Mr. Latif expressed this as follows:
This is a kind of test for us. And I am sure we will get
through this. But I must pass the test with total integ-
rity because I believe in Allah and have nothing else
besides Allah. I embrace what He gave me. This will
make me a better man, strong and I will do all that it
takes to be worthy of His child. So, you see, whatever
it is this test that I am put through I will try my best to
pass this test. I never say the “why.” I just think, okay
this is a kind of test and I have to prove myself. I will
try my best and stay on the right path. At this time
when my life is filled with challenges, I must be
strong, hopeful and conduct my life in accordance
with my religion.
Protectors of Allah’s child. Parents believed that Allah chose
them because he knew that they would protect the child and
not neglect or harm him. Parents said that that their children
with autism were pure and innocent and would not be able
to report to them if anything undesirable happened in school,
such as being bullied, mocked, or hurt. Protecting the child
was of such high priority that parents took extra steps to
ensure the children’s safety. For example, despite ill health,
Mrs. Latif drove her son to school because she feared for his
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5
safety on the bus. Mrs. Khan and Mrs. Yoosof often rode the
school bus with their children and dropped in unexpectedly
at school during lunch breaks to make sure that their children
were being treated well by peers and teachers. Each day
when Mr. Khan arrived home from work, he asked his son,
“Did anyone beat you today?,” “Did anyone say bad things
to you?,” “Was Mr. Terry nice to you today?”
Parents said that they told the other children in the family
that a disability was part of human diversity. Fathers made
reference to the holy text, pointing out that “in the words of
Allah, it is written that not every human being is the same.”
These differences were not to be perceived as “something
less” or “something more.” The fact that autism manifested
itself in different kinds of behaviors and ability did not
change the fundamental humanity of a person with autism.
Mrs. Khan taught her older son, Samir, age 11, that it was
his duty to take care of his younger brother Jalil when his
parents died and that Jalil must live with him if he was still
unmarried. Samir talked with the ethnographer about being
teased by other children in school because of his brother and
reported getting into fights to protect him. In explaining his
behavior he said:
He (Jalil) is still a human being. So what if it’s autism?
That does not change anything. He is smart, he loves
us, he is happy and he gets mad like me or her (points
to aunt). Sometimes he annoys me, REALLY annoys
me. But he is still a person, and if I help him to help
himself, he will be better than me. Then nobody will
know he is autistic.
Fate and Karmic connection to the child. The Khans and
Latifs, who were Sunni Muslim, believed in fate and destiny
and therefore believed in “never questioning, only accepting”
of what was given to them. Mrs. Latif stated, “I never thought
that having a son with autism is an unfortunate fate. I don’t
think that way about having a special child. I believe that I am
part of something that was decided for me before I was born.”
By contrast, the Yoosof family, who were Shiites, believed
in reincarnation (see Dwairy, 2006, and Stevenson, 1980,
1987, for a discussion of Shiite beliefs in reincarnation and
the transmigration of souls). Mrs. Yoosof’s understanding of
why she had a child with a disability found expression in the
doctrine of Karma, cycle of rebirths and the salvation of the
soul. She stated that she and her family members believed
that because of his autism, her son was on his “last rebirth.”
She explained that children and people with this condition
(autism) do not commit any intentional sins and therefore
will attain salvation. She believed that she was reborn to be
the mother of her son because of unfinished matters in her
past life. Her relationship with her son was “special,” she
said, “because in our past life we had some relationship
together. I don’t know what, but we owed each other—me
6 Focus on Autism and Other Developmental Disabilities XX(X)
and Raqib.” Her belief was supported by her mother-in-law
who added that “relations are a result of [a] previous life.”
Mrs. Yoosof summed up by saying, “and if we are even and
equal [in this life] then we both need not come back together
again. I don’t owe him and he does not owe me. We are
done!” Mrs. Yoosof repeatedly emphasized the seriousness
of her role. The fact that she was born to be the mother for
her son on his last journey on earth and to help him attain
the status of salvation as payback for her previous life’s
dues meant she could not “give up” or harbor “less hopes”
for him without trying absolutely everything.
Given their beliefs that their child with autism was a gift
from Allah, these parents objected to professionals’ emphasis
on their child’s deficits. They repeatedly observed—starting
from the first point of contact through assessment, evalua-
tion, and planning of educational outcomes—that profes-
sionals paid a lot of attention to what the child lacked and not
who the child was. They said that they found it very disturb-
ing to provide professionals with reports of what their chil-
dren were not able to accomplish. According to Mrs. Khan,
I tell myself all the time to not pay so much attention
to autism and decide his life from that point. It is not
right. If we say “He is autistic so he cannot do this,” or
“He is autistic that’s why he must live like this,” then
it is not a good way for him and for me to think like
this. Let it be, that autism! Allah will take care of that.
But we first must do our duty, we will teach our son.
Fathers expressed their unhappiness, refusing to partici-
pate in negative discourse with professionals and insisting on
the need to focus on their children’s abilities and normaliza-
tion in their community. Mrs. Khan recounted an incident
in front of her husband. She explained how during a talk on
autism given by professionals at a therapy center, Mr. Khan
became very frustrated and argued with the speakers when told
that parents need to change their expectations and that their
children will have speech difficulties and problems with
social interaction. According to Mrs. Khan, her husband
asked the professionals, “How you can say for sure he cannot
do these things? Why do you say from the beginning that we
have to change our expectations?” He also became very upset
when professionals stated that children with autism would not
be able to lead normal lives. At this point, Mr. Khan said
firmly, “We think our son can be married and have a family
like a normal person. We believe he can live a normal life,
have children, be a father and a husband.” Parents were con-
tinually searching for schools and therapy services that did
not reduce their children to the sum of their problems.
Parental Goals: Full Inclusion in Everyday Life
Mr. Khan’s emphasis on normality was echoed by the other
parents both in interviews and in off-the-cuff remarks during
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the observation sessions (e.g., “We treat him normal, like any
normal Muslim boy”). Because Allah had entrusted them
with a special child, these families felt strongly that they
must have faith in Allah and do their duty to help the child.
Mrs. Kahn said, “If we give up, then we are giving up on
Allah and His child. We must believe in the child, believe in
Allah.” From their perspective, the way to promote develop-
ment was to immerse the child in every aspect of life, as
interpreted in the Qur’an. Accordingly, parents believed that
their children with autism should be included in the ordinary
social, and religious activities at home, in the mosque, and
in the community.
The fact that the child had autism was not invoked as
grounds for excluding him from activities that might be chal-
lenging. Parents firmly believed that participation in ordi-
nary social life was the means by which children developed
and overcame limitations. They were not too concerned
about whether the child attained various developmental mile-
stones “on time,” trusting that the child would gradually
progress as a result of his sustained participation in the social
world. The child was expected to adjust as best he could,
with some accommodations made by parents and other care-
givers. For example, the Khan and Yoosof parents expected
their children to participate in all family functions, such as
weddings, religious ceremonies, and cultural get-togethers
that typically involved a large number of people. The child
was allowed to slip out to quiet areas for short periods of time
before being coaxed into rejoining the rest of the family.
It was very difficult for the Latif family to integrate their
son into ordinary social life because of his severe behavior
problems. Yet they too were committed to the goal of
immersion. Mr. Latif frequently expressed sentiments that
“it is important to treat my son no differently from another
child who is normal,” “this is the purpose that God has
brought me into the world for, to serve this child,” and
“I will do all that it takes to be worthy of His child.” Mr. and
Mrs. Latif noticed and remarked on the progress, however
minimal, that their son made. Mr. Latif noticed, for exam-
ple, that Aziz had become less disruptive in the mosque as
his visits to the mosque increased. Aziz had also learned
what the Qur’an looks like and would bring it as soon as his
father began to lay the mat for prayers in their home. “He
knows that my Qur’an is in my handbag and it is green
color,” said Mrs. Latif. “He will open my bag, take the
Qur’an out, and come running to his father to give it to him.
He sees it at home and in the mosque, so he knows it’s time
for prayer.” Like the other parents, Mr. Latif acknowledged
the difficulties associated with autism, stating, “Yes, my son
has problems . . . but we must help him move, not stay there
and complain . . .” He explained,
Every kid is not born with the same potential. That is
God’s gift already. It’s a different potential for each
one. But it doesn’t mean that we should accept that
Jegatheesan et al.
and say, “Okay God gave me this much potential,”
and we should not do anything. We should always
work very hard and try to improve. I mean, everyone
has different potential. Aziz has different potential.
That’s what religion also dictates. That you should
try yourself to improve whatever God gave you
potential, so that is what we are trying for Aziz.
Parental Goals: Full Inclusion
in a Multilingual World
An important aspect of full inclusion was to include the child
with autism into the complex multilingual environment of
home, community, and mosque. Or to put this somewhat dif-
ferently, these families believed that the critically important
goal of full inclusion could not be accomplished without
immersion in multiple languages. Families observed a rough
division of labor among languages: Native languages were
for family and community contexts, Arabic for prayer and
religious activities, and English for institutions of American
society, such as school, workplace, and therapy. Parents
believed, for example, that their child with autism, like all
other children, should interact with elders in the family who
were primarily non-English speaking. Large family gather-
ings of 20 or more people as well as community activities,
such as celebrations of independence (of their native country)
were common events for the Khan and Yoosof families, and
these tended to be conducted in the native languages. In these
families, the extended family provided more opportunities for
varied interactions and inclusion of their sons with autism;
the Latif family, who did not have family members nearby,
was afforded fewer such opportunities.
Informal daily interactions among family members and the
focal children consisted of frequent code-switching across
multiple languages in the home setting. Raqib Yoosof experi-
enced code-switching among five languages (Hindi, Gujarati,
Kachi, Arabic, and English). During one-on-one interactions
with the children, communication differed between mothers
and fathers in all three families. For example, Mrs. Khan
frequently used English first and then Bangla to reinforce
her earlier statements. Mrs. Yoosof occasionally used Hindi
or Urdu in addition to English, whereas Mrs. Latif rarely
used English to communicate with her son, except when
she helped him with his schoolwork. Mrs. Latif’s primary
language of communication with her son was Urdu. How-
ever, in all three households, fathers, who had the most
exposure to American society, tended to use English to
communicate with their sons. Prayer and other religious
activities represented a notable exception.
Indeed, the issue of language was most important in the
religious domain. Parents believed that every child should
be taught to pray because God hears the prayers of children
first, and because praying involves one-on-one communi-
cation with Allah, during which the child can ask directly
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7
for blessings and forgiveness. For example, Mrs. Yoosof
explained that it is critically important for her son to learn to
pray for forgiveness and achieve salvation. She said that just
as adults “pray for their sins and for thanks,” her son, too,
through prayers “is thanking and also asking for forgiveness,
so that he can be free of all sins.” However, her son’s pur-
pose for praying for forgiveness was totally different. Even
though Raqib was believed to be innocent and free of all
intentional sins, he still had to admit to and ask for forgive-
ness for the unintentional things that he does that cause hurt
and harm (e.g., walking and accidently stamping on an ant).
Mrs. Khan talked at length about personal prayers (Du’as)
that she and her older son composed for Jalil to recite. (This
category of prayer, meant for non-Arabic speaking natives,
could be said in any language.) One such prayer created for
Jalil was, “Allah please forgive me and make me a good
boy.” In others, Jalil was taught to ask for a cure and to be
able to speak well. Mrs. Khan said that such prayers allowed
her son to communicate directly with God, and express his
inner thoughts and feelings.
Although Du’as were important, the highest goal to
which parents aspired was that their sons would learn to
pray the daily ritual prayers in Arabic because this is what it
means to be Muslim. Mrs. Khan said that she began to teach
these prayers (Salah) when her son was barely verbal and
that her husband included his son in the daily ritual prayer.
Mrs. Yoosof explained why praying was essential for her
son, even though he did not yet understand the meaning of
the Arabic words.
Praying will surely help him, for his strength, for his
spiritual soul. Like for physical body we eat food right.
To keep us going or getting energy from the food. For
our soul, we need energy too. So, that’s how you can
get the energy. That’s the food.
Mr. and Mrs. Latif struggled to figure out how to teach
their son to pray in Arabic. Mr. Latif said that he tried to
teach him “by action.”
He comes and sits down in front of me. This is what
he is doing right now. He does not understand that he
should move along. So, you see, he is not actually fol-
lowing me. He should come to the point when he
stands beside me. If I bend down when I say my
prayers, then he should bend down as well. It will be
very easy if he understands this much. That is, follow
the instructions, calm down a little bit, and copy what-
ever I say and do. Then, it will not be difficult to teach
him to say the prayers.
Mr. Latif refers here to the postures involved in men’s
daily ritual prayers (moving, standing, bending). He also
said that he takes his son to the mosque to pray and that
8 Focus on Autism and Other Developmental Disabilities XX(X)
people are not offended when Aziz wanders about, as they
know that he has a disability. Despite Mr. Latif’s hopes for
his son, he recognized that his expectations are very high
for someone with such a severe disability. He said, “We
expect normal kids to learn the prayers and recite the Qur’an,
and it is difficult. But, for him, it is having higher expecta-
tions, if we look at his ability. . . . If he learns it, it is very
good.”
Discussion
Parental Beliefs
Results indicate that religion was the primary frame within
which parents understood the meaning of having a child
with autism. They regarded their children as gifts from Allah
and felt blessed that God chose them to be special parents.
These positive interpretations echo those reported for par-
ents from other religious faiths (e.g., Gabel, 2004; Skinner
et al., 1999, 2001). Fathers in this study also believed that
their child represented a test of their own spiritual and moral
qualities and that Allah would judge their success or fail-
ure. And like their Christian and Jewish counterparts, these
Muslim parents relied on their religious faith to help them
adjust to and cope with the birth of a child with a disability
(Coulthard & Fitzgerald, 1999; Rogers-Dulan, 1998; Shaked,
2005; Skinner et al., 1999, 2000). Their religion urged them
to maintain a positive attitude and to do everything they
could to help their child. This is consistent with the discus-
sion of Islam and disability provided by Morad, Nasri, and
Merrick (2001, p. 66):
. . . The society according to Islam is obliged to assess,
assist and respect the person with intellectual disabil-
ity and give the person an equal life chance. . . . In
Islamic tradition, it has been stated that the best ther-
apy is the one directed to enhance the health of the
person, his psyche and spirit, in order for him to fight
illness. His environment should be beautiful, filled
with music and people he likes.
The concept of reincarnation and Karma is held with
variations by members of many Shiite Muslim groups such
as the Ismailis, Druses of Lebanon and Syria, and the Alawi-
tes. Despite similarities in beliefs about the doctrine of
Karma and reincarnation among the Shia’ parents in this
study and those in Gabel’s (2004) study of Indian immi-
grants, it is interesting that even within this religious belief
parents expressed differing views of why they had a child
with a disability and their feelings in raising such a child.
Parents in Gabel’s study reported that they were paying for
past sins by raising a child with a disability and they
believed that one has to suffer through disability without
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complaint. On the other hand, parents in the current study
had a more positive interpretation. They believed that they
were chosen because they were moral and loving parents in
their present life and as a result were perceived by Allah as
being ideal parents to raise His special child. In addition, the
Shiite family believed that both mother and son were reborn
because of some “unfinished business” in their past lives.
This mother also believed that she was reborn because she
was ordained with an important religious mission which
was to help her son (Allah’s child) attain salvation. None of
the parents in the three families in this study reported feel-
ings of “suffering” in having a child with a disability. They
felt they should not complain about difficulties they have
encountered in raising their children because it was per-
ceived as complaining about the will of Allah. Interestingly,
children with autism in ultra orthodox Jewish families in a
sect in Israel (Shaked, 2004) also were considered to be
very high spiritual beings by their mothers because of the
transmigration of their souls.
The parents’ religious perspectives also stressed full
inclusion in social life as the means by which children with
autism develop and overcome their limitations. This meant
full inclusion in the large configurations of persons, includ-
ing the extended family that is so important to many South
Asian families (Jacob, 2004). Importantly, it also meant
inclusion in a complex multilingual world, involving native
languages, English, and Arabic. The parents’ commitment
to multilingualism stemmed from a variety of factors,
including their belief that children should interact with
their grandparents who spoke only the native languages
and their recognition that English is necessary for success
in American society. Most important, however, was their
desire for their sons to learn to pray in Arabic, a touchstone
of Muslim identity. These beliefs were shared not only by
the six parents in this study but also by teachers in the
mosque and other community members (Jegatheesan,
2005). However, there also was variation among the fami-
lies, owing to their allegiance to different branches of
Islam and to variations in the severity of symptoms that
their sons displayed. This variation among the families is
very important and future researchers need to pay atten-
tion to these and other dimensions of intragroup variation,
since the small sample size in the current study limits the
generalizability of the findings. It is hoped that these
findings will provide a culturally valid starting point for
future studies of Muslim immigrant families in other
communities.
Implications for Practice
Current recommended practices in special education encour-
age professionals to recognize the critical influence that cul-
ture and language exert within the family and to individualize
Jegatheesan et al.
interventions to build upon these strengths and assets (Trivette
& Dunst, 2005; Turnbull et al., 2007). Unfortunately, little
evidence of such practices was found in the three families
who participated in this study. In fact, it is striking how dif-
ferent the beliefs of the families are from those of most of the
Western professionals they encountered. The parents in the
study possessed a different perspective on the role of autism
in their lives and held a more positive vision for the future of
their sons. This led to unintended cultural clashes with many
of the service providers who assessed their child and pro-
vided therapies. The parents strongly objected to teachers’
and other professionals’ focus on the child’s limitations and
shortcomings. They viewed this approach as a rejection of
God’s will. An acknowledgement or understanding of the
family’s cultural conception of disability, as a sacred obliga-
tion, could have avoided misunderstandings around the goals
of assessment and therapy. Very likely providers and fami-
lies would have agreed on outcomes, such as supporting the
child’s continued growth and development. But they dis-
agreed on the starting point, the identification of goals, which
in these cases focused on addressing child deficits.
Another point of sharp contrast has to do with under-
standings of how to support the development of children
with autism. These parents believed that such children, like
all typically developing children, benefit most from immer-
sion in the complex life of family and community, with small
accommodations being made as needed. Parents often heard
from professionals that their children would progress and
learn best under very controlled conditions and were instructed
to “keep life simple,” “reduce interactions between multiple
people in the home,” and “stick with one language,
namely English, for all conversations to avoid confusing
the child.” However, these parents believed that to cocoon a
child in a quiet, secluded, or simplified world was not pos-
sible without undermining their religious values and their
core family commitments.
The idea that children should be included in the social
life of the group is not unique to South Asian immigrant
parents. In fact, Ochs and Schieffelin (1984) identified a
typology of cultural variation in patterns of language
socialization: “adapt the situation to the child,” as exempli-
fied by simplified, dyadic child-directed communication
favored by middle-class European Americans, and “adapt
the child to the situation,” as exemplified by the multiparty
communication favored by Samoan and Kaluli caregivers.
The South Asian Muslim immigrant parents’ emphasis on
full inclusion places them toward the “adapt the child to the
situation” side of this typology. Even so, when it comes to
prayer, these parents embrace a teaching model that involves
more active adaptation by caregivers. This underscores
Ochs’ (in press) point that there is often contextual varia-
tion along this continuum within cultural groups. Interpre-
tation of the findings in this study adds an interesting twist
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9
by showing that this continuum can be underpinned by reli-
gious ideologies.
One limitation of the current study is that it focuses
primarily on parental beliefs. This raises the question
regarding the influence of this constellation of beliefs in
helping children with autism develop in a positive manner.
Research in early intervention supports the pivotal role of
families in the development and implementation of home-
based interventions to ensure that practices associated with
the interventions are consistent with family values, beliefs,
and priorities for their child (Guralnick, 2008). Practices
that are consistent with family values are typically more
sustainable and are more likely to be shared with other
family members. The parent voices in this study clearly
indicate that they were not willing to support practices rec-
ommended by therapists that ran counter to their culture
(e.g., limiting their use of home languages) or religious
beliefs.
Most research in the United States on effective inter-
ventions for children with autism has focused on White
Euro-American families (Dyches, Wilder, Sudweeks,
Obiakor, & Algozzine, 2004). According to the medical/
psychiatric model, autism is a neurological impairment,
affecting communicative, social, cognitive, and emo-
tional functioning (Happe, 1995). Often this model car-
ries with it a strong focus on the child’s deficits (Molloy
& Vasil, 2002). This deficit perspective is reinforced by
the privileging of clinical settings in which the child is
diagnosed and treated (e.g., Rocha, Schreibman, & Stah-
mer, 2007). Many treatments used with individuals with
autism were first developed and evaluated in fairly con-
trolled clinical settings where interruptions and disrup-
tions could be minimized. The challenge in today’s society
is to expand these practices to everyday life and to iden-
tify other practices that are common in more diverse fam-
ilies that also may be equally effective. In this connection,
Ochs, Solomon, and Sterponi (2005) describe a model in
which they suggest that a rapid, rhythmic tempo and a
side-by-side participant framework would be more
effective in treating autism than a strategy based on didac-
tic, child-directed face-to-face interaction. This strategy
very much resembled the interactions with extended fam-
ily in the children’s homes.
The second challenge is to address the cultural knowl-
edge and competencies of professionals in the field of early
intervention and special education through professional
development, both preservice and inservice. The majority of
providers in early intervention and early childhood educa-
tion are female, White, and college educated. They differ on
many dimensions (e.g., culture, values, race, socioeconomic
status) from many of the young children and families whom
they serve. Clashes in culture around the definition of dis-
ability as well as approaches to diagnosis and intervention
10
are likely to continue until the profession becomes more
culturally diverse and the preparation of professionals includes
greater focus on diversity both within and across cultures.
Conclusions
Researchers must move beyond generalizations of a people,
based on religion, languages and geographic region of the
world (Lynch & Hanson, 2004). This study is a critical step
in that direction. At the most basic level, it is hoped that the
findings of this study will enrich the multicultural under-
standing of teachers, clinicians, and other professionals who
work with children with autism by providing a window into
the beliefs and reasoning of three South Asian Muslim
immigrant families. These parents interpret the challenge
of raising a child with autism through a particular religious
and cultural lens that varies somewhat across the three fami-
lies. Conclusions that can be drawn from these findings
reveal that this lens is different from the lens used by most
majority professionals. Awareness of and respect for these
differences will help to improve communication with these
families and reduce the likelihood of families becoming
defensive, distrusting, or dismissive of professionals and the
therapeutic support that they may offer.
Ultimately, the relationship between professionals and
parents has a tremendous impact on families, for good or ill.
Parents in this study attested to that. One mother in the study
talked endlessly about an European American developmen-
tal therapist, who was “irreplaceable.” The developmental
therapist made weekly home visits and worked with her son
on developmental skills that he needed help in (e.g., fine
motor, social, cognitive, self-help). She said that her family
treasured the therapist’s personal and professional qualities:
“caring and patient,” “talked about her family,” “interacted
well with all our family members and got them involved,”
and sometimes made casual phone calls to check on the
mother. Apparently, this therapist’s warmth, support, and
respect for family provided a foundation on which a trust-
ing relationship could be built.
This contrasted with the parents’ frustration with other
professionals whose negative discourse created barriers to
and breakdowns in home–school relationships. Perhaps the
findings presented here will prompt professionals to appre-
ciate the ways in which these parents supported their chil-
dren’s development as well as the reasons behind parents’
reluctance to focus on the negative aspects of their chil-
dren’s condition. Muslim parents believed that it was mor-
ally wrong to compare their child with another or to
complain about the disability. When practitioners take a
more positive attitude, it enables parents to “think clearly,”
as one mother put it.
It is important for practitioners and clinicians to learn
about and understand the beliefs and values of families
before recommending specific interventions or teaching
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Focus on Autism and Other Developmental Disabilities XX(X)
strategies. Families will adapt practices to their own circum-
stances and will sustain only those that are consistent with
their goals and beliefs. If the values underlying the practices
are inconsistent with the families, then the practices will be
rejected as well as other advice and services. This was evi-
dent time and over again in lives of the families in this study.
Declaration of Conflicting Interests
The author(s) declared no conflicts of interest with respect to the
authorship and/or publication of this article.
Funding
This study was partially supported by the Graduate School and the
Center on Democracy in a Multiracial Society, University of Illi-
nois at Urbana-Champaign.
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Bios
Brinda Jegatheesan, PhD, is assistant professor in educational
psychology at the University of Washington, Seattle, USA. She
is interested in how multilingual children with autism use lan-
guage and culture as they learn to become participants in their
12
everyday family and community life. Her work relies primarily
on the ethnographic approach. Her research also addresses
ethnomedical beliefs and practices in the diagnosis and treat-
ment of children with developmental disabilities and their
implications for medical and allied health services for families.
Peggy J. Miller, PhD, is professor of communication and professor
of psychology at the University of Illinois at Urbana-Champaign,
USA. She is an expert on narrative as a medium of socialization in
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Focus on Autism and Other Developmental Disabilities XX(X)
the early years of life and has done comparative research across
cultures (Taiwanese and Euro American) and social classes (working-
class and middle-class in the United States).
Susan A. Fowler, PhD, is a professor of special education at the
University of Illinois at Urbana-Champaign. Her current interests
include the design and delivery of early intervention services for
culturally and linguistically diverse families with young children
with disabilities.