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The Influence of Religiosity on Well-Being and Acceptance in Parents of

Children with Autism Spectrum Disorder
Stacy E. Whitea
a
Anderson University, Anderson, Indiana, USA

To cite this Article White, Stacy E.(2009) 'The Influence of Religiosity on Well-Being and Acceptance in Parents of

Children with Autism Spectrum Disorder', Journal of Religion, Disability & Health, 13: 2, 104 113
To link to this Article: DOI: 10.1080/15228960802581503
URL: http://dx.doi.org/10.1080/15228960802581503

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Journal of Religion, Disability & Health, 13:104113, 2009

Copyright Taylor & Francis Group, LLC
ISSN: 1522-8967 print / 1522-9122 online
DOI: 10.1080/15228960802581503

The Influence of Religiosity on Well-Being

and Acceptance in Parents of Children
with Autism Spectrum Disorder
STACY E. WHITE

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Anderson University, Anderson, Indiana, USA

This study was designed to investigate religiosity, parental wellbeing, stressors in raising a child with autism, and acceptance
of the disorder. Previous research states that religiosity can buffer
the effects of stressors on well-being (Friedrich et al., 1988), and
provide support and peace of mind (Tarakeshwar and Pargament,
2001). Parents of children with autism (n = 177) participated
by completing an Internet-based questionnaire. Results revealed
correlations between most of the variables, and the association
between stress and well-being was stronger for parents with lower
religiosity. Implications for parents and religious organizations and
directions for future research are discussed.
KEYWORDS religion, spirituality, autism, research, parents of disabled children, stress, Internet
The task of raising a child with an autism spectrum disorder presents parents
with significant challenges, stemming not only from the childs problematic
behaviors and deficits characteristic of the disorder, but also due to the
perplexing nature of autism and the controversy surrounding its cause and
most effective treatments. It is not surprising, therefore, that studies of parents
of children with autism have consistently found that these parents experience
higher levels of stress, depression, and anxiety than parents of both typically
developing children and children with non-spectrum diagnoses (i.e., Bouma
and Schweitzer, 1990; Olsson and Hwang, 2001; Sanders and Morgan, 1997;
Sharpley, Bitsika, and Efremidis, 1997).
Acknowledgments: The author wishes to thank the Psychology Department faculty at
Anderson University and Dr. Yona Lunsky of CAMH for their continued support.
Address correspondence to Stacy White, Centre for Addiction & Mental Health, 501
Queen Street West, Toronto, Ontario, Canada M5V 2B4. (E-mail: stacy white@camh.net)
104

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Influence of Religiosity on Parents of Children with Autism Spectrum Disorder

105

Parenting stress may arise from several sources. While some stressors
may be specifically centered on the childs impairments, others may be more
strongly related to the parents own experiences or the functioning of the
entire family. Some of the most stressful factors involved in raising child with
autism may be the permanent and pervasive nature of the disability, inadequate resources for social support, or the lack of acceptance from family and
peers faced by parents dealing with the disorder. One of the most common
sources of stress for parents has been found to lie in the childs behavioral
problems (Quine and Pahl, 1985; Sharpley, Bitsika, and Efremidis, 1997).
A study of mothers of children with pervasive developmental disorder by
Tomanik et al. (2004) lends further support to the association between child
behaviors and parental stress; both adaptive and maladaptive child behaviors
accounted for significant variance in stress levels reported by parents in their
study. Child behavior problems can also have an impact on overall parental
well-being (Hastings, 2002). A multidimensional construct, well-being encompasses numerous domains of personal functioning that are indicative
of ones physical and mental condition, such as feelings of depression and
anxiety, contentment, general health, and overall satisfaction with life.
In an effort to enhance well-being, it is vital to identify resources that
may assist parents of children with autism to cope with the difficulties they
may face. In addition to social support offered by family, peers and parent training programs, religion may also serve as an important resource
(Tarakeshwar and Pargament, 2001). When considered in terms of ones religious involvement and religious beliefs, these two factors may play very
distinct roles when dealing with adverse life situations. Integration into a
religious community may give persons coping with stressful events a sense
of belonging and a strong network of social support, as well as practical
assistance in meeting day-to-day challenges. Furthermore, a schema of religious beliefs may equip parents with an alternate framework for interpreting their situation and finding meaning in seemingly adverse circumstances
(Haworth et al., 1996; McIntosh et al., 1993; Tarakeshwar and Pargament,
2001). Religiosity has been found to influence well-being by acting as a
buffer against some stressors, including child behavior problems (Friedrich
et al., 1988). In a study of parents of children with developmental disabilities, Haworth, Hill and Glidden (1996) found that some parents who used
religion as a coping resource found it useful in providing a reason for the
childs disability, while others felt that their children gave their lives purpose.
Some also cited prayer as a significant source of strength and peace of mind.
Further, Tarakeshwar and Pargament (2001) found that parents of children
with autism who relied on positive religious coping strategies (e.g., seeking
support from the church, and viewing the childs disability as Gods will or
an opportunity for spiritual growth) reported more positive changes in their
social relationships and coping skills.
Conversely, research findings have also highlighted many negative aspects of religion for parents of children with disabilities. For example,

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S. E. White

Coulthard and Fitzgerald (1999) found that parents felt that having a child
with a disability had decreased their participation in church activities and
had distanced them from God and their religion. For many parents, religious
involvement may be a source of stress when leaders and congregations offer
limited assistance to the family, and do not readily make the accommodations necessary to include the child in religious activities. Also, having a
child with a disability may cause parents to question their religious beliefs,
and can elicit feelings of anger toward God or lead parents to believe that
their child is a punishment for some wrongdoing. Thus, religion may be
both a supportive resource and a source of distress for parents dealing with
the challenges of autism (Coulthard and Fitzgerald, 1999; Tarakeshwar and
Pargament, 2001). Also, as noted by Coulthard and Fitzgerald, parents may
feel supported to a greater extent by their personal religious beliefs than by
their involvement in religious organizations. This finding suggests that each
of these aspects of religiosity may impact parents in very distinct ways.
One relatively uninvestigated dimension of parent-child relations in families of children with autism is acceptance of the childs disorder. Several
factors may play a role in the degree to which parents are accepting of
their children. For example, a study of the influence of diagnostic labeling
on parental perceptions of children with behavior disorders revealed that
parents who had received an official label for their childs condition had
more accepting views of their children than parents who were not given a
label (Fernald and Gettys, 1980). Previous research suggests that a religious
belief system may assist parents in altering their perception of challenging
life events, helping them to find meaning in their situation. It may follow,
therefore, that once parents of children with autism have found significance
in their childs disorder, they may view their situation more positively and
more readily accept the child. An investigation of acceptance in relation to
religious beliefs and involvement may further help in our understanding of
the mechanisms that influence parental acceptance in general.
The purpose of the present study was to investigate how religiosity in
parents of children with an autism spectrum disorder and stress involved in
raising their children are associated with parental well-being and acceptance
of the childs disorder. Of particular interest were two aspects of religiosity
(religious involvement and religious beliefs) and how they are associated
with well-being and acceptance. Also of interest was the relationship between stress and well-being for parents with differing levels of religiosity.
Based on the findings of previous studies, the following hypotheses were
derived. First, it was hypothesized that religiosity would be positively correlated with parental well-being. Second, it was hypothesized that religiosity
would be positively correlated with acceptance of the childs disorder. It
was further hypothesized that a negative correlation would be found between stress and well-being. Finally, it was hypothesized that the negative
correlation between stress and well-being would be stronger (more negative)
for parents with low religiosity than for parents with high religiosity.

Influence of Religiosity on Parents of Children with Autism Spectrum Disorder

107

METHOD

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Participants
Participants in the study consisted of parents of children diagnosed with an
autism spectrum disorder, and were recruited through chapters of the Autism
Society of America in Indiana, Ohio, Kentucky, and Illinois. Two respondents
who did not reside in the same household as their children with autism were
excluded from analyses, yielding a final sample of 177 participants. Of all
participants, 87% were mothers, and parents ranged in age from 23 to 61
years (mean = 39 years). Most parents were married (83%) and reported
having a religious affiliation (81%); however, only 10% were members of
visible minority ethnic groups. The children of respondents ranged in age
from 2 to 31 years (mean = 9 years), and consisted mainly of males (89%).
Parents reported their children as having diagnoses covering the entire range
of the autism spectrum (63% autism, 18% Aspergers syndrome, 17% Pervasive Developmental Disorder (PDD)/Pervasive Developmental Disorder, Not
Otherwise Specified (PDD-NOS), 2% other). In addition, 41 parents (24%)
reported that their child had co-morbid, non-spectrum diagnoses, including attention deficit disorder (ADD)/attention deficit hyperactivity disorder
(ADHD), obsessive-compulsive disorder, epilepsy/seizure disorder, mental
retardation, Tourettes syndrome, and anxiety disorder. Having more than
one child with an autism spectrum diagnosis was reported by 32 parents
(18%); specifically, 29 parents had two children on the autism spectrum,
two parents had three children on the spectrum, and one parent had four
children on the spectrum.

Measures
Demographic information was collected using a brief demographics questionnaire. Parents responded to items pertaining to the child (age, gender,
and autism spectrum diagnosis), themselves (age, marital status, ethnicity,
religious affiliation) and the household (number of children living at home).
Religiosity was measured using two subscales of the Cross-Cultural
Dimensions of Religiosity Scale (DeJong et al., 1976). The Belief Dimension
Subscale consists of eight items that assess beliefs concerning God, immortality, prayer and scripture. The Religious Practice Dimension Subscale
measures church attendance, financial support, bible reading, and church
activity using five items. For each item on both subscales, parents were
asked to select the answer that most accurately described their personal
beliefs and behaviors. Items were each scored on a 5- to 7-point scale, with
a higher total score on each subscale representing a higher level of the
corresponding construct.
Stress inherent to raising a child with autism was assessed using the
Parental Stressor List, adapted from the Stressors of Parents of Children with

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S. E. White

Autism Checklist (Tarakeshwar and Pargament, 2001). The original checklist

was rationally derived to target child-centered stressors specific to raising a
child with autism. For the purpose of this study, items on the original list
were adapted to include both child- and parent-related stressors, based on
the selection of the most commonly cited stressors and those added to the list
by parents in Tarakeshwar and Pargaments (2001) study. The adapted scale
consists of 20 items, each of which was rated according to its perceived
level of severity on a 7-point Likert-type scale. A total stress score was
determined by adding the ratings given by parents to each of the stressors
listed.
Parental well-being was measured using the Psychological General WellBeing Index (PGWBI) (Dupuy, 1984). This multidimensional, 22-item scale
assesses subjective well-being across six affective states: anxiety, depressed
mood, sense of positive well-being, self-control, general health, and vitality.
Each item is rated using a 6-point scale. An overall well-being score was
determined by calculating the sum of the scores on each subscale of the
PGWBI, with a higher score reflecting a higher level of well-being. The
author of this scale reports a test-retest correlation coefficient of 0.81 and
Cronbachs alpha of 0.94, indicating high levels of reliability and internal
consistency.
As acceptance in parents of children with autism is a relatively unexamined construct, the Autism Acceptance Scale was developed in order
to assess both feelings of acceptance and non-acceptance of the child and
his/her diagnosis. Based on an adapted version of the Parental Attitude Research Instrument used by Zuk et al. (1961), the Autism Acceptance Scale
consists of seven statements: three items to measure acceptance and four targeted at non-acceptance. Parents indicated the degree to which they agreed
or disagreed with each statement using a 5-point scale (1 = strongly agree to
5 = strongly disagree). All acceptance items were reverse scored, such that
a higher total score is indicative of a higher level of acceptance.
Following the completion of the four measures, parents were asked
in an open-ended section if they had any additional comments about their
experience raising a child with an autism spectrum disorder.

Procedure
Contact persons for Autism Society of America chapters in Indiana, Ohio,
and Illinois were contacted with information about the study via email or in
person. They were provided with an Internet link leading to the online questionnaire containing the measures used in the study, which was passed on
to members of each support group chapter. The measures were presented in
the following fixed order: demographics, the PGWBI, the Parental Stressors
List, Cross-Cultural Dimensions of Religiosity, and the Autism Acceptance

Influence of Religiosity on Parents of Children with Autism Spectrum Disorder

109

Scale. This was followed by the open-ended section, in which parents were
asked to share any further comments on their experience raising a child with
autism. A debriefing section on the final page of the questionnaire provided
parents with resources for locating a counselor in the event that they experienced emotional distress during the completion of the study materials. The
entire questionnaire required approximately 1015 minutes to complete.

RESULTS

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Data Analysis Plan

To test the first three hypotheses, Pearsons Correlation Coefficients were calculated to determine whether there was a significant relationship between:
1) religiosity and parental well-being, 2) religiosity and acceptance, and 3)
stress and well-being scores. For the fourth hypothesis, high and low religiosity subgroups were first selected from the sample. To select groups
of approximately equal sizes, representing distinct levels of religiosity, the
following procedure was used. First, the religiosity scores of all participants
who completed this section of the questionnaire (n = 149) were rank ordered
from lowest to highest. The scores were then divided into four approximately
equal groups. Participants whose scores fell within the lowest fourth composed the low religiosity group (n = 42), and those in the uppermost
fourth were included in the high religiosity group (n = 37). Correlation coefficients for the relationship between stress and well-being were calculated
for each of these groups, and using Fishers Z transformations and a z-test
of significance, the coefficients for each group were compared.

Quantitative Findings
As hypothesized, religiosity was found to be positively correlated with
both well-being (r = .166) and acceptance of the childs disorder (r =
.203). Though these correlations were mild, both were statistically significant
(p <.05 for both comparisons). Also as expected, there was a moderate,
negative relationship between stress and well-being (r = .530, p = .000).
(It is important to note, however, that these results must be interpreted with
caution. Each correlation was analyzed independently, and did not use an
experiment-wide error rate, as only 3 of the 6 possible correlations were of
interest for the purpose of this study. Had an experiment-wide error rate
been used, only the relationship between stress and well-being would have
been found to be statistically significant.)
Analyses for the fourth hypothesis revealed significant correlations between stress and well-being for parents with high religiosity (r = .340, p =
.039), as well as for those with low religiosity (r = .737, p = .000). When
compared using a z-test of significance, there was a significant difference

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S. E. White

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FIGURE 1 Stresswell-being correlations for parents with high and low religiosity.

between these correlations (p = .012). Specifically, high stress levels were

more strongly associated with lower levels of well-being in parents with low
religiosity than in those with high religiosity (Figure 1).

Qualitative Findings
In the final section of the questionnaire, parents were asked to share any
additional comments on their experience raising a child with an autism
spectrum disorder. Parents responses highlighted several pertinent themes,
many of which were directly linked to the variables examined in this study
as well as in previous research. Many parents cited their religious faith as a
source of strength needed to raise their children. One mother commented,
[. . .] with God, we will beat this and be a functioning, productive, and
influential family. Many parents also spoke of their ability to find meaning
in their childs disorder and to accept their role as caregiver of a child with
autism. On several occasions, parents referred to their children as blessings
or gifts from God. One mother poignantly stated, Through this child, God
has shown me Himselfhow He can work in our lives and how He loves
us. I am grateful to God for my sons autism if only for this. Another said,
A thought that gives me strength is this: God has enough confidence in me
that he chose me to be the mother of my son [. . .]. Why should I have any
doubt about my ability to take care of my special child?
Conversely, parents also spoke of the challenges they face when trying
to integrate their children into religious activities, as captured in this fathers
words: Church services can be very difficult for a child with ASD [. . .] It
can be difficult to locate a parish which can understand the unique needs
of [our] family. Of particular concern were the challenges arising from the
often-disruptive nature of their childs behaviors, which one mother cited

Influence of Religiosity on Parents of Children with Autism Spectrum Disorder

111

as the primary reason her family does not attend church. Finally, one parent commented on the change in her religious perspective following her
childs diagnosis: I think my faith in my religion [. . .] was much stronger
before the diagnosis. Whether that initial faith was misguided originally, or
whether I have just grown so bitter and see things much differently now, I
still havent decided. This mothers uncertainty about the cause of her diminished religious faith highlights the complex nature of the coping process
and adjustment to life after receiving an autism diagnosis, even in regard to
ones religious convictions.

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DISCUSSION
As hypothesized, religiosity was found to be significantly correlated with
well-being and acceptance. Thus, parents who more strongly endorsed having religious beliefs and who were more involved in religious organizations
had greater well-being and were more accepting of their childs disorder.
In addition, a relationship was also found between stress and well-being,
and this relationship was significantly more negative for parents with low
religiosity than for those with high religiosity. Therefore, stress involved in
raising a child with autism had a more negative impact on well-being in
parents with low religiosity than in parents with high religiosity. Friedrich
et al. (1988) suggest that involvement in religious activities can increase the
likelihood of receiving social support, and this, in turn, has been found to
moderate the impact of stress among parents of children on the autism spectrum (Dunn et al., 2001). Although these findings do not directly imply that
all parents of children with autism should seek to join a religious community,
they do suggest that parents with such an affiliation may find in their faith
communities a viable source of support, which can serve to foster well-being
and acceptance, and buffer the impact of stress on well-being.
The equivocal nature of comments made by parents in response to
the open-ended question reflects both the positive and negative aspects of
religious beliefs and involvement for families with special needs, as found
in previous research (e.g., Tarakeshwar and Pargament, 2001). It seems,
therefore, that while religious organizations hold potential as possible
sources of support for parents, there remain a number of barriers that render
involvement in these communities particularly challenging. In order to eliminate these obstacles, a variety of measures can be employed to facilitate the
inclusion of parents and their children with autism. For example, children
can be paired with a peer or adult helper during activities, to help the child
navigate through complex tasks by guiding him/her through each step. Also,
as children with autism learn best through the use of concrete examples,
teachers can incorporate visual tools into lessons to help teach theoretical
religious principles. Finally, given sufficient demand within the community,

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S. E. White

congregations can create special programs specifically designed to address

the needs of children with special needs and their families (Schworm,
2005). In addition, it is important to note that a perspective of openness
and acceptance among members of the congregation and its leadership is
fundamental to the accommodation of members with diverse needs.

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Limitations of Present Study and Future Research

One limitation of the present study was that the diagnoses of children were
reported by parents and not confirmed through the use of a standardized
diagnostic assessment. Also, the vast majority of the sample consisted of
married Caucasian women, and thus, parents of various ethnic backgrounds
and marital statuses, as well as fathers, were not well represented. This may
have been due to the methods of participant recruitment and data collection
used, which limited the sample to parents with access to resources such as
the Internet and who were more likely to already be part of a network of
autism advocacy and support (the Autism Society of America). In order to
include a more representative sample for future studies, participants may be
solicited from a variety of sources, such as direct contact with developmental
clinics and early intervention service providers. Future research may also
incorporate an investigation of additional components of religiosity, as well
as a more diversified representation of religious faiths.

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