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Section 10
Religious
Coping in Families of Children with Autism
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We assessed the role of religion in the coping of families of
children with autism. Forty-five parents completed the Brief RCOPE; identified
stressors of autism; and completed measures of psychological adjustment (depression
and anxiety), stress-related growth, and religious outcome. A subsample (n
= 21) of parents was interviewed about their use of religious coping. Religious
coping accounted for unique variance in measures of adjustment. Positive
religious coping was associated with better religious outcome (e.g., changes
in closeness to God/church and spiritual growth) and greater stress-related
growth, whereas negative religious coping was associated with greater depressive
affect and lower religious outcome. Interviews identified other ways that
religion affected the coping process of these families beyond those already
established in existing measures. These results will be useful to professionals
working with families of children with autism and in designing interventions
to meet the needs of parents for whom religion plays an important role.
Autism, first identified by Leo Kanner (1943), is a pervasive developmental
disorder characterized by qualitative impairments in reciprocal social interaction
and communication and by restricted, repetitive, and stereotyped patterns of
behavior, interests, or activity (American Psychiatric Association, Diagnostic
and Statistical Manual of Mental Disorders [4th ed.; DSM-IV], 1994). The intellectual
functioning of nearly 75% of autistic children falls in the mentally retarded
range (Frith, 1989). In most studies, the incidence of autism appears to be
around 4 to 10 autistic children in every 10,000 births (Happe, 1994).
The child with autism typically requires vast amounts of parental time and
energy. This drain of resources can affect the marital relationship and the
functioning of individual family members (Rodrigue, Morgan, & Geffken,
1990). How well family members adjust to having a child with autism in their
home may depend on the ways they cope with the stress engendered by raising
such a child. Research suggests that the effectiveness of coping depends on
the particular coping strategies used by the parents, the resources available
within the family, and the availability of social support (Boyce, Behl, Mortensen, & Akers,
1991; Bristol, 1979, 1984). Another potentially important resource is religion.
A growing number of studies have indicated that religion offers a variety of
methods of coping that can help people during stressful times (see Pargament,
1997, for a review). However, those who have studied families of children with
disabilities, including families of children with autism, have largely neglected
the role of religion as a coping resource. The purpose of the current study
is to understand better the roles that religion plays in the coping process
of families with a child with autism.
Stressors Experienced by Families with Children with Autism
Several studies indicate that families of children with disabilities experience
more stressors and resultant distress than do similar families of typical
children and young adults (Boyce, et al., 1991; Kazak & Marvin, 1984;
Pahl & Quine, 1987). Furthermore, it appears that families of children
with autism report a greater number of stressors (e.g., parental depression
and anxiety, difficulties in daily management of the child, financial worries,
and concerns over adequate educational and professional resources) than those
with children with other disabilities (DeMyer & Goldberg, 1983; Gray,
1994; Holroyd & McArthur, 1976; O'Moore, 1978; Rodrigue et al., 1990).
However, not all family members appraise the stressors of raising a child
with special needs as entirely detrimental. Studies indicate that many parents
and siblings come to perceive their lives with a disabled relative as mutually
beneficial (e.g., Simons, 1987). Koegel, Schreibman, Johnson, O'Neill, & Burke
(1983) studied various aspects of parental functioning in 49 mothers and fathers
of children with autism. The researchers did not find any differences in stress
levels and psychological functioning between these families and well-functioning
control families. Some marriages may be strengthened in part through cooperation
and a joint sense of purpose of parenting a child with a handicap (e.g., Akerley,
1984; Kazak & Marvin, 1984).
Coping in Families of Children with Autism
Research has highlighted a number of specific coping strategies and coping
resources that families with children with disabilities use for successful
adaptation. In a study of 45 mothers of autistic children, Bristol (1984)
reported that parents felt that positive evaluations of direct services to
their child (e.g., "believing that my child's program has my family's
best interests in mind") was the most helpful resource in coping with
the challenges of autism. A number of other studies have pointed to other
family attributes that help families "regenerate" themselves after
a crisis, such as family integration, organization, and adaptability (Boyce
et al., 1991; Dyson, 1997; Gavidia-Payne & Stoneman, 1997).
Social support in the form of parental training programs has been shown to
help parents teach their autistic children functional skills and appropriate
behavior (Bondy & Frost, 1994; Harris & Handleman, 1994; Lovaas, 1981;
Marcus & Schopler, 1989; Talpins & Kabot, 1996). Support from family
and friends also plays an important role (Randall & Parker, 1999). Studies
have found that mothers who report low stress also report greater perceived
support from spouse, immediate and extended family, friends, and other parents
of children with disabilities (Bristol, 1979; Bristol, 1987; Bristol & Schopler,
1983).
Religion as a Coping Resource in Families of
Children with Autism
Framework of Religious Coping
Religion can mean very different things to different people.
Pargament (1997) defined religion as "a search for significance in ways related to the
sacred." The search for significance involves different pathways leading
to different religious destinations (Pargament & Park, 1995). Some people
look to religion for meaning, some for comfort, some for intimacy with others,
some in search of the self, and some for physical, psychological, and emotional
well-being.
Research has pointed to a variety of religious coping methods that serve various
ends. For example, Pargament et al. (1988) have distinguished three different
approaches to responsibility and coping in a stressful situation:
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the self-directing approach, in which the individual relies on self rather
than on God,
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the deferring approach, where the individual places the responsibility
for coping on God, and
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the collaborative coping approach, where the individual and God are both
active partners in coping.
In addition, Pargament (1997) has identified other forms of religious coping,
such as benevolent religious appraisals, seeking support from clergy or church
members, seeking spiritual support, discontent with congregation and God, negative
religious refraining, and expressing interpersonal religious discontent.
Some forms of religious coping, such as perceiving illness as the will of
God or as an opportunity for spiritual growth (Jenkins & Pargament, 1988),
use of collaborative religious coping (Pargament et al, 1990), and seeking
spiritual support (Wright, Pratt, & Schmall, 1985), are tied to better
outcomes (e.g., higher self-reported self-esteem, better psychological adjustment)
for the individual. On the other hand, certain forms of religious coping, such
as expressions of religious discontent with congregation and God, are associated
with poorer outcomes (e.g., poor mental health status, poor resolution of the
negative event; Pargament, 1997).
Religious Coping and Families with Children with Disabilities
Surprisingly, only a few studies have examined the relationship between the
use of religious coping in meeting the stressors of raising children with disabilities
and outcomes, such as psychological adjustment or personal growth. A few studies
indicate that parents of children with special needs report gaining significantly
more support from their personal beliefs than from organized religion (Coulthard & Fitzgerald,
1999; Fewell, 1986). One qualitative study by Haworth, Hill & Glidden (1996),
however, indicated that mothers of children with developmental disabilities
made more positive than negative comments regarding both spiritual beliefs
and organizational experience. In a fairly comprehensive study, with 52 African
American families who were caregivers of a child with mental retardation, Rogers-Dulan
(1998) found that church attendance and scores on the Religious Connectedness
Domain were negatively related to depression, family stress, and impact of
child's disability on the family.
A few recent studies reported data from qualitative interviews that explored
the role of religion in parenting children with special needs. Overall, the
results suggest that religion can serve as a source of support for these families
(Bennett, Deluca, & Allen, 1995). Religion reportedly helped families accept
their difficulties as a gift from God (Skinner, Bailey, Correa, & Rodriguez,
1999), as part of God's plan (Bristol, 1984), and as an opportunity for families
to become closer and attain higher spiritual levels (Skinner et al.). In some
cases, religion seemed to offer meaning to the misfortune and suffering for
these parents (Weisner, Beizer, & Stolze, 1991) and gave them hope, strength,
and patience (Barsch, 1968).
Religious coping can also result in negative outcomes for families of children
with disabilities. Explanations such as "God only sends special children
to special parents" have reportedly caused distress for some of these
parents (Fewell, 1986). In the study by Rogers-Dulan (1998), coding of open-ended
responses indicated three negative categories through which religion affected
the lives of these parents: God as unhelpful in parenting their child with
mental retardation, perception of religious experiences as aversive to the
coping process, and feelings of punishment or having doubts about the benevolence
of God. Some parents of children with special needs have also indicated negative
experiences with religious organizations (Haworth et al., 1996).
There are three major limitations to the studies that have examined the role
of religious coping in families of children with special needs. First, most
of them have focused their attention on the positive side of religion and have
neglected to study its negative aspects (except for studies by Rogers-Dulan,
1998, & Haworth et al., 1996). Even when some parents responded to questions
by saying that religion was not a source of support for them (e.g., Bennett
et al., 1995), their experience (which may have been negative) was not explored
further. Second, many studies relied mainly on interviews and hence did not
subject their data to empirical scrutiny. As a result, we do not know whether
the use of religious coping (positive or negative) is associated with better
or poorer outcomes for caretakers of these children. Finally, many studies
have measured religiousness using a framework that lacks specificity--focusing
only on global organizational practices or spiritual beliefs. They have failed
to consider the diverse, specific ways in which religion is involved in coping
with life's challenges.
- Tarakeshwar, Nalini, & Kenneth Pargament, Religious coping in families
of children with autism, Focus on Autism & Other Developmental Disabilities,
Winter 2001, Vol. 16, Issue 4.
Personal
Reflection Exercise #3
The preceding section contained information
about religious coping in families of children with autism. Write
three case study examples regarding how you might use the content of this section
in your practice.
QUESTION
10
According to Pargament et al., what are the three different approaches to
responsibility and coping in a stressful situation? Record the letter of the correct answer
the Answer
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Answer
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