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Section 10
Coping in Families of Children with Autism

Question 10 | Test | Table of Contents

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:

1. the self-directing approach, in which the individual relies on self rather than on God,
2. the deferring approach, where the individual places the responsibility for coping on God, and
3. 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.

Update
Coping Strategies in Mothers of Children
with Autism Spectrum Disorder
and their Relation to Maternal stress and depression

- Ntre, V., Papanikolaou, Κ., Amanaki, E., Triantafyllou, K., Tzavara, C., & Kolaitis, G. (2022). Coping Strategies in mothers of children with autism spectrum disorder and their relation to maternal stress and depression. Psychiatrike = Psychiatriki, 33(3), 210–218.

Peer-Reviewed Journal Article References:
Arnaud, S. (2020). A social–emotional salience account of emotion recognition in autism: Moving beyond theory of mind. Journal of Theoretical and Philosophical Psychology. Advance online publication.

Howes, A. E., Burns, M. E., & Surtees, A. D. R. (2021). Barriers, facilitators, and experiences of the autism assessment process: A systematic review of qualitative research with health professionals. Professional Psychology: Research and Practice. Advance online publication.

Whitehead, P. M., & Purvis, K. (2021). Humanizing autism research and treatment: Facilitating individuation through person-centered therapy. The Humanistic Psychologist. Advance online publication.

QUESTION 10
According to Pargament et al., what are the three different approaches to responsibility and coping in a stressful situation? To select and enter your answer go to Test.