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Autism: Family Life - Tactics for Getting Normal Again
Autism continuing education psychologist CEUs

Section 10
Religious Coping in Families of Children with Autism

CEU Question 10 | CEU Answer Booklet | Table of Contents | Autism
Psychologist CEs, Counselor CEUs, Social Worker CEUs, MFT CEUs

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.
The article above contains foundational information. Articles below contain optional updates.

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.

Online Continuing Education 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 CEU Answer Booklet.

 
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The article above contains foundational information. Articles below contain optional updates.
Screening and treatment of trauma-related symptoms in youth with autism spectrum disorder among community providers in the United States
Autism, Ahead of Print.
Using a cross-sectional survey of 673 multidisciplinary autism spectrum disorder providers recruited from five different sites in the United States, we examined the frequency with which community-based providers inquire about, screen, and treat trauma-related symptoms in their patients/students and assessed their perceptions regarding the need for and barriers to providing these services. Univariate and bivariate frequencies of self-reported trauma service provision, training needs, and barriers were estimated. Multivariable logistic regressions identified provider and patient-related factors associated with trauma-related symptoms screening and treatment. Over 50% of providers reported some screening and treatment of trauma-related symptoms in youth with autism spectrum disorder. Over 70% informally inquired about trauma-related symptoms; only 10% universally screened. Screening and treatment varied by provider discipline, setting, amount of interaction, and years of experience with autism spectrum disorder, as well as by patient/student sex, ethnicity, and socioeconomic status. Most providers agreed that trauma screening is a needed service impeded by inadequate provider training in trauma identification and treatment. The findings indicate that community providers in the United States of varied disciplines are assessing and treating trauma-related symptoms in youth with autism spectrum disorder, and that evidence-based approaches are needed to inform and maximize these efforts.
Adapted cognitive behavior therapy for obsessive–compulsive disorder with co-occurring autism spectrum disorder: A clinical effectiveness study
Autism, Ahead of Print.
Obsessive–compulsive disorder and autism spectrum disorder commonly co-occur. Adapted cognitive behavior therapy for obsessive–compulsive disorder in adults with autism spectrum disorder has not previously been evaluated outside the United Kingdom. In this study, 19 adults with obsessive–compulsive disorder and autism spectrum disorder were treated using an adapted cognitive behavior therapy protocol that consisted of 20 sessions focused on exposure with response prevention. The primary outcome was the clinician-rated Yale–Brown Obsessive–Compulsive Scale. Participants were assessed up to 3 months after treatment. There were significant reductions on the Yale–Brown Obsessive–Compulsive Scale at post-treatment (d = 1.5), and improvements were sustained at follow-up (d = 1.2). Self-rated obsessive–compulsive disorder and depressive symptoms showed statistically significant reductions. Improvements in general functioning and quality of life were statistically non-significant. Three participants (16%) were responders at post-treatment and four (21%) were in remission from obsessive–compulsive disorder. At follow-up, three participants (16%) were responders and one (5%) was in full remission. Adapted cognitive behavior therapy for obsessive–compulsive disorder in adults with co-occurring autism spectrum disorder is associated with reductions in obsessive–compulsive symptoms and depressive symptoms. However, outcomes are modest; few patients were completely symptom free, and treatment engagement was low with few completed exposures and low adherence to homework assignments. We identify and discuss the need for further treatment refinement for this vulnerable group.
Parent–Child Interaction Therapy for children with autism spectrum disorder and a matched case-control sample
Autism, Ahead of Print.
Parent–Child Interaction Therapy is an empirically based, behavioral parent training program for young children exhibiting disruptive behaviors. Parent–Child Interaction Therapy shows promise for treating disruptive behaviors in children with autism spectrum disorder. Treatment processes (i.e. treatment length and homework compliance), parenting skills, parenting stress, and behavioral outcomes (i.e. disruptive and externalizing behaviors and executive functioning) were compared in 16 children with autism spectrum disorder and 16 children without autism spectrum disorder matched on gender, age, and initial intensity of disruptive behaviors. Samples were statistically similar in terms of child receptive language, child race and ethnicity, parent age, gender and education, and number of two-parent families in treatment. Families received standard, mastery-based Parent–Child Interaction Therapy. Both groups demonstrated significant and clinically meaningful improvements in child disruptive and externalizing behavior and executive functioning, parenting skills, and parenting stress. Length of treatment, homework compliance, and parent and child outcomes did not differ significantly between groups. A subset of children with autism spectrum disorder also showed significant improvements in social responsiveness, adaptive skills, and restricted/repetitive behaviors. This study replicates and extends prior research by demonstrating that children with and without autism spectrum disorder experience similar benefits following Parent–Child Interaction Therapy. Findings may expand the availability and dissemination of time-limited, evidence-based interventions for autism spectrum disorder and comorbid disruptive behaviors.
In-hospital mortality among adults with autism spectrum disorder in the United States: A retrospective analysis of US hospital discharge data
Autism, Ahead of Print.
A retrospective data analysis using 2004–2014 Healthcare Cost and Utilization Project Nationwide Inpatient Sample was conducted to examine in-hospital mortality among adults with autism spectrum disorders in the United States compared to individuals in the general population. We modeled logistic regressions to compare inpatient hospital mortality between adults with autism spectrum disorders (n = 34,237) and age-matched and sex-matched controls (n = 102,711) in a 1:3 ratio. Adults with autism spectrum disorders had higher odds for inpatient hospital mortality than controls (odds ratio = 1.44, 95% confidence interval: 1.29–1.61, p < 0.001). This risk remained high even after adjustment for age, sex, race/ethnicity, income, number of comorbidities, epilepsy and psychiatric comorbidities, hospital bed size, hospital region, and hospitalization year (odds ratio = 1.51, 95% confidence interval: 1.33–1.72, p < 0.001). Adults with autism spectrum disorders who experienced in-hospital mortality had a higher risk for having 10 out of 27 observed Elixhauser-based medical comorbidities at the time of death, including psychoses, other neurological disorders, diabetes, hypothyroidism, rheumatoid arthritis collagen vascular disease, obesity, weight loss, fluid and electrolyte disorders, deficiency anemias, and paralysis. The results from the interaction of sex and autism spectrum disorders status suggest that women with autism spectrum disorders have almost two times higher odds for in-hospital mortality (odds ratio = 1.95, p < 0.001) than men with autism spectrum disorders. The results from the stratified analysis also showed that women with autism spectrum disorders had 3.17 times higher odds (95% confidence interval: 2.50–4.01, p < 0.001) of in-hospital mortality compared to women from the non–autism spectrum disorders matched control group; this difference persisted even after adjusting for socioeconomic, clinical, and hospital characteristics (odds ratio = 2.75, 95% confidence interval: 2.09–3.64, p < 0.001). Our findings underscore the need for more research to develop better strategies for healthcare and service delivery to people with autism spectrum disorders.

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