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Parent-Child Interaction and Autism Spectrum Disorder ASD
Autism continuing education psychologist CEUs

Section 10
Religious Coping in Families of Children with Autism

CEU Question 10 | CEU Test | 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 Test.

 
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The article above contains foundational information. Articles below contain optional updates.
Challenges, priorities, barriers to care, and stigma in families of people with autism: Similarities and differences among six Latin American countries
Autism, Ahead of Print.
Lack of access to services and support is an important issue for people with autism, but in low- and middle-income countries there is a lack of data on this problem. The aims of this study were to describe the challenges and priorities, identify barriers to care, and map stigma among families of individuals with autism in Latin America. This survey was undertaken by the Red Espectro Autista Latinoamerica network, a coalition of researchers/clinicians from six Latin American countries; it comprised 2942 caregivers of children with autism from Brazil, Argentina, Chile, Uruguay, Venezuela, and the Dominican-Republic, who completed the Spanish/Portuguese version of the Caregiver Needs Survey. The survey showed that the main priorities were greater community awareness and improvements in education. The main barriers to care were waiting lists (50.2%), treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one-third reported feeling discriminated against and helpless for having a child with autism, 48.8% reported some type of financial problem, 47.4% had to reduce work hours, and 35.5% had to stop working because of their child’s autism. This survey describes the main needs/challenges faced by individuals with autism in Latin America, helping to build data-driven strategies at a national/regional level.Lay abstractApproximately 6 million individuals with autism spectrum disorder live in Latin America. In order to strengthen autism spectrum disorder research collaborations and awareness in the region, the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica) was constituted in 2015, comprising researchers and clinicians from the following six countries: Brazil Argentina, Chile, Uruguay, Venezuela, and the Dominican Republic. This first multisite study from the Red Espectro Autista Latinoamerica network aims to describe the challenges and priorities to identify barriers to care and to map stigma among families of individuals with autism spectrum disorder living in Latin America. A total of 2942 caregivers from these six countries completed an online survey showing that the main priorities were greater community awareness and improvements in the educational system for individuals with autism spectrum disorder. In addition to that, the main barriers to care were related to lack of structure, mainly waiting lists (50.2%), high treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one third reported feeling discriminated against and helpless for having a child with autism spectrum disorder. Also, 48.8% of the caregivers declared financial problems, 47.4% of them had to cut down work hours, and 35.5% had to leave their jobs because of their child’s autism spectrum disorder. This is a pioneer study providing a description of the needs and challenges faced by families affected by autism spectrum disorder in Latin America, helping to build data-driven strategies at the national and regional levels.
Parents’ perceptions and concerns about physical activity participation among adolescents with autism spectrum disorder
Autism, Ahead of Print.
The parents of adolescents with autism spectrum disorder have a vital and proactive role in encouraging healthy physical activity habits, and they possess important knowledge about the adolescents’ needs when it comes to enhancing participation in physical activity. But promoting healthy physical activity habits in adolescents can be difficult. The purpose of this study was thus to describe parents’ perceptions of their adolescent child’s participation in physical activity and to describe the parental role in promoting such participation. Twenty-eight parents of adolescents aged 12–16 years with autism spectrum disorder were interviewed. The interviews were analyzed using an inductive content analysis approach. The parents described how challenging participation in physical activities could be for their adolescents. Despite this, they wanted to see their children participate more in physical activity but found the promotion of physical activity to be an overwhelming task that was difficult to cope with on their own. The results reveal a need for support and collaborative efforts among different actors to give these issues increased priority in order to promote the adolescents’ physical activity participation.Lay abstractWhat is already known about the topic? The parents of adolescents with autism spectrum disorder have a vital and proactive role in encouraging healthy physical activity habits. But promoting healthy physical activity habits in adolescents can be difficult. The purpose of this study was thus to describe the parental perceptions of their adolescent child’s participation in physical activity and to describe the parental role in promoting such participation. Twenty-eight parents of adolescents aged 12–16 years with autism spectrum disorder were interviewed.What this paper adds? The parents described how challenging participation in physical activities could be for their adolescents. Despite this, they wanted to see their children participate more in physical activity but found the promotion of physical activity to be an overwhelming task that was difficult to cope with on their own.Implications for practice, research, or policy. The results reveal a need for support and collaborative efforts among different actors to give these issues increased priority in order to promote the adolescents’ physical activity participation.
Vision care among school-aged children with autism spectrum disorder in North America: Findings from the Autism Treatment Network Registry Call-Back Study
Autism, Ahead of Print.
Children with autism spectrum disorder have a high risk of vision problems yet little is known about their vision care. This cross-sectional survey study, therefore, examined vision care among 351 children with autism spectrum disorder ages 6–17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Vision care variables were vision tested with pictures, shapes, or letters in the past 2 years; vision tested by an eye care practitioner (e.g. ophthalmologist, optometrist) in the past 2 years; prescribed corrective eyeglasses; and wore eyeglasses as recommended. Covariates included sociodemographic, child functioning, and family functioning variables. Multivariable models were fit for each vision care variable. Though 78% of children with autism spectrum disorder had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism spectrum disorder prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Multivariable analysis results demonstrated statistically significant differences in vision care among children with autism spectrum disorder by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism spectrum disorder do not receive recommended vision care and highlight potentially modifiable disparities in vision care.Lay AbstractChildren with autism are at high risk for vision problems, which may compound core social and behavioral symptoms if untreated. Despite recommendations for school-aged children with autism to receive routine vision testing by an eye care practitioner (ophthalmologist or optometrist), little is known about their vision care. This study, therefore, examined vision care among 351 children with autism ages 6–17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Parents were surveyed using the following vision care measures: (1) child’s vision was tested with pictures, shapes, or letters in the past 2 years; (2) child’s vision was tested by an eye care practitioner in the past 2 years; (3) child was prescribed corrective eyeglasses; and (4) child wore eyeglasses as recommended. Sociodemographic characteristics such as parent education level, child functioning characteristics such as child communication abilities, and family functioning characteristics such as caregiver strain were also assessed in relationship to vision care. Although 78% of children with autism had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Differences in vision care were additionally found among children with autism by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism do not receive recommended vision care and highlight potentially modifiable disparities in vision care.
Sex-related patterns of intrinsic functional connectivity in children and adolescents with autism spectrum disorders
Autism, Ahead of Print.
Although a growing literature highlights sex differences in autism spectrum disorder clinical presentation, less is known about female variants at the neural level. We investigated sex-related patterns of functional connectivity within and between functional networks in children and adolescents with autism spectrum disorders, compared to typically developing peers. Resting-state functional magnetic resonance imaging data for 141 children and adolescents (7–17 years) selected from an in-house sample and four sites contributing to the Autism Brain Imaging Database Exchange (ABIDE I and II) were submitted to group independent component analysis to generate resting-state functional networks. Functional connectivity was estimated by generating resting-state functional network correlation matrices, which were directly compared between males and females, and autism spectrum disorder and typically developing groups. Results revealed greater connectivity within the default mode network in typically developing girls as compared to typically developing boys, while no such sex effect was observed in the autism spectrum disorder group. Correlational analyses with clinical indices revealed a negative relationship between sensorimotor connectivity and history of early autism symptoms in girls, but not in boys with autism spectrum disorder. A lack of neurotypical sex differentiation in default mode network functional connectivity observed in boys and girls with autism spectrum disorder suggests that sex-related differences in network integration may be altered in autism spectrum disorder.Lay summaryWe investigated whether children and adolescents with autism spectrum disorders show sex-specific patterns of brain function (using functional magnetic resonance imaging) that are well documented in typically developing males and females. We found, unexpectedly, that boys and girls with autism do not differ in their brain functional connectivity, whereas typically developing boys and girls showed differences in a brain network involved in thinking about self and others (the default mode network). Results suggest that autism may be characterized by a lack of brain sex differentiation.
Facial emotion recognition in autistic adult females correlates with alexithymia, not autism
Autism, Ahead of Print.
Research on predominantly male autistic samples has indicated that impairments in facial emotion recognition typically associated with autism spectrum conditions are instead due to co-occurring alexithymia. However, whether this could be demonstrated using more realistic facial emotion recognition stimuli and applied to autistic females was unclear. In all, 83 females diagnosed with autism spectrum condition completed online self-report measures of autism spectrum condition severity and alexithymia, and afacial emotion recognition deficit that assessed their ability to identify multimodal displays of complex emotions. Higher levels of alexithymia, but not autism spectrum condition severity, were associated with less accurate facial emotion recognition. Difficulty identifying one’s own feelings and externally oriented thinking were the components of alexithymia that were specifically related to facial emotion recognition accuracy. However, alexithymia (and autism spectrum condition severity) was not associated with speed of emotion processing. The findings are primarily discussed with the theoretical view that perceiving and experiencing emotions share the same neural networks, thus being able to recognise one’s own emotions may facilitate the ability to recognise others’. This study is in line with previous similar research on autistic males and suggests impairments in facial emotion recognition in autistic females should be attributed to co-occurring alexithymia.Lay abstractResearch with autistic males has indicated that difficulties in recognising facial expressions of emotion, commonly associated with autism spectrum conditions, may instead be due to co-occurring alexithymia (a condition involving lack of emotional awareness, difficulty describing feelings and difficulty distinguishing feelings from physical bodily sensations) and not to do with autism. We wanted to explore if this would be true for autistic females, as well as to use more realistic stimuli for emotional expression. In all, 83 females diagnosed with autism spectrum condition completed self-report measures of autism spectrum condition traits and alexithymia and completed a visual test that assessed their ability to identify multimodal displays of complex emotions. Higher levels of alexithymia, but not autism spectrum condition features, were associated with less accuracy in identifying emotions. Difficulty identifying one’s own feelings and externally oriented thinking were the components of alexithymia that were specifically related to facial emotion recognition accuracy. However, alexithymia (and levels of autism spectrum condition traits) was not associated with speed of emotion processing. We discuss the findings in terms of possible underlying mechanisms and the implications for our understanding of emotion processing and recognition in autism.

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