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The Influence of Religiosity on Well-Being and Acceptance in Parents ofChildren with Autism Spectrum DisorderStacy 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 ofChildren with Autism Spectrum Disorder', Journal of Religion, Disability & Health, 13: 2, 104 — 113To link to this Article: DOI: 10.1080/15228960802581503URL: http://dx.doi.org/10.1080/15228960802581503

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Journal of Religion, Disability & Health, 13:104–113, 2009Copyright © Taylor & Francis Group, LLCISSN: 1522-8967 print / 1522-9122 onlineDOI: 10.1080/15228960802581503

The Influence of Religiosity on Well-Beingand Acceptance in Parents of Children

with Autism Spectrum Disorder

STACY E. WHITEAnderson University, Anderson, Indiana, USA

This study was designed to investigate religiosity, parental well-being, stressors in raising a child with autism, and acceptanceof the disorder. Previous research states that religiosity can bufferthe effects of stressors on well-being (Friedrich et al., 1988), andprovide support and peace of mind (Tarakeshwar and Pargament,2001). Parents of children with autism (n = 177) participatedby completing an Internet-based questionnaire. Results revealedcorrelations between most of the variables, and the associationbetween stress and well-being was stronger for parents with lowerreligiosity. Implications for parents and religious organizations anddirections for future research are discussed.

KEYWORDS religion, spirituality, autism, research, parents of dis-abled children, stress, Internet

The task of raising a child with an autism spectrum disorder presents parentswith significant challenges, stemming not only from the child’s problematicbehaviors and deficits characteristic of the disorder, but also due to theperplexing nature of autism and the controversy surrounding its cause andmost effective treatments. It is not surprising, therefore, that studies of parentsof children with autism have consistently found that these parents experiencehigher levels of stress, depression, and anxiety than parents of both typicallydeveloping children and children with non-spectrum diagnoses (i.e., Boumaand 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 atAnderson University and Dr. Yona Lunsky of CAMH for their continued support.

Address correspondence to Stacy White, Centre for Addiction & Mental Health, 501Queen Street West, Toronto, Ontario, Canada M5V 2B4. (E-mail: stacy [email protected])

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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 stressorsmay be specifically centered on the child’s impairments, others may be morestrongly related to the parents’ own experiences or the functioning of theentire family. Some of the most stressful factors involved in raising child withautism may be the permanent and pervasive nature of the disability, inade-quate resources for social support, or the lack of acceptance from family andpeers faced by parents dealing with the disorder. One of the most commonsources of stress for parents has been found to lie in the child’s behavioralproblems (Quine and Pahl, 1985; Sharpley, Bitsika, and Efremidis, 1997).A study of mothers of children with pervasive developmental disorder byTomanik et al. (2004) lends further support to the association between childbehaviors and parental stress; both adaptive and maladaptive child behaviorsaccounted for significant variance in stress levels reported by parents in theirstudy. Child behavior problems can also have an impact on overall parentalwell-being (Hastings, 2002). A multidimensional construct, well-being en-compasses numerous domains of personal functioning that are indicativeof one’s physical and mental condition, such as feelings of depression andanxiety, contentment, general health, and overall satisfaction with life.

In an effort to enhance well-being, it is vital to identify resources thatmay assist parents of children with autism to cope with the difficulties theymay face. In addition to social support offered by family, peers and par-ent training programs, religion may also serve as an important resource(Tarakeshwar and Pargament, 2001). When considered in terms of one’s re-ligious involvement and religious beliefs, these two factors may play verydistinct roles when dealing with adverse life situations. Integration into areligious community may give persons coping with stressful events a senseof belonging and a strong network of social support, as well as practicalassistance in meeting day-to-day challenges. Furthermore, a schema of reli-gious beliefs may equip parents with an alternate framework for interpret-ing 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 abuffer against some stressors, including child behavior problems (Friedrichet al., 1988). In a study of parents of children with developmental disabili-ties, Haworth, Hill and Glidden (1996) found that some parents who usedreligion as a coping resource found it useful in providing a reason for thechild’s 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 childrenwith autism who relied on positive religious coping strategies (e.g., seekingsupport from the church, and viewing the child’s disability as ‘God’s will’ oran opportunity for spiritual growth) reported more positive changes in theirsocial relationships and coping skills.

Conversely, research findings have also highlighted many negative as-pects of religion for parents of children with disabilities. For example,


106 S. E. White

Coulthard and Fitzgerald (1999) found that parents felt that having a childwith a disability had decreased their participation in church activities andhad distanced them from God and their religion. For many parents, religiousinvolvement may be a source of stress when leaders and congregations offerlimited assistance to the family, and do not readily make the accommoda-tions necessary to include the child in religious activities. Also, having achild with a disability may cause parents to question their religious beliefs,and can elicit feelings of anger toward God or lead parents to believe thattheir child is a punishment for some wrongdoing. Thus, religion may beboth a supportive resource and a source of distress for parents dealing withthe challenges of autism (Coulthard and Fitzgerald, 1999; Tarakeshwar andPargament, 2001). Also, as noted by Coulthard and Fitzgerald, parents mayfeel supported to a greater extent by their personal religious beliefs than bytheir involvement in religious organizations. This finding suggests that eachof these aspects of religiosity may impact parents in very distinct ways.

One relatively uninvestigated dimension of parent-child relations in fam-ilies of children with autism is acceptance of the child’s disorder. Severalfactors may play a role in the degree to which parents are accepting oftheir children. For example, a study of the influence of diagnostic labelingon parental perceptions of children with behavior disorders revealed thatparents who had received an official label for their child’s condition hadmore accepting views of their children than parents who were not given alabel (Fernald and Gettys, 1980). Previous research suggests that a religiousbelief system may assist parents in altering their perception of challenginglife events, helping them to find meaning in their situation. It may follow,therefore, that once parents of children with autism have found significancein their child’s disorder, they may view their situation more positively andmore readily accept the child. An investigation of acceptance in relation toreligious beliefs and involvement may further help in our understanding ofthe mechanisms that influence parental acceptance in general.

The purpose of the present study was to investigate how religiosity inparents of children with an autism spectrum disorder and stress involved inraising their children are associated with parental well-being and acceptanceof the child’s disorder. Of particular interest were two aspects of religiosity(religious involvement and religious beliefs) and how they are associatedwith well-being and acceptance. Also of interest was the relationship be-tween stress and well-being for parents with differing levels of religiosity.Based on the findings of previous studies, the following hypotheses werederived. First, it was hypothesized that religiosity would be positively corre-lated with parental well-being. Second, it was hypothesized that religiositywould be positively correlated with acceptance of the child’s disorder. Itwas further hypothesized that a negative correlation would be found be-tween stress and well-being. Finally, it was hypothesized that the negativecorrelation between stress and well-being would be stronger (more negative)for parents with low religiosity than for parents with high religiosity.



METHOD

Participants

Participants in the study consisted of parents of children diagnosed with anautism spectrum disorder, and were recruited through chapters of the AutismSociety of America in Indiana, Ohio, Kentucky, and Illinois. Two respondentswho did not reside in the same household as their children with autism wereexcluded from analyses, yielding a final sample of 177 participants. Of allparticipants, 87% were mothers, and parents ranged in age from 23 to 61years (mean = 39 years). Most parents were married (83%) and reportedhaving a religious affiliation (81%); however, only 10% were members ofvisible minority ethnic groups. The children of respondents ranged in agefrom 2 to 31 years (mean = 9 years), and consisted mainly of males (89%).Parents reported their children as having diagnoses covering the entire rangeof the autism spectrum (63% autism, 18% Asperger’s syndrome, 17% Perva-sive Developmental Disorder (PDD)/Pervasive Developmental Disorder, NotOtherwise Specified (PDD-NOS), 2% other). In addition, 41 parents (24%)reported that their child had co-morbid, non-spectrum diagnoses, includ-ing attention deficit disorder (ADD)/attention deficit hyperactivity disorder(ADHD), obsessive-compulsive disorder, epilepsy/seizure disorder, mentalretardation, Tourette’s syndrome, and anxiety disorder. Having more thanone 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 fourchildren on the spectrum.

Measures

Demographic information was collected using a brief demographics ques-tionnaire. 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-CulturalDimensions of Religiosity Scale (DeJong et al., 1976). The Belief DimensionSubscale consists of eight items that assess beliefs concerning God, im-mortality, prayer and scripture. The Religious Practice Dimension Subscalemeasures church attendance, financial support, bible reading, and churchactivity using five items. For each item on both subscales, parents wereasked to select the answer that most accurately described their personalbeliefs and behaviors. Items were each scored on a 5- to 7-point scale, witha higher total score on each subscale representing a higher level of thecorresponding construct.

Stress inherent to raising a child with autism was assessed using theParental Stressor List, adapted from the Stressors of Parents of Children with


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Autism Checklist (Tarakeshwar and Pargament, 2001). The original checklistwas rationally derived to target child-centered stressors specific to raising achild with autism. For the purpose of this study, items on the original listwere adapted to include both child- and parent-related stressors, based onthe selection of the most commonly cited stressors and those added to the listby parents in Tarakeshwar and Pargament’s (2001) study. The adapted scaleconsists of 20 items, each of which was rated according to its perceivedlevel of severity on a 7-point Likert-type scale. A total stress score wasdetermined by adding the ratings given by parents to each of the stressorslisted.

Parental well-being was measured using the Psychological General Well-Being Index (PGWBI) (Dupuy, 1984). This multidimensional, 22-item scaleassesses subjective well-being across six affective states: anxiety, depressedmood, 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 wasdetermined by calculating the sum of the scores on each subscale of thePGWBI, with a higher score reflecting a higher level of well-being. Theauthor of this scale reports a test-retest correlation coefficient of 0.81 andCronbach’s alpha of 0.94, indicating high levels of reliability and internalconsistency.

As acceptance in parents of children with autism is a relatively un-examined construct, the Autism Acceptance Scale was developed in orderto assess both feelings of acceptance and non-acceptance of the child andhis/her diagnosis. Based on an adapted version of the Parental Attitude Re-search Instrument used by Zuk et al. (1961), the Autism Acceptance Scaleconsists of seven statements: three items to measure acceptance and four tar-geted at non-acceptance. Parents indicated the degree to which they agreedor disagreed with each statement using a 5-point scale (1 = strongly agree to5 = strongly disagree). All acceptance items were reverse scored, such thata higher total score is indicative of a higher level of acceptance.

Following the completion of the four measures, parents were askedin an open-ended section if they had any additional comments about theirexperience 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 inperson. They were provided with an Internet link leading to the online ques-tionnaire containing the measures used in the study, which was passed onto members of each support group chapter. The measures were presented inthe following fixed order: demographics, the PGWBI, the Parental StressorsList, Cross-Cultural Dimensions of Religiosity, and the Autism Acceptance



Scale. This was followed by the open-ended section, in which parents wereasked to share any further comments on their experience raising a child withautism. A debriefing section on the final page of the questionnaire providedparents with resources for locating a counselor in the event that they expe-rienced emotional distress during the completion of the study materials. Theentire questionnaire required approximately 10–15 minutes to complete.

RESULTS

Data Analysis Plan

To test the first three hypotheses, Pearson’s Correlation Coefficients were cal-culated 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 re-ligiosity subgroups were first selected from the sample. To select groupsof approximately equal sizes, representing distinct levels of religiosity, thefollowing procedure was used. First, the religiosity scores of all participantswho completed this section of the questionnaire (n = 149) were rank orderedfrom lowest to highest. The scores were then divided into four approximatelyequal groups. Participants whose scores fell within the lowest fourth com-posed the “low religiosity” group (n = 42), and those in the uppermostfourth were included in the “high religiosity” group (n = 37). Correlation co-efficients for the relationship between stress and well-being were calculatedfor each of these groups, and using Fisher’s Z transformations and a z-testof significance, the coefficients for each group were compared.

Quantitative Findings

As hypothesized, religiosity was found to be positively correlated withboth well-being (r = .166) and acceptance of the child’s 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 withcaution. Each correlation was analyzed independently, and did not use anexperiment-wide error rate, as only 3 of the 6 possible correlations were ofinterest for the purpose of this study. Had an experiment-wide error ratebeen used, only the relationship between stress and well-being would havebeen found to be statistically significant.)

Analyses for the fourth hypothesis revealed significant correlations be-tween 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). Whencompared using a z-test of significance, there was a significant difference


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FIGURE 1 Stress—well-being correlations for parents with high and low religiosity.

between these correlations (p = .012). Specifically, high stress levels weremore strongly associated with lower levels of well-being in parents with lowreligiosity than in those with high religiosity (Figure 1).

Qualitative Findings

In the final section of the questionnaire, parents were asked to share anyadditional comments on their experience raising a child with an autismspectrum disorder. Parents’ responses highlighted several pertinent themes,many of which were directly linked to the variables examined in this studyas well as in previous research. Many parents cited their religious faith as asource of strength needed to raise their children. One mother commented,“[. . .] with God, we will beat this and be a functioning, productive, andinfluential family.” Many parents also spoke of their ability to find meaningin their child’s disorder and to accept their role as caregiver of a child withautism. On several occasions, parents referred to their children as “blessings”or “gifts from God.” One mother poignantly stated, “Through this child, Godhas shown me Himself—how He can work in our lives and how He lovesus. I am grateful to God for my son’s autism if only for this.” Another said,“A thought that gives me strength is this: God has enough confidence in methat he chose me to be the mother of my son [. . .]. Why should I have anydoubt about my ability to take care of my special child?”

Conversely, parents also spoke of the challenges they face when tryingto integrate their children into religious activities, as captured in this father’swords: “Church services can be very difficult for a child with ASD [. . .] Itcan be difficult to locate a parish which can understand the unique needsof [our] family.” Of particular concern were the challenges arising from theoften-disruptive nature of their child’s behaviors, which one mother cited



as the primary reason her family does not attend church. Finally, one par-ent commented on the change in her religious perspective following herchild’s diagnosis: “I think my faith in my religion [. . .] was much strongerbefore the diagnosis. Whether that initial faith was misguided originally, orwhether I have just grown so bitter and see things much differently now, Istill haven’t decided.” This mother’s uncertainty about the cause of her di-minished religious faith highlights the complex nature of the coping processand adjustment to life after receiving an autism diagnosis, even in regard toone’s religious convictions.

DISCUSSION

As hypothesized, religiosity was found to be significantly correlated withwell-being and acceptance. Thus, parents who more strongly endorsed hav-ing religious beliefs and who were more involved in religious organizationshad greater well-being and were more accepting of their child’s disorder.In addition, a relationship was also found between stress and well-being,and this relationship was significantly more negative for parents with lowreligiosity than for those with high religiosity. Therefore, stress involved inraising a child with autism had a more negative impact on well-being inparents with low religiosity than in parents with high religiosity. Friedrichet al. (1988) suggest that involvement in religious activities can increase thelikelihood of receiving social support, and this, in turn, has been found tomoderate the impact of stress among parents of children on the autism spec-trum (Dunn et al., 2001). Although these findings do not directly imply thatall 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 faithcommunities a viable source of support, which can serve to foster well-beingand acceptance, and buffer the impact of stress on well-being.

The equivocal nature of comments made by parents in response tothe open-ended question reflects both the positive and negative aspects ofreligious beliefs and involvement for families with special needs, as foundin previous research (e.g., Tarakeshwar and Pargament, 2001). It seems,therefore, that while religious organizations hold potential as possiblesources of support for parents, there remain a number of barriers that renderinvolvement in these communities particularly challenging. In order to elim-inate these obstacles, a variety of measures can be employed to facilitate theinclusion of parents and their children with autism. For example, childrencan be paired with a peer or adult helper during activities, to help the childnavigate 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 theoreticalreligious principles. Finally, given sufficient demand within the community,


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congregations can create special programs specifically designed to addressthe needs of children with special needs and their families (Schworm,2005). In addition, it is important to note that a perspective of opennessand acceptance among members of the congregation and its leadership isfundamental to the accommodation of members with diverse needs.

Limitations of Present Study and Future Research

One limitation of the present study was that the diagnoses of children werereported by parents and not confirmed through the use of a standardizeddiagnostic assessment. Also, the vast majority of the sample consisted ofmarried Caucasian women, and thus, parents of various ethnic backgroundsand marital statuses, as well as fathers, were not well represented. This mayhave been due to the methods of participant recruitment and data collectionused, which limited the sample to parents with access to resources such asthe Internet and who were more likely to already be part of a network ofautism advocacy and support (the Autism Society of America). In order toinclude a more representative sample for future studies, participants may besolicited from a variety of sources, such as direct contact with developmentalclinics and early intervention service providers. Future research may alsoincorporate an investigation of additional components of religiosity, as wellas a more diversified representation of religious faiths.

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