Beyond Parenting: Family Stress in Caring for Children with Autism Spectrum Disorder

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Kay Bradford


Deficits associated with autism spectrum disorder (ASD) make it unique compared to other developmental disabilities; behavior problems, impaired social and communication skills, and the ambiguity of the diagnosis can be stressors for all members of the family (Stoneman, 2005). This may cause additional strain for parents of children with ASD compared to parents of children with other developmental disabilities (Estes, et al., 2009). Parents of children with ASD not only have typical child-rearing responsibilities, but also deal with added stress as they come to terms with the meaning and implications of this disability and adapt to additional demands (e.g. addressing child challenges and delays, advocating for needed services and accommodations). We propose considering the impact of an ASD diagnosis on parental stress and the adoption of multiple roles throughout the lifespan through the theoretical lenses of family stress theory and symbolic interactionism. Based off of the double ABCX model (McCubbin, Cauble, & Patterson, 1983), our proposed model specifically addresses family stress regarding parents of children with ASD. Understanding background, including stressors, resources, and perceptions at play prior to receiving an ASD diagnosis, helps contextualize the associated family crisis. This model allows for understanding the cyclical nature of adjustment as new stressors, such as missed milestones, are introduced throughout the lifespan. Using symbolic interactionism to consider personal meaning in various stages of this model, as well as in parental role development, provides additional insight. This model is also helpful in contemplating future research and application directions with regard to studying and working with parents of children with ASD. Interventionists could benefit from added perspective as they assist families of children with ASD through therapy and other services. Future research may investigate individual milestones as connected with family adaptation.

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