Abstract

Importance: Children with autism spectrum disorder (ASD) may experience sleep difficulties that worsen into adulthood and negatively influence both child and family, yet the experience is not well understood. Understanding the family’s experience can inform occupational therapy providers, future research, and practice guidelines.

Objective: To examine experiences surrounding sleep for families raising a young adult with ASD (YA-ASD).

Design: Qualitative study in the phenomenological tradition of Moustakas (1994). Experienced researchers analyzed transcripts from in-depth, in-person interviews to triangulate data, distill themes, and construct the essence of family experience. Trustworthiness was established through member checking, audit trails, and epoché diaries that were maintained throughout data analyses.

Setting: Community setting (large city in the northeastern United States).

Participants: People who self-identified as living in a family arrangement that included a YA-ASD age 15–21 yr, able to verbally participate in English. Families with children diagnosed with developmental disabilities other than ASD were excluded.

Results: Six eligible families identified through volunteer sampling participated. The participants’ sociodemographic diversity was limited across household income, education level, and ethnicity. All YA-ASD in this study were limited verbally and unable to contribute. Analyses of interview transcripts revealed five themes that form the essence of the families’ experience surrounding sleep.

Conclusions and Relevance: Sleep issues for YA-ASD continue into adulthood and affect the entire family because of continuous co-occupation; occupational therapy support is therefore important for families of YA-ASD. The lack of effective evidence-based interventions supporting the YA-ASD population also reveals an area for growth.

What This Article Adds: The results indicate the importance of addressing sleep for YA-ASD and their families in occupational therapy practice because of its considerable impact on family life.

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