Related Experiment Video
Updated: Oct 13, 2025
A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
Published on: July 31, 2017
Experience of Sleep for Families of Young Adults With Autism Spectrum Disorder
Nicole Halliwell1, Mara Podvey2, Julie D Smith3
1Nicole Halliwell, DSc, OTR/L, is Assistant Professor, Department of Occupational Therapy, Monmouth University, West Long Branch, NJ, and Occupational Therapist, Kid Clan Therapy Center, Clifton, NJ. At the time of this study, Halliwell was Doctoral Student, Rehabilitation Sciences Program, College of Allied Health, University of Oklahoma Health Sciences Center, Oklahoma City, and Occupational Therapist, The Phoenix Center, Nutley, NJ; n.halliwell.dsc.otr@gmail.com.
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.
Related Concept Videos
01:19Autism Spectrum Disorder
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
01:15REM Sleep Behavior Disorder
RBD is significantly associated with...
01:24Substance Use Disorders Affecting Sleep
Understanding the concepts of physical dependence,...
01:26Modeling in Therapy
Participant Modeling
Participant modeling involves therapists demonstrating calm and effective behaviors in...
01:18Nightmares and Night Terrors
Nightmares...
01:27Restless Leg Syndrome and Night Terrors
The exact cause of RLS is not fully understood, but it is believed to involve dopamine, a neurotransmitter that helps regulate muscle movement. Imbalances in dopamine levels...