Parental Perceptions of Service Access for Transition-Aged Youth With Autism During COVID-19

Meghan M. Burke, W. Catherine Cheung, Chak Li, Leann DaWalt, Jordan Segal, Julie Lounds Taylor

Research output: Contribution to journalArticlepeer-review


Services are critical for youth with autism spectrum disorder (ASD), especially during the transition to adulthood. Under the best of circumstances, though, it can be difficult to access needed adult services. With COVID-19, services were more difficult to obtain and retain. In this study, we explored parent perceptions of accessing new services and maintaining current services during the first year of the COVID-19 pandemic. Structured interviews were conducted with 65 parents of transition-aged youth (aged 16-26) with ASD living in three states (IL, TN, and WI) in the United States. None of the participants reported receiving new services during the pandemic, and many struggled to access services via online applications. In addition, participants reported that service suspensions and changes in modality (e.g., from in-person to telehealth) were spearheaded by professionals and not families. Participants, especially those in TN, were more likely to pay out-of-pocket for services during the COVID-19 pandemic to compensate for service disruptions. Implications for research and practice are discussed.

Original languageEnglish (US)
Pages (from-to)369-381
Number of pages13
JournalIntellectual and developmental disabilities
Issue number5
StatePublished - Oct 2022


  • COVID-19
  • autism spectrum disorder
  • parents' perceptions
  • service access
  • transitional youth

ASJC Scopus subject areas

  • General Medicine


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