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Autism Spectrum and Developmental Disorders

It’s almost like his whole life has just been put on hold: Parent reports of unique challenges faced by autistic adults and their families during the COVID-19 pandemic

(PS4-22) it’s Almost Like His Whole Life Has Just Been Put on Hold: Parent Reports of Unique Challenges Faced by Autistic Adults and Their Families During the COVID-19 Pandemic

Friday, November 15, 2024

1:00 PM – 2:00 PM EST

Location: Franklin Hall, Level 4, Marriott Downtown

Author(s)

KH

Kyleigh M. Hricak, B.S.

Research Associate
Drexel University
Philadelphia, Pennsylvania, United States

Co-Author(s)

Ad

Ashley de Marchena, Ph.D.

Associate Research Professor
Drexel University
Philadelphia, Pennsylvania, United States
MH

Molly Helt, Ph.D.

Assistant Professor of Psychology and Neuroscience
Trinity College
Hartford, Connecticut, United States
BM

Brenna Maddox, Ph.D.

Assistant Professor of Psychiatry
University of North Carolina at Chapel Hill
Chapel Hill, North Carolina, United States

Abstract Text: The COVID-19 pandemic disrupted essential services, especially for traditionally underserved and underrepresented communities such as autistic adults and their caregivers, who already experienced access barriers. Autistic adults often have complex mental healthcare needs; therefore, it is likely that this population was disproportionately impacted by service disruptions. Using a qualitative approach, our goal was to understand the experiences of parents caring for their autistic adult children during the pandemic. Autistic individuals tend to live with their families into adulthood longer and at higher rates than non-autistic adults. This innovative project focused on parent perspectives for three reasons: (1) to characterize family experiences as a whole, (2) to include experiences of autistic people unable to participate in interviews themselves, and (3) because caregivers of autistic adults are a vulnerable population themselves. We conducted semi-structured, open-ended telephone interviews with 20 parents of autistic adults, who were living with their adult children at least 50% of the time during the first year of the COVID-19 pandemic in the United States. Parents ranged from 39-65 years old and 80% were female (20% male). Adult children ranged from 18-34 years old and 20% were female (75% male; 5% non-binary). Transcribed interviews were subjected to thematic analysis. For the purpose of this analysis, we focused on themes related to parent-reported changes in resource availability and quality, and parent and child mental health status during the pandemic. Parents described many negative impacts associated with the pandemic such as loss of resources and support for both parent and child: “the biggest stressor is… is the loss of support.” (P46). Many described changes in their child’s mood and the resurgence of distress behaviors, including self-harm: “He just hits his head a lot, he doesn’t sleep, he tries to make himself throw up” (P6). Additionally, parents reported increased concern for their adult child due to the pandemic’s impacts on resource availability and quality, such as increased emotional dysregulation and fear of lost education progress: “I am worried about the regression that she’ll take from her schooling and advancements” (P8). Some parents reported that their child’s disability resulted in a unique experience for them during the pandemic, such that their wellbeing was contingent on their child’s wellbeing: “If she’s stressed, I’m stressed. If she’s good, then I’m good” (P10). Parents also reported feeling like their child’s disability status caused an elevated level of concern about health and safety during the pandemic. This study reveals the reality of resource quality and availability for parents caring for autistic adult children during an international health crisis. Listening to the perspectives and experiences of caregivers can help us understand how services should be improved to better assist autistic adults and their families in general and during challenging times. The perspectives and experiences of stakeholders can, and should, be used to inform future service development and delivery to better accommodate and support the communities they serve.