It took a pandemic: Perspectives on impact, stress, and telehealth from caregivers of people with autism.
Susan W White, Laura Stoppelbein, Hunter Scott and 1 others
PMID 33730684WHAT IT FOUND
Caregivers of children with autism reported that loss of daily structure and difficulty with emotion regulation were the biggest stressors during pandemic shutdowns.
While many families found telehealth helpful for continuing care, it was often less effective for children with significant communication challenges.
Key findings
01The most significant contributor to stress was difficulty with emotion regulation and coping, which every caregiver rated as at least a partial stressor.
02Nearly half of caregivers identified the disruption of daily structure and routine as the primary challenge faced during the pandemic.
03Among the 29 caregivers who used telehealth, experiences were mixed: some valued service continuity, but others found it less effective than in-person care, particularly for children with social communication difficulties.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was small (n=70) and predominantly white (82.9%), limiting generalizability. Data were collected at a single time point during the early pandemic, capturing only a brief window of experience. Caregivers reported on their perceptions of their child's stress, rather than the child's firsthand experience. The survey did not distinguish between types of telehealth services (e.g., speech therapy vs. mental health counseling), so findings may not apply equally to all disciplines. No data were collected on socioeconomic status or community resilience factors, which likely influence access to and experience of telehealth.
Declared interests
The authors declared no conflicts of interest. The study was not funded by a commercial entity.
The easy way to misread this
Do not assume telehealth is equally effective for all children with ASD. The study found that none of the nonverbal children in the sample switched to telehealth, and caregivers of children with social communication difficulties reported it was less effective. This suggests potential inequities in access or suitability for children with severe communication impairments.