Psychological distress among caregivers raising a child with autism spectrum disorder during the COVID-19 pandemic.
COVID-19 doubled psychological distress in parents of autistic children—screen caregiver mental health at every contact.
01Research in Context
What this study did
Faught et al. (2021) ran an online survey in the first months of COVID-19.
They asked parents of autistic children about worry, sleep, and mood.
Answers were compared to national parent norms from the same weeks.
What they found
Parents of kids with ASD reported twice the overall psychological distress.
They also showed almost triple the rate of hyper-arousal symptoms.
The gap was larger than any seen in pre-pandemic caregiver studies.
How this fits with other research
Before COVID, Cohrs et al. (2017) already saw 2–3× higher depression odds in these parents.
Gregory et al. (2020) pooled older data and found about one in three caregivers had clinical anxiety or depression.
G et al. now show the pandemic doubled that baseline hurt.
Shepherd et al. (2021) surveyed New Zealand parents the same year.
They found parenting stress, not child symptoms, drove mental-health scores.
Together the two surveys act as conceptual replications across continents.
Dimitrova et al. (2025) looked at the same UK cohort and found higher family resilience linked to fewer behavior problems and lower distress.
Their data do not contradict G et al.; they simply highlight protective factors while G et al. quantify the damage.
Why it matters
Caregiver distress can stall home programs and increase child problem behavior.
Add a two-fold surge during crises and your treatment plan is at risk.
Start every assessment with two quick questions: “How are you sleeping?” and “Who helps you recharge?”
If answers flag strain, pause parent training, offer respite referrals, and schedule a follow-up mental-health check before the next skill acquisition goal.
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02At a glance
03Original abstract
The COVID-19 pandemic may disproportionately impact parents of children with autism spectrum disorder (ASD). Loss of services and supports, heightened fears about increased infection rates, and disruption of daily routines likely adversely affect the well-being of children with ASD and their families. The goal of this study was to examine differences in psychological distress-as defined by symptoms of anxiety, depression, loneliness, and hyperarousal-between parents raising a child with ASD and parents in the US as a whole during the early stages of the pandemic (March-April 2020). Parents raising a child with ASD (n = 3556) were recruited through SPARK, a national ASD research registry, whereas a representative sample of parents in the US (n = 5506) were recruited from the Pew Research Center's American Trends Panel. All data were captured via online surveys. Descriptive statistics and multivariable logistic regressions examined psychological distress at the item and summary score level. Parents of children with ASD reported higher levels of overall psychological distress (48% vs. 25%; aOR = 1.60, 95% CI: 1.32, 1.84, p < 0.001). Hyperarousal, or feelings of panic when thinking about COVID-19, was particularly prevalent among parents of children with ASD compared to parents in the US (25% vs. 9%; aOR = 2.38, 95% CI: 1.83, 3.07, p < 0.001). Findings highlight the importance of considering the policies and practices that contribute to poor mental health in parents, particularly those raising a child with ASD, to ensure mental health services remain accessible. LAY SUMMARY: This study examined the mental health of parents raising a child with ASD during the early stages of the COVID-19 pandemic. Results demonstrated substantially higher levels of psychological distress, particularly those related to feelings of panic, among parents raising a child with ASD when compared to parents in the US as a whole. These data suggest the need for ensuring mental health services are accessible to parents, particularly those raising a child with ASD, during and after the pandemic.
Autism research : official journal of the International Society for Autism Research, 2021 · doi:10.1037/0022-006x.51.5.730