Addressing the Needs of the Autism Community During COVID-19
April is Autism Awareness Month, and this April’s observance comes after a particularly challenging year with the coronavirus (COVID-19) pandemic. As I noted in my last Director’s Message, the effects of the pandemic are especially challenging for the most vulnerable, including those on the autism spectrum and their families.
One immediate concern is the particular health risk that the COVID-19 pandemic may pose for some autistic individuals. Some emerging data suggest that individuals with developmental disorders or intellectual disabilities are much more likely to contract COVID-19 than other people. They also have a much higher risk of dying from COVID-19. As many individuals on the autism spectrum may also have one of these other diagnoses, the increased health risks warrant urgent attention.
In addition, the health and safety measures put in place to mitigate the impacts of COVID-19 can be particularly disruptive for autistic individuals. Many people on the autism spectrum often prefer highly predictable environments and routines and may experience distress or difficulties with changes to familiar structures and preferences. Physical distancing, restrictions on activities, new telework arrangements, and the shift to virtual learning can cause significant disruptions to daily routines, changing an individual’s physical and social settings. Each of these changes can create challenges for individuals with autism and their families. Autistic individuals with co-occurring mental disorders may experience even greater distress due to the pandemic, as having a pre-existing psychiatric disorder is associated with an increased need for support during exposure-related quarantine and also with worse mental health outcomes after quarantine.
Among caregivers of autistic individuals, disruptions to therapeutic services during the pandemic are a major concern. Parents of autistic children in the U.S. who had greater service needs before the COVID-19 pandemic report greater stress due to disrupted therapeutic services, financial difficulties, and illness during the pandemic. In the United Kingdom, limited access to mental health services, relapse or further deterioration in mental health, and over-prescription of medication are major concerns identified by the broader intellectual and developmental disabilities population during the COVID-19 pandemic.
Autistic adults also face disproportionate impacts from the pandemic. The Simons Foundation Autism Research Initiative (SFARI) supported and published a non-peer-reviewed survey on the impact of COVID-19 on autistic adults. The findings revealed that 93% of the 636 respondents reported that COVID-19 has negatively impacted their mental health. The most common symptoms expressed were feelings of depression and anxiety around COVID-19-related disruptions. A total of 41% of the respondents identified services and therapies as a part of their life most disrupted by COVID-19, and 97% of the respondents indicated their services and therapies have been negatively impacted by COVID-19. Yet the findings also show signs of resilience: 72% of the respondents indicated they are coping moderately to completely well with changes in services and therapies, and 50% of autistic adults included in the survey indicated they felt good or excellent overall.
Despite challenges in maintaining mental health and well-being during the COVID-19 pandemic, some autistic individuals have adapted existing supports, services, and daily routines while staying engaged in activities that facilitate positive physical and mental health. For example, a case study with a sample of nine autistic adolescents and adults from a day center in Italy described a pivot from indoor exercise routines to outdoor walks. This simple change helped them adapt to the restrictions imposed during the pandemic and maintain engagement in physical activity.
Other adaptations may take more work. Research suggests that increased participation in physical activity, decreased screen time, and adequate sleep may help mitigate autistic individuals’ feelings of stress and anxiety related to the COVID-19 pandemic. However, a preliminary analysis of health behaviors among a small cohort of autistic adolescents in the U.S. indicates that they engaged in less physical activity and more screen time during the pandemic, pointing to the need to develop approaches that encourage adaptive coping behaviors among individuals with autism.
It is clear that individuals with autism and their families have been deeply impacted by the pandemic. At the National Institute of Mental Health (NIMH), we hope that we can apply findings from ongoing NIMH-funded research to help the autism community meet the challenges of COVID-19 and beyond.
Learn more in the upcoming NIMH webinar, “The Federal Response to COVID-19: Addressing the Needs of the Autism and Disability Communities.” The public webinar will take place Wednesday, April 28, 2:00-4:00pm ET and a recording will be available after the event. You can find more information about speakers, topics, and how to register on the webinar event page.
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