COVID-19 survey reveals widespread challenges for autism community and wider disparities for minority communities

A survey conducted in April by Autism Speaks – the first autism-specific survey to include a broad minority population - found that families of autistic children and adults were significantly impacted by the coronavirus pandemic across several areas of life, including more food and housing insecurity. 

Nearly 500 people responded to the survey, distributed to autistic people and caregivers who interacted with Autism Speaks in the past, with 84 percent indicating they were somewhat or very affected by the pandemic. 

“The responses to this survey overall confirmed that the autism community is experiencing many of the struggles seen across the country, compounded by the challenges of caring for and often educating a family member with autism,” said Andy Shih, senior vice president of public health and inclusion at Autism Speaks. “When we looked further into the intersection of COVID, autism and racial disparities, we found that minority families in the autism community are struggling even more, particularly with basic needs.” 

Minority respondents, who made up about half of the group surveyed, reported more struggles with a variety of needs related to the pandemic, basic needs, daily routines and education. 

The largest disparities were in the areas of food insecurity and receiving distance learning supports, with nonwhite respondents experiencing twice the food insecurity of white respondents and twice as likely to not receive any distance learning supports. Food insecurity was measured as food for the household having run out and families not having enough money to buy more.  

In addition, minority respondents were 1.5 times as likely to report difficulty teaching their family member with autism how to comply with new COVID public health measures such as social distancing and mask-wearing. 

They were also 1.5 times more likely to be worried that someone in their family would contract COVID. 

Autism Speaks acted quickly as the pandemic unfolded in the U.S. by developing, collecting and distributing no-cost resources to autistic adults and families affected by autism, as well as for health providers and educators navigating telehealth and distance learning. 

“Every team at Autism Speaks – and in the broader Autism Speaks volunteer community – came together to respond to incoming requests fielded through our Autism Response Team, social media and partners in research and advocacy,” said Autism Speaks President and CEO Angela  Geiger. “With this more detailed look into the needs of our community, we can take an even more specific approach to developing resources and tools to support these needs as the pandemic evolves.” 

By far, the most common difficulty for caregivers during the pandemic has been a need for resources to manage challenging behaviors that have increased due to disruptions to routine, school closings and lack of access to in-school supports. 

In response to the survey results, Autism Speaks is taking action to meet the needs of the community in the primary areas: 

Distance learning supports 

• Advocating for dedicated special education funding to support autistic students in federal coronavirus relief bills, including IDEA (Individuals with Disabilities Education Act) funding and technology supports 

• Twenty-five state advocacy webinars for families and autistic adults to navigate state-level policies around IEPs, telehealth and health care access 

• Developing and distributing resources/videos to manage disrupted sleep routines, support distance learning strategies and manage challenging behaviors that increased due to COVID, telehealth tip sheet for families and providers to prepare for and maximize telehealth visits,  

• Hosting Autism Treatment Network webinars to address telehealth diagnosis and treatment and problem-solve safe in-person re-entry to health and behavioral treatment services 

• Expanding provider training curriculum to address COVID issues facing families, including education and challenging behavior management 

Teaching autistic children and adults about public health measures including PPE 

• Developing and sharing resources on hygiene routines, mask-wearing and other mitigation strategies specifically for people with autism 

• Translating relevant resources into Spanish 

• Hosting family, educator and professional webinars and trainings on developing new routines and best practices for COVID risk management and related medical issues 

Food and housing insecurity 

• Supporting the provision of in-person education for children with autism when it is safe to do so. With the return to school, children in need will also have increased access to free and reduced-price meals distributed through public schools 

• Advocating for emergency funding exceptions (under Appendix K, a state mechanism to temporarily modify Home and Community Based Services rules) to provide additional flexibilities and supports, including food and meals to Medicaid waiver recipients  

• Developing additional food access resources specific to the autism community and connecting our community with existing local food and housing resources through our Resource Guide and Autism Response Team 

COVID-19 risk 

• Sharing public health guidance and developing other resources around increased risks to autism population, testing guidance and prevention 

• Continuing to advocate for family and medical leave protections for employed caregivers to care for family members who contract COVID-19 

• Developing comprehensive community resilience resources for the autism community around emergencies, crises and natural disasters, including public health emergencies 

Find all of our COVID-related resources at autismspeaks.org/coronavirus.