April is Autism Awareness Month, although this April is quite different than the last. Many people’s lives — including those of individuals with autism and their families — have been dramatically altered by the coronavirus pandemic. Before coronavirus, I had written a Director’s Message focused on recent advances in autism genetics research. That will be coming later in the month. But first, I felt the need to address the challenges faced by individuals with autism and their families during this difficult time.
The coronavirus — and the subsequent response to slow the spread — has altered our lives, disrupting the routines, schedules, situations, and environments we’ve carefully crafted to help us learn, work, play, and grow. Individuals with autism, children and adults alike, often rely even more heavily on these structures. With social distancing requirements and shelter-in-place orders closing workplaces, houses of worship, schools, community centers, and more, many of the services people with autism rely on are no longer available. Changes in routine might lead some people with autism to experience increased anxiety or display disruptive or aggressive behavior; others may have trouble coping with the distress. Families and loved ones may also find it challenging to manage the additional stress brought about by changes in family routines that result from the coronavirus pandemic.
Like everyone, people with autism may experience anxiety caused by the uncertainty of our current situation and the disruption in comforting routines, sadness at the loss of social connectedness, and grief with the passing of friends and loved ones. But because autistic people experience social situations and changes in routine differently from many of us, we need to be aware that they may need extra attention and individualized support during this time.
Understanding how individuals with autism are coping with the pandemic is important. Fortunately, we’re already beginning to get some data. The Simons Foundation just published results about COVID-related impacts from a survey sent to participants in their SPARK (Simons Foundation Powering Autism Research for Knowledge) study. The SPARK study aims to collect medical and behavioral data from a group of 50,000 individuals with autism and their family members in the U.S. The results, based on the responses of 8,000 participants, are telling. Most respondents were parents of children with autism. The disruptions these families are experiencing are significant: Nearly all (98%) respondents reported that their children’s schools were closed, and 63% are missing key therapies. Only 42% said that their children with autism could understand information about COVID-19 “moderately” or better, possibly making it difficult for many children to understand why their daily activities are changing. Although most of the respondents said that their child was doing well overall, more than 90% reported worsened behavioral, mood, and/or anxiety symptoms. A second SPARK study survey, targeted at adults with autism, is currently underway.
There are resources to help. In particular, many federal agencies and organizations that support services for individuals and families affected by autism have rapidly set up webpages with information, ideas, and links to resources. The NIMH’s Office of Autism Research Coordination, which supports the Interagency Autism Coordinating Committee (IACC), has launched a Coronavirus Resources webpage that links to many of these resources, including sites with practical information on the virus itself, mental health resources, and resources people can use to address other specialized issues facing the autism community. The autism community has also been active in developing supportive resources. For example, Autism Speaks and the Autism Society both have organized online resources with practical toolkits for individuals with autism and their families to help them cope. Other groups, such as the Autism Science Foundation, have hosted podcasts to disseminate helpful information and online meetings for members of the autism community to discuss their concerns.
But what really works? Turning again to the SPARK survey, we have at least some ideas for parents who are caring for children or adults with autism. Taking breaks for rest and relaxation, telling stories, participating in hobbies, cooking for the family, spending time with family members both in person and virtually, and using technologies to connect with therapists and other caregivers were all mentioned as helpful ideas by survey respondents. These practices can also be helpful for independent autistic adults. In addition, autistic adults can access resources for assistance with coping with stress and anxiety, job loss or disruption, disruption in benefits, and management of physical or mental health conditions.
Finally, we have to remember that we are all in this fight against coronavirus, together. Therefore, this message is not only meant for those who have autism and their families and loved ones. All of us should recognize the additional challenges faced by individuals with autism and other disabilities, as well as their families and care providers. We should also be ready to reach out to those who may need extra support during this time. Remind them that they are not alone and that there are lots of ways they can get help if they need it.