World Autism Day was celebrated around the world on April 2nd, albeit in less public spaces. Just as it has for the last few years, the Twitterverse was particularly active, with the hashtag #autismawarenessday tweeted thousands of times in support of those on the spectrum.
This year, of course, many #autismawarenessday tweets were also focused on another, more somber topic, COVID-19. While many COVID-focused tweets encapsulated the goals of autism awareness day by sharing helpful links and online resources, many also highlighted the challenges that people with autism and their families may be facing during this pandemic.
Why might people with autism be particularly affected by COVID-19? For a bit of background, autism is a neurodevelopmental condition that affects an estimated 2.5% of individuals (Kogan et al., 2018). Though commonly diagnosed in early childhood, many adults are now also receiving diagnoses later in life, and thus prevalence continues to rise every year.
Autism is a complex condition that can have a profound impact on many areas of an individual’s life. As the saying goes, once you have met one autistic person, you have only met one autistic person. Still, many individuals share similar characteristics, including sensory sensitivity, social and communicative differences, and a preference for routine and certain interests. These characteristics can make life during the pandemic particularly challenging.
For instance, COVID-19 has, of course, upended normal schedules and activities. We can no longer rely on public transportation, we must cue for groceries, and we are unable to leave the house when we please to go to a favorite pub or see a friend over the road. For people with autism, this may be particularly distressing as routines are relied upon to make the world predictable and comforting (Larson, 2006). Additionally, there are pressing anxieties in relation to the possibility of infection of both us and those around us. As people with autism are significantly more likely to have clinical levels of anxiety and experience OCD related symptoms (van Steensel et al., 2011), the current fear of infection and an increased emphasis on handwashing and social distancing can compound existing stressors.
Finally, while social distancing is difficult for us all, it may be particularly isolating for those on the spectrum. Research suggests that many adults with autism already experience higher levels of loneliness and may have less social contact than those without autism (Mazurek, 2014). They're also more likely to have clinical depression (Ghaziuddin et al., 2002). School closures may also be particularly difficult for children with autism, as research shows they in particular benefit from social inclusion during instruction and extracurricular activities where they can learn socially from other children (Harper et al., 2008).
So, what can help? Well, many of the steps that people with autism and their families can take are ones that would benefit us all during these uncertain times. First, while COVID has disrupted our previous routines, we can create new routines that reduce uncertainty and maintain productivity. For younger children with autism who may need support in conceptualizing these new routines, a number of organizations have made visual charts for families to help create new home routines, teach children about safe behaviors like hand washing and social distancing, and explain why the virus has changed our usual way of life (see links below).
Adults with autism can also benefit from creating new structured routines for working and socializing at home rather than in person. For more generalized anxiety over COVID, it can be helpful to limit exposure to the news, to keep up with friends and family members over the phone or email, and to do stress-reducing activities like meditation or exercise. Online playdates and scheduled time to meet online with family and friends can be an important way to stay connected. Even spending time with pets can be a big help.
And as always, it is important to know that whatever you are going through, you are not alone. Autism.org.uk is sharing the stories of people with autism and how they are coping. Resources like wrongplanet.org and Reddit sites r/autism and r/aspergers are forums for people with autism to share their experiences and connect with others who are also dealing with the realities of the pandemic. Reflecting not only on how things are different, but how they can be improved, is a good first step for us all.
In these last few weeks of April, when we celebrate autism acceptance and awareness, let’s keep in mind how we can support, even from a distance, those who may need that support the most.
Ghaziuddin, M., Ghaziuddin N., & Greden, J. (2002). Depression in persons with autism: Implications for research and clinical care. Journal of Autism and Developmental Disorders, 32(4), 299-306.
Harper, C. B., Symon, J. B. G. & Frea, W. D. (2008). Recess is time-in: Using peers to improve social skills of children with autism. Journal of Autism and Developmental Disorders, 38(5), 815-826.
Kogan, M. D., Vladutiu, C. J., Schieve, L. A., Ghandour, R. M., Blumberg, S., Zablotsky, J., Perrin B., Shattuck, P., Kuhlthau, K. A., & Harwood, R. L. (2018). The prevalence of parent-reported autism spectrum disorder among US children. Pediatrics, 142(6), e20174161.
Larson, E. (2006). Caregiving and autism: How does children's propensity for routinization influence participation in family activities? OTJR: Occupation, Participation and Health, 26(2), 69-79.
Mazurek, M. O. (2014). Loneliness, friendship, and well-being in adults with autism spectrum disorders. Autism, 18(3), 223-232.
van Steensel, F. J. A., Bögels, S. M., & Perrin, S. (2011). Anxiety disorders in children and adolescents with autistic spectrum disorders: A meta-analysis. Clinical Child and Family Psychology Review, 14(3), 302-317