There are many ways in which the challenges of the COVID-19 pandemic – including disruptions to routines, social isolation, and inability to access healthcare services – have been particularly difficult for people with autism. Although many people in the autism community have stepped up to make adjustments and help others adapt to the current crisis – including, most recently, shifting the International Society for Autism Research’s annual conference to a virtual gathering – the pandemic is still presenting significant challenges, particularly for individuals living in group homes or other similar facilities.
Separation from friends and family has become a pronounced difficulty for adults with autism living in group homes. For the safety of all residents and staff, many facilities have had to drastically reduce or eliminate in-person visits. Families have had to adapt to seeing their loved ones through windows or from their cars in order to maintain appropriate social distancing. These measures, although necessary, have led to increased social isolation for individuals with autism, who are already at a greater risk for feelings of loneliness, anxiety, and depression than the general population. Additionally, these changes disrupt their routines, which can be especially stressful for those who don’t understand why the changes are taking place. Judith Steuber, the mother of two sons with autism, discussed in an interview with Atlanta PBS the difficulty she has had not being able to convey to her son, Jeremy, why she can’t come visit him, saying, “It just breaks [my] heart to think that he would think we’ve left him somewhere.”
Conversely, many people with autism are dealing with increased fear and stress around the possibility of infection, especially those with comorbid OCD or anxiety disorders. Many people with autism have also had to miss out on important therapies due to the pandemic, and even when therapy can take place through telehealth, many group home residents need significant assistance accessing these resources. With staffing already spread thin due to the extra demands of COVID-19 and the workers themselves falling ill, therapists such as Jill Fodstad have noticed their clients failing to show up to their online appointments.
Additionally, even though social distancing measures can often be put in place for family visits and healthcare appointments, the daily support that many people with autism need puts them in close contact with caregivers on a day-to-day basis. As Peter Berns, chief executive officer of The Arc, said in an interview with Spectrum News, “direct support work is up close and personal…It’s not done at a distance of 6 feet or more.”
Understanding these risks, many disability rights groups have been advocating for more accountability measures for these facilities. According to DisabilityScoop, new regulations have begun requiring nursing homes to “be more transparent with residents and families and report any cases of COVID-19” to the Centers for Disease Control and Prevention. Disability organizations in the Long-term Services and Supports Task Force of the Consortium for Citizens with Disabilities are asking that these requirements be extended to apply to group homes and similar facilities for people with disabilities. The Autistic Self-Advocacy Network (ASAN) has created an online database intended to keep track of all reported deaths in disability housing across the United States, and currently estimates that there have been more than 18,000 caregiver and resident deaths at these facilities.
Despite these challenges, families are still finding ways to connect with one another and adapt to the pandemic. Researchers are adjusting their studies and continuing their efforts to improve quality of life for people with autism. Advocacy organizations are working together to push for better recognition and accountability of these issues at group homes, as well as other important issues in education and public health.