The novel coronavirus (COVID-19) has disrupted society on a global level, with countless families sheltering at home in hopes of staying safe and slowing the spread of the virus. Even as the United States begins to gradually reopen, it is clear that this virus will continue to have massive economic, social, and emotional impact on U.S. citizens. These disruptions affect everyone, but not equally. Individuals with autism and their families face additional challenges in this time of crisis. With the abrupt shifting of therapeutic services, school, and work to at-home settings, and the pressure that families are feeling to stay safe and keep food on the table, COVID-19 has made it much more difficult for families with children or other loved ones with autism to maintain a sense of normalcy and safety.
Many families have experienced severe disruptions in therapies and services for their children with autism, with families of children under the age of five reporting the greatest level of disruption. A large proportion of surveyed adults with autism report moderate to severe disruptions to their social lives, home lives, and employment status. Further, many independent adults with autism also responded that their mental health had been moderately to severely impacted by COVID-19. These effects appear to be felt most by adult women with autism. A survey of 377 respondents found that as many as 27% reported severe mental health struggles related to COVID-19, as related to 14% of male respondents.[i] Given these discouraging trends, it is clear that individuals with autism are likely to need a great deal of support from their families throughout this crisis. Here are 4 ways to support your family member in quarantine:
1. Establish a Care and Support Network
For families of children with autism, there are numerous ways to help children adjust to this unfamiliar new reality. First, establishing a network of care and support is crucial. This can include educators, therapists, and family members and friends outside the household. Having a “team” who looks after and supports your family is critical for morale and therapeutic help. Regularly communicating with this group, and finding ways to incorporate it into one’s life, can provide an individual with autism a feeling of support, safety, and care. It is also vital to have such trustworthy contacts given the possibility of a parent or care provider contracting COVID-19. The greater the support network a family has, the better the chances that they can reestablish a sense of normalcy and comfort for their children.
2. Reestablish Therapeutic Services
Reestablishing a child’s therapeutic services in a socially distanced or remote setting is of key importance. Many therapists and care providers are recognizing the need to transfer to a remote care model for the time being, with telehealth services and remote therapy options becoming more widespread. Taking advantage of these services requires a great deal of patience and flexibility on the part of both children with autism and their families. Regular communication with care providers and educators is essential for distance learning, remote therapy, or care sessions to be successful. This can require a dialogue between educators, therapists, and parents to understand the successes and challenges a child is experiencing. Families and care providers must be willing to adapt to what works, what doesn’t work, and how to modify a child’s environment to suit their unique needs. Helpful strategies can include teaching via a child’s preferred activities, utilizing online educational resources, being willing to take breaks when a child is overwhelmed, establishing a unique physical learning space in the house, encouraging a child with positive reinforcement, and finding out what type and duration of educational sessions works best for your child. Writing for the Doug Flutie Jr. Foundation for Autism, Ellen Fitzpatrick, M.Ed. expands on these ideas and offers more in a helpful post on Distance Learning.[ii]
3. Create a Sense of Structure
A common stressor for individuals with autism during COVID-19 is the upheaval of a familiar, comfortable structure to daily life. Creating a new sense of structure can be a first step towards getting back on track. One of the best ways to do this is via the creation of a schedule. Even a loose schedule outlining when school sessions or therapy appointments occur can be a useful tool. Schedules can also be more detailed, depending on the needs of the child. This could include a more structured day where meals, chores, or appointments all have their place. It is important, however, to allow for play and for breaks, since an overly rigid schedule may induce more unwanted stress. Scheduling social activities with the family, such as a cooking session, a group walk, or a fun game night together can break up the day for children and parents, help children adjust to their new schedule, and give them something to look forward to throughout the day.
4. Prioritize Socialization
For teenagers and adults with autism, prioritizing socialization and care are crucial. Independent adult family members with autism may be struggling with employment or their social lives, so directing them to helpful resources such as the U.S. Department of Labor’s Resources for People on the Autism Spectrum is advisable. Beyond that, setting up regular remote or socially distanced visits to catch up, or to watch a favorite movie together, can be helpful. Simply checking in regularly on how a family member is coping can also reassure individuals that they are being thought of and supported. Encouraging or participating in activities like exercise, meditation, or cooking healthy meals together, along with passing along valuable mental health resources, can help independent adults with autism address the emotional issues that have arisen from this crisis and help them to reduce stress, anxiety, and health issues. Above all else, making yourself available and making it clear that you are open to supporting and talking with your family member when they need you throughout this crisis is invaluable.
Supporting your family member with autism throughout the quarantine period is profoundly important. In a time where virtually everyone is feeling a sense of anxiety, upheaval, and fear, taking the time and energy to reach out to, comfort, and connect with a struggling family member is one of the most worthwhile things we can do. For more resources on how to cope with and keep family and loved ones safe throughout the COVID-19 crisis, please see the Autism Society of America’s COVID-19 toolkit.