Strategies to support teens and young adults with autism spectrum disorder during COVID-19

The COVID-19 pandemic has been described as “the war of our generation.” Millions of families are bravely waging war on COVID-19 by rising to the many challenges of social distancing, including upended school and work routines, financial insecurity, and inability to see loved ones, all compounded by the uncertainty of how long this will last. These challenges are likely magnified for those with autism spectrum disorder (ASD). Features of ASD, including impaired social and communication skills, repetitive behaviors, and insistence on sameness, can make it very difficult to understand social distancing, express distress, and adapt to new routines.

What has the impact of the COVID-19 pandemic been on teenagers with ASD and their families?

Social distancing has created many new challenges for families caring for teenagers with ASD in the home. Many teenagers with ASD receive support services including special education, behavioral therapy, occupational therapy, speech services, and individual aides through school. Delivering these services virtually is a major challenge, particularly since many teenagers with ASD already have social and communication difficulties, limiting the utility of video chat. Parents are therefore finding themselves simultaneously expected to play the role of parent, special education teacher, and individual aide, all the while providing care for other children and juggling work-from-home responsibilities. Aggressive and self-injurious behaviors may also increase during this time of fear and uncertainty.

What about young adults who live in group homes?

Group home residents have been impacted by social distancing in several unique ways. First, many group homes across the United States have restricted visitors to legal guardians. For many, this means that they are not permitted in-person visits with parents. Second, group home residents are now no longer permitted to engage in their normal routines at day programs and work sites. Because of these restrictions, group home residents are now generally confined to their group homes, and social interactions are limited to ad hoc activities with other residents and staff members, often within the group home. Third, the disappointment of missing highly anticipated events such as outings and family holidays can be amplified for a person with a limited understanding of the pandemic, particularly for those with intellectual disability. Many individuals with ASD may even view these restrictions as punitive, increasing the risk of anxiety, depression, or behavioral outbursts.

Strategies to support teenagers and young adults with ASD during COVID-19

Educate teenagers about COVID-19. Since confusion can fuel fear and anxiety, it is important to educate teenagers and young adults with ASD about COVID-19 and social distancing. Exposure to COVID-19 through the media can be overwhelming and misinterpreted. The language used when discussing COVID-19 should be clear, direct, and adapted to the person’s cognitive ability. It may be helpful to use a visual aid. Many people also have misperceptions and catastrophic fears about COVID-19, so it can be helpful to ask directly: “What do you know about COVID-19?” and “What worries you most about COVID-19?” Allow the teenager or young adult with ASD to guide how much or how little he/she would like to know and when he/she would like to talk about it.

Keep the routines that you can keep. Routines are very important to people with ASD. While many of our routines have dramatically changed, there are also many routines and rituals that we can help keep the same, such as mealtimes, bedtime, and other schedules (for example, “I always call Grandma on Sundays.”).

Create new routines. It can be helpful to replace the activities that are no longer possible with new routines to help create a new normal. When possible, these routines should incorporate social connectedness, fun, and physical exercise (like family dance parties after dinner).

Practice old coping skills and learn new ones. This is the time to recall and remind the teenager or young adult of coping skills that helped him/her manage challenging situations in the past. These may include listening to familiar music, visual aids to bolster communication, engaging in hobbies, or talking with friends and family.

Increase communication. It is natural for parents and children to worry about one another, particularly when in-person contact is limited, as it is for those who live in group homes. Open and frequent communication between group home staff and family members about policies and practices to optimize infection control, as well as how residents are doing, can help alleviate these worries.

Plan something to look forward to. Since many spring events including vacations and family holidays have been cancelled, it can be helpful for families to plan delayed events or celebrations. Planning these events not only creates something positive for a family to look forward to, but they can also serve as a powerful reminder that this too shall pass.

Seek mental health services. If your teenager or young adult is having difficulty coping or is exhibiting increased aggression or self-injury, it is important to seek mental health services. Many clinics are continuing to provide care through telehealth, including talk therapy and medication management.

Teenagers and young adults with ASD can learn valuable life lessons

If teenagers with ASD are well-supported and socially connected during these difficult times, this period of social distancing may serve as a catalyst for personal development rather than a time of regression and loss of skills. If we engage with teenagers with understanding and good role modeling, we can help young people with ASD to tolerate uncertainty, accept what is beyond their control, and build their resilience and resources — things they can control.

Resources

Guide to Mental Health Resources for COVID-19, Massachusetts General Hospital Department of Psychiatry.

COVID-19 information, Center for Autism Research and Treatment, Semel Institute for Neuroscience and Human Behavior, University of California Los Angeles.

Coronavirus/COVID-19 Resource Library, American Academy of Child & Adolescent Psychology.