By Lisa Jo Rudy
Medically reviewed by Jonathan B. Jassey, DO
While the reality of the novel coronavirus (COVID-19) is tough for many people to process and handle, it’s particularly difficult for both children and adults with autism and their caregivers. Fortunately, there are tools and resources available to make it a bit easier to get through stressful and disruptive times.
Why people with autism are likely to struggle
Almost every aspect of shut-downs and quarantines can undermine the systems that autistic people and their caregivers have set up. For example:
- Disrupted routine: For people with autism, routine and consistency are absolutely essential. Even the most ordinary changes in routine (a school assembly, a surprising change in the weather) can be upsetting. COVID-19 has caused massive changes in everyone’s routine, including an end to school, day programs, and supported employment—and that can make life extremely challenging for people on the spectrum.
- Therapy challenges: Most people with autism participate in multiple forms of therapy: speech, occupational, physical, social, behavioral, and/or psychological. While it is possible, in some cases, to continue therapy online, there are many instances where this is simply not possible. Reasons can range from the practical (poor internet connection) to the personal (difficulties with comprehension or behavior).
- Dietary challenges: Many people on the spectrum are unusually picky about the foods they eat. They may eat only a handful of foods or only specific brands. During this crisis, it can be tough to get into a grocery store, let alone find a specific brand of a specific food. Lack of familiar foods can be unusually stressful for people with autism.
- Limited contact: People with autism rely on their relationships with specific teachers, therapists, relatives, and caregivers. During this healthcare crisis, access to those individuals may be limited or non-existent. This can lead to an increase in stress and behavioral problems.
- Lack of interaction: Some people with autism are living in settings outside the home (group homes, for example), and, as with nursing homes, these settings are now considered to be “off-limits” to family members. Lack of interaction with familiar people can be stressful for everyone.
Challenges for families with autistic members
When autistic family members are struggling with stress and anxiety, the people around them are likely to struggle as well. There are several reasons for this.
- Struggle to maintain routine: All people with autism need routine and consistency. This is hard (or impossible) to provide if you are stuck in the house, working from home, supporting other children’s education, or coping with illness.
- Trouble communicating the situation: It can be difficult to explain the COVID-19 pandemic to some people with autism who may have difficulty with receptive speech or may have intellectual disabilities.
- Lack of resources: While all children and parents are struggling with education at this time, it is particularly difficult for families with special needs to access the programs, instructional supports, and other resources to which they are entitled.
How to support your loved one with autism
It may be a while before your loved one with autism will be able to return to “normal” activities and daily routines. To live comfortably together, it’s up to parents and other family members to establish and maintain a lifestyle at home that works—or works enough—for everyone.
Help them understand what’s going on
Not every child or adult with autism can understand the details of a global viral pandemic, but the vast majority can understand the basics.
- Use Social Stories: Social stories are simple illustrated stories that can help people with autism understand and respond to social or societal issues. These organizations offer good online options:
- National Autism Association
- University of North Carolina
- Maintain Social Connections: If your loved one is accustomed to regular interactions with family, friends, or support staff, it’s important to maintain those connections online or by phone. While multi-person Zoom meetups may be tough for those with autism, one-on-one conversations or text interactions can be very important, not only as a way to stay in touch but also as a way to help them know their loved ones are okay.
- Teach Safety Tips: Be sure your loved one understands how to maintain proper hygiene through thorough, 20-second handwashing, covering their nose and mouth when sneezing, maintaining social distance, and wearing a mask when in public. If these measures are very difficult for them, consider staying away from stores and other group settings during this time.
Establish a routine
Most people, autistic or not, do best with an established routine and schedule, but it can be hard to enforce if it isn’t required for work or school. For people with autism, a routine can make the difference between a calm, pleasant home life and days filled with emotional meltdowns and outbursts. Routines don’t have to be complex, they just have to be consistent. For example:
- Establish regular mealtimes: Help your autistic family member notice when it’s time to prepare for, eat, and clean up from each meal. Use timers and alarms, if they are helpful, so your autistic family member knows what to expect and when to expect it. Do your best to offer familiar, favoured foods at this stressful time.
- Designate work time: If your autistic family member is school-aged, set aside relatively short periods of time (30 minutes to an hour) to focus on schoolwork. If they are an adult, consider assigning specific chores or projects that interest them—cleaning, cooking, folding, washing clothes, putting away dishes, etc. during these time periods.
- Stick to bedtime and wakeup time: Lack of sleep (or too much sleep) can be a serious issue for a person with autism. If you run into sleep issues, consider using the supplement melatonin.
- Designate time for fun: Pick certain times in the day for TV, gaming, and/or social media. Set alarms to mark the start and end of those times, so that they become part of the daily routine.
Provide calming resources
Many people with autism have sensitive sensory systems, and they may need a variety of tools to stay calm. They may also need help in maintaining their emotional centre. A few options include:
- Quiet space: If possible, allow your autistic loved one to retreat to a quieter room or other location when they feel stressed.
- Opportunities to stim: Stimming (rocking, flicking, pacing, etc.) is often a tool for self-calming. While these behaviours may be frowned on in school or in the workplace, they may be of great value right now.
- Physical exercise: Everyone needs exercise, and that includes people with autism. Consider taking family walks, playing backyard games, climbing stairs, dancing, or otherwise supporting physical activity with your autistic family member.
- Sensory resources: Often, people with autism receive “sensory diets” or activities from an occupational therapist. Now, those activities may be on hiatus—but that doesn’t mean they aren’t needed. Ask your child’s or loved one’s therapist how to maintain sensory activities using balls, bouncers, swings, blankets, or other resources you may have in your home.
- Consistent medication: If you’re accustomed to having someone else in charge of providing your child’s medication, remember that someone is now you. Be sure your child is taking his or her medication regularly.
If you have a school-aged child (under age 22) with autism, you have the right to tap into special education resources through your district. If you are not receiving appropriate support, don’t feel shy about contacting your child’s teacher, principal, or therapists.
A word from Verywell
As the caregiver for a person with autism during a pandemic, you are faced with an unusually challenging situation. That means you may need to take extra steps to ensure your own well-being, whether it’s a walk to recharge yourself, early morning meditation, asking for help, or doing your best to take it easy. As days stretch into weeks and even months, this period of time can feel endless. Know that this is not the case. While it may be tough for a period of time, things will get better!
This article was 0riginally published on verywellhealth.com.
Lisa Jo Rudy, MDiv, is a writer, advocate, author and consultant specializing in the field of autism.