Understanding the unique ways the pandemic affects individuals with autism and how to help
A Conversation with Geraldine Dawson, PhD
William Cleland Distinguished Professor, Director of Duke Institute for Brain Sciences and the Duke Center for Autism and Brain Development
Could you tell us about your research?
My research has focused on developing methods for early detection and treatment of autism spectrum disorder (ASD) and understanding brain function and development in individuals with autism.
The COVID-19 pandemic is causing unique challenges for people with developmental disabilities, such as those on the autism spectrum. Can you explain those challenges? What are strategies that caregivers and people with autism can use to help them cope during this challenging time?
People with ASD and other developmental challenges thrive on routine, such as riding the bus to school or work, carrying out familiar activities, working with the same teacher or job coach, and eating the same foods every day. The coronavirus pandemic has abruptly disrupted all of these routines without warning or preparation as daily activites and supports suddenly became unavailable. It is often extremely difficult for families to provide appropriate education for their child with ASD at home, especially when a child or adult is used to a high level of daily support by professionally-trained people. Adults with ASD may experience high levels of anxiety when their routines and daily supports are removed.
Another challenge is that it can sometimes be hard to explain to an individual with ASD why this is happening because many have limited communication skills. As a result, for the person with ASD, the world has been turned upside down with little understanding of why this is happening. The result is many will experience anxiety, frustration, and sadness.
There are a number of things parents and other loved ones can do to support a child or adult with ASD during these stressful times. It’s important to explain why this is happening using communication methods that are appropriate for each person. Use simple language and visual supports (“social stories”) that explain the facts of what a germ is, how to wash your hands, and what will be the new routine. It’s helpful to provide daily structure and routine. Schedules and predictability help everyone feel safe and secure. Limit scary media exposure and avoid screen time in the evening because it can disrupt sleep. Be sure to include activities every day that are enjoyable and can reduce stress. This can be music, outdoor activities, or art – anything that is relaxing and fun. Exercise is a great stress reducer. Be watchful for signs of anxiety and depression, such as withdrawal, disrupted sleep, lack of appetite, or reduced interest in activities previously enjoyed. Finally, if you are a caregiver, be sure to take care of yourself. Take breaks, schedule enjoyable activities, talk with others about your feelings, and be kind to yourself when you feel irritable or don’t live up to your own expectations. Reach out to family, friends, other caregivers, and professionals for support.
Do you have any other advice for individuals with autism and their families?
Fortunately, there are many resources and toolkits on line for caregivers and adults with ASD. These resources include strategies that caregivers of young children with ASD can use to promote social and language skills, coronavirus social stories, suggestions for activities at home, how to respond to challenging behavior, among many others. These resources can be found at the Duke Center for Autism home page. We are updating these resources for caregivers and adults with ASD on a regular basis.
It can be especially difficult for caregivers of newly-diagnosed young children with ASD who are eager to get started on intervention for their child. They know that it’s important to start intervention as soon as possible. I am pleased that we recently made publically-available, free of charge, a series of online modules that coach caregiver in how they can deliver intervention to their child at home. This online resource is based on the Early Start Denver Model, a well-validated early intervention for young children with ASD. Information about how to access this resource is on the Duke Center for Autism website.
Are there are other resources during the pandemic that would be helpful?
These are hotlines that can be called for more information and help:
- NC Coronavirus Helpline provides information about the virus and guidance on what to do if coronavirus is suspected (open 24 hours, seven days a week): 866-462-3821 or text VIRUS to 336-379-5775
- COVID-19 Triage Plus Helpline for COVID-19 questions and how to locate care regardless of insurance coverage or lack of coverage (open 7:00 a.m. to 11:00 p.m., seven days a week): 877-490-6642
- Hope4NC Helpline 24/7 provides mental health supports: 855-587-3463
- Hope4Healers Helpline 24/7 connects care professionals to people who can provide support: 919-226-2002