The COVID-19 epidemic is causing stress for many families as we all seek to create new and supportive home routines, while wrestling with the challenges of staying physically and mentally healthy and productive. Especially vulnerable are children and young adults with autism, as they are not receiving the everyday services typically provided in their schools.
A team of experts came together, fired by the realization that these children and young adults — along with their parents and caregivers — would need help. Many of us have years of experience helping families supporting individuals with autism. We knew these families would need help.
The team is connected through their ongoing autism-related projects housed at the Frank Porter Graham Child Development Institute (FPG) and includes FPG staff members Victoria Waters, Ann Sam, Jessica Steinbrenner, Yolanda Perkins, Becky Dees, Brianne Tomaszewski, Nancy McIntyre, Mary White, Sara Nowell, and Sam Odom. The team also included Susan Szendrey of UNC’s Department of Allied Health Sciences and Lindsay Rentschler, a doctoral student in the School of Education’s Applied Developmental Science and Special Education program.
The toolkit we put together — “Supporting Individuals with Autism through Uncertain Times” — contains seven strategies designed to help parents and caregivers meet the unique needs of individuals with autism during this period of uncertainty.
Since we published the toolkit on March 16, UNC graduate students in speech language pathology are in the process of translating it into Spanish and autism-support organizations around the world have taken it and translated it into Japanese and Polish, with translations in the works for Chinese, Italian, Swedish, and other languages. It truly has gone global — all made possible because we had a team of experienced professionals who came together to respond to a clear need.
Following are the strategies we designed. For each of them, the online toolkit contains more detail, examples, and ready-made resources to help individuals adopt the strategies at home.
1. Support understanding
Describe the virus, the epidemic and your individual situation in concrete terms, avoiding flowery language and euphemisms. Though stark-sounding, phrases like “The coronavirus is a type of germ. These germs are very tiny, and when they get inside your body, they can make you sick,” may be easier for individuals with autism to understand.
Use visual cues to demonstrate changing rules, such as how we greet each other and maintaining distance. Use visual cues to break down the steps of new expectations.
Offering visual cues such as a calendar to clarify the passage of time may be helpful, as individuals with autism may have trouble perceiving the passage of time.
2. Offer opportunities for expression
Children and young adults will likely have difficulty expressing how they feel about the many unexpected changes. Consider providing multiple opportunities for family members to express their feelings as they are able, such as through family and individual discussions, writing activities, movie making, or play.
Support alternate forms of expression such as the use of alternative communication through tablets or pictures, listening or playing music, dance, yoga, and various visual art forms.
Recognize that an increase in challenging behaviors may be an expression of anxiety or fear.
3. Prioritize coping and calming skills
Ideally, individuals with autism already have some coping and calming strategies in their repertoire of skills to use during their most anxious times. These may include rocking in a rocking chair, listening to music on headphones, deep breathing, watching a preferred video clip, brief periods of vigorous exercise, or accessing a favorite activity or material.
Caregivers can support the teaching of these skills. Find times of day when the individual with autism is calm to initiate discussion about coping and calming skills. Create a concrete and visual routine to support the use of these strategies, such as use of many available calming apps and the calming routines available in our toolkit.
Physical activity and exercise is a proven strategy to reduce anxiety symptoms with the broader population, as well as with individuals with autism.
4. Maintain routines
Work to maintain established routines where you can. Routines can provide increased comfort for individuals with autism and may allow them to better express their feelings related to the changes.
Try to stick to sleep and wake schedules, and routines around household chores. Expanding the use of a visual schedule — such as a calendar posted on the refrigerator or a list of chores — may help facilitate participation in activities at home and reduce anxiety.
5. Build new routines
It may be necessary to create new routines during this time, as there are many new demands of caregivers in this new situation.
Transitioning off screens after an extended period may be difficult. Establish a clear, consistent, and concrete routine for this transition. Use visual cues such as a visual timer or countdown, which may be helpful for individuals with autism to see how much screen time remains.
Offer choices. Creating regular opportunities where family members have a voice about what happens and when it happens can serve as an effective anxiety-reducing strategy and a communication tool. These choices might include the route for the nightly walk, meal options, order of activities for the day, and/or preferences for activities.
Create a work space with a to-do list. Individuals with autism may have difficulty using the strategies and skills they used in the school environment to the home environment. It might be helpful to establish a designated workspace to help clarify expectations and reduce distractions.
6. Foster connections (from a distance)
Individuals with autism are more susceptible to social isolation and loneliness, and this may be exacerbated by quarantine conditions. Individuals with autism may need more explicit facilitation to ensure that social connections continue.
Caregivers may need to check in to ensure social contact is continuing via text or direct messaging, and/or build in opportunities for daily social contact via technology with family, friends, neighbors, teachers, or others.
7. Be aware of changing behaviors
Individuals with autism may not be able to verbally express their fear, frustration, and anxiety.
Caregivers should be alert for signs of anxiety and depression. These may include a change in sleeping or eating patterns, increases in repetitive behaviors, excessive worry or rumination, increased agitation or irritability, or decreases in self-care.
If these behavior changes are observed, additional support from mental health and/or medical providers such as a family doctor, therapist, psychologist, or psychiatrist may be warranted.
These strategies are intended to be a menu of ideas that may be helpful. Caregivers may take one idea at a time and find a way to make it work for their children with autism and their family.
Consider involving the individual with autism in the decision-making process about what tools would be most helpful.
The toolkit: Supporting Individuals with Autism through Uncertain Times
About the author
Kara Hume, PhD, is an associate professor in the UNC-Chapel Hill School of Education and a faculty fellow at the Frank Porter Graham Child Development Institute. She is the director of the National Clearinghouse on Autism Evidence and Practice and has worked with children and young adults on the autism spectrum for almost 30 years.