What does autism awareness mean in the context of a pandemic? How are we processing the new reality of social distancing and home schooling knowing that addressing autism requires intense social interaction as well as structure? How do we cope with losing much needed individualized services for children who are navigating the challenges of being on the spectrum? During this truly disruptive time, the world has taken a sharp turn, and for children and families of children on the spectrum, this turn has been particularly more troubling.
What is the impact of COVID-19 on children and families?
A recent study conducted by Dr. Wendy Chung at the Simon’s Foundation examined the impact of the COVID-19 outbreak on families and children with autism. Chung assessed 8,000 families, 98 percent of which reported that schools are closed. This translates into loss of services for 63 percent of families, including discontinuation of therapy: in school (84 percent), at a professional clinic (52 percent), in person at home (26 percent), administered by a caregiver or parent (15 percent), at a daycare (7 percent) or at a residential program (6 percent).
Chung found that a portion of families has transitioned these services to online learning (35 percent), however almost half (48 percent) of families find that their children are making only moderate gains, and the majority of families (97 percent) feel that the loss of services and therapies has had a negative impact on their child’s behavior.
All if this becomes an emotional and mental strain for families and children.
Specifically, Chung found that 82 percent of families report that COVD-19 has had a negative impact on their child’s mental health and emotional well-being. For parents of children on the spectrum the stress is omnipresent. While 51 percent are doing well, almost all families (97 percent) report that they are stressed or overwhelmed by the disruption in services and therapy. Moreover, 95 percent report that COVID-19 has had a negative impact on their own mental health.
How can parents help their
children on the spectrum during
the COVID-19 pandemic?
Chung assessed the interventions that parents believe are most effective for their children. Parents report a variety of techniques including social stories, relaxation/breaks, tele-health visits, cooking, hobbies and spending time in person and virtually with family.
Along these lines, parents may also want to consider creating a calendar that includes some new opportunities for their children. For example, there has been a significant increase in the number of offerings for online classes in the arts, exercise and sports as well as options for online books. Social stories can be incorporated to help transition children to new activities. And, while social distancing is required, families can spend time outdoors and children can learn new skills such as how to ride a bicycle. Household chores (e.g., folding laundry, taking out the trash, putting away dishes) are also essential learning opportunities, especially for children on the spectrum who require deliberate learning and practice to be independent.
How can parents manage their own stress and mental health?
While families adjust to juggling household responsibilities, work and home school, the added stress of losing services is significant. An unusual amount of unstructured down time at home can lead to regression and behaviors that result in emotional strain and disappointment for parents. The following are some suggestions for coping with stress:
Manage strong emotions
Parents require time for themselves to manage strong emotions. When emotions run high find a quiet place in your home to take a few deep breaths prior returning to a stressful situation. Set aside 15 to 20 minutes for deep breathing, an online-guided relaxation video, online yoga class, a book or time to
sip hot herbal tea.
Make a schedule
Creating an hourly schedule can serve as a buffer against stress. Each evening create a daily schedule for your child and for yourself. This schedule is not just for school, work or chores; it can also be used to ensure that you incorporate much-needed breaks for you and
for your child.
Use social supports
Social distancing does not have to mean a loss of social support. Thanks to technology we have ways to access friends and family face-to-face even if it is not in person. Keep a list of friends and/or family who are supportive and make time in your daily schedule to reach out to them, even if you don’t think you need it.
While there will be challenges each day, take time in the evening to write down one positive thing that happened. This could be related to yourself, your child or even the weather. One way to savor something positive about the day is to take a photo in the midst of something good happening.
Have fun with your child
It is most important to make time for fun. It can be easy to lose site of the opportunities that being at home with family can bring. Family game nights or movie nights and time together telling jokes, being silly or dancing to music can bring a smile to everyone’s face.
We are certainly in unusual times. During this Autism Awareness Month families and children on the spectrum are asked to once again enlist the resilience and strength that they have relied upon on since their initial diagnosis.
Alison Gilbert, Ph.D. is a Licensed clinical psychologist. She is currently a clinical assistant professor at Hofstra Northwell School of Medicine with a certificate in Autism Spectrum Disorders from U.C. Davis. She has a private practice working with parents of children with special needs located in Roslyn.