Lessons from the Autism Community During the COVID-19 Pandemic

By Helen Genova, PhD, Assistant Director, Center for Neuropsychology and Neuroscience Research, and Amanda Botticello, PhD, MPH, Assistant Director, Centers for Spinal Cord Injury Research and Outcomes and Assessment Research, Kessler Foundation

Last spring, students emptied their desks and lockers and walked out of their schools not knowing when they would be returning to their classrooms. Overnight, parents found themselves needing to juggle work and home responsibilities while simultaneously organizing their children’s educations. Educators found themselves needing to completely rethink their lesson plans, and how they would be able to administer classes over Zoom.

These significant changes that took place in homes across the globe caused stress for families. However, families of children with autism faced unique challenges. After a year of speaking with parents, therapists, educators, and young adults with autism, we now are getting a clearer picture of what the pandemic was like for the autism community. Below are the ‘Lessons We Learned’ this year, from the research we conducted at Kessler Foundation, as well as meaningful conversations we had with members of the autism community.

1. The Disruption to Daily Life was Intense and Distressing

While many dealt with significant changes to their lives during the COVID-19 Pandemic, children with autism may have felt significantly anxious about these disruptions. “During the pandemic, we saw a huge increase in stress levels, especially for parents and kids with special needs like autism,” reports Dr. Matthew Giangrante, family care physician at Vanguard Medical Center in Cranford, NJ. “It has been an incredibly difficult time for families.”

Anxiety and stress in autism can take the form of severe behavioral changes. According to the research conducted at Kessler Foundation, parents reported their children experiencing regression in a number of areas, such as academics and behavior. Further, children with autism may have experienced increased reliance on electronics, increased stimming behaviors, and worsened sleep. In children with severe stress levels, parents have reported increased aggression, depression, and “melt-down” behaviors.

2. Virtual Schooling can be Difficult for Children with Autism

While virtual schooling was an adjustment for all children, parents of children with autism felt at times that virtual learning was nearly impossible. “Children with autism benefit from in-classroom supports, such as one-on-one aides, that are provided through their Individualized Education Plan (IEP). Once the pandemic hit, those supports disappeared overnight,” describes Dr. Regina Peter, co-founder and director of the Newmark School in Scotch Plains, NJ. While the Newmark School was prepared for virtual learning due to a consistent use of technology in class even prior to the pandemic, Dr. Peter realized that many children with autism spectrum disorders across the country were struggling. “Losing academic or behavioral supports, and then needing to attend class via a computer screen was almost impossible for some kids,” she notes. “Lots of families have been dealing with their children not being able to pay attention to their classes, becoming overly stressed during virtual learning, or just refusing to attend virtual classes entirely.”

According to research conducted at the Kessler Foundation, almost 50% of parents of children with autism reported that their child was falling behind in school (compared to 24% of parents of neurotypical children), and 60% of parents of children with autism were fearful that their child was ill-prepared for the upcoming school year. “We really need to examine how to help children with autism who may have fallen behind this year,” emphasizes Dr. Peter.

3. Social Isolation was Harmful

Because children were unable to physically be with their friends, many parents used their creativity to provide virtual or socially distanced experiences to remain connected to friends, such as virtual playdates, online gaming, and drive-by birthday parades. However, more than 50% of parents of children with autism felt their children were left out of virtual social situations compared to only 18% of the neurotypical group. The lack of opportunity to socialize may have resulted in even worse consequences. Among parents of children with autism, 75% felt that their child regressed socially due to the pandemic, and almost 80% reported feeling concerned by how socially isolated their child was during the pandemic. 

“In my therapy center, we saw kids that were so genuinely lonely and wanting to connect with others,” describes Jennifer Pacht-Goodman, founder and owner of Jammin' Jenn Music Therapy for Children in Watchung, NJ. Jennifer, “Jammin Jenn” as she is known to her clients, realized early on that she needed to quickly figure out how to treat her clients online. “During the pandemic, when stress levels were at their highest, and children were at their loneliest, I knew I needed to figure out a way to connect to kids even more,” reports Jennifer, who initiated virtual music therapy sessions with clients, and offered free music sessions on Instagram to anyone who wanted to come and spend time with others. “I could see that spending time with someone who was truly engaged with them was really helpful for kids with autism – they needed that.”

4. Some Found a Silver Lining

Not all consequences of the pandemic were negative. According to our research, some parents reported being able to spend more quality time with their children. While children with and without autism reported feeling sad to be away from friends, parents of children with autism reported that their children felt some relief to be home, away from social pressure. Spending time at home may have given kids more time to read, be outdoors, and explore new interests, such as cooking or art.

“At our school, we found that virtual clubs such as ‘cooking club’ were really popular this year,” reports Dr. Peter. “I think having more time to be home gave families time to explore new interests that they could do together. That was one of the positive consequences of pandemic restrictions.”

Looking Ahead:

With the spring now in full swing, and the end of the school year looming ahead, many parents are worried that the pandemic has left their child with long-lasting negative consequences. Parents are wondering whether their child will ever be able to regain what they lost, or to “catch-up” with their peers. Experts say there are a number of steps they can take that may help address some of these concerns.

1. Summer Camps May Provide Important Opportunities for Catch-Up

Summer camps have always been a wonderful way to provide structured time for social activities for children with autism. This year they may provide even more than that. “Summer camp is a wonderful opportunity for kids with autism to get back some of what they lost in the last year,” says Robyn Tanne, director of Harbor Haven, a therapeutic summer camp in West Orange, NJ. “Camps can work on the issues parents are worried about, such as social and academic skills, but do so in fun way by incorporating activities such as sports, swimming, crafts and more.”  Therapeutic camps such as Harbor Haven are geared toward children with autism, and therefore may be an excellent opportunity for families to consider. An added benefit is that many activities can be done outdoors, which have been deemed to be safer according to scientists. “The great thing is, in the past year we’ve learned a lot about the coronavirus. It’s important for parents to know that summer camps can offer the safe experiences that are so desperately needed right now,” emphasizes Robyn.

2. Communicate with your Child’s Support System ASAP

If you are concerned about academic, behavioral, or social regression in your child, especially related to school, it is time to make an appointment with your child’s case manager or principal. “IEP goals can be updated to reflect the concerns parents have about losses during the pandemic,” advises Dr. Peter. “Don’t wait to communicate these concerns to the child study team. Act now so school staff can come up with a plan.”

This is also true for your child’s therapists and other providers. “Talk to us, and tell us your concerns,” urges Dr. Matthew Giangrante. “There are many ways we can help you and your child, but we need to know from you what the concerns are.” The best way to get assistance is to speak with health care professionals immediately.

3. Self-care is Important for Everyone (children and caregivers)

For both parents and children, practicing self-care is critical to maintaining mental health. Self-care can take many forms, including therapy. “Therapy, such as Music Therapy, is so important right now. We all have these feelings inside us from the past year: grief, anxiety, anger, sadness… therapy helps us process them and work through them,” claims Jennifer Pacht-Goodman.

For others, self-care may be simpler. A walk outside, calling a friend, or even seeing one if you both have been vaccinated, can help make this time a little easier. Also, recognizing that they are not alone can be very helpful for families. Research at Kessler Foundation confirms findings in the medical and scientific field that indicate that the autism community has been severely impacted by the last year. Hopefully, this growing information will shed light on how we can help individuals who were most impacted, as well as ways to avoid problems in the future. “I think knowing how hard this was for families, especially those with special needs, will help us prepare how to best serve these families in the future,” offers Dr. Peter.

4. Focusing on the Light at the End of the Tunnel.

“As the vaccine roll-out continues, we are all realizing that this situation will not last forever,” adds Dr. Giangrante. “We anticipate seeing cases decline in the next few months so that parents and children can get some return to normalcy back, including in-person activities.” While the return to normalcy can feel slow at times, families can finally begin to look forward to the better times ahead.

Interested in joining an autism research study? Complete this survey to see if you qualify: https://redcap.link/AutismResearchAtKesslerFoundation.

To hear more lessons learned from the pandemic, listen to Dr. Genova’s podcast.