How to Support Individuals with Autism during the COVID-19 Pandemic

In recognition of Autism Awareness Month, On the Pulse is shedding light on the COVID-19 pandemic and the impact it has had on children, teens, and young adults with autism spectrum disorder (ASD) and how we can support them through these uncertain times.

As a society, we often rely on routines. With the COVID-19 pandemic uprooting our daily activities, we are being challenged to adapt to what we’re considering the “new normal.”

This is an especially challenging time for those with autism. Routines are critical for individuals on the spectrum, as they thrive on structure and consistency.

In recent data from March 2020 released by the Centers of Disease Control and Prevention (CDC), autism now affects 1 in 54 children. According to the CDC, ASD is a developmental disability that can cause significant social, communication and behavioral challenges. Individuals often repeat certain behaviors and might not want change in their daily activities. Many also have different ways of learning, paying attention or reacting to things. Signs of ASD begin during early childhood and typically last throughout a person’s life.

James Mancini, a speech and language pathologist with the Seattle Children’s Autism Center, and Tammy Mitchel, program director of the Alyssa Burnett Adult Life Center, share ways individuals with autism and their families can cope during this unique time.

Communicate clearly and carefully

Many individuals with autism need predictability to manage their everyday lives with ease. The ‘stay-at-home’ orders issued by many states to help stop the spread COVID-19 have left many of these individuals with a sense of uncertainty and anxiety.

“While we all have our own routines that bring predictability and consistency to our lives, children with autism heavily rely on routines and can face difficulties adjusting to changes once a routine abruptly shifts,” Mancini said. “How to communicate those changes when there’s uncertainty of when it will essentially be over can be challenging for parents and caregivers.”

That is why Mancini suggests communicating with your child using plain, clear and concise language.

“Though it will vary depending on an individual’s unique strengths and weaknesses,” Mancini said. “It’s important that parents and caregivers take into account their child’s ability to process information when communicating to their child.  Having a script or social story prepared can be very helpful.”

A social story is a visual tool used to illustrate certain situations and problems and how people deal with them. They are aimed at helping individuals with autism develop predictable expectations, understand social norms and develop strategies of how to communicate during specific situations.

“Having a script or social story can assist us in honestly and directly telling a child that while we do not know when things will get back to normal, we are going to trust and listen to what the experts are telling us and follow the rules that our leaders have in place,” said Mancini. “Parents should not feel like they need to create these themselves. There are plenty of examples online.”

Also, assuring them that there are people out there working on this issue to get things back to the way they were can help bring some comfort.

“They should know that things like going back to school, seeing their teachers and therapists, visiting their grandparents and other familiar and routine activities will happen again, but we just don’t know when and that we need to listen carefully when our leaders say it’s safe to go out again,” Mancini said.

Also, remind them that we’re all in this together.

“Explain to them that this is happening to everyone, not just them,” Mitchel said.

Create predictability, establish new routines and stay connected

Establishing a new routine can be challenging, especially for an individual with autism.

Mancini says to start simple and incorporate family values.

“We can all do well with exercise,” Mancini said. “Go outside, but follow physical distancing rules by taking a walk or doing other outdoor activities as a family.”

He also says creating a consistent and predictable schedule by setting up a time for school work or chores, followed by free time either spending it with family or individually, can help.

In terms of screen time or use of technology, make it a family activity, says Mancini.

“There can be a difference between one’s personal screen time such as playing video games, watching YouTube videos, and screen time that can be family focused such as watching a movie together,” Mancini said. “Families can do both and it might be helpful to communicate that personal screen time might be used as a reward or a break or one’s ‘independent time.’ Family screen time should not be used as a reward but instead a fun family activity.”

Compared to young children and their families, young adults with autism face wider disparities when it comes to managing routines. Some parents and caregivers are a population at high risk for COVID-19 due to age which can make things challenging such as going outside and doing outdoor activities. Access to technology is another barrier that exists for many.

Unfortunately, COVID-19 has also left many young adults with autism without a job and nowhere to go.

“At the Alyssa Burnett Adult Life Center, we work hard every day to give young adults a safe place to connect with one another,” Mitchel said. “When they don’t have that, a sense of loneliness and isolation occurs.”

However, there are vast resources and opportunities available for this specific population of individuals with autism.

“We express to parents and caregivers that there are resources available that can help their loved one stay connected and maintain meaningful social connections,” Mitchel said. “We need to give them concrete examples of how to spend their time, and work to set up a schedule or routine to help alleviate further anxiety of the unknown.”

While social stories help, the team at Alyssa Burnett encourage young adults to stay connected through a variety of ways.

“While they can’t go to the center at this time, they can still talk to their friends on social platforms like Zoom or through social media,” Mitchel said. “We encourage our students to say ‘hi’ to each other by writing letters and sending notes in the mail or practicing safe online interactions. We also encourage online hangouts in a safe, facilitated way, and to take advantage of resources out there like checking out virtual museums, watching artist performances or playing online games with others. We all need something to look forward to so figure out what that is for each individual.”

To bring continuity to care, the behavioral team at the Alyssa Burnett Center is practicing telemedicine through Zoom, providing family and caregiver consultations to help bring routines into the home and offer structured activities.

Mitchel knows that it’s an especially difficult time for parents with young adults with autism, but that there’s a lot of resources that already exist, so they don’t need to reinvent the wheel.

“A message I would send to parents and caregivers is to be patient and recognize the vast network of support that’s available,” Mitchel said. “Everyone is navigating this in their own way, so have grace in adjusting to the new normal. It will be imperfect, but families need to know there’s a strong support system that exists.”

The team at Seattle Children’s Autism Center and Alyssa Burnett Adult Life Center are here to help families with children, teens and young adults in breaking down the barriers COVID-19 has put up in connecting with one another.

“We have an incredibility important job to take care of families in moments of crisis like this,” Mitchel said. “This experience will radically change how we organize our model of care, and if we continue to think differently and value the importance of human connection, we can get through this together.”