- Stay-at-home orders can be particularly challenging for people living with autism.
- Right now, autistic individuals could be facing emotional distress at the changes brought forth by the COVID-19 outbreak.
- While sheltering-in-place, they may be finding it harder to do daily tasks and facing more stress than normal because the daily routine they rely on has been disrupted.
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Like most parents, Megan Hufton has been sheltering-in-place with her two young sons, AJ, 10, and Asher, 8, as the current COVID-19 outbreak sweeps through the nation and world.
Both of her sons are autistic and nonverbal. During the lockdown, she’s been making sure they pivot between Zoom video lessons from their school and 8 to 10 video therapy sessions a week.
Of course, it’s been hard for their family.
For Hufton, a single mom who lives with her sons in a town just outside Madison, Wisconsin, the life changes brought about by COVID-19 were unexpected and immediate.
Both boys attend a special education school with Applied Behavior Analysis (ABA) therapy, speech therapy, physical therapy, and occupational therapy services. Her sons also visit an outpatient therapy clinic for speech therapy, occupational therapy, and eating therapy.
Suddenly, the normalcy of that routine was upended.
On one Friday, her sons walked out of their school doors thinking they would be back the following Monday. That evening, the state’s Governor issued an order closing down K-12 schools. The clinic they visit shut down just 2 days later.
“It’s been a unique challenge, especially for my younger son, who is 8. He really, really craves routine, he loves school, he loves therapy. My older son does, too, but is more ‘go with the flow,'” Hufton told Healthline.
“It’s been really hard for my younger son,” she said. “He has a speech device, and every night when we get ready for bed, he asks about school. I have to say ‘no, it’s closed.'”
Autism spectrum disorder (ASD) is a diagnosis that refers to a range of neurodevelopmental disorders. The condition manifests itself differently person to person.
Some might have difficulties with communication or social skills, they could have problems expressing themselves, or they could have trouble reading other people’s feelings and emotional cues, according to the
Essentially, there’s no uniform experience that defines people on the autism spectrum. This means, just as with the wider population as a whole, COVID-19 has impacted everyone differently.
Zoe Gross, director of operations at Autistic Self Advocacy Network (ASAN), a nonprofit advocacy organization run by and for autistic individuals, said that a lot of autistic people right now could be facing emotional distress at the changes brought forth by the outbreak.
It might be harder to do daily tasks, a person might be facing more stress than normal, or could even be dealing with self-injury or aggression if they get overwhelmed by that stress, she added.
Shifts in routines is another big issue.
Hufton’s family, for instance, is like everyone else’s in that COVID-19 has turned life completely upside down. These shifts can be especially difficult for autistic people, some of whom rely on set routines.
Donna Murray, PhD, CCC-SLP, vice president of clinical programs and head of the Autism Treatment Network (ATN) at Autism Speaks, and Adjunct Associate Professor of Clinical Pediatrics at Cincinnati Children’s Hospital, said a lot of autistic people find a level of comfort in the familiar, which adds order to each day.
“Depending on developmental levels, the difficulty of understanding why a routine is disrupted, how long it’s going to last, wondering when it’s over — all of that adds a lot of unknowns. It can add anxiety,” she told Healthline.
Murray added that this is a relatable problem for all people. We all adhere to schedules of different kinds. Given that experiences for autistic people vary greatly, there’s no set universal list of recommendations.
Some people may need to craft a new schedule and routine that fits their current lifestyle in lockdown. This could be written schedules or lists of daily activities.
“Not every hour needs to be filled, but it could help for some people to segment out their days. Could be things like getting up at a certain time, getting dressed, brushing your teeth, making your bed, having breakfast at a certain hour, and then fitting in work or school work, following that up with a break,” she suggested.
Gross said that if a person has difficulty processing written information, then a visual schedule could be helpful.
“I just want to reiterate that not all autistic people feel the need for there to be strict routines,” she added.
One thing she wanted to add is the stress that can be caused by this new way of life.
“There is an element of stress that comes in not having the logistical information, not just in things like if you don’t have the food you need, but also not knowing when or how this current situation will end,” Gross said.
“For a lot of autistic people, that logistical uncertainty is itself a source of stress. Of nailing down these uncertain things that are causing that stress,” Gross said.
James Adams, PhD, a President’s Professor at Arizona State University, where he leads the Autism/Asperger’s Research Program, said that autistic adults share the concerns of the larger adult population when it comes to loss of income and jobs.
Adams, who has an adult daughter with autism, explained that many adults with autism have high risks for stress, anxiety, and depression, which all can be elevated during the current public health crisis.
“There are ways to give some sense of normalcy — there are ways you can use new activities to replace old ones in your life. If you go bowling, for example, you can do bowling at home with a Wii,” he told Healthline.
Some of the adjustments to daily life, like adhering to handwashing or processing the enormity of what the COVID-19 pandemic even is, can be hard for people on the spectrum who have an intellectual disability, Adams added.
Gross said another challenge for people in the autistic community centers on those who once lived independently now losing that agency. They might have lost their home, or find themselves being put in a group facility, like a nursing home — “a congregate setting that puts their health at greater risk.”
She stressed that every state has a federally funded protection and advocacy agency.
Gross said people who find themselves in this position should seek the help of these advocates.
She also advised that contingency plans should be in place. Rather than go into a group housing facility during COVID-19, an autistic person who was living independently could consider having a friend or relative on call who they could shelter with while the outbreak runs its course.
Last year, Gwen Vogelzang and her son Rylan, 13, co-authored and published — with the assistance of co-illustrator Ellie McLaughlin — the book, “If I Squeeze Your Head I’m Sorry.”
It’s a picture book that uses Rylan’s illustrations to help shed light on what it’s like to see the world from the perspective of a young autistic boy who also lives with Tourette syndrome.
Gwen and her husband Tim, who live in Grand Rapids, Michigan, adopted Rylan and his younger sister Reagan, 9, when they were both babies.
She told Healthline that Rylan falls on the more “high-functioning” side of the autism spectrum and would most likely have been said to have Asperger’s syndrome in the past, back when it was considered its own separate diagnosis from ASD.
Vogelzang added that, while Rylan has some anxiety difficulties, “intellectually, he tests off the charts [and is just] in seventh grade currently living his best life.”
However, COVID-19 has put that life up in the air.
“Rylan only lives in the moment, it’s not possible for him to step outside of that moment — it’s an incredible blessing and incredibly difficult. He is not thinking ahead to ‘oh my gosh, this is another three weeks, more months, where I’m not going to see a friend or going to school — he is only in the moment,” Vogelzang said.
What the current COVID-19 crisis has done has put a lot of pressure on the shoulders of parents like Vogelzang and her husband. She said they have to now sustain a schedule and routine that will help their son and his sister, who has dyslexia, thrive.
“The pressure on us is extremely high,” she added.
It’s something Hufton can relate to. Both mothers said that they’re worried about some of the developmental regression their kids might experience by being home in quarantine for a sustained period of time.
“In the past with my boys, I’ve found they regressed twice as much as their typical peers. During Christmas break, for instance, it might take a couple of days for other kids to get back on track after time away, for my boys, it takes a couple of weeks — it’s a lot of pressure on me,” she said. “Right now, I’m not focused on expanding skills but keeping them where they’re at.”
She stressed that she’s had a supportive school system and outside therapists who have been maintaining video lessons and appointments, but the onus is still on her as a parent to replicate the kind of structure that would be found in more traditional school and therapy settings.
“There are a lot of things, even aside from the academic goals, where I’m very fearful (of them) regressing,” Hufton said.
Murray said that from her experiences, caregivers and loved ones of autistic people are the “experts” about those they care about.
She said the challenge for loved ones who find themselves sheltering-in-place with autistic people is that everyone has different strategies for how best to normalize their own home environments at this time.
It means a parent of an autistic child might have to improvise and think a little outside the box of how best to approach school work.
The spouse of an autistic adult might find themselves helping their partner through anxieties while cooped up in a small city apartment.
In other words, this current time brings unexpected challenges for everyone.
Unfortunately, not all families and loved ones are supportive.
Gross added that a serious issue is a person sheltering-in-place with a domestic abuser. She said autistic people are at higher risk of abuse by partners or family members and if someone finds themselves staying with an abusive person, they should go through a local advocacy channel.
There are always resources like the National Domestic Violence Hotline to turn to.
Outside of the worst-case scenarios, Gross said some autistic people find themselves sheltering with people who might just not have common knowledge about their needs and might provide insufficient support.
This is an area where Gross, Murray, and Adams all agreed: community matters.
They said support groups, online video chats, or local organizations centered on autistic people are all sources to help build community peer support during an undoubtedly confusing, traumatic time for many.
Both Hufton and Vogelzang mentioned how positively their children responded to peer video chats while they shelter from COVID-19.
Vogelzang said her son is missing social interaction and she can “see some of the digression in his social-emotional behavior.” She schedules FaceTime calls where he can see his friends.
Vogelzang said it’s important that parents and loved ones, who find patience running low and stress skyrocketing high during a time of quarantine, exercise empathy.
“Celebrate them rather than tolerate them,” she said, of autistic loved ones.
“As cliche as it sounds, take one day at a time,” Hufton added. “I think you have to remember that it is all new for all of us right now — we are all learning and all figuring this time out.”