For People With Autism, Lockdowns Shatter Routine, Heighten Anxiety

For people with autism, lockdowns have shattered the routines they rely on, deprived them of specialist education and therapy, and heightened already high levels of anxiety. Parents are dealing not only with concern about the effect of all that on their children’s well-being but also the strain of particularly difficult home schooling.

Soon after New York City went into lockdown, Carolyn Nagler took her 15-year-old autistic daughter out for a walk. “Restaurants were closed, shops were closed, and she became very agitated, asking, ‘What is happening, why is this happening, when is it over?’ ” Ms. Nagler says.

On their own

Autistic children can thrive at school because of the clear structure and routines schools provide. That’s hard to fully replicate at home, and many children also need specialist education and physical therapy that parents can’t provide. Routines outside school also have collapsed, like a weekly visit to a swimming pool that is now closed or seeing an elderly relative who is currently in quarantine.

When Maria Villa told her autistic son that his school in New York City was closing, he threw himself to the floor, screaming, scratching at her and tearing at his clothing for over an hour.

Ms. Villa’s two autistic children and Ms. Nagler’s daughter are all at NYC Autism Charter Schools, which runs state-funded schools in East Harlem and the Bronx. The schools have set up online learning programs, often with one-on-one instruction. But that doesn’t work with every pupil. Ms. Villa’s son, for instance, has a fear of cameras, making it hard to do such courses.

The Autism Society of America says its website, telephone helpline and online teaching tools have been inundated by tens of thousands of parents who say they are overwhelmed by having to home-school their children.

Unlike with the NYC Autism Charter Schools, some parents found their children’s schools had no provision for home schooling. “We saw fundamentally that here was no game plan, and there is still no game plan, on how to help these kids,” says Julian Maha, who lives in Birmingham, Ala.

That left Dr. Maha and his wife, both medical doctors who also run an autism charity called KultureCity, to come up with an education plan for their son. But there is no substitute for some things. The weekly swim that had always been on Tuesday at 3 p.m., not a minute later. The horse ride every Wednesday and Friday at 3 p.m., exactly.

The key for Dr. Maha is keeping his 12-year-old out of his bedroom, which has become a refuge.

“If you don’t keep them engaged, then they will lose that skill set,” he says.

Ms. Nagler is also concerned that her daughter may lose some of the language skills and conversational etiquette that others take for granted. “I see that slip happening already, that if she isn’t routinely practicing these skills and being social, she will start to fold back into her own world,” she says.

Worries about anxiety

Research suggests that if parents can help their children maintain those skills at home, all but the most severely autistic children shouldn’t regress any more than other children during lockdowns.

Experts are concerned, though, that one effect of the pandemic could be greater mental illness among autistic children and adults, who studies show already typically suffer from higher levels of anxiety than most people.

“Anxiety is about fears of the unknown, not being able to control your situation,” which coronavirus and the lockdowns are amplifying, says Simon Baron-Cohen, the director of Cambridge University’s Autism Research Centre.

Prof. Baron-Cohen says the pandemic may lead to higher instances of anxiety disorders, like obsessive-compulsive disorder, among autistic people, though he believes it is too early to make firm predictions.

Kathryn Gibbs, 23, is autistic and has always had problems with anxiety. As coronavirus spread she worried so much that she stopped grocery-shopping, rationing what food she had for two weeks until her work colleagues discovered she was doing this and one of them persuaded her to restock.

Having struggled with mental-health issues all her life, Ms. Gibbs is concerned she will relapse, noting how she now obsessively washes her hands.

“The social isolation is hard to cope with,” she says. “Anxiety is a barrage of thoughts that you can never seem to turn off, there is no off.”

Mr. MacDonald is a Wall Street Journal reporter in London. He can be reached at alistair.macdonald@wsj.com.