Autistic kids lose therapy, parents face isolation due to COVID-19

Families of children with autism are parting ways with their therapists as social distancing becomes a more vital tool to manage COVID-19.

It's left Mark Dineen and his family with a hard decision to make in the coming week. 

His son Andrew, 7, is autistic; a "pretty high-needs guy," as Dineen puts it, and social distancing means there's a day coming in the not-so-distant future when he's going to have to tell his son's one remaining therapist not to come in.

In a normal week, Andrew spends his mornings at home with one of two Applied Behaviour Analysis therapists who alternate days of the week. The afternoons are spent at public school.

Earlier this month, the two therapists were given the choice to continue the work, or not "no penalty or judgment," said Dineen. "One decided to come in, the other decided to stay home."

That was fine for awhile, he said, but now that all but the most essential workplaces are shutting down they're having to re-evaluate the situation.

"She's got another family she's continuing to work with, and I hate the idea of overreacting but I know that if we under react we're going to regret it a lot more."

Noticing changes in son's progress

But putting off a few weeks of therapy has consequences: you can't just pick up where you left off, says Dineen.

"The critical thing with this therapy, is you can think of it like pumping water into a vessel that lets it out slowly. As we're giving the therapy we're topping it up all the time, but as soon as we stop, it starts running out. That level starts going down," explained Dineen. 

An example is the way Andrew asks for things. At this point in his therapy, he's moved past guiding his father over to what he wants and is expected to use his words. 

"He's supposed to now be able to come up and say: 'I want (noun),' We're doing our best to continue practising these skills, but you can definitely see the difference as time is going by, as he is getting less exposure, that he's more willing to just grab your hand."

Janet McLaughlin's family is also noticing behavioural changes. Her son Sebastian, 8, is also on the spectrum, and she's spent much of the last week and a half solo-parenting him and her 5-year-old daughter while her doctor husband is working the front lines of COVID-19.

Parenting a child with autism during an unprecedented medical emergency like this one is uniquely difficult, says McLaughlin.

"He is really high needs. I can't even go for a walk with the two kids because he is prone to running away. He doesn't understand social distancing. He doesn't understand hand hygiene. For example, he would run up to someone's house, touch their doorknob then immediately touch his face. It's really been very isolating," said McLaughlin.

Up until last week, Sebastian had three therapists, who would trade off spending four hours a day working on his skills — in addition to speech and language therapists and a weekly music therapist.

Now, there's no one.

A parent, not a therapist

"He doesn't take well to me being the therapist in his life. He doesn't want to do anything that I ask. Things he would normally do for his therapist, like work on his writing or whatever skill, he's blatantly refusing for me," she said.

McLaughlin said he had been developing good routine; Sebastian was opening up to a few more foods — an issue the Dineen family deals with as well — but now he's rejecting those foods.

"Apples and mangoes — now he won't eat those. Basically the therapists were like my troubleshooters. Every time he would develop a new rigidity, which he develops all the time, they would help him through that," she said.

"It can take months to re-integrate those foods again."

Both families say they don't know what the future will look like without these therapists in their sons' daily lives. It's something they've fought hard for in the last year as the Progressive Conservative government made changes to the way the Ontario Autism Program was funded in the province.

"For a lot of autism families it's already been a really hard year of worrying about losing therapy. And then all of a sudden — we've lost it. And there was no transition," said McLaughlin.