Parents of children with autism call on Quebec for more support during pandemic

Before the COVID-19 pandemic forced the shutdown of all non-essential services in Quebec, mornings for Fiona Cavanaugh and her family of five looked much like any other family's: wake up, have breakfast, brush teeth, go to school. 

But for Cavanaugh's five-year-old son James — who is at the severe end of the autism spectrum — that routine is paramount.

"James is, in a lot of ways, a typical five year old, just one that has a lot more rigidity around routine, and some higher needs," Cavanaugh said. 

Cavanaugh wants to see the province ensure that all health and social services on which special needs children rely are classified as essential, otherwise she says her son is at risk of experiencing significant long-term consequences, and possibly years of regression. 

She told CBC's Quebec AM school closures have already had an adverse effect on James. 

"This change in routine is hard to explain to him, because he just doesn't understand what is going on," Cavanaugh said. "For him, this change in routine is sort of like us not having any air to breathe. He relies on this for him to understand the world." 

James has primary language disorder: he is mostly non-verbal, and does not understand the use of language or its purpose, so Cavanaugh said explaining the change in routine to him is virtually impossible. 

He typically attends kindergarten for about 2.5 hours a day before his appointments with specialists, including neuropsychologists, speech therapists, dieticians and nutritionists. He also sees someone from the Centre de réadaptation en déficience intellectuelle de Québec (CRDI), which provides various therapies and behavioural management for children. 

CRDI spokesperson Mireille Ouellet said the organization is considered essential, but that some services have had to be adapted, and emergency cases are being prioritized. 

Cavanaugh said the CRDI has been checking in on James regularly, but that he is not considered an emergency case, despite increasingly frequent meltdowns. 

For James, she said, meltdowns look like full crisis panic attacks, which can lead to animalistic and very aggressive behaviour. Whereas they typically happen a few times a day, since the shutdowns and James' change in routine, they're happening almost every hour. 

"As much as we try to continue his therapies, we are not licensed therapists, and the way a child is going to react to us is going to be different from how they react to a therapist," Cavanaugh said, explaining it is hard for a child with autism to understand when a parent tries to switch from parent to teacher.  

The mom of three said she has already seen some regression in James: he is starting to lose skills, like now barely using a fork and spoon to eat. 

"I just wish there was more understanding that these therapies are not just to get to an end goal for these children, this is a therapy to help this child be independent one day," she said.

"We preach that early intervention is essential, until it's not essential." 

She said a few months of disruption in routine could spell years of delay for James and other children with autism. 

"Stopping services altogether for these children, they will regress quickly," Cavanaugh said. "Our main focus was how to make it work so he doesn't have a regression. We've just been on top of it as much as possible, doing as much as we can ourselves."

Quebec Education Minister Jean-François Roberge was not available for an interview, but a spokesperson for his office said the ministry is doing everything it can to help students during this time.