‘A cry for help’: Survey shows B.C. caregivers of kids with autism struggling amid COVID-19

BURNABY (NEWS 1130) — B.C. families caring for children with autism are already at increased risk of experiencing stress and strain, and a recent survey suggests they’re feeling even more of a squeeze because of the pandemic.

The survey, carried out by Simon Fraser University (SFU) and Autism Community Training (ACT) began July 20 and ended in September, with 238 families across the province responding. Of those who responded, more than one third reported safety concerns for their family, according to Grace Iarocci, who is the director of SFU’s Autism and Development Disorders Lab.

Almost 10 per cent have considered putting their child into government care.

“We asked them about the Ministry of Children and Family Development, so when parents no longer feel able to care for their children, they have the option of calling the ministry, similar to the ministry taking care of children who are at risk for being abused. Families can voluntarily give up their children for care when they feel they just can’t parent the child, so it’s a cry for help, really,” Iarocci explains.

I had the chance to speak w/Grace Iarocci, who is the director of @SFU‘s Autism & Development Disorders Lab. She characterizes some of the responses as a “cry for help,” especially w/parents trying to manage things with little to no resources during the #COVID19 pandemic.

— Ria Renouf (@riarenouf) November 13, 2020

Iarocci says it speaks to the lack of resources available to families during the pandemic.

“These families rely on all government services that they receive, like the foundation of a house, you know. If you start pulling away at those supports, things break down pretty quickly. So, it’s not like the rest of us where we say, ‘Well, you know, if government policy or a government service is not fully there for us, that it doesn’t affect our lives all that much.’ For these families, they rely on those services. It’s part of their survival,” she says.

The measures families have been asked to take to stop the spread of COVID-19 have made caregiving more challenging, and more isolating.

“The children are home all day long, some of them with serious behaviour problems, some of them with aggression. Taking away behavioural support systems: behavioural interventionists who work with these children; special education support services from the school; the support from the Ministry of Family and Children Development offered through the Autism Funding service here in the province of B.C.; speech language pathologists; occupational therapists — all those services that those families had in place — most of them have more than one working with their children. All of those people disappeared suddenly during COVID, and they were left with nothing.”

In addition, some parents were unclear about whether funding they receive to secure these supports could be deferred if it went unused.

“I think one of the things we noticed from our survey was that families didn’t even know about some of the services, or the potential government resources, that were available to them during COVID. So, having that information out there so that families can access it, or communicating in a timely fashion to help families get all the resources that they can during an emergency situation like that is really critical.”

More fr. Iarocci: “these families rely on all gov’t services that they receive. If you start pulling away at those supports, things break down pretty quickly.” Also says some respondents found #BCGov communications confusing. (I reached out to the province BTW to ask about this.)

— Ria Renouf (@riarenouf) November 13, 2020

The pandemic has been a struggle for a number of different groups, and based on the current trajectory, Iarocci says it’ll be important to establish a space for parents to find important information around resources during a pandemic.

“Communicating to [parents], listening to them, being flexible…I think one thing the government wasn’t doing a great job of was being flexible in allowing families to use funding, or being flexible with the timelines, or recognizing that there’s this pandemic going on. You would imagine that there would be flexibility, but in fact there was no flexibility. And so it was upsetting to families, I think,” she notes.

Now that the second wave is upon us, Iarocci says it’s more important than ever to get clear communications in place.

“Now that we’re months into this, we’re hoping that the government will begin to look into the data – certainly what we’ve collected – but maybe even collect their own data around, ‘What do families need,’ and ‘How are we going to adjust?’ given that things are not about to change any time soon.”

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