Early on in Beyond the Spectrum, a TVO Original documentary, Carly Harnadek and Stef Pronk make a big decision about the future of their family of seven. When their youngest son, Oskar, is diagnosed with severe autism at the age of two, both parents put their lives on hold for a year to focus on therapy.
With years-long wait times for government-funded therapy the reality in Ontario, Carly and Stef decide to take on the therapy themselves. But what kind of therapy is right for him? And to what extent should they try to change their child’s behaviour?
We caught up with Carly to talk about their experience of being filmed, their thoughts on the recent changes to the Ontario Autism Program, and what Oskar is up to these days.
Can you tell me a bit about your decision to take a year off from 2014 to 2015 to dedicate yourselves to Oskar’s treatment?
The reason we decided to take a year off might seem unusual, but this wasn’t our first journey with autism. We knew what we were in for, and we knew how backed up the system was. So we started doing what we’d done with [our older son] Ted, and we were hopeful we would see the same results.
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Ted was born in the United States. My late husband and I had moved to the U.S., and they had a fantastic system in Wisconsin. We were lucky. And then my husband passed away, and we moved back home, and we got on wait-lists. I moved from Windsor to Toronto to Stratford to find the shortest wait-list. And in Canada, there isn’t a choice — there’s just one recipe. So we started doing things on our own.
What made you decide to take part in a documentary?
That was our idea, to take part in the doc. I was just really frustrated in the time that lapsed between Ted and Oskar. The process was slower; the wait-lists were longer. Instead of things getting better, things had gotten worse. No parent knows this is coming, so you’re at a point of: Where do you go? What do you do? There’s a ton of information online now — almost too much. It’s very overwhelming and hard to know what to filter. So we figured if there was some way of helping and giving back via our journey, it was a way of paying it forward.
It was a very intense year for the whole family. How do you feel about it now?
We didn’t intend for the whole film to be about us — there were other families we’d suggested with different kids and different challenges than our boys — but that’s what the plan ended up being. And so we agreed, having no idea what it was like to have someone in your house for several days at a time, then they go away for a few weeks, then come back.
We’re homeschooling, which we’d only been doing for two years at that point, and we were renovating our house. It felt like a lot more pressure than I’d intended it to be. But we were so happy with how it turned out.
Were you worried about how it might turn out?
I’d get frustrated with the ignorance of thinking I’d have more answers than I actually did and trying to juggle it all.
You don’t really know how you’re going to be portrayed at the end of it. You can make the experience look really positive or even more negative than it was — and that wasn’t our intent at all. It’s definitely a struggle, and you want to be real and honest with parents. But you also don’t want to make it look like you’re throwing in the towel before you even start.
I’m glad we did it, but we gave up a lot. There’s a lot of time and focus that we gave up; we couldn’t shift gears as much as we wanted. And then there are times where you’re being interviewed on camera, and you’ve got the kids all hushed away. That’s why, at one point, we asked for a break in filming.
Is Oskar still receiving home therapy now? Have you joined a provincial wait-list for funded therapy?
As far as what the province is offering, we’re still not interested. With someone like Oskar, the therapies available [via the Ontario Autism Program] are not going to help him. They don’t talk about the thin little box in the middle with the applied behaviour analysis and intensive behavioural intervention therapies where you won’t fit in.
I think when there’s limited amount of money, you can’t put it all in one basket, especially if there are adults on the spectrum out there who say, “This didn’t work for me.”
Government-funded autism therapy has been in the news a lot this past month. What are your thoughts on the government’s plan?
There are too many criteria you have to meet. Will the program even accept you? Especially when you’re gearing it to income and age, who is actually going to qualify? The scary thing for me is when you have a system like that, when you have a kid who’s diagnosed at age two — say he goes through this program, but you’re not addressing the issues of that child. Ted was amazing at learning programs. But then he goes to school and has to regulate his emotions in a chaotic situation.
I think, truly, if politicians want to help society and not think about the next election, then they really have to sit down and listen and talk to all groups of people: to adults on the spectrum, to the parents, to therapy professionals.
What have you heard from other families on wait-lists or currently receiving government-funded treatment?
The other parents I know, their kids are either in a school like Oakwood, so they’re paying out of pocket, or they’re doing it themselves, like we are. Or you’re hiring someone to help you, and you’re training that person. Where we live, there isn’t the level of support. Even under the free system, you’re travelling a half hour to take your child to therapy for an eight-week block.
Everybody is frustrated, and nobody is happy. Sooner or later, most people try to manage it themselves. They get creative.
Everyone makes it seem like there’s this one finish line, this one recipe that you need to get the right result. It doesn’t exist. We tried to show that in the doc.
This interview has been condensed and edited for length and clarity.