New short doc highlights complications of autism care

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Scrolling through TikTok in early 2023, Toronto-based documentarian Matthew Corolis came across a video by a popular French podcaster and author in Texas, Eileen Lamb, showcasing the differences in her sons’ experiences with autism spectrum disorder.

Though her younger son, Jude, was verbal and solving a complex math problem, her elder son, Charlie, was nonverbal. Charlie experiences the neurodevelopmental disorder more intensely, at what is called Level 3, requiring significantly more support. Corolis began researching, discovering that Eileen Lamb, like Jude, also lived with Level 1 autism.

Corolis got in touch, and after months of discussion, flew to Texas to make Who Speaks for Charlie?, which debuted at this month’s Utah International Film Festival, winning the award for Best Documentary Short Film. The documentary explores Eileen’s discoveries that both she and her sons lived with autism, and the blowback she faced after publicizing that she had placed Charlie in a form of treatment called Applied Behaviour Analysis, or ABA, which intends to teach new skills and reduce behaviours that could become harmful.

That school of treatment has long been the subject of controversy, with common criticisms that include that its reinforcement-based learning treats people like animals, and that it relegates autism as a problem to be solved rather than a normal way of functioning that some people live with. For Eileen, it felt like a chance to give her son a better chance to interact with the world.

Corolis’s previous short documentaries studied issues including the paintings of a wartime photographer and the stigma of breast and cervical cancer in Tanzania. He spoke with The Globe and Mail the week after returning from his win in Utah.

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Did you have much knowledge of autism and the public opinion about treatments before embarking on the project?

My uncle has a number of developmental challenges, autism just being one of them; he lives in a long-term care home. So I had the family background. With ABA therapy, I didn’t know about any of the controversy with it.

The story focuses on how autism is experienced differently by different people, and on the reaction that Eileen received when she chose to place Charlie in ABA. Why did that focus interest you?

Each parent chooses to raise their kid in a different way; Eileen just so happened to have certain hurdles that most families don’t have. The jumping-off point for the documentary is that there’s really no right or wrong decision. It’s just your decision. And I think for Eileen, Charlie clearly needed the help and needed that ABA therapy so that he could live his life to the fullest. To me, what was most interesting was that it was the correct decision for Eileen. People online might not agree with that.

The documentary acknowledges that opponents of applied behavioural therapy dislike it, but doesn’t go into detail about their perspective. Since Eileen’s experience with these folks is central to your story, why did you not explain more about why they consider it controversial?

A few reasons. One was in the interest of time, and getting to the point: There really isn’t one clear reason it’s controversial. Back in the seventies, when it was first coming into fruition, negative reinforcement was used – like if a child doesn’t do something properly, a toy is going to be taken away. But it’s changed through the years. And each ABA experience is completely different; there are people who have negative experiences. But for Charlie, this is what he needs. The community that primarily attacks Eileen includes a lot of people with autism, very similar to her, where they’re very high functioning. In their eyes, they view ABA as a means of “converting” a child, basically saying that there’s something wrong here. Again, ABA might not be right for everyone.

Your film points out that the waitlist for home and community-based services for people with autism in Texas is longer than any other state waitlist combined. How would greater access to home- and community-based care help people like Charlie in Texas?

Home- and community-based care, in the states, honestly means a ton of different things. For Charlie, it means respite care. It could be as simple as a counsellor, or somebody picks up Charlie for a few hours so that like his parents can have that small break. Or respite can also mean a long-term living care kind of situation. That’s a question playing through Eileen’s mind – he’ll be 11 in a couple months, and one of her biggest fears is, what does the future look like? As of now, with the waitlist, he’ll be about 24 years old by the time he gets to the front of it. It’s a tough scenario.

This interview has been edited and condensed.

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