This is Part 1 of a three-part TVO.org series on autism in Ontario. Read Part 2 on Wednesday.
Andrew Dineen was developing as expected. He was racing through his milestones. There hadn’t been any issues of concern.
And then, not long before his third birthday, Andrew stopped speaking.
“His speech was developing normally,” his father, Mark Dineen, told me in a recent interview. “And then it just vanished. And then eye contact. In a couple of weeks, he decided that it was no longer an effective way to get what he wanted. That screaming worked better.”
Andrew is one of thousands of Ontarians living with autism. In recent weeks, autism has become a political nightmare for the provincial government. Doug Ford’s Progressive Conservatives have backtracked on their original plan and promised to do better — but only after loud, raucous protests impelled them to.
The previous government, led by Kathleen Wynne, also faced public fury and was forced to retreat after announcing its autism plan in 2016. This is clearly a challenging public-policy issue. But it’s not one that most Ontarians could be expected to understand: many families are severely impacted, but the vast majority of us go merrily on our way.
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In the coming days, TVO.org will attempt to answer some of the basic questions at the core of this debate: What is autism? How can it be treated? Why has this been such a political challenge for two consecutive (and otherwise vastly dissimilar) governments?
And, most important: What’s the best way forward?
Looking to start at the beginning, I asked Eric Hollander, director of the Autism and Obsessive Compulsive Spectrum Program at the Albert Einstein College of Medicine, in New York City, what autism is. That, it turned out, was a big question. Autism isn’t one thing — it’s many things, and determining how they all fit together and interact with one another has proven impossible.
“Autism is complicated,” said Hollander, who’s also a professor of psychiatry and behavioural sciences at the Psychiatric Research Institute at Montefiore Einstein. “Everybody who has an autism spectrum disorder has some social-communication difficulties. And they also have these narrow, restricted interests or repetitive behaviours. Those are the two domains. You need to have significant impairment in both to have an autism spectrum disorder.”
Typically, he said, autism presents at around two or three years of age, sometimes as early as 18 months. This is a time when a child’s brain is rapidly adding new capabilities — “flipping new switches on,” as Hollander put it — and rapidly growing. The brain’s very anatomy is changing, he explained, and that’s when problems can begin to appear. (This, in part, may be why so many parents wrongly suspect that vaccines can cause autism: injections begin around the same age that autism tends to appear.)
That’s simple enough for a layperson to understand. But there are numerous behaviours and impairments that are also frequently, though not always, seen with autism, and it can be difficult for professionals to separate out social anxieties caused by living with autism from the autism itself. The extent of impairment can vary widely from one individual to the next, and the severity is not always the same in both domains: someone with autism may have very mild social-communication impairment but exhibit severe repetitive behaviours, or the reverse may be true, or they may have moderate impairment in both domains. Every case truly is different.
But that’s where the experts look: problems communicating and interacting, and repetitive behaviours. These can be mild or severe — a communication difficulty, for instance, could be anything from trouble understanding sarcasm all the way to being completely non-verbal.
Which brings us back to young Andrew. When he stopped speaking, Mark and his wife thought it was a phase, a weird moment in an otherwise typical young life. When he began clapping his hands repetitively — a behaviour commonly seen in children with autism — they didn’t read anything into it. It wasn’t until other relatives began suggesting that there might be a real problem that Andrew was taken to a doctor. That doctor, lacking expertise, referred Andrew to a specialist. “As soon as we walked through the door,” Mark told me, “she said, ‘Yep, he’s autistic. I don’t normally diagnose on the first visit, but this is an obvious case.’”
On the autism spectrum, Andrew is considered a Level 3, which is characterized by “severe impairments in functioning,” according to the DSM-5, “requiring very significant supports.” At age six, three years after being diagnosed, he is only beginning to learn to communicate, using a tool known as Picture Exchange Communication System, or PECS — essentially, a book that lets Andrew point to a picture to express a desire or need. Attempts to teach Andrew to communicate verbally have thus far failed, so the current goal is to teach him to use his PECS to communicate without needing to be prompted.
“In a contrived environment, he does extremely well,” Mark explained. “But in a natural environment, if he needs something, his go-to is to moan or scream.” It’s up to Mark or his wife (or another caregiver) to guess what Andrew wants and then provide it. The family has adapted itself to a rigid routine — strict schedules, limited travel, very little spontaneity.
That’s Level 3. The two other levels, of course, are levels 1 and 2. A Level 1 case (per DSM-5: “Without supports in place, deficits in social communication cause noticeable impairment”) is the kind that, until fairly recently, could easily be misdiagnosed, Hollander said — or not diagnosed at all. There are almost certainly adults today who struggle with conversational nuance and sarcasm or who are considered by colleagues to be socially awkward or obsessive about routine. But these individuals can function independently, live alone, get married, and hold jobs. They’re “quirky” but functioning.
And then there’s Level 2 (“Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place,” per DSM-5). To explain the difference between levels 1 and 2, I turned to Sarah Jones.
Sarah is an experienced autism parent. Her daughter Ivy Milligan was diagnosed young, having been slow to develop language skills. Ivy began going to speech-therapy sessions before her second birthday; she was in occupational therapy before her third. The therapists told Sarah that they’d noticed other issues as well. Ivy was intensely focused on routine and had difficulty transitioning from one activity to the next. Shortly before Ivy turned four, she was diagnosed as Level 1 autistic and began intensive treatments. Ivy is now 11, and Sarah said that her language skills are typical for her age level and that she’s much better able to cope with change. Sarah told me that if I were in a room with Ivy and a dozen other 11-year-old girls, I wouldn’t be able to guess which one had autism.
But her younger daughter, Gwen Milligan, is a Level 2.
Gwen is seven. She can speak and form multi-word sentences, and even though the syntax and grammar are sometimes off, she’s generally able to express her thoughts verbally. Conversational language is only just developing now: for example, Sarah said, Gwen once tried to ask when something would happen by saying, “What number on the calendar?” She’d gotten the concept right — she wanted to know the date that something would occur. But her way of asking for the information was atypical. Even at seven years old, Gwen didn’t simply ask, “When?”
She is also rigid about routines and expectations, Sarah told me. A failure to do what she wants (even if she hasn’t expressed a desire) or a deviation from an established routine can result in outbursts, including some in which Gwen risks hurting herself or someone else. Still, Gwen goes to school (albeit part-time; she’s in therapy every day, too). I asked her mother what would count as a “win” for Gwen — in five years, what would she want for her daughter? “I want her to be able to go to school [full-time],” Sarah replied. “I want her to have friends. I hope she’s speaking fluently. I hope she can advocate for herself.”
But what might we see in the fight against autism itself over the next five years? I asked Hollander what progress is being made, if any, to understand autism and maybe one day to beat it. “When we originally started doing research 20 or 30 years ago,” he told me, “the idea was, maybe we would be able to identify one gene, develop new medications to target that underlying mechanism, and then we develop a cure. But now we realize it’s not a single gene. It’s maybe 200 genes.”
Add to that the possibility that environmental factors may contribute to autism — Hollander noted that there are cases of identical twins of whom one is autistic and the other not, suggesting the genetics alone can’t explain the disorder — and determining the possible causes of autism becomes even more complex. As does the search for a single cure.
That leaves us, Hollander said, with only intensive, personalized therapy as a viable option for the children of today. And it’s also what brings us to the debate raging across Ontario.