Autistic Licence

This article first appeared in More Magazine, April 2011.

It’s not often you meet someone who describes herself as “a classic mouth-breather,” “weird” and “slow looking.” It’s especially uncommon when that person is described by others as “a really important intellect” and “one of the smartest people I’ve ever dealt with” (this from a man who counts among his acquaintances more than 15 Nobel laureates).
Say hello to Michelle Dawson — although if you met her on the street, she might not say hello to you. She certainly wouldn’t shake your hand. She probably wouldn’t make eye contact. This slightly built 49-year-old with long, dark, braided hair is the kind of person you might not notice in a crowd, might even actively ignore, which would be quite fine by her, thanks. Of course, if you got her started on a subject about which she’s passionate — say, scientific ethics or how we measure intelligence in people with autism — you wouldn’t be able to not notice her: She’s fierce, blunt and intimidating. (And that’s how her friends describe her. Her foes use much uglier language.) She’ll likely tell you your thoughts on the subject at hand are wrong, stupid or misinformed. (In fact, some of her closest friendships started with a conversation in which she did just that.) But she’ll back up everything she says with evidence by the truckload. And good luck getting a word in edgewise — for a couple of hours or until you just say “enough” and walk away.

But before you cry uncle, you might notice she’s repetitively tapping her right cheekbone with the middle fingers of her right hand. Your eyes might wander to her chest or left arm, where scars from cutting herself are clearly visible. If you’re not paying attention to what she’s saying, or don’t understand it, her demeanour and tone might seem rude.

And if you were a writer, someone like me, say, you might worry about describing her so bluntly. To which she would laugh and respond: “I don’t care what you say — if it’s true.”

***

“Michelle is not a curiosity,” says Laurent Mottron, a psychiatrist and director of Montreal’s Laboratoire de Neurosciences cognitive des troubles envahissants du développement, his words accented with his native French. “She is a really important intellect who is obsessed by truth, and while it is usually considered a fault to be obsessed, it is of value to us.”

Since 2004, Dawson has made important contributions to the study of intelligence in autistics — a field she didn’t enter until she was in her forties. In fact, she’d never worked in science; when she met Mottron, she was employed as a Canada Post letter carrier (more on that later). In one landmark study published in 2009, she and members of Mottron’s research team demonstrated that measuring IQ in autistics by using a visual-based, rather than language-based, test resulted in some dramatic increases in IQ scores.

 

Currently, Dawson is working to develop a description of how autistic brains process and analyze information. Our best understanding of non-autistic brains suggests that people who aren’t autistic tend to modify their perceptions — the data brought to them by their senses — through existing experiences, knowledge, expectations and emotions. Non-autistics tend to push new data through existing information-processing hierarchies in what’s called a “top-down process.” What this can mean is that “things 
are lost but also filled in,” says Dawson. For example, non-autistics can fail to notice things they don’t expect to see (called “change blindness”—to see this in action, click here) or fail to see that two choices are identical if they are presented in different contexts (called “framing effects”). Dawson believes that autistics, by contrast, have more flexibility in the way they handle new data. “Top-down influences are more optional — not deficient, absent or dysfunctional — rather than more mandatory, and brain areas may function more independently but are not isolated,” she suggests. A non-autistic might be tempted to view this as an inefficient way to handle new information — after all, the autistic may not be quickly sorting it into existing categories as might a non-autistic. And that non-autistic sorting might be more efficient if there were nothing unexpected in the data. But if there are differences, the autistic brain could be better at noticing them simply because it is better at seeing what is truly there, as opposed to seeing what it expects to see. Dawson calls this “cognitive versatility.”

“It seems to be a good enough hypothesis,” Dawson observes. “The point isn’t to say that I’m right, but that these guesses — and I would call them wild guesses just to make sure everyone knows they’re still speculation — seem to be quite useful. They might turn out to be wrong in some way and someone way smarter than I might come along and point out things I’ve totally missed, which I hope happens, because it pushes the science forward.”

“I think Michelle Dawson’s general idea of the primacy of science and ethics and her investigations of autism are ahead of their time and the world is still waiting to catch up,” says American author, economist and debunker of bad science, Tyler Cowen. “She is an exceptional mind and I think 20 or 30 years from now, people will look back and see her as an intellectual pioneer.”

***

When Mottron met Dawson in 2001, however, her intellect was not immediately evident. Then in her late thirties, she was featured in a television program as an example of an autistic whose life was in disarray. She exhibited self-injurious behaviour — cutting herself. She was embroiled in a dispute with her employer, Canada Post, and was depressed. Mottron, whose work on autism was already well regarded, was featured in the same program as an expert on the condition, and he recalls thinking, If I can’t be of help to her, what’s the use of my work? Medical ethics prevented him from contacting her to suggest he counsel her, but she subsequently phoned his office to ask for assistance in dealing with her employer. “I tried to help her with the various ways we help autistic adults,” says Mottron, offering her life skills advice and other practical strategies. “All we tried didn’t work.”

For Michelle Dawson vocational school was “sort of like high school, but with ashtrays.”

 

Dawson, like some other autistics of her generation, wasn’t diagnosed until adulthood. She was, she recalls, an odd child. She taught herself math at age four by watching grown-ups play cards. She read early and voraciously, studying encyclopedias — although, while she could recite what she’d read, as a youngster she didn’t fully understand it. She ate what she describes as “very unusual and extremely restricted choices of food.” At school in Western Canada, she was a “math head” but “nobody thought of me as a nerd because I looked too slow.” And while teachers clearly found her peculiar, her marks were good enough — sometimes exceptionally good — for her to pass from one grade to the next. Her parents never treated her eccentricities like “some kind of tragedy,” she says, perhaps because one of her siblings had suffered a near-fatal illness, which may have given them a unique perspective on Dawson’s behaviour. In high school, she sat through classes drawing on her clothes or sneakers and sometimes sleeping. When there were breaks, she found places within the school to hide and relax by rocking. And while her marks qualified her for entry to university, it didn’t occur to her to apply. Her father was a university professor, but Dawson had no concept of what university was or why she might want to go there. “I liked keyboards. I was good at typing. So I thought I might be a typist.”

That didn’t happen. Instead, an acquaintance was registering for vocational school — “sort of like high school, but with ashtrays,” she remarks — and Dawson decided to register too, ending up in a two-year drafting course. She excelled, winning a scholarship for her second year. But her success at school didn’t lead to success beyond: She graduated into a recession, and computer-assisted drafting programs soon made most of her drafting skills obsolete.

Over the next few years, Dawson drifted from job to job prior to moving to Montreal, where she worked in a sweatshop before applying for work as a letter carrier. She aced the entrance test and was hired. For the next 11 years, she had an exemplary work record, garnering excellent performance reviews. “It’s a really great job for autistics. You need persistence (which I have a lot of), you need to be resourceful (which I have in the extreme), you need to be able to remember and process a lot of information, and being able to notice anomalies is a very good skill to have too. When you walk around on your route, you always, in effect, carry the instructions of what to do next in front of you because you have the next piece of mail in front of you; there’s a limited amount of time working in an actual office, and you have interactions that are fairly short and based on a very set subject matter, which autistics generally handle well. And they don’t really care how you do the job so long as you do it really well.” She pauses. “You can tell that I really liked this job, eh? I do really still miss it.”

 

It was work Dawson would have been content to continue doing. She had been diagnosed with autism in the early 1990s, and in 1999, when a change in schedule meant she had to request a minor accommodation based on her disorder, Dawson disclosed her diagnosis to her employer. Behaviour previously viewed as eccentric became characterized as pathological. Her self-injury was taken as evidence of potentially violent behaviour. For almost a decade, Dawson and Canada Post were engaged in ongoing legal disputes, which ended up before the Canadian Human Rights Tribunal, where Dawson ultimately won her case. However, she did not return to work at Canada Post.

It was at this time that she connected with Mottron. And while his efforts at life skills training with Dawson had little effect, he did notice her mastery of processing large amounts of information. Since she was a native English speaker and he was not, he asked her to copy-edit a scientific paper he’d written for publication in English. She did a good job, so he asked her to edit a second one. “It was then I realized she had actually read all of the works I cited in the bibliography — and was critiquing the way I quoted those works,” he explains. “Her level of precision but also her judgment and her seriousness were exceptional. She was an unbelievable insurance against making mistakes. So I stopped being her psychiatrist and became her colleague.”

Mottron initially tried to pay Dawson for her work, but it became clear to both this wouldn’t work. Being in an employee relationship and tracking billable hours was so difficult for Dawson it almost stopped her from doing what little work she took on. So she became a volunteer. As her role grew from checking accuracy to contributing intellectual property, Mottron invited her to co-author scientific papers.

Today, the vocational school graduate is working with doctoral- and post-doctoral-level researchers. Within that team, her skills and tendencies have found a home. Where in other situations her drive for absolute certainty (“She can’t accept just 99.9 per cent accurate,” says Mottron) was a crippling fault, within the research team, she actually pushes scholars to produce better work. Her combative intellectual arguments are welcomed; they challenge team members to rigorously examine and defend their conclusions. And her breadth of knowledge — what Mottron calls her “absolutely unusual” ability to process and recall the fine details of thousands of scientific papers on autism — makes her an invaluable resource.

The pluses for Dawson? “I like the work I’m doing now,” she affirms. “Considering how badly I might have been expected to screw up, this has been quite productive. It’s better than a kick in the pants, you know? It’s better than a stick in the eye.”

It would be tempting to end Dawson’s story here, a happy transformation from misunderstood misfit to industrious intellectual, finally recognized for her work; her disorder viewed not as a list of deficits but revealed as a source of hidden strengths.

But that wouldn’t be, to use Dawson’s own yardstick, 100 per cent true.

***

“Have you seen Michelle’s apartment?” asks Montreal lawyer Doug Mitchell as we talk on the phone one October evening. “It is…” he pauses. “You would never want any of your children, family members or anybody to live in that apartment. But she doesn’t want to live anywhere else.”

Mitchell is one of Dawson’s long-standing friends and the father of an 18-year-old autistic son. Their friendship began, as have so many of Dawson’s, with arguing. Dawson sought Mitchell’s help in her dispute with Canada Post, and he would spend hours on the phone “trying to give her a bit of perspective on how her obsessions, perspectives, whatever word you want to use, would be 
perceived by the legal system and people in the ‘normal’ world.

“People in the office would raise their eyebrows when I got a call from Michelle: ‘Oh, here comes another two-hour call where Doug’s unavailable.’ ” And while Mitchell was accustomed to offering clients — many of whom he says are in “odd situations” — insight into how the legal system might view them, “what was unique in my relationship with Michelle was the opposite also happened. She gave me tremendous insight into trying to be able to understand things from the perspective of an autistic person.”

It was a vision Mitchell was hungry for: He was deeply drawn to understanding how the world appears through his son’s eyes. “I remember her saying, ‘You don’t ask blind people to look you in the eye, so why do you ask autistic people to look you in the eye?’ I just remember that striking me as, Holy shit, that’s really interesting. She’s challenged me to think about things differently.”

Mitchell has helped Dawson challenge others’ thinking as well. In 2004, she applied for the right to present arguments before the Supreme Court of Canada in what was known as the Auton case, in which a group of parents was fighting to have the B.C. government pay for a widely used behavioural treatment program for autistics. The court rarely allows individuals to intervene in cases, but it granted Dawson that right and Mitchell appeared for her in court. Their key arguments? That the court was being asked to make decisions affecting the rights of all autistic people without having heard from an autistic individual, which was inconsistent with the Canadian Charter of Rights and Freedoms. As well, Mitchell and Dawson argued the studies supporting the treatment technique in question had the same basis as those used to treat what was known as the “disorder” of homosexuality in the 1970s.

“I became involved in Auton because the false and unethical claims and practices by both sides had a drastic effect on the well-being of autistics in Canada,” says Dawson. “I intervened as one such autistic, who had lived the consequences and would continue to live the consequences.” Her fundamental point was that it’s wrong to make a decision affecting the human rights of autistics without understanding the disability or hearing from autistics themselves. Ultimately, the court ruled against the parents.

It was a victory that led some parent advocates to condemn Dawson’s motives and accuse her of faking autism — perhaps not surprising, given that many of them believe treatment is essential for their children’s development. “Every day children with autism do not receive treatment, they’re being discriminated against. It’s clear. Every other group in Canadian society receives treatment for their core condition, every other group, except for kids with autism,” mother Sabrina Freeman told the CBC. Dawson’s response to this type of argument? Prove it with science. (Lest one think her stance places her in the autism self-advocacy camp — a movement of autistics who say, among other things, that only they can truly advocate for themselves, and that there is a unique autistic culture and identity — it’s worth noting Dawson has also pointed out that some self-advocacy groups play fast and loose with scientific evidence, earning her their enmity as well.)

It was a case Mitchell might have been expected to argue for the parents’ side. “I guess I was willing to listen to Michelle,” he suggests. “It wasn’t until I spoke with her that I appreciated autism could really be a strength. So I was willing to listen. And despite her, her vigour, I sensed she was also listening to me.”

Yet “I remember, one of the first few times I met Michelle, thinking I don’t want my son to grow up like that. That’s too tortured a soul. And she’s managed to overcome that tortured soul part, and I think she now lives a pretty good life as far as she’s concerned. But she still has limitations.” A few minutes later, he comes back to this thought. “My wife and I have never been a couple to chase a miracle cure.” He pauses. “But that said, I’m still not sure that if I could find a ‘cure’ I wouldn’t do it. It’s not easy to watch somebody you love in obvious difficulty. I mean, I wouldn’t tell Michelle that,” he says, laughing ruefully.

“Well, maybe I would, but it wouldn’t be easy.”

Precarious and lucky. Dawson uses these two words again and again as we talk over the weeks. Her existence is precarious because her autism limits her ability to do things as simple as buying a cup of coffee. She is sometimes paralyzed by what she describes as waking nightmares. When she is stressed, she may bolt or simply shut down. And she is extremely guarded about letting outsiders inside her life because she knows the label “autism” makes her more vulnerable to intervention from authorities who may judge the way she lives and where she lives to be unacceptable, and who might seek to compel her to live in circumstances they define as “normal” and she would find intolerable.

Nevertheless, she has also been enormously lucky. Lucky to have connected with Laurent Mottron, Doug Mitchell and other loyal friends, who emphasize their relationships with Dawson are two-way streets: They’re not her “helpers,” they’re friends who gain as much from her as they offer her. Lucky to have found a way to use her exceptional skills to contribute to the messy, noisy and sometimes ugly conversations changing the way we view autism. Lucky.

And precarious.

“What I can’t do is really obvious,” Dawson says at the end of a three-hour phone call. “And what I can do is more obscure. But if you don’t give autistics the opportunity, if you don’t take that risk, then what happens? Not only are you cheating autistics, you’re cheating non-autistics too. So what’s the real risk here? Not seeing the possibilities? Or deliberately discouraging autistic people from doing what we do well?

“I could be in an institution. It is only luck that I’m not. And for other autistic people, it isn’t that they’re not working hard, it isn’t that they haven’t done fantastic things, but they have to be lucky too. Because if they’re not lucky, forget it. You’re not going to hear about them except as some burden on somebody.”

As we end our conversation, I tell her I’ll be back in touch to double-check that I’m interpreting what she’s said accurately. “Yeah, that’s a good idea. I’ll probably freak out a few times, but it’s just what I do. It’s inevitable. I freak out really politely.” She laughs. And hangs up.

This article was written with the assistance of a CIHR Journalism Award from the Canadian Institutes of Health Research.