Sarah Boesveld Nov 6, 2011 – 10:31 AM ET | Last Updated: Nov 6, 2011 10:39 AM ET
Laurent Mottron knew he was going to ruffle some feathers when his commentary “The Power of Autism” was published in the prestigious journal Nature this week.
In three short pages, the University of Montreal autism researcher conveyed a bold and indelible message, one that criticized researchers and wider society for focusing too much on what is wrong with autism instead of what’s right.
“In my experience, autism can be an advantage,” he wrote. “People with autism need opportunities and support more than they need treatment.”
He lauded the attention to detail, intense focus, systematic thinking, superior memories and whipsmart IQs of the autistic people he works with in his lab, including researcher Michelle Dawson.
The commentary was bold because autism is considered a serious disorder, one for which there is no cure. It’s bold, too, because the disorder is a complicated spectrum on which there are varying levels of severity, intelligence and adapatability.
And it’s bold because of the fraught politics surrounding a disorder that’s affecting more and more Canadians at a diagnosis rate of 1 in 110 children — a rate that’s only set to climb. One out of 10 autistics cannot speak. Four out of five autistic adults are still dependent on their parents. Nine out of 10 have no regular job.
Though his piece was met by vitriol in some circles, the cognitive neuroscientist gave a prominent voice to a mountainous task organizations in Canada are only now trying to confront: How to help people with autism find work so they can contribute to society.
Because autism — characterized by repetitive behaviours, restricted interests and preoccupations and difficulties in basic social and communicative behaviours such as eye contact, intonation and facial expressions — is a lifelong disorder, parents can be caregivers for life. But as the population ages and parents get sick and die, there’s an even greater need to integrate people with autism into society by giving them the skills they need to become independent adults, experts say.
Children tend to be the focus, autism organizations admit. Adults are overlooked.
“After 18 years of age they’re not kids anymore and they’re forgotten,” Dr. Mottron said over the phone this week from Lyon, France. “People have a cliché, that if he’s autistic you can do nothing with him. That’s not true. The fact that you have some terrible autistic life is not representative of autism in general.”
In his commentary, Dr. Mottron cites recent data, including an epidemiological study from Korea published this June that found the disorder is three and a half times more prevalent than common statistics suggest. “Among these 3.5%, about two-thirds have no adaptive problem at all,” he said, meaning they function relatively normally in society and should be able to take on a job.
Two years ago, Chris McIntosh decided to quit wearing “the mask” at work — an act he put on that made him seem more normal, but was hard on his mental health.
The Victoria-based software developer has Asperger’s and only recently felt he should mention it at work when a project came up that his bosses wanted him to lead. He told them he had Asperger’s and that he’d be better at doing the technical stuff instead.
“Before I could not have admitted that because people would have thought, ‘Well, why can’t you lead projects?’ ” said Mr. McIntosh, who is in his 50s. “I would have had to hide it and I would have led it anyway and it would have been a disaster.”
To his critics, Dr. Mottron’s message appears to favour autistics who have higher intelligence and communication skills — closing lower-functioning autistics out of the workplace entirely and potentially pushing them further into the shadows.
Harold Doherty is a New Brunswick labour lawyer whose son Conor is “severely autistic,” barely communicates and expresses odd behaviour. He’s sure Conor will never be able to work and he’s worried what will happen to his son should he ever die and be unable to care for him.
“You can’t talk to a parent with a severely autistic child about the ‘power of autism.’ That’s nonsense,” he said. “And what they’ve done is they’ve tried to paint autism in a way that’s not realistic across the spectrum and they’ve misled the public by doing so.”
Ms. Dawson said it’s unfair to categorize someone as low functioning or high functioning. She and Dr. Mottron believe many tests that are used to determine level of functionality are inappropriate.
Less commonly used tests such as Raven’s Matrices, which doesn’t require verbal instruction to complete, can actually reveal very high intelligence levels.
“To estimate the true rate, scientists should use only those tests that require no verbal explanation,”
Dr. Mottron wrote in his paper.
“If we were to measure the intelligence of a person with a hearing impairment, we wouldn’t hesitate to eliminate the components of the test that can’t be explained using sign language; why shouldn’t we do the same for autistics?”
Ms. Dawson said an entire session at this year’s International Meeting for Autism Research in San Diego focused entirely on finding out how to measure the intelligence of non-speaking autistics, who might be considered low-functioning.
For those trying to help autistic people find a job, the debate over low and high functioning is irrelevant. The founder of Specialisterne, a Danish company that has helped more than 170 autistics find work since 2004, said it’s OK to start such a movement with people who would be considered higher functioning.
“If we will be able to run a business on the skills of medium- or low-functioning, I’m not sure,” Thorkil Sonne said from Copenhagen. “But everyone deserves a chance to feel that they can produce something that others appreciate.”
Mr. Sonne is coming to Toronto in February to talk about his vision for one million autistic people to find meaningful work, he said. He’s received interest from Calgary, and 60 countries around the world.
“We have this idea that everyone has to fit into the same form and that well it may be easier in some cases for managers to manage people while they’re the same. But you don’t get the dynamic, you don’t get the benefit of different angles,”
he said, adding that he thinks 5% of all tasks within any business can be completed by someone who’s autistic, whether it be innovation, number crunching or critical thinking.
But successfully making it through an interview can be one of the biggest hurdles — especially in such a competitive economy, said Susan Robins, manager of adult services at the Geneva Centre for Autism in Toronto, which offers clinical interventions and training for people on the autism spectrum.
“If you have a bunch of people trying to get a job and one has the odd behaviour, guess which one isn’t going to get the job?” she asked. Last year, financial consulting firm Ernst & Young had the Geneva Centre come in and educate staff about how they can support an employee with autism.
“There’s an expectation that people sit together in a lunchroom cafeteria and [for] the person with Asperger’s or autism — and a lot of adults are not yet diagnosed with Asperger’s or autism — [that] can be off-putting,” said Dr. Kevin Stoddart, director of the Redpath Centre, a private practice in Toronto that serves individuals with Asperger syndrome and other neurodevelopmental disorders.
Natalie Beekhuizen of Calgary is 20, works as a human resources assistant at First Calgary Financial, doing mostly filing and scanning. Typing is her talent and she can pound out 140 words a minute, says her mother Karen.
While she’s always raised her autistic and legally blind daughter to be as integrated into society as possible, Natalie still needs help developing life skills she’ll need in the office and if she ever goes to live on her own. She’s getting that help at the Sinneave Family Foundation’s Ability Hub, a 17,000 square foot centre on the University of Calgary campus dedicated to helping people with autism gain life skills and work training.
“I want her to be a contributing member to society and she knows the diference between tokening and belonging,” Karen Beekhuizen said. “When you talk about reliability, you get it from someone like her.”
The Ability Hub opened in October and is just one of a few new centres devoted to getting autistic adults ready for the real world, said its executive director, Dr. Margaret Clarke, who has spent a career working with people who have autism — the Ability Centre is under construction in Whitby, Ont., and the Pacific Family Autism Centre to be built in Vancouver.
“Around the world we know that average lifetime cost to society to an individual with autism … is $3.4-million per individual. Three-quarters of those costs are incurred in adulthood largely around services to enable and facilitate individual vocations,”
Dr. Clarke said, adding that some data suggests every dollar you invest in pre-vocational programming for people gives you a $7 return. “I actually think that number is going to be even better in the area of autism because individuals with autism have a great capability to learn, they’re just often held back by specific skill deficits or not given a chance.”