By Colin McGregor
In his song “Legacy,” the rapper Eminem reveals that he suffers from Asperger’s Syndrome. The world’s richest man, Elon Musk, admitted the same thing during a Saturday Night Live broadcast. Quebec comedian and social commentator Louis T. identifies as Asperger. So why are all these public figures suddenly opening up about Asperger’s syndrome? And what is it anyway?
Moreover, why do we turn our backs on these people in Quebec?
Autism is described as a range of behaviors in which people are isolated and detached from reality, and this, from an early age. They live in their own little world. Sometimes this leads to learning disabilities. The full range of symptoms is enormous.
In 1943, Austrian pediatrician Hans Asperger met a group of children who had difficulty with social interaction and communication. Contrary to Kanner autists, who suffer from intellectual deficits, these kids didn’t have the same problems with language and cognitive functions (thinking). Here were the first diagnosed Asperger’s kids on earth. The big difference between Asperger’s and classic autism is the absence of an intellectual deficit.
In the 2013 edition of the bible of the psychiatric world the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), Asperger’s has been withdrawn from its pages. it This edition folded the previous autism diagnoses, including Asperger’s, into one broad category: autism spectrum disorder (ASD). The new criteria for ASD require people to have persistent deficits in two areas:
- Social communication and social interaction; and
- Restricted and repetitive patterns of behavior.
However, in common parlance the term “Asperger’s syndrome” is still used.
The Quebec association of parents of Asperger children, L’Association de parents d’enfants Asperger au Québec, lobbies so that the term “Asperger” returns to the medical literature. That’s because, as they put it, “without a diagnosis there are no services.”
The criteria for diagnosing autism have changed drastically over the past 20 years. According to Canada’s Public Health Agency, one young Canadian out of 50 between the ages of 1 and 17 (2%) have received an ASD diagnosis.
The figures are way up because 20 years ago physicians did not screen for any form of autism. They sure do now. Children are often diagnosed before the age of 5.
Adults are Ignored
The first provincial plan in Quebec for ASD people dates only to the year 2003. But there are no statistics available for the number of Asperger’s sufferers here. According to Lili Plourde, Executive Director of the Fédération québécoise de l’autisme, the Quebec autism federation: “Even though Asperger’s is no longer in the DSM, those who already had their diagnosis haven’t lost it. But very few specialists will diagnose Asperger’s now, because it no longer exists.”
Mme Plourde explains that it is difficult to get a diagnosis of ASD after the age of 7. “Even for just an evaluation, you have to go to the private sector. It’s impossible for an adult to get a diagnosis in the public health care system. They’re completely ignored.” And it costs about $1,500 to be evaluated privately!
The public system is too overburdened to deal with adults who seem to be doing well. “We ask what we can do,” she says, “if their needs are few.”
However, there are no services for adults available “even if things are going bad for them. We should offer some basic services so that they can keep a job.”
It is estimated that there are four times more males than females who suffer from ASD, including Asperger’s. Women are often under-diagnosed because as Mme Plourde puts it “girls are less annoying and calmer than boys.”
Higher Rate of Mortality
With the lack of health care staffers, especially during the pandemic, the lists of those awaiting a diagnosis are very long. Children under the age of 6 are priority, Mme Plourde says. But the dangers of not dealing with any type of autism are real.
According to a 2017 provincial report on autism: “The suicide rate among people with ASD is twice as high as in the general population without ASD. The mortality rate linked to other causes of death is five times higher among those with ASD.” They die because they don’t go to a doctor when they are sick, or they can’t find a job that lets them live adequately.
Silicon Valley
Asperger’s children may have trouble transitioning from one task to another, or reading non-verbal indicators. Sometimes they use repetitive movements such as rocking back and forth to calm themselves down. It’s not a good idea to get them to stop using these repetitive movements. Asperger’s is a neurodevelopmental issue that lasts a lifetime. There is no cure and no medicine for it.
Those afflicted can focus on a problem or a puzzle for a very long time. It’s a condition often associated with advanced intelligence.
According to Dr. Temple Grandin, professor at Colorado State University, herself autistic, the diagnostic criteria are still evolving. Asperger’s is sometimes confused with episodes of anxiety. “One of the problems,” says Grandin, “is that for a child to get special services at school they need a label. The problem with autism is that you have a spectrum that goes all the way from Einstein to someone with no language skills and an intellectual deficiency.”
She continues: “Basically, you’ve probably known people who were socially awkward but very intelligent. How many of those intellectuals have become autistic? Half of Silicon Valley is probably autistic.”
Resources for Asperger’s and autism:
Autism Canada: to contact them: info@autismcanada.org or call 1-800-983-1795
Fédération québécoise de l’autisme: autisme.qc.ca
Autisme Soutien, a support service in French: autismesoutien.ca
In the regions:
Saguenay-Lac-St.-Jean: autisme02.com
L’Outaouais: traitdunionoutaouais.com
Lanaudière: autisme-lanaudiere.org
Laval: autismelaval.org
Côte-Nord and Nord du Québec: actionautisme.ca
Capitale-Nationale: autismequebec.org
Rimouski-Est-Québec: www.facebook.com/autismedelestduquebec
Laurentians: autismelaurentides.org
La Mauricie: autismemauricie.com
Centre-du-Québec: autisme-cq.com
L’Estrie: autisme-estrie.com
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