Why do autism specialists want to stamp out autistic traits?

Posted on January 29, 2016 in Inclusion Debates

TheGlobeandMail.com – Opinion
Jan. 29, 2016.   Anthony Easton

Anthony Easton is a Hamilton-based writer

I haven’t been very successful at finding a job. I have two master’s degrees and I have been writing for about 10 years.

Oh, and I have autism.

My autism is not a secret. I have spoken about it at academic conferences, high schools and universities and in the pages of national magazines. I am editing an anthology of writing about autism and language. I was diagnosed late, and I am a decade older than a lot of people who were diagnosed much younger, but I am also younger than the people of my parents’ generation who were rarely diagnosed at all.

I’m on provincial disability (ODSP), which does not provide enough money to live on. The system pushes the idea of finding work as a solution, though often work is contract-based or part-time, and ODSP takes back a portion of the money you make. Finding work is frustrating, and knowing that how I think or create would be valuable to a larger institution, and with my decades of lived experience, I thought I could find a job as an autism expert, at any of the number of social service organizations that help with neuro-diverse clients.

In my job search, I’ve discovered something toxic: Many view autistic traits as something to be erased. And they are rewarded – and employed – for those views.

In the past few months, sites like Charity Village in Hamilton offered between three and six jobs a week for autism specialists – which requires training in ABA, or Advanced Behaviour Analysis.

ABA is a program that tries to teach autistic kids not to be autistic. Through daily, routine, and monotonous retraining, it takes behaviours that could be considered part of autistic selfhood or autistic language, and pushes them out of children. ABA trains a child like a recalcitrant puppy who keeps messing the carpets. The most horribly ironic thing is that ABA takes the marks of spectrum language – the repetition, the excellence at finding patterns, even the love of ritual and tradition – and turns them around and uses them to construct a program that will destroy these traits.

People who would be good at letting autistics live in the world are repeatedly shut out of the advocacy program. For decades, the self-proclaimed biggest autism service agency on the planet, Autism Speaks, spent money on research to cure something most of us do not think worthy of being cured.

While spectrum adults in their early 20s are working out how to create a world that allows for a wide range of cultural and social diversities, the parents of children a generation younger are often doing everything in their power to erase us.

Some movements from the outside recognize this: Andrew Solomon’s 2012 book Far From The Tree and Steve Silberman’s new book NeuroTribes are trying to shift the discourse in communities of autistic voices.

But the problem remains: There is more funding in understanding autism as a disease or a virus, as something that destroys the bright futures of children everywhere.

That is the unsolvable problem: that this cult of experts is making a fortune, while spectrum kids are having trouble working out what adulthood means in a world that does not value them, and that refuses to pay them for the daily work of living on the spectrum in a hostile world.

I worry if we continue this kind of behaviour, that a younger generation will be eliminated before they can find their neuro-diverse identity. That is the larger, macro problem.

I am incensed that I live in constant peril – of not making rent, of not paying for groceries– while the people trying to destroy who I am are well compensated.

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One Response to “Why do autism specialists want to stamp out autistic traits?”

  1. Anthony,

    How refreshing to ‘hear’ your voice on a topic near to my heart. I have worked with autistic adults and children and cannot bear to see so many apparently well-meaning folks missing the mark on so many fronts. I, too, am on the outside with a history of good rapport with affected people, while all the willing sheep & lemmings are collecting moolah while traipsing headlong, sometimes dragging their ‘clients’, into the abyss. I have much to offer; I have yet to find a forum for my many valid concepts.

    I hope to see the day when inclusiveness is the name of the game and facilities that encourage diverse ways of being exist in all regions.

    I have much more to say; I will leave it at this: Bravo, Anthony; I wish you well and I hope that you and others will find what they need in good time.

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