Tuesday, March 31, 2009

On World Autism Awareness Day Remember the Invisible and Forgotten Ones

Two days from now, on April 2, the world will recognize for the second time World Autism Awareness Day. WAAD is the result of an outstanding initiative led by Autism Speaks and the State of Qatar.

As the father of a 13 year old boy with autistic disorder, assessed with profound developmental delays I thank both Qatar and Autism Speaks for this monumental step forward in facing the challenges of autism spectrum disorders around the globe.

Everyone with an autism spectrum disorder (Pervasive Developmental Disorder) by definition has serious deficits or challenges to face. For each such person their challenges are undoubtedly large and complex realities of their daily lives. There are different degrees or severity of autism disorders though and this is implicitly recognized in the DSM which in the definition section of Asperger's Disorder expressly excludes persons with clinically significant delays in language, cognitive development or age appropriate self-help skills. (Some of the very intelliglent, highly articulate leaders of the "autism" advocacy movements are in fact persons with Asperger's Disorder such as Ari Ne'eman and Alex Plank).

The mainstream media CBC, CNN, New Yorker Magazine for example tend to interview and present persons with Asperger's Disorder and higher functioning autistic disorder to the world as being representative of persons with autism. Very, very few features about autism focus on the invisible persons with severe forms of autism, the forgotten ones who live as adults in institutional care or very controlled community group homes. [The exception to this rule is the Vancouver Sun which provided the most comprehensive presentation of persons with autism from all points of the autism spectrum with its excellent Faces of Autism series. The Vancouver Sun, Pete McMartin, columnist, and Glenn Baglo, photographer, deserve full credit for daring to portray realities of life for persons from across the full spectrum of autism disorders and their families.]

The invisible autistic persons live in institutional settings because of the severity of their autism disorders. Some are violent towards themselves or others. Some lack the skills to function at all in the world without assistance. Simply closing such places is not an answer even if it makes the public feel better. For many, without institutional care they would have no where to live, no means of survival. For me such severely autistic persons are not invisible or forgotten. Unlike some of the dilettante, mainstream health "journalists" I have visited institutional facilities providing lifelong residential care and treatment to severely autistic persons. My son could well end up residing in such a facility after I am dead.

On World Autism Awareness Day I will think of all persons with autism disorders including my friends with Asperger's Disorder. And I will think of and remember the invisible and largely forgotten persons with severe autistic disorder. I will not ignore or forget them. I respectfully ask you to do the same.

It is my hope that World Autism Awareness Day continues in perpetuity and that long after I am dead people will be thinking of all persons with autism disorders, including the severely autistic, including my son, Conor Doherty.

Thank you for considering my request.

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Claire said...

"Simply closing such places is not an answer *even if it makes the public feel better*. For many, without institutional care they would have no where to live, no means of survival." Precisely...group homes and their "sort of" trained employees cannot handle any sort of severe disability, yet places that can do it, that could do it better with some good management and good government and public support get closed all the time because it is politically correct to do so. I still have not found what has happened to the severely disabled housed in the big institutions in Ontario. Hints are that they are now in hospitals or long term care facilities...worse off than they were before. Still looking.

farmwifetwo said...

Like McGuinty dumping them out of residential facilities without making certain they have a place to go.

I have NO respect for that man at all.... It was John Tory's election to lose and.... UGH!!!!