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Absurd Social Models of Autism Ignore Severe Autism Realities

Posted Feb 18 2009 12:00pm

Restigouche Regional Hospital, Campbellton New Brunswick

Centracare Long Term Mental Health Services Center, Saint John New Brunswick

As the father of a severely autistic boy I am repulsed by attempts to redefine autism from being a medical concept, a neurological disorder to a social model based on variations in personality and modes of thinking. At its most benign the social models of autism are inherently self contradictory. People who have received a medical diagnosis of autism wish to be thought of as autistic, they are proud of their autism, BUT they do not want "their" autism to be known as a medical condition. Autism, however, has no meaning other than as a medical disorder. A person acquires the label autistic because they have received a medical diagnosis. They received the diagnosis because of significant behavioral, communication and social deficits. At its worst though the social model of autism is a dangerous delusion.

The social model is dangerous because it requires that we close our eyes to the realities of autism, particularly the more severe manifestations of autism. There are many persons with high functioning autism and Aspergers for whom it is fine to ponder autism as a social construct. After all many can attend university, have careers, get married and otherwise function independently in society.

For many low functioning persons with autistic disorder life is quite different. For them the future is one of dependent living in group homes and institutional facilities. For some lower functioning autistic persons language is a severe deficit. Not just speech but understanding or using language by any mode. For some, intellectual deficits accompany their autistic disorder.

Here in New Brunswick I have been involved with autism advocacy since my son's diagnosis 11 years ago. With many other parents, I fought for pre-school autism intervention and autism trained teacher aides for autistic students. These resources have been helpful for many New Brunswick children with autism disorders including some with Aspergers. These special resources were dedicated to helping these children because they needed the extra resources, the specialized intervention. They needed these interventions because of the deficits which defined their medical disorders, their autism spectrum disorders.

I have also fought alongside other parents for the continuation of a tertiary care program for autistic children which had been threatened with termination. The plan to close the program arose not because it was unnecessary, quite the opposite. The autism pediatric tertiary care program was being closed because it was placing such demands on the resources of the facility which provided the program that it was threatening other programs. The announced closing prompted a strong reaction from parents of autistic children. The program, with the involvement of the facility's professional staff, and then Health Minister Brad Green, was saved.

I have also visited two mental health facilities where some autistic adults in New Brunswick live. New Brunswick has a privately operated group home system badly in need of many improvements. For some autistic adults though even a group home is not the reality. Some are too severely autistic, present too many complex challenges, to live in a group home. For some institutional care is the future.

I visited the Centracare facility in Saint John several years ago with a friend, a father whose adult autistic son was living in the facility. At the time my son Conor was only a child. Last week I visited the psychiatric building of the Restigouche Regional Hospital in Campbellton. I was particularly interested in the treatment of the autistic adults living there. The people from the hospital were competent and caring individuals. They do what they can for all their residents including the autistic adults. For me it was reassuring to meet such people but it was still disturbing to see what may be my son's future.

Conor is older now, he will turn 13 this Thursday. His future is much closer. His future may well mean life in a group home, or in an institution like Centrcare or the Restigouche Regional Hospital. For me it is impossible to cling to the outrageous idea that autism is not a medical condition. Reality is far too close at hand for such a dangerous delusion.


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