Wednesday, April 02, 2008

On World Autism Awareness Day Have Hope But Do Not Sugar Coat Autism Realities

History is being made today; the first World Autism Awareness Day as declared by the United Nations General Assembly. Qatar led the international effort to being about this result and that effort should not be overlooked or diminished. In North America and Europe there is a movement which has tried to romanticize and glorify "autism"and which actively attempts to suppress discussion of the harsher realities faced by many autistic people. Governments, particularly the Canadian government of Prime Minister Stephen Harper, have been quick to point to the views of people in this movement as an indication of lack of agreement on what should be done to help persons with autism thus justifying the Harper's government refusal to take serious steps to address Canada's autism crisis.

Almost everything about autism is controversial in the extreme. Debates roar on over the causes of autism. Even Applied Behavior Analysis, ABA, a well documented, well researched autism intervention is criticized relentlessly, often by people who have had no experience with ABA. Some of these people know nothing more about ABA beyond the extremist rhetoric of anti-ABA activisits who themselves generally have no experience and little real knowledge of ABA. The ABA critics ignore the millions of parents, thousands of autism experts, hundreds of studies and numerous professional reviews by responsible expert agencies which have endorsed ABA for decades as the educational and health intervention of choice for autism, an intervention documented by years of study as effective at making real gains in intellect, behavior, communication and socialization skills for autistic children

Even the mention of the existence of severely autistic or low functioning autistic persons offends some people. Within the world of autism there is an ideological group sometimes self referenced as Neurodiversity, which perverts logic and common sense and asserts that Autism Disorder is not in fact a disorder, that somehow it is a good thing that some children develop the limited communication, social and intellectual and behavioral characteristics that lead to diagnoses of Autism Disorder. Mention the reality, the FACT, that some autistic people hurt themselves very seriously by self aggression or that they lack understanding of the world such that they require 24/7 supervision and care, in some cases for the duration of their lives and the Neurodiversity ideologues react with sarcasm, hostility and anger.

While they are quick to search history and speculate that every known genius in history was an "Aspie" or an "Autie" the Neurodiversity ideologues do not want parents of children diagnosed with actual Autism Disorder with profound developmental delays to talk about their children's existence and challenges; challenges not shared by the ND cult. Mere mention of 14-year-old Kristi Jansen the severely autistic young lady featured in one of the Vancouver Sun's excellent Faces of Autism series is enough to set off anger and hostility on autism discussion forums like Autism Speaks now dominated by Neurodiversity advocates.

Accepting autism should not mean the kind of autism acceptance which views autism as a joy. Autism is a disorder. The people diagnosed with Autism Disorder who have limited communication and social skills, serious behavioral challenges and in some cases intellectual deficits, should not be ignored in shame and denial. Their realities too must be accepted. There is no "joy" in knowing that your child, diagnosed with Autism Disorder and profound developmental delays, will never know a life of independence, that he will be cared for by strangers long after you are dead.

My son Conor, diagnosed 10 years ago with PDD-NOS, subsequently changed to Autism Disorder with profound developmental delays. lifts my spirits every day and makes my experience of life richer and more meaningful. Although I do not find joy in my son's Autism Disorder I take great joy and find great happiness in him. I accept him and the fact that he has an Autism Disorder but instead of surrendering to the seductive logic of the Neurodiversity movement, instead of embracing his autism as a "good thing" I try to help him overcome the deficits which mark his Autism Disorder. That to me is true autism awareness and true autism acceptance. That to me is being a responsible parent.

Today I will be aware of Autism and I will discuss it with many people in my daily life. I will be of service to my son and other persons with autism by speaking the truth about Autism Disorder. I will tell people there is hope for improvement by intensive early ABA intervention and the incredible explosion of autism research, the Autism Knowledge Revolution know taking place, but I will not sugar coat the realities of autism disorders to make others .... or me .... feel better.


Nestor L. Lopez-Duran PhD said...

This is a really moving post. Thanks.

Unknown said...

Thank you Nestor.

Anonymous said...

What a great way for me to start my autism reading on World Autism Awareness Day. Thanks for the great insights, and for putting into words what I think many parents feel about the autism debates that seem to rage endlessly and, worse, pointlessly.

Anonymous said...

It's one of the most diginfied and truthful accounts I have read about people who have autism disorder. Although I have no direct relative with this particular disorder, your strength gives me strength to face my own challeges in life. Thank you.

Unknown said...

to brett and kaiser

thank you.