Sunday, May 09, 2010

What Will the Public Know About Autism After the 2011 Ride Across Canada for Autism Spectrum Disorder?

The Ride Across Canada For Autism Spectrum Disorder, 2011  has elicited support from a number of prominent autism organizations in Canada and the United States including, as listed by web site info on the Ride Across Canada Facebook,,,, and  It is also endorsed by some very strong and credible autism advocates that I have either met personally or via the internet, people whom I genuinely respect and appreciate for their hard work and commitment to helping  people with autism disorders in Canada and around the world.  This looks like an outstanding project being undertaken to raise autism awareness and I wish every success for it but, because we are talking about autism,  imbued as it is with so many controversies, I ask what kind of awareness will be raised and what specific goals will be targeted with this effort? 

One of the Facebook supporters for the Ride Across Canada for Autism Spectrum Disorders is Jonathan Howard who knows a thing or two about crossing Canada for autism having done exactly that when he ran across Canada.  I met Jonathan when he stopped in Fredericton and he is an outstanding young gentleman who has given much for others and will undoubtedly continue to be a major contributor, helping other people, for many years to come.   I have no doubt that the forthcoming Ride for ASD's will make more people hear of autism as they did with Jonathan's run but what exactly will they learn about autism and what needs of persons with autism disorders will be brought closer to completion anywhere in Canada by this project?
My comments are not meant in anyway as a criticism. I commend organizer Scott Carpenter and I genuinely have a good feeling about this effort which has attracted strong support out of the gate.  My comments are meant to ask what specifically will be said about autism disorders with this great effort? What will Canadians learn about autism realities beyond the feel good tripe routinely circulated in the mainstream media about autistic savants and autism successes stories exemplified by the incredible Temple Grandin?
The title of the project is a good start.  I no longer believe that there is one single autism disorder.  I believe that there are many different autism disorders.  Still for the public to learn that autism is a disorder, or a number of disorders,  is a very good start and will help break through the feel good nonsense of those who would tell us that autism is a joy and a blessing that we should embrace. 
It will be important for the public to hear the whole truth about autism spectrum disorders.   While there are indeed some very high functioning autistic persons who have been very successful and contributed much to society there are many  persons with low functioning autism and intellectual disabilities some of whom injure themselves very seriously and some of who wander away never to be found alive.  The public should know that there are many adults severely affected by autism disorders who spend their lives lonely and living in institutional facilities far removed from families.   The public should know that right now, at this very instant, we are in dire need of funding for adult residential care and treatment facilities that will allow all adults with autism disorders to live a decent, happy life closer to family and community.
The public should know that, to date, only ABA enjoys a solid base of evidence in support of its effectiveness as an autism intervention that actually helps autistic children.   This does not necessarily mean that other biological and dietary approaches do not actually help improve the conditions of autistic children.  What it does mean is that the research to support their effectiveness is still lacking or disputed at this time.  The public should know that research is needed to provide the evidential support for more autism interventions, to help us understand all causes of autism disorders genetic AND environmental as we search for  more treatments and .... for the cures of autism disorder that do not presently exist.
The Ride Across Canada holds out considerable promise for raising autism awareness.  I wish it every success and hope that the Ride generates awareness about the real challenges of autism disorders, the real needs that must be met and .... the focus on specific goals that must be met in order to actually get something done to help improve the lives of Canadians with autism disorders.
Good luck Scott and may fortune favor this worthy project.

1 comment:

Adrianna said...

There is never any one disorder. There are many manifestations of lupus, many manifestations of schizophrenia, many types of dyxlexia, blindness, etc. The point is that they affect individuals in similar ways...and are, first and foremost, disabilities.

While I think advocacy should portray all variations of the autism spectrum (formally diagnosed variations, that is) the focus should be on those who are the most impaired because they are the ones that need the most help. On the other hand, showing what can be achieved through the stories of the high-functioning can give us an idea of where to do with advocacy, where we want to end up.

You either have the heartbreakers of the most severe cases of autism there is, or you have the Ari Ne'emans of the world. How about those in between? These are almost universally ignored, the people who aren't impaired enough to get sympathy and who aren't high-functioning enough to really fit in and function. A no-man's land, if you will.