Wednesday, August 14, 2013

Autism Breakthrough? Autism Speaks Recognizes Autism Heterogeneity!

Rethinking Autism Variation and Complexity by Lynn Waterhouse is a recent work which provides a thorough, expert and extremely well researched picture of the variation and complexity of  autism spectrum disorders.

Hopefully the rest of the professional and academic autism community will read Rethinking Autism and come to grips with autism variation, complexity and heterogeneity. The highly influential autism advocacy corporation Autism Speaks has typically done a poor job of representing the heterogeneity of the autism spectrum of disorders. AS has aggressively promoted the careers of John E Robison and Alex Plank two very, very high functioning persons with Aspergers/Autism Spectrum Disorders.  At the same time Autism Speaks has also obscured the existence of the 40% of persons estimated to have autism and an intellectual disability and the large number of persons with autism who also suffer from epileptic seizures.

In what may be a major breakthrough for Autism Speaks, in the post Geraldine Dawson era, and a possible step forward in public understanding of autism disorders a high ranking Autism Speaks official, Michael Rosanoff, Autism Speaks associate director for public health research and scientific review, has acknowledged the heterogeneity of autism spectrum disorders in clear, unambiguous terms, in  a Detroit Free Press article Brain changes of autism may begin in the womb:

"Rather than one disease, autism is now regarded as a collection of conditions with similar traits but different causes, Rosanoff says. People on the autism spectrum are extremely diverse. Some are non-verbal and profoundly disabled; others have successful careers, particularly in science and technology, describing themselves as different, rather than disabled. "Autism is so heterogeneous," Rosanoff says. "We're never going to get to the one cause.""

For anyone else, including other Autism Speaks officials who want to catch up to Mr. Rosanoff in understanding autism disorders, autism researchers and major media columnists interested in a thorough, scholarly view of autism spectrum disorders I strongly recommend Rethinking Autism: Variation and Complexity by Lynn Waterhouse. 


Anonymous said...

Is it too much for Autism speaks to advicate for both high end autism and the 40% with intellectual disability?
Perhaps its time for the 40% to have its own advicacy group.

Anonymous said...

Any thoughts on CNN's article titled?
Autism linked to induced or augmented labor, study says

Roger Kulp said...

Anonymous#1 I have made that point here a number of times that someone needs to start an advocacy group just for autism and intellectual disability.Harold would be a perfect choice to start one.

None of the big groups that serve the intellectually disabled really concentrate on autism,the way a group like MitoAction does for mitochondrial disease.

I know you link to Jill Eischer's "Prenatal Exposures" blog.I hope you read it.

Anonymous said...

I agree, Harold is already doing a great job to create a voice for the 40%. He can't do it alone. We all need to push our politicians both local, provincial and federal to do more. The more the public is aware and educated the better we can serve the needs of our loved ones

M Kelter said...

Excited to see autism speaks moving in this direction...i think they can do a lot of good, and steps like this help enormously.