Showing posts with label autism heterogeneity. Show all posts

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.

Posted in autism diversity, autism heterogeneity, autism speaks, epilepsy, intellectual disability, Lynn Waterhouse, Michael Rosanoff, Rethinking Autism Variation and Complexity, seizures |

Autism Self Injury and Aggression Can Occur Quickly With No External Provocation

The pictures set out below this commentary were taken in May 2012 and posted on Saturday, May 26, 2012 under the title Conor's Autism Reality: From Joy To Self Injurious Behavior In A Flash. I was taking these pictures of Conor enjoying a swing on the playground of his old grade school, Nashwaaksis Memorial School. It was early Saturday morning, no one else was around; there were no loud noises or disturbances. The weather was pleasantly cool and mild. Conor was loving his time on the swing and then ... just like that ... he was engaged in self injurious behavior as set out in the last two pictures of this set ... with no external factor whatsoever. Whatever prompted the head hitting and hair pulling of the last two pics was purely internal. His self injurious behavior in this instance was not an isolated occurrence. It has happened before and since. Nor is it always self injurious. There are times when Conor has been aggressive with his mother and father. I have never believed for a second that he actually intends to hurt either of us. Some times he is reacting to external stimuli such as the sound of a phone ringing. It is my belief that when he is aggressive to himself or others he is most often reacting as he did in these pictures to internal disruptions of some kind.

I am not generalizing from Conor's reality to those of other persons with autism symptoms or disorders. I was, from the beginning of my understanding of Conor's condition, and during the early days of my autism advocacy, annoyed with people like Michelle Dawson and Dr. Laurent Mottron whose affidavit evidence as an autism expert supported her application for intervener status when she appeared before the Supreme Court of Canada in the Auton case as an "autistic" to oppose government funded Applied Behavior Analysis treatment for other people's children. I never accepted that my son with severe autistic disorder and profound developmental delays could be represented even indirectly by this person capable of addressing Canada's highest court.

Nor do I subscribe to the unsubstantiated belief that persons with autism are responsible for planned violence like the horror committed in the Newtown massacre by a person rumored to have autism/Aspergers. I do acknowledge though that, at least in my son's case, unplanned, spontaneous, "reactive" aggression to use CNN's Dr. Sanjay Gupta's term, can occur and can occur in a flash. Depending on the setting, for example sitting in the back seat while Mom or Dad are driving, the consequences could be very, very serious. Even in ideal circumstances such as the Saturday morning playground depicted below aggression, whether directed toward himself or those with him, can be serious and frightening.

There may well be persons with autism disorders whose symptoms do not include self injurious behavior or injury to others. Great, I am happy for them. But the public at large should not believe for a second that it is not present in some persons with autism in ways that are not always present in non autistic persons. It is, for many persons with autism, a fact of the brain disorder(s) which manifests in symptoms that we call autism. Research is needed on the internal causes of self injury and aggression in persons diagnosed with autism. Treatments need to be developed. Pretending such internally provoked or aggravated aggression is not part of autism won't make these realities disappear.

Instead of spending years trying to streamline autism symptoms and disorders into one neat package it would be much more helpful if the aggressive component of the heterogeneity of autism symptoms were acknowledged and addressed through research and improved treatments.