MIT Technology Review: John Elder Robison is a professor at the
College of William & Mary and the author of Look Me in the Eye.
John Elder Robison is a former "free ranging "Aspie", a successful businessman, writer and now apparently a professor as indicated in the MIT Technology Review article Fixing Autism Research We need to come to grips with what autism really is. I met Mr Robison briefly at the IMFAR conference in Toronto a couple of years ago. It is not clear in what sense he suffers from a DSM5 ASD clinically significant functioning impairment (mandatory criterion D) in relation to his "autism" symptoms so as to qualify for an autism spectrum disorder diagnosis but he has embraced the autism label nonetheless and presents himself as a voice for the "autism' community. John Elder Robison may well be a voice for the extremely high functioning "autism" community but he certainly does not speak for my adult son who suffers, and I use the word "suffers" intentionally, from his severe autism disorder. Nor do Robison's comments indicate in any meaningful sense that the understands what autism is in a general sense.
My adult son with severe autism disorder like many with autism disorders also have an Intellectual Disability diagnosis and suffers from seizures. In recent years the CDC has estimated between 41-44% of persons with autism disorder also have an ID. The WHO estimated that 50% with an ASD also suffer from ID. Many also suffer from epileptic seizures. The estimates in that regard vary widely but 30% is a number often cited with an even higher number of that percentage located among the severely autistic end of the spectrum.
Like many with ASD, ID and epilepsy my son suffers meltdowns, self injurious behavior, reactive aggression, sensory issues and extreme obsessive behaviors. Changes of any kind can be very challenging. His health is affected in many negative ways by his limited communication abiliity of any kind and no computers do not reveal an inner intelligence which he can communicate via keyboard.
Professor J E Robison complains that autism is not a disease. I assume he means that autism is not contagious and I am sure the world appreciates that insight. It is recognized medically as a neurological DISORDER. More recently well informed autism experts like Lynn Waterhouse have acknowledged that autism is very heterogeneous in nature and may better be viewed from a symptom perspective rather than as a uniform disorder. Many parents of children with severe autism including me have long complained when extremely high functioning persons like JE Robison present themselves as autism experts and present a view of autism to the world based on their considerable abilities and gifts.
"Professor" Robison's life experience as an extremely high functioning free ranging Aspie gives him no insight into severe autism disorders and the potential benefit down the road, admittedly far down the road, for persons with severe autism, It would be nice if the good professor Robison would wake up some day and realize the harm he is doing to people like my son by his misrepresentations of what autism means, I am not however holding my breath waiting.
