Autism Reality On The Last Day of the Decade:The Autism Spectrum Concept Has Been Harmful, Part I
Posted Dec 31 2009 2:15am
On this last day of this decade, as we prepare for 2010, and all that the next decade will bring, it has become apparent that a major autism development of the last decade has been the growth of the Autism Spectrum concept.
The growth of the Autism Spectrum concept has caused considerable harm to the interests of many persons severely affected by Autistic Disorder, especially the 75-80% of persons with Autistic Disorder who are intellectually disabled or cognitively impaired. For these severely autistic their life realities are obscured and even hidden by the Autism Spectrum and by some high functioning, high profile media attractive persons who define autism in the public mind.
The Autism Spectrum concept has created confusion about what constitutes "autism". Some members of the public, talk show hosts, and comics, joke about autistic persons as spoiled children who would have been given a good spanking back when they were kids. These people obviously do not see the children with Autistic Disorder who bite themselves, chew the insides of their cheeks, bang their heads until they cause injury, starve themselves out of aversion to food tastes and textures or wander away from their homes, some to be lost forever. They see some very high functioning persons with no readily apparent disabilities who are "on the autism spectrum".
Yes, the mainstream media publishes reports when an autistic child or severely impaired adult goes missing. When an autistic Nove Scotia boy disappeared before a snow storm, and died of hypothermia, the media and Canadians reacted with genuine compassion and feeling for the poor boy and his family. But even then there was little in depth coverage of how many autistic children, and adults, go missing or the steps that have to be taken to ensure that others do not. Even the tragic death of the young Nova Scotia boy did not prompt the mainstream media to thoroughly explore the harsher realities of autism disorders.
By contrast the media has been obsessed with promoting images of very intelligent, high functioning persons "on the spectrum" as the expression is used today. CBC has many times featured Michelle Dawson, a person with "autism", who excelled in the challenging work environment of Canada Post and is now an autism researcher. CNN on several occasions featured Amanda Baggs, a very intelligent person who did not have an autism diagnosis earlier in life and who attended a school for intelligent, gifted youth.
Today Alex Plank and Ari Ne'eman are the newer faces of the "autism spectrum", two very intelligent young University students with Aspergers Disorder who tell the world what it is like to be Autistic, who take it upon themselves to tell the world that Autistic People do not want to be cured. Mr. Ne'eman is an obviously intelligent gentleman with very highly developed communication and organizational skills. He functions and operates very well in the complex world of Washington politics and communicates regularly with the most influential media institutions in the world. To the general public, and to the mainstream media, Dawson, Baggs, Plank and Ne'eman are what they see when they close their eyes and visualize what it is like to be "autistic".
It is no wonder that sufficient funds are not made available to support autism research, to find causes of, and cures for, autism disorders. The public does not see the harsher realities of autism. They do not see lengthy, repetitive features about the life of individual autistic persons with Intellectual Disability or autistic adults living in institutional care. The public sees a very positive image of autism, the one at the very highest end of the "autism spectrum". As a general rule that is all that they see.
It is not an image that would necessarily generate much funding to find cures for autism disorders. Especially when the media savvy persons at the high functioning end of the "autism spectrum", tell the world that WE, referring to people "on the autism spectrum", including those with Autistic Disorder and cognitive impairment, including those autistic adults living in the care of others, do not want to be cured.
Without the "autism spectrum" concept, widely used today, a person with mild Aspergers would not be able, with a straight face, to claim to speak on behalf of the severely disabled autistic persons whose harsher impairments, he or she, does not share, and whose lives bear little resemblance to their own. The "autism spectrum" concept may have some useful diagnostic purposes, but it has also caused harm. It has helped keep the realities of the severely autistic, the 75-80% of persons with Autistic Disorder who are also intellectually disabled, the autistic children who hurt themselves, the adults living in institutional care, out of sight and mind.
There is a natural media, and human, tendency to want to see things in a positive light. The media loves the high functioning end of the "autism spectrum" and ignores the harsher realities at the low functioning end of that same spectrum. The autism spectrum concept itself allows them to do so with a clear journalistic conscience.