"My identity is attached to being on the autism spectrum"
- Ari Ne'eman, Founding President, Autistic Self Advocacy Network, Obama Administration Disability Appointee
, New York Times,
Nov 3, 2009
I am typically the only one on ASAN's board to interject the issues of the LFA, because my son is one. Whenever I do this, I am attacked by a few, including Clay Adams. Clay doesn't like it when I discuss the LFAs on ASAN's board. Neither do a lot of people. I wouldn't be surprised if I was eventually kicked off that board at some point. I'm the only one that I know of that has ever been put into moderation mode there. The fact is, that Clay Adams has no interest in the LFA and never has.
There are others though that do think LFA needs more representation and advocacy on that board and in the online autism community. However, most don't want to really expose themselves for fear of being attacked like I have. They see what has happened to me and they don't want any of that to happen to themselves.
Any mention of Low Functioning Autism, autism and intellectual disability, or autism and cognitive impairment is often met by hostility from some persons with HFA/Asperger's. Many of these persons identify with being on the "autism spectrum" as does Ari Ne'eman, the very high functioning university student with Asperger's.
Videos that portray the harsher realities of life for lower functioning autsitic persons are met with very high profile, media seeking protests by Ari Ne'eman and others who like to identify with the autism spectrum. ASAN which claims to be an autism "self" advocacy organization has no actual low functioning autistic persons, on their Board of Directors, for the obvious reason that such a role would probably be beyond the ability level of persons with low functioning autism disorders. As the comment by Kent Adams, a father of a low functioning autistic boy, indicates he is pressured to refrain from raising LFA as a topic for discussion by the ASAN Board.
The ASAN Board is comprised almost entirely of very high functioning persons "on the spectrum", lawyers, technicians, writers and university students. ASAN has a very broad definition of autism
going beyond persons with an autism diagnosis to include those who simply identify with autism :
The terms "Autistic" and "autism spectrum" often are used to refer inclusively to people who have a diagnosis in any of the official categories (see Diagnosing Autism) or who self-identify with the Autistic community.
ASAN's broad definition of autism helps extinguish the concept of autism as a medical disorder or diagnosis and helps include higher functioning persons with no actual autism diagnosis. At the same time the ASAN autism definition mentions intellectual disability only in a limited sense of difficulty with communication and describes such difficulty as a "different way of thinking" suggesting that it is usually accompanied by being gifted in other areas:
2. Non-standard ways of learning and approaching problem solving. For example, learning "difficult" tasks (e.g. calculus) before "simple" tasks (e.g. addition), difficulty with "executive functions," or being simultaneously gifted at tasks requiring fluid intelligence and intellectually disabled at tasks requiring verbal skills.
For persons who like to identify with "autism", whatever that means to them, it is easy to accept the unsubstantiated allegations that Mozart, Einstein, Van Gogh and other historical geniuses were autistic. When credible sources such as the CDC and CPA are cited to back up the claim that large numbers of persons with Autistic Disorder diagnoses are also intellectually disabled some bloggers with HFA and Asperger's, and even some autism researchers, react by dismissing or ignoring the information. Kent Adams, noted above, has described receiving hostile reactions when he attempted to raise Low Functioning Autism issues on the ASAN board.
The denial of the existence of Low Functioning Autistic persons, persons with Intellectual Disabilities and cognitive impairment, is discrimination. The reason why some persons with HFA and Asperger's refuse to recognize the realities of large numbers of low functioning autistic persons while embracing undiagnosed higher functioning persons is clear:
Identifying with "autism" is cool, it can make the person identifying with autism feel better in some way. Who wouldn't want to identify with a Mozart or an Einstein?
Identifying with those who are intellectually disabled is not cool. Identifying with those who live their lives dependent on the care of others, some in very secure institutions ... that's not so cool.