Autism Self-Advocate Addresses the Interagency Autism Coordinating Committee
On March 14, Ari Ne'eman, President of The Autistic Self Advocacy Network, presented comments to a meeting of the IACC. ASAN's website describes the organization as "created to improve the representation of the autistic community in public policy discussions as well as to advance the autistic culture movement. We work to provide support and services to individuals on the autism spectrum while educating policymakers and communities about the autism spectrum." Here is a portion of Ne'eman's presentation:
I consider it a grave human rights concern that many autistic individuals continue to be unable to communicate because the assistive communication technology and educational methodology research that could help many more adults and children convey their needs is being ignored in favor of eugenically oriented genetic research aimed at finding a "cure" for a natural and legitimate part of human genetic diversity. The autism spectrum is not a recent epidemic but a neurological condition that has always existed, but is only now being diagnosed at incidence rates that approach accuracy.Not all people with autism can speak or write as eloquently as Ari Ne'eman or Steven Shore (an autistic speaker and writer, and new member of the IACC). But these individuals on the spectrum -- who could, because of their abilities, have chosen otherwise -- have chosen to make autism self-advocacy their life work.The autism spectrum often comes with significant disabilities that require substantial support. However, rather than trying to eliminate us, we can and should be taking steps to mitigate those disabilities while empowering the strengths that we possess and respecting our legitimate place in the spectrum of human diversity. We encourage this Committee to take the first steps towards shifting the main buzzword about autism from "cure" to "communication" and ultimately, to moving the dialogue about the autism spectrum to one of acceptance, inclusion and, above all, respect.
It seems to me that their voices deserve to be heard.
Comments
see the comments I delivered to the committee on friday:
http://www.wrongplanet.net/article362.html
and the article I wrote about the meeting:
http://www.wrongplanet.net/article363.html
I was there all day and heard the public testimony.
As the mom of a more severely affected kid, I was excited to see the intelligence and eloquence of those testifying. These people who are on the spectrum are doing very, very well and that gives me hope.
On the other hand, I was genuinely distressed when one of those who testified claimed to speak on behalf of those who are “low functioning.” Quite obviously this person’s challenges are not the same as the ones my son faces. This individual, who accordidng to their testimony was diagnosed much later in childhood, sat through the all-day meeting without any apparant outbursts, listened to the tedious proceedings and read eloquently from a prepared speech when called to do so. More importantly, this individual has never met my son.
On the flip side, at this point in time, my son certainly couldn’t testify on behalf of this individual, since he is unable to communicate. He certainly wouldn’t be able to sit through a 6 hour meeting and have any sort of impulse control. He can’t blog or testify or conduct interviews with the media. Hopefully one day he will be able to, but that’s not our current reality.
It is completely appropriate for individuals like this to testify on their own behalf. I would respectfully ask that in the future members of this group take their mantra to heart — Nothing About Us Without Us — and not speak on behalf of my son.
Nothing about him without him.
While I absolutely agree with the fact that more needs to be done to mitigate the communicative difficulties in the autism population, I believe those individuals who oppose searching for a cure may not be in the same situation as my son. Perhaps this is an entirely different kind of autism that we are seeing in this generation, because it is quite impressive that these autism advocates can blog, can appear and testify eloquently, can function independently in society. Unfortunately, my son’s condition sounds quite different from what is going on in these individuals.
I accept and love my son the way he is and it certainly is a worthwhile endeavor to strive for love and acceptance of those individuals with autism. However, it is criminal, in my mind, to leave his medical problems untreated.
cblakey
Autism is a spectrum so it’s the same autism as 20 years ago but there were a lot of missed dignoses.
Genius autistics some who speak some who don’t and someand some with other conditions on top who are more severe. Amanda Baggs uses a computer to speak.
Some autistics who can speak now couldn’t speak when they were children high functioning autistics can never speak but can with use of computer.
They also added asperger’s syndrome to autism which raises the rates but many autism organizations like to pretend that high function autistics don’t exist.