Tuesday, November 03, 2009

New York Times Examines Autism and the DSM V, From an Aspie Perspective, Of Course

Perhaps the New York Times is about to shock me and publish an article discussing potential changes to the "autism spectrum" of disorders in the DSM V from the perspective of the impact such changes might have on the lives of those with severe autism, from the perspective of low functioning persons with Autistic Disorder, like my son, Conor Doherty. For now though, like almost every mainstream media article or opinion piece discussing the "autism spectrum" it has done so from the perspective of those on the High Functioning end of the spectrum. The NYT mentions, but does not explore, the impact on the more severely affected of proposed changes to the "Autism Spectrum" of disorders in the DSM V.

In A Powerful Identity, a Vanishing Diagnosis the NYT focuses on the possible loss of the "Aspergers" label by inclusion of Aspies in an autism spectrum divided by levels of severity without reference to the Aspergers label. Ari Ne'eman is referenced talking about the importance to him of being on the Autism Spectrum:

"My identity is attached to being on the autism spectrum, not some superior Asperger’s identity. I think the consolidation to one category of autism spectrum diagnosis will lead to better services."

The NYT has, once again, found it within itself to discuss autism in terms of the most fortunate amongst the "autistic", those for whom one of the most serious issues is a question of identification with one label as opposed to another. The NYT, as it and the mainstream media at large, almost invariably do, provides little comment on the lives of the most severely affected by autism disorders, the many persons with Autistic Disorder who are low functioning, some with Intellectual Disabilities, some who do not understand the world in which we live on anything but the simplest level, some with very limited comprehension of language ... some of whom live out their lives in residential and institutional care.

The New York Times did mention that the proposed changes to the DSM will possibly include express description of various conditions which often accompany autism disorders, such as "anxiety, attention disorders, gastrointestinal problems, seizures and sensory differences like extreme sensitivity to noise". The Times studiously avoids any express reference to the persons with Autistic Disorder and Intellectual Disorder. A sure sign of the success of the High Functioning Autism and Aspergers groups efforts to prevent any discussion of autism in connection with intellectual deficits.

The NYT quotes Dr. Temple Grandin on the dominance of the Aspergers advocacy groups in dominating public discussion of autism: The Asperger community is a big vocal community, "a reason in itself” to leave the diagnosis in place. For many parents and family members of severely autistic children Dr. Grandin's comments are not news.

This NYT piece itself reflects the domination of autism in the public mind by Aspergers and High Functioning Autism and the exclusion of the Low Functioning, Intellectually Disabled and severely autistic persons with Autistic Disorder.

Organizations such as Autism Speaks are routinely targeted by the big vocal Asperger community for realistically and honestly depicting the life challenges faced by the severely autistic. An even bigger indication of Asperger community dominance occurred when Autism Speaks "kow towed" to this community and pulled its "I Am Autism" video from its web site.

For the NYT, and for Autism Speaks, it is now far more important to talk about Ari Ne'eman's sense of identity than to talk about the severely autistic children who go missing or those who live their lives dependent on the care of others.

Bookmark and Share


farmwifetwo said...

If it would protect the younger, the elder could lose his dx tomorrow IMO. We'd manage, h/s may be a challenge, but for public school the foundation is in place so we can move forward using the LD's from the psychometry and language exams last year.

All I can do is hope the V is more stringent in it's requirements than the IV. That it's no longer "cute" to be on the spectrum since you can't call yourself "aspie" and make it sound like you are "superior".

When I told that to the child psych over the summer, I got the "I have doubts it'll be that way" look.... sigh... Will ask my Ped about it in a couple of weeks since he and the Fam Dr will both tell you that under IV "anyone can be dx'd with anything".

All we can do is keep moving forward... one day at a time.

Adriann said...

I am a very high-functioning person with ASD-NOS, and I have to say I agree with everything in this blog post. Autism IS a spectrum, and this spectrum includes Asperger's, but ther is a dire need to categorize all the different forms that autism takes. That way, there is no confusion. I have my challenges. I "earned" by dx, I may need services again and want to be able to access them. I certainly want to be understood. This is why I am against removing AS from the DSM-V.

But people like your son are every bit as entitled to understanding as we are, and they are every bit as entitled to receive that which wil help him function better. For me, it's patience, acceptance, and speech/language therapy for the most part. For your son, it's patience, acceptance, ABA, a host of other things probably, and hopefully a cure for autism. This is yours and his right.

I consider myself a member of Neurodiversity, but only for myself. I am happy with my life the way it is and I see positive aspects of my disability. Other people don't feel the same way, however, and that's okay. How can I stand up for the rights of autistics and at the same time deny them the right to have certain thoughts and feelings and live their lives as they see fit?

I also have personal experience with the confusion that club ND has wrought on the subject of what autism is and isn't. I'm SOOOOO tired of people who are mostly self-diagnosed Aspies telling me about their "problems," like how sometimes, they lose their temper or don't say things quite as well as they would like sometimes. That's having a temper and not being articulate. That's not AS.

Their main claim to an AS diagnosis is being interested in comnputers, science, or just in general not fitting into society. That's not AS. And I LOVE how they say they are not into "that social stuff," i.e. neurotypical stuff, but they have no problem navigating the insanely strict, contradictory, and most unwritten rules of political correctness on "social justice" blogs. Oh,and they get married, have children, and are popular in clubs with no problems!

This last one is my favorite. One person claimed he had a "litte bit of autism" because he had mild dyslexia.

That's mild dyslexia, you pinhead, not autism.

It makes me so, so mad, and people, of course, tell me that it's not big deal and I'm not trying hard enough. Whatever.

navywifeandmom said...

Wow. The NYT ran a sane autism article?

(Glances out window to see if the proverbial swine with wings is working his way through the sky.)

Ian MacGregor said...

When does one have HFA? When does one have Aspergers? Asperger's suffer no language delay was once the answer, but that is not so clear now. An HFA person has more in common with an Aspergers person than with an LFA sufferer.

What about the divisions. Perhaps will have

Mild Autistic Disorder,
Autistic Disorder
Severe Autistic Disorder

with the very high functioning and the ones now diagnosed with Aspergers put into the first group.

The second group for the relatively severe to relatively high functioning, and the last group for those most highly afflicted.