Monday, January 11, 2010

Autism Outreach Group Excludes Low Functioning, Severely Autistic Persons

A group of persons with autism spectrum disorders has been formed in the Tri-Cities Washington area but membership is for persons with High Functioning Autism and Aspergers disorders. Low functioning, severely autistic persons are not included in the group. In  New group forms for high-functioning autistic Tri-Citians  The News Tribune reports on the founding of the  Three Rivers Autistic Outreach a social group for persons with High Functioning Autism and Aspergers:

""   Ellen, whose autistic diagnosis is pervasive atypical development disorder, is a high school and college graduate and trained as a paralegal.

Meier learned of her Asperger's condition a few years ago when her husband suggested she be tested for autism.

But when Meier and Ellen became acquainted after meeting at an autism picnic, the social connection clicked.

"It's a very isolating condition," said Ellen. But once people with autism who are high-functioning link up socially, their lives have a new dimension.

"We have a unique understanding, we laugh together. We don't notice the twitches. We can just be ourselves," she said.

"Without having people look at you funny," Peters added.

Another reason Peters formed the peer group is that plenty of support can be found for young autistic children, but there isn't much for autistic young adults, particularly high-functioning people.

"The high end (of autism) gets ignored. You can't find others so easily," Peters said.

I do not intend this commentary as a criticism of the members of this group with High Functioning Autism and Aspergers Disorder. To the contrary,  I applaud their common sense and honesty in describing themselves accurately as a group for High Functioning members of the autism spectrum.

I wish the same accuracy, common sense and honesty would be displayed by the brilliant members of the ASAN Board of Directors all of whom are persons with High Functioning Autism and Aspergers.  In the same vein I wish the high powered mainstream media  that dotes on Obama disability appointee Ari Ne'eman would understand that while  Mr. Ne'eman would undoubtedly fit in at gatherings of the Three Rivers Autistic Outreach my son with severe Autistic Disorder  will never be able to function in such a setting.

The DSM re-designers would be well advised to consider a clear demarcation in the DSM V between those with low functioning, severe Autistic Disorder, including the 75-80% who are cognitively impaired, on one side and High Functioning Autism and Aspergers Disorder on the other side.  It is a divide acknowledged openly and honestly by the Three Rivers Autistic Outreach group. It is a divide which exists on, but is not openly acknowledged by .the ASAN "Autistic Self Advocacy Network"  Board of Directors.

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Corrie Howe said...

First, I found you from a comment on another site. I blog about "the joy in the daily challenges of Asperger's Syndrome."

I agree with you. I am concern about the change in the DSM. There is a huge difference between one end of the spectrum and the other. I fear that those in need of intense services may be denied such in the future or vice versa.

While I can see similarities in my child with high functioning autism and my friends with severe autism, it is really not the same.

Astrid said...

Of course, it is better if a group is going to exclude those with severe autism, that it will explicitly say so, than to have groups claim to be by and for "autistics" but deliberately turn down severely autistic people who want to be members. However, what I am concerned about is their definition of "high-functioning". I mean, I am technically eligible for membership in the Dutch self-advocacy group, because I am over 18 and have at least an average IQ. However, when one of the group's representatives spoke at my former university several years ago, I was already extremely annoyed at the definition of "high-functioning" she turned out to use in practice, that is, being able to live your life independently, and if you need support, to arrange that for yourself. She also went on and on about how high-functioning autistics can be really independent if taught by autistic role models, blah blah. I did not meet her standards by then (but then again I could've blamed it on blindness), and I certainly don't meet her standards now, but technically speaking (as in IQ and language ability) I am high-functioning. If by "high-functioning" the group means IQ above say 85 and ability to communicate with speech, it is fine with me, but then they shouldn't go on kicking out or denying the reality of those who fall within that category and don't, say, live independently, go to school or work, etc.