Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism

The above is an article from The New York Times about the president of the Autistic Self Advocacy Network, otherwise known as ASAN, Ari Ne’eman. His nomination has been placed on ‘Hold’ anonymously. As a candidate, President Obama had very high remarks for Mr. Ne’eman.

Ari Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions. He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services. He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion. Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he studies political science and expects to graduate in May 2010. In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder.

His nomination marked a first and if nominated, he will be the first person with an Autism Spectrum Disorder on the NCD. As stated, that nomination has been placed on hold. In the NYTimes article, Autism Speaks co-founder Jonathan Shestack was quoted to say the following:

“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t.”

The summation does not seem accurate. As articulated in UMBC Magazine: Winter 2009, Ari Ne’eman is very aware the difficulties faced by those not only with Autism Spectrum Disorders, but of most people with a variety of mental and cognitive disabilities as well. Mr. Ne’eman spent much of his educational career in a separate public school for those with emotional and mental diagnoses. His Asperger’s Diagnosis does not preclude him from having been placed in the same segregated, self-contained schools that the ‘Low Functioning’ Autistic students did. Who better to help write legislation and promote liberties than someone who has experienced those issues?

As well, Mr. Ne’eman and ASAN have been very active on getting The Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) passed. While critics say the bill doesn’t go far enough, it is a very important initial legislation to stop the abuse of all students, not just those with disabilities.

In 10 short years, Ari has gone from being diagnosed with Asperger’s Syndrome to being just one mere step away from serving on the National Council on Disabilities. Through those years, he’s had to fight his segregation from the mainstream. He became a young voice in New Jersey to help those just like him. Then to founding a now national organization with several chapters across the US, not to mention affiliates across the globe. Just to be silenced again. To be segregated again. To be told that all the fighting, all the changes he’s helped to come through is not enough. That he needs to stop fighting for those who have no voice because it’s more important to find the cause to eradicate Autism.

Stand up for what’s right. Do not let Ari Ne’eman’s voice be silenced. Call your Senators, email them, write letters. If his voice is silenced now, who will be next? When are Autistic people going to be given the right to speak for themselves?

Three things have happened in the Autism world. Parenthood started airing on NBC last week. Last night was the second episode. The episodes are also available to watch online if you’re like me and don’t want to admit you’ve watched it. One of the three families has a son that was diagnosed with Asperger’s in the first episode. A lot of parents of Asperger’s kids said they really identified with the parents. What became apparent was that Asperger’s children are still seen as not having acceptable ‘behaviors’ to stay in their placement. The boy was being kicked out of a private school in the same episode. Just another place where Asperger’s is not accepted and accommodated.

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Next up is the character known as Michael E Robinson, Jr. (link to original article) He is an acquaintance and all of his ‘facts’ are what he professes to be true. As you take a look at the article, the fact checking shows that most if not all his facts to be false. He has great zeal and passion about what he’s doing. The problem is, he has been alleged to have scammed money from parents, taking others work as his own, and tends to over-embellish his abilities. His numerous claims identifying him as an ally to the Neurodiversity community are false.

It does leave the question, why would he do such things?

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Lastly, Autism Speaks has nominated John Elder Robison to their Scientific Advisory Board. J.E. Robison is most famous for writing the memoir Look Me In The Eye: My Life with Asperger’s. On the surface, this looks promising. Autism Speaks is finally accepting a person with an Autism Spectrum Disorder into their community.

But what looks good on the surface is not so widely accepted by the Neurodiversity community at large. Mr. Robison states in his acceptance:

Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability.

While he sees remediation as a goal, the troubling part is that he wants to still research in causation. The subject has been rehashed again and again. The only true reason to research causation is to find a cure. A cure many do not want for themselves.

To go on, this is just one appointment. The Scientific Advisory Committee has 30 members. He can make an impact in the committee. Perhaps another 5% of research grants will go to Quality of Life research. This does not help their Awareness campaigns that show Autistics to be trapped and hopeless. They do not preach Acceptance. If they did, more than just one Autistic person would have been nominated. They continue to take desperately needed donations out of the communities. What little they do for the Adult Autistic community is hold online “townhalls” that cost $100s to get into which circumvents most Autistic Adults attendance!

This is very displeasing to many. To try to work from within is a noble cause, Mr. John Elder Robison, but the naivety that just one man can change the whole of a community so rooted in fear, anger, deceit and hate could be damaging for us all.