An interview with Ari Ne’eman, President Obama’s controversial appointee to the National Council on Disability, was published this week in Wired.com. It was Ne’eman’s first time talking with the press since his appointment (held up for a while by Congress) earlier this summer.
As reporter Steve Silberman points out in his intro to the Q&A interview, the nomination of Ne’eman, 22, drew stinging attacks from “some self-proclaimed allies of the autistic community [who] think national dialogue on the subject should focus primarily on finding causes and cures so that autism can be prevented in future generations.”
Writes Silberman:
In March, the editor of an anti-vaccine website called The Age of Autism challenged Ne’eman’s ability to serve the needs of more profoundly impaired autistic people. [Ne’eman has Asperger’s syndrome, considered a milder form of autism.] “Do the highest functioning with the community,” wrote Kim Stagliano, “have a right to dictate the services and research that should be available for their less fortunate ‘peers’? I don’t think so.”
Some of these online attacks escalated into threats. One anonymous emailer to a federal agency in Washington wrote that “assholes like Ari Ne’eman” should “have their tongues cut out” for suggesting that autistic people need respect, civil rights, and access to services more than they need pity and a cure. This conviction has made him a leader of the emerging neurodiversity movement, which Ne’eman sees as a natural outgrowth of the civil rights, women’s rights, and disability rights movements of the late 20th century.”
(The neurodiversity movement argues that not everybody can be neurologically typical [or neurotypical, to use the movement’s preferred term] and that neurological differences [“different types of minds,” says Ne’eman] should be accepted and respected.)
Silberman’s Q&A with Ne’eman is long, but eye-opening — and provocative. Ne’eman states that not only is there “a disturbing lack of attention to science” in the current conversation about autism, but that the “national dialogue on autism” has been going on too long “without the voices of the people who should be at the center: those who are on the [autism] spectrum ourselves. Instead of focusing on things like quality of life and civil rights, the autism community has been distracted by narrow questions of causation and cure.”
I encourage you to read the entire interview, but here’s an excerpt:
Wired.com: Though you criticize groups like Autism Speaks for focusing on a cure, if someone offered you a pill to wake up tomorrow without autism, would you take it?
Ne’eman: That’s an intensely silly question. How can I draw a line around one part of my brain and say that this is the autistic part, and the rest of me is something else? That way of looking at autism is predicated on the strange idea that there was or is a normal person somewhere inside me, hidden by autism, and struggling to get out. That’s not reality.
As a society, our approach to autism is still primarily “How do we make autistic people behave more normally? How do we get them to increase eye contact and make small talk while suppressing hand-flapping and other stims?” The inventor of a well-known form of behavioral intervention for autism, Dr. Ivar Lovaas, who passed away recently, said that his goal was to make autistic kids indistinguishable from their peers. That goal has more to do with increasing the comfort of non-autistic people than with what autistic people really need.
Lovaas also experimented with trying to make what he called effeminate boys normal. It was a silly idea around homosexuality, and it’s a silly idea around autism. What if we asked instead, “How can we increase the quality of life for autistic people?” We wouldn’t lose anything by that paradigm shift. We’d still be searching for ways to help autistic people communicate, stop dangerous and self-injurious behaviors, and make it easier for autistic people to have friends.
But the current bias in treatment — which measures progress by how non-autistic a person looks — would be taken away. Instead of trying to make autistic people normal, society should be asking us what we need to be happy.
While talk of quality of life and civil rights is important and understandable for those on the low end (or high functioning end, I’m uncertain of the correct terminology) of the spectrum like Mr. Ne’eman, there are a significant number of people on the high end of the spectrum who largely do not function. Treatments and “cures” are important for them.
The low-functioning/high-functioning distinction is fairly arbitrary. Is a person who is in diapers at age 5 but has been reading and writing since age 3 high- or low- functioning? Is a person who can pursue a career but flees the office party in tears without having spoken to anyone high- or low- functioning? For autistics, like many people, “functionality” in a particular aspect of life depends on preparation, situation, and support. Mr. Ne’eman is bringing important ideas to this discussion. I applaud him.
Perhaps. But I would argue those that you describe would fall towards the high functioning side.” Certainly, they have issues that need to be and can be addressed. But their issues do little for those on the far low functioning end of the spectrum: the ones that are nearly catatonic. They need treatment options.
But then, I’m looking at this as an individual with a cochlear implant. Mr. Ne’eman’s positions strike me in a similar way “Deaf” advocates arguments strike me. The ones that accuse me of being Satanist, or committing genocide.
Ari Ne’eman can provide the National Council on Disability with many useful first-hand insights regarding living with autism and promoting basic civil rights.
But will the very-high-functioning Ne’eman prove to be a voice for the nonverbal, for the severely disabled? And will he attempt to squelch health recovery stories from individuals and families who’ve alleviated crippling medical conditions often comorbid with the psychological behaviors that garner the autism label?
Regarding the Wired article, Steve Silberman inaccurately describes the Age of Autism blog as “anti-vaccine.” It’s akin to calling Consumer Reports “anti-car.”
The Age of Autism regularly reports a censored topic — consumers’ vaccine safety concerns — blacklisted by most media, as requested by HHS Secretary Kathleen Sebelius. Product failures unmonitored by media and unanswered by public health administrators unsurprisingly continue to increase, at the expense of our health.
I believe the official definition of high functioning autism is that it is present in a person with an an over 70 IQ. That was the information presented by Dr. Ortiz at a workshop I recently attended.
If you want to grasp the concept of Autism try the Redbox rental “Temple Grandin” about a women by this name who grew up autistic and now designs a lot of the livestock handling systems in use.
For Aspergers Syndrome try renting “My name is Khan” again at Redbox for $1.
This tends to remind me a lot of “deaf politics” where there were fierce debates about this like cochlear implants, especially for deaf children. That basically got down to disability status/accommodation, monetary support related to the disability.
The “on whose dime?” question.