Or at least he doesn't talk about what I understand the word "autism" to mean. If you look on the web or ask any medical expert, you will get a fairly consistent definition of what the word means. To pick one of the first sources that appears when you search for "autism" on Google (The Mayo Clinic), autism is -
Autism is one of a group of serious developmental problems called autism spectrum disorders (ASD) that appear in early childhood — usually before age 3. Though symptoms and severity vary, all autism disorders affect a child's ability to communicate and interact with others.
It's estimated that three to six out of every 1,000 children in the United States have autism — and the number of diagnosed cases is rising. It's not clear whether this is due to better detection and reporting of autism, a real increase in the number of cases, or both.
What is clear is that though there is no cure for autism, intensive, early treatment can make an enormous difference in the lives of many children with the disorder.
I think that most people would agree the above definition is what we mean when we talk about autism. Unfortunately, Mr. Ne'eman does not seem to be among those who would agree. I am not sure of exactly how he defines the word but as you will see below, he isn't talking about what you and I call autism.
As the picture at the top of the post says, autism is not a tragedy but ignorance is. I would agree completely with that statement. A person who has autism is not a tragedy but rather needs help to overcome their disability. But ignorance of autism means - especially in one who should know better - is tragic.
Mr. Ne'eman, as a young adult with autism, should have a better understanding of what exactly autism is and what challenges it brings to children. Yet he talks almost exclusively about his own needs and the needs of other similar people who have taken refuge in the idea that autism is some sort of culture rather than a developmental disorder. He should know better but either fails to grasp the problems that autism that causes for children or chooses to ignore them.
I think have already made my opinion on Mr. Ne'eman clear, so this time I will let his words stand for themselves. The following are a collection of quotes from articles about Mr. Ne'eman or ones that he has written himself. As you read the quotes below, keep in mind the definition of autism above, and then you be the judge of whether he is talking about autism.
Who is Ari Ne'eman
Ne'eman is a master networker, a guy you'd think was born in a campaign office and bred in the halls of the Capitol. He's fluent in policy-speak and interacts seamlessly with high-level officials (he's just had lunch with the acting vice chair of the Equal Employment Opportunity Commission) and inquisitive reporters alike. He's formal but sociable and has a well-timed sense of humor.
The day will come when Asperger's will be recognized for what it truly is: a difference, not a disability, and in many ways an advantage.
Ne'em describes Asperger's and autism as disabilities — but with a twist. "We're disabled by society," he says. "What disables us is, for instance, an education system that's only designed to meet the needs of one kind of student, or societal prejudices which say that autistic people will never be able to live in a community."
"Autism disorders exist along a spectrum, with great variance from one person to another. Ne'em argues that his condition is part of his identity, the same way gender or ethnic background might be. "We are proud of who we are," he says"
"Too often, he says, the voices of those with autism are supplanted or diminished by those who do not have it. Ne'eman is especially troubled by those who argue that autism is a disorder to be eradicated – and not a culture to be embraced."
The object of autism advocacy should not be a world without autistic people — it should be a world in which autistic people can enjoy the same rights, opportunities and quality of life as any of our neurotypical peers.
As with previous civil rights movements regarding race religion, gender, and sexual orientation, we need an autism and disability advocacy that aims to change our society's institutions — from our educational system and places of public accommodation to more specialized infrastructures such as those for long-term care.
In many instances, the answers are not yet apparent for us, particularly in realms like communication, which poses one of the most pressing and important areas of challenge for our community. However, our existing autism advocacy and research agendas have not placed finding solutions to these issues high on their agendas, preferring to focus on environmental or genetic research aimed at providing for "cure" or "recovery," If we make the effort, we are likely to find ourselves surprised by what a true civil rights struggle will yield for us.
Autism is not a medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum.
Even a cursory glance at the magazine of the Autism Society of America reveals many such examples, with advertisements for vaccine recovery and Applied Behavioral Analysis, whose initial aversive-heavy experiments claimed to bring half of all children subjected to its methods to "indistinguishability from peers." These programs lack the research foundation they claim. For example, Ivar Lovaas' promise of recovery through ABA was based on the theory and methods used with "feminine boys" at-risk for homosexuality (Rekers & Lovaas 1974). That fact alone should give anyone pause.
The oft-cited concept of "recovery" from autism is not only scientifically unsupported but also dangerous in that it removes the very supports that made progress possible for many people with autism. Moreover, by equating developmental progress with a change in the fundamental character of our brains, the recovery concept denies the natural growth and skill acquisition that occurs for all individuals, regardless of disability. It is unreasonable to assume that autistics will be the same at age 30 as at age 3. The claim that addressing the challenges and behavioral difficulties associated with the autism spectrum can result in a fundamental re-wiring of a person's brain, to the point that he or she is no longer autistic, is ridiculous.
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I could go on but I think the point is clear. Mr. Ne'eman is not talking about autism and definitely should not be representing people with autism on the National Council on Disability.
I could go on but I think the point is clear.
ReplyDeleteYes, you could, you forgot to mention the 'difference is not disability' essay, which was later edited by Ne'eman to state 'difference is disability when not accommodated for' after I (and possible some others) called him out on it.
You also forgot his statement that a solution for reducing unemployment among persons with autism is eliminating social pleasantry as a criteria for hiring.
These two examples (in light of the fact that Ne'eman tried to cover up the first) might be more relevant than some of the others you gave, but I understand that Ne'eman has so much metaphorical garbage and has allowed himself to paint such a figurative bullseye behind his back, it is hard to list them all.
If a candidate for the supreme court or a cabinet position had this much baggage I can only imagine the hardball questions that various senators would be giving him and what a field day the media would have.
You are right Jonathan, there were a few other of his important essays that I didn't include. But with so much to choose from, it was hard to decide what to what nonsense to include.
ReplyDeleteI hope that someone on the Senate committee has am aid who knows how to use Google and they find any number of the silly statements Mr. Ne'eman has made about autism and points them out to their boss.
Just before the NY times story came out about Ne'eman's confirmation process being held up, some staff members of the U.S. Senate were reading my blog entries about Ne'eman or at least looking at the briefly, according to my sitemeter stats. So the scenario you are talking about certainly is not out of the question.
ReplyDelete" But ignorance of autism means - especially in one who should know better - is tragic."
ReplyDeleteHow arrogant do you have to be to tell Autistic people about what it is like to be Autistic? The moment that parents talk about why don't they hear their autistic children more often it is because they bully autistics in to silence. Just like this post.
Whatever. Why don't you come back when you get a clue.
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