Rudy writes of Ne'eman's nomination to an administration position on the Council on Disability:
"By selecting Mr. Ne'eman, the administration has made a statement that may be unpopular within the autism community. Not only has he selected an individual on the autism spectrum (rather than a parent, researcher, or other representative of the autism community), but he has selected and autistic man with very specific views on the issue of autism-related policies."
First off, Rudy is making a blanket statement regarding the autism community as a whole. With somewhere between 300K to 750K children under the age of 18 and over a million adults with autism in the US alone, depending on what prevalence rates you want to go with and what bad estimations you'd like to use, that's a pretty big community. Rudy's taken the few thousand to tens of thousands of cure-hungry, recover-my-child-at-all-costs folks and posited them as the autism community. And she betrays her parent-centered postion by making reference to the fact that Obama actually picked someone with a disability rather than someone who has to deal with the disabled. The horror!
Listen, disability rights ought to be about the disabled and their voices, their needs. Just like parents of the disabled ought to be focused on their children and the disabilities impact on the child rather than being focused on how the disability really screws with their pedicures and manicures. I'm not suggesting parents martyr themselves, just that they remember that autism is primarily about the person who has it, not you as the parent.
*(I apologize for this paragraph; it is awkward as hell, but I'll leave it alone.)* The other problem with attempting to pander to all sides of the autism community (and it does come off as pandering at times) is that Rudy inflates the size and importance of the autism/vaccines community. If AoA's page hits per month (around 86K according to trafficestimate.com), facebook fans, and twitter followers and the collective memberships in various autism/vaccine related groups are any indication of the true size of the autism-vaccine side of things (who all also appear to be staunchly against the ideas of respect and acceptance of individuals with disabilities), their reach, considering the actual population of autistic individiduals, is insignificant at best. Losing their support, which I'm not sure anyone who doesn't agree with them lockstep has, would be no big deal. Why, even AoA today acknowledges their puniness. Obradovic writes:
"We have no money, no budget to fund the science our children so desperately deserve, and are probably among the most burdened group of activists out there. We operate from yahoo groups and a blog."
Although it's an aside for the purposes of this post, Obradovic also refuses any accountability in deaths that might result from people not getting vaccinated:
"I refuse to take responsibility for any assumed swine flu deaths by failure to vaccinate."
But back to the main course: Rudy's what-do-you-think post regarding Ari Ne'eman's nomination. Doherty chimed in, no surprise. Hates it! Anti-vaxxers weighed in. Hate it!
Someone named LoopyLoo weighs in and starts off what is sure to be attention that a writer named Amy Lutz and a doctor named Lee Wachtel were not expecting:
"I’m frustrated and worried. High-functioning, highly verbal people with autism have just about zero in common with my severely impaired, non-verbal child. I’m glad that things have worked out so well for him, but in the general population of people with autism only about five percent will ever be able to participate in a movement like neuro-diversity. Acceptance of/for people who aren’t NT is a fine and lovely goal, but I’d rather have a cure."LoopyLoo eventually posts the doctor's name after prompting by ANB (Ken Reibel) but refuses to divulge the actual article it was from.
Ken and I did some digging and traced it back to this post by Amy Lutz at Babble and Ken took the time and effort to verify the quote with Lutz, Wachtel and the Institute's PR office and posted this information to the comments at Rudy's.
Autism News Beat (Ken Reibel) writes in response to Loopy's post:
"By all MEANS, contact the doctor and confirm that I’m not putting words and numbers into her mouth."
"Thanks, Loopy. I took you up on your advice, and received this reply from Kennedy Krieger’s PR office:
Regarding Dr. Wachtel’s quote, her comments were pulled from a conversation that she had with a parent. She wasn’t aware that they would appear on a large web site as was the result. Her comments were also made relative to the severely impaired patient population that she sees. The majority of these patients can be described as she did in her comments, but the full context of the discussion would include mention of the fact that advances are happening in the field of early intervention which may change outcomes for toddlers who are being newly diagnosed today at age two or earlier. Also – she does not have a citation or reference for the “less than 5 percent” reference. Again – it was a casual comment made to a parent, and within the context of her patient population.
Amy Lutz, who originally posted the comment on her blog, told me by email that she got the quote directly from Dr. Wachtel.
Hope this clears things up!"
Loopy may have opened, and certainly Lutz will have, a bigger can of worms than either was intending. Wachtel appears to be hampered in clarifying her position by needing her comments approved by the PR office first, making Lutz's quoting of her in the first place problematic at best.
"Dr. Wachtel estimates that "less than five percent" of diagnosed autistics have the linguistic and cognitive skills to participate in this movement. "Most are not going to grow up to be Temple Grandin," she adds, referring to the famous autistic author and doctorate in animal science. On the contrary, Dr. Wachtel believes the average autistic will never go to college or live independently, and instead will struggle his entire life with the communication and social deficits that define the disorder — which makes sense to me, given Jonah's level of functioning."
This article by Lutz appears on Babble.com, has the appearance of journalism, and quotes a doctor in support of Lutz's contention that neurodiversity is a bad thing, overall. It doesn't help that Lutz doesn't seems to understand what neurodiversity is (appearing to have taken that definition from someone like Doherty, Mitchell, or Kulp, or just as bad, Age of Autism) and further hammers home her lack of understanding by writing this horrendously inaccurate conclusion:
"This is where neurodiversity is most dangerous — in the idea that early intervention should be eschewed as a rejection of our children's differences."She compounds that with confusing unconditional acceptance with doing nothing to intercede for the child, nothing to help the child function better. It only gets worse, though. Lutz writes:
"Because if some autistic individuals and their families don't believe that autism is a disability, then why should anyone else? And if autism isn't a disability, then why should the public extend any more patience or flexibility or empathy towards those with autism than towards those without?"
Neurodiversity is about acceptance of people with disabilities into society as full, included members. If you're really neurodiverse, acceptance of all increases. Acceptance of those who are disabled increases. Treatment improves. How do you not get that? How does anyone miss that if people have more empathy, more understanding of neurological differences, if they get that some folks are wired differently and cannot help that some of their behaviors do not meet the current socially acceptable ones, acceptance and empathy for the individual as an equal member of society can happen. In fact, it's the only way it is going to happen. How can you be a parent of a child who faces such tremendous hurdles and not get that? Not bust your ass to change the world for greater acceptance and greater assistance for those who are different, who are disabled? What the hell is wrong with this picture?
Bad as all that is, and sad as all that is, she makes clear where she really stands with her closing salvo:
"I can only hope that, now, the vitriol directed against parents who express concerns about potential environmental triggers — yes, including vaccines — will cease, and people will begin to recognize that, as we fight against the rising tide of autism that, as Dr. Piccotto notes, "shows no sign of abating," there is no room for us versus them. There must be only us."
Having waded through Tim Welsh/Tannersdad's idea of unity in the autism community, seeing Lutz's complete misreading of neurodiversity, and Rudy's idea that appointing someone on the spectrum with actual frakking ideas on treatments is a shocker and sure to displease, I have to say I really hope the numbers of parents who feel this way about the disabled, which include their own children, are really in the minority. Look, if unity means agreeing with any of these folks, forget it.
As soon as they start putting their kids front and center and working to make the world a softer, easier place for them rather than a more inhospitable unwelcoming place, maybe we can talk. So far, I see no evidence that this about their children and helping their children find acceptance.
Ari Ne'eman's nomination is a good thing. He is a vocal advocate for those on the spectrum. No, he doesn't speak for everyone, anymore than I do. But he has a voice and he's using it to advocate for integration into society, for better resources, for acceptance of the disabled.
If you're really against that, then there can be no unity. You don't have to agree with Ne'eman down the line. You can even think he's awfully young, and he is. Good. It means he also has the energy needed for this job and the lifetime it will undoubtedly take when we have take on some of those who should be the disabled's greatest, staunchest supporters: their parents.
I wish Ari good luck. I'm glad he's willing to do this, and I'm glad he's able to. Is he not the very success story all these parents who want to recover their children are always clamoring on about? I wish my son, who is only a year younger, had that voice, had that intellect, had that ability to stand, to take on such adversity from the very people who should be cheering him on. My bright boy cannot advocate for himself, not like that, cannot live independently, cannot drive, and cannot work. He can lead a satisfying and happy life, though, with proper supports and acceptance. I will work tirelessly to make sure that the world out there, outside his sheltered world, grows more accomodating, more accepting, so that someday, there will be a place for him the wider world, maybe a job, a job where he can be protected, be supervised and assisted, and be of service. Until that day, I will be glad that Ari and others like him are out there, working to make it so.