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>Lisa Jo, Loopy, Lutz: What’s it all got to do with Ari Ne’eman and Neurodiversity

December 22, 2009

>Lisa Jo Rudy serves as the “About.com Guide to Autism” and does her best to straddle the fence and not offend anyone. Of course, the result seems to be more that she offends everyone. Some things it’s just not possible to be Switzerland. This happens to be one of them.

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.
 
Lutz writes:
 

“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.

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14 Comments
  1. December 22, 2009 6:25 am

    >I know of Ari's personal friend online I have been talking to her about his recent nomination. I'm pleased because I know that there is hope. Hope for mine and the students I work with generation. She is please with him too.As I read the article I chuckled, because there it is again. The NT pro-cure advocates totally miss the fact that their is LFA autists out there that support ND. It makes me laugh how their are more than just Amanda Baggs out there that support ND or at least the right to be as is. Why are pro-cures so afraid of us? Why? Are pro-cure so afraid of their son or daughter speaking and finally saying "Please stop" or "No more" when they force them do drink some stupid concoction? Do they ever ask if their child wants to be cured. Or show them both sides of the story? Of course not. They love having power.

  2. December 22, 2009 4:24 pm

    >Fantastic post, Kim! The influence of the vaccine rejecting, anti-science crowd is grossly overestimated. Less than five percent of parents of autistic children rely on unverified and/or fabricated statistics to make their point. You can look it up! *__________________* But don't bother.

  3. December 22, 2009 5:35 pm

    >I only have one thing to say.There is such a a massive difference between Asperger's,and the more severe forms of autism,that someboby with Asperger's has no right to speak for anybody with a more severe form of autism.And that goes double for someone whose Asperger's is so mild they are barely on the spectrum,like Ne'man.

  4. December 22, 2009 7:39 pm

    >Roger,somebody with Asperger's has no right to speak for anybody with a more severe form of autism.Who then has a "right to speak" for the "more severely autistic"?

  5. December 22, 2009 8:04 pm

    >By that logic, the people at the Humane Society of America have no business advocating for dogs and cats.

  6. December 22, 2009 10:46 pm

    >"someone who's autism is so mild that they are barely on the spectrum."You know, I love this argument. Autistics can't speak for themselves, because those who do are simply "not autistic enough." Autistics by this very definition are those who can't speak for themselves. A classic "no true Scotsman" argument. As for Mr Ne'eman, I think he's a fantastic choice. I've met him, and his passion and dedication will serve everyone well.

  7. December 23, 2009 2:03 am

    >that someboby with Asperger's has no right to speak for anybody with a more severe form of autism.Aspies are a better choice than say an NT who has no fucking clue what's like to be on the spectrum

  8. December 23, 2009 4:05 pm

    >@Roger Kulp: I am deeply confused by your logic. Firstly, if there is such massive gap between Asperger's & 'more severe forms of Autism' that a person with Asperger's have no right to speak for a person with more severe form of Autism – what does that say about the assumption of NTs of the right to speak for any of us??? You are actually by your logic saying that NTs have even less right than persons with Asperger's to speak for 'person with more severe form of autism' yet apparently believe you are making case for the opposite. Secondly, by what logic do you state that Ari is 'so mild they are barely on the spectrum'? This is nothing more than 'divide & rule tactics' used by persons who wish to obtain power in a given situation, regardless of the effects of doing so on others, & regardless of TRUTH… Why do you Feel need to use such tactic?It would be better for everyone, most of all yourself, if you would confront your own fears about Autism & Autistic people. People who seek to denigrate & exclude others only do so as means to cover up their own Feelings of exclusion & denigration.

  9. December 24, 2009 4:06 pm

    >Actually, I've written multiple blogs criticizing Autism Speaks for not including individuals with autism on their board. The issue, IMO, is not whether an adult with autism should be selected to represent people with autism (absolutely, I think they should!), but whether Ari Ne'eman should be that person.As to whether someone has the "right" to advocate for people who are not like them… well, I personally would rather see a person with autism advocate for people with autism than not, but I do understand that there's a fear that the advocacy will focus on more "abled" individuals' needs.Ari has already spoken up on this issue in a positive way. I'm also hoping that he (and Autism Speaks, and others) will keep an open door for parents of kids and adults who are disabled to the point that they can't speak for themselves.Lisa Jo Rudy (autism.about.com)Autism at About.com on Facebook

  10. December 24, 2009 4:10 pm

    >BTW – you're right: being "Switzerland" is no small challenge in the autism world. But I think my mandate on the About.com site is to open the doors to as many people as possible while also providing solid, medically reviewed information.Don't know if you're aware that the site is not so much a blog as it is a collection of hundreds of articles, a forum and a newsletter. The Autism site is just one of 766 About.com guidesites on absolutely everything in the world.Just FYI.Lisawww.autism.about.comAutism at About.com on Facebook

  11. December 24, 2009 5:04 pm

    >Roger, thanks for your normal fly-by. Lisa, I appreciate your comments. Yes, I was aware of what about.com as well as the specific autism section entailed. 🙂

  12. December 25, 2009 7:53 pm

    >Well boy howdy Miss Kim! I'ma wonderin if folks would be less outta sorts iffen there weren't people misrepresentin what the term neurodiversity means..misrepresentin what Ari says an all….And Roger darlin, we all know you is lookin for a spankin! Darlin you is so self absorbed-you is poopin yerself out!

  13. December 26, 2009 2:10 pm

    >Opening the doors "to as many people as possible" doesn't preclude taking a clear stand against nonsense.

  14. December 26, 2009 11:41 pm

    >Really well said/written Kim-the idea of even trying to be "Switzerland" is a load of crap. We are talking about human beings-there is no fence sitting when it comes to basic human rights, accomodation and acceptance-none. Yes, people can argue about Ari being nominated-whine and moan, complain that he isn't "autistic enough" isn't experienced enough,etc.etc. And I think-look at all he has accomplished so far. I look forward to seeing all that he will accomplish in the future.. As for parents serving on the disability council-there are far too many people who just want the recogniition-it has nothing to do with autism per say, but with a "Look at all I'VE done to further promote autism awareness" It is all about their perception-and although I would never diminsih any parents experience-I often times find myself questioning their perspective.

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