Have I said before that I miss a lot of the stuff going on in the vastness of the interwebz relating to autism? I'm pretty sure I have. Those of you who read me on a regular basis know that my emphasis is on countering the misinformation that places like Age of Autism and Huffington Post put out there about autism, treatments, and other woo while trying to promote a positive perspective on parenting children with issues and promoting the tenets of acceptance, accommodation, and appreciation for individuals with neurodifferences and disabilities.
I don't go onto many of the yahoo boards or the various forums that are out there, and I know that I don't know about the vast majority of them. My interwebz world is fairly limited, at least as it relates to that area of autism support groups on the internet.
I had no idea in saying I support Ari Ne'eman's nomination to the Council on Disability in my last post that I would get the whirlwind of exchanges I did, but it was an illuminating experience, to say the least. If you haven't glanced through the comments, I think it's worth your time, if for no other reason than as a reminder of how easy it is for communications to be misunderstood, even when two parties believe they are being explicitly clear. Ah well. We put ourselves out there, we communicate in good faith, and we hope for the best.
People (well, most people, anyway) like to categorize things, arrange them. It's why we have stereotypes and various heuristics: we make use of mental shortcuts to help us navigate the social (and outer) world successfully. These often fail us, though, and when we become aware of the pitfalls of these heuristics, like confirmation bias and availability heuristic, that we can take them into account when we're making up our minds about the outer world.
But what do we do when we are communicating with someone and the way we use language to communicate differs, as I found happening in last night's thread? We've all run into problems where we use words differently, to mean different things. Sometimes, these are agreed upon differences in connotation and we can work around it. Other times, though, the person is using the word in a way that we would argue based on all known definitions is wrong. Take censorship, for example. AoA's Katie Wright
argues that Sebelius is calling for censorship of the anti-vax position by the media.
Orac argues that censorship doesn't mean what she thinks it does.
It's no big deal, I suppose for Katie and Orac that they disagree on the word; they'd both willingly assert they are on opposite sides and nary a desire on either part to reconcile. And to a large degree, when there is a clear divide: autism is caused by vaccines/science shows no link between the two, I think a failure to reconcile the terminology chosen is understandable and unavoidable.
What do you do, though, where there is a disagreement on the usage of language between individuals who aren't at opposite sides? It's an interesting dilemma. Certainly, a willingness to operationalize the definitions by both parties so that each can see how a word is being used differently and at least have an insight that they are, in fact, speaking of different things and using the same word can be incredibly helpful to shifting the dialogue back on track.
What is also helpful, undoubtedly, is a willingess to hold one's ideas with a certain tenuousness, a malleableness to it, that allows one to bend when a miscommunication is signalled, or when new and contradictory information comes in, so that one can adapt to the situation and to the new information. Dogmatics and ideologues, like those in the "vaccines did this to my child" group, hold fast and tight to their version of reality, refusing to consider that their version of reality is not in keeping with the known scientific evidence at hand.
When we become closed, so certain of our version of reality, of events, that we will not shift, not one iota, we have, whether we like it or not, become dogmatic. It is not an adaptive trait. It certainly isn't conducive to constructive conversation and debate. It shuts it off, in fact, when one party is dogmatic.
All one has to do is wander over to Huff and read the exchanges in the autism-related articles and watch the dogmatics hammering away at each other, day after day. It looks like they're talking to each other, but they're not. They're using the other as a prop and nothing more.
We should want to move towards dialogues. Not between the dogmatics; I think once we've ascertained that someone is being dogmatic, just I've asserted before about not being rational, we can move on from trying to engage that person. I think I specifically said in a previous post, that unless you enjoyed the feeling of pissing in the wind, there probably wasn't much point to it.
I use the phrase autism community as a short-hand, not because I think we fit the definition of community particularly well, but because parents, educators, scientists, physicians, other support specialties, and the individuals on the spectrum all comingle on the various sites relating to autism. Community suggests we at least hold certain positions or beliefs in common. In a real-world community, we might all live in the same area. Or we might attend a church and hold core tenets in common.
I am not at all sure that the people navigating the internet world coalescing around autism have any core tenets in common, at all. I think there are many subgroups that do, but I think it's highly likely that as a whole, the center does not hold. People who believe their children are vaccine damaged and really, really sick are not talking about the same thing as parents who do not see their children that way. And that's just one division in the community. There may be very few commonalities, very few words or constructs used in the same way.
Unification of the autism community as a whole is not possible nor is it desirable, if we aren't even agreeing on the core tenets. We need, instead, to clearly delineate where we stand, how certain we are of our footing, and what our goals are.
If we agree on the operationalization of definitions, if we agree that we'd like to end up in the same place: acceptance, appreciation and accommodation, then I'd say we're in the same community, even if there are key differences in where we are coming from. Perhaps in this way, miscommunications can be averted and the center hold.
Recommend
Comments (16)
Excellent and well written post. Thanks
Commenters at the Huff are dogmatics but Kim Wombles is not? Are you serious?
Ari Ne'eman's nomination is controversial because:
1) He opposes curing autism disorders.
2) He has stated in the past his Aspergers is not a disability yet seeks a disability council position.
3) He purports to speak with persons with conditions he does not share such as children with severe Autistic Disorder and Intellectual Disability.
What is amazing is that given his positions you, a teacher of psychology support his nomination.
Ummm, Doherty, not to be overly pedantic, but perhaps a perusal at a dictionary?
Dogmatic: "characterized by or given to the expression of opinions very strongly or positively as if they were facts "
Perhaps that's still not entirely clear for you? Let me repeat it: as if they were facts.
Still not clear? Folks who put stuff out there that is factually incorrect are being dogmatic.
I know, you're a lawyer and things like facts aren't quite set in stone for you, but scientific evidence is pretty darn close to fact, and when folks like the anti-vax crowd scream about vaccines being behind their child's autism, they are being dogmatic.
When they argue that autism and asperger's are two separate things, despite pretty conclusive scientific evidence that they are not, they're being dogmatic.
When you personally go on and on and on about Ari and other stuff that isn't based on fact or evidence or even the available record, you're being dogmatic.
But hey, if you wanna follow my above recommendations that one can ignore dogmatics, I'd be pleased as punch to have you consider me dogmatic if it meant I didn't have to deal with you. Cool?
But while I'm here:
"1) He opposes curing autism disorders."
Depends on what you mean by cure, right? He opposed abortions based on genetic tests. He's all for treatments that improve functionality and the quality of life, so if that's a cure, he's not against that. See, semantics are such a bitch, aren't they? They sure do get in the way of really getting to the meat of things.
"2) He has stated in the past his Aspergers is not a disability yet seeks a disability council position."
Okay, would you like to be hoisted by the petard of things you may have said in the past but may no longer agree with? Forever condemned? Hmmm?
He may or may not view his Asperger's as a disability. But, if you employ a social model of disability, it is the lack of accommodations creating the disability and not the person's impairment. So,again semantics may play a role here. There's no question that autism creates significant barriers for individuals, whether they are societally imposed or functions of impairment that cannot be gotten around. As long as he recognized that there are people, regardless of the semantics, who are functionally disabled and who need assistance, accommodation, and appreciation and will work to that end, seriously, what's your problem with that?
"3) He purports to speak with persons with conditions he does not share such as children with severe Autistic Disorder and Intellectual Disability."
OMG, he actually talks to them? "speak with" -- I guess you meant for. Holy crap on a cracker, Harold, get a grip. You don't have your son's level of impairment, therefore, based on that requirement, you can't speak for him either or anyone else who differs in functional level. Oh wait, that's not what you meant, is it? Parents would be more than acceptable to speak for all disabled, even though they don't share the disability, wouldn't they? Umm, I can see where you won't see a problem with this mentality, but reasonable people who aren't wound up tighter than the spankx on a baptist minister's wife at the after-service luncheon might.
"What is amazing is that given his positions you, a teacher of psychology support his nomination."
Why leave out my being the parent to three lovely children on the spectrum, one of whom is significantly disabled and has a cognitive impairment?
Look, here's the difference. I don't think Ari is going to step into the position and speak for my children, for all children, that he will represent an entire group's positions. I also haven't self-justified myself into a corner, either, as some have. I think he is a bright young man with some flaws (oh, hey, we're all flawed). I don't agree with everything I've read by him, but I think he will bring an interesting perspective to the council and I think he will advocate for accommodation and more resources being directed at the children, adolesents, and adults already here, already dealing with a society that has little place for them.
Perhaps if you weren't so dogmatic, you might check your assumptions and ask why you walk around in a perpetually pissy mood all the time. I've got six years on you in this journey with autism and I live daily with the fact that my bright boy will be with me and in need of assistance every day of his life, that my daughters' futures are uncertain; will a lack of cognitive impairment be enough to ensure that they will work, live independently? We both know it's not.
But again, you're welcome to consider me dogmatic and move right on along, carrying your mad with you.
Ms Wombles thank you for your reply with its graphic illustration of dogmatism.
Your personal insults will be given the weight they deserve.
I too have an autistic child and I have worked hard for 12 years advocating, with some success, with other parents, for autistic services for autistic children. By success I mean that we have government funded ABA intervention services for autistic children aged 2 to 5 and we have autism trained teacher aides and resource teachers in our schools. We also have individual accommodations for place of learning with a variety of configurations in our schools.
My disagreement with Mr. Ne'eman is with his public statements and actions. He has consistently told very influential main stream media sources including the New Yorker magazine, the NYT and Canada's CBC that "WE" do not want to be cured, and regularly purports to speak on behalf of people on the autism spectrum. He has described as morally reprehensible the idea of trying to cure autism disorders and opposes research aimed at curing autism. He has protested fundraisers aimed at providing the means for such research to be done.You may agree with Mr. Ne'eman but I do not. That is the choice I exercise and I will move on or not as I choose not as you tell me in your reply.
Mr. Ne'eman a very high functioning person with Aspergers has made it clear that he chooses not to be cured of his condition. That is a choice that I respect.
It is unfortunate that Mr Ne'eman, and apparently you, would deprive other persons with autism spectrum disorders of that choice by opposing cure oriented autism research.
@AutismRealityNB -
Oh, Harold, you're at least a diversion. Sigh. First off, you didn't actually answer any of my rebuttals. But that's okay; it's certainly easy to pretend it was all just insults; good way to reduce any dissonance before it even buzzed up. Until you operationalize how you're using the words, well, see what I mean? You get your mad on (like you did on twitter the other day with dozens and dozens of tweets all in a row on Ne'eman).
I think I've already illustrated the efficacy of arguing with folks who've demonstrated a lack of, ummm, openness. See, I didn't call you dogmatic this time, just closed. Isn't that better? You're displaying a rigid two dimensional thinking and an inability to distinguish that semantics are at play here, and you really ought to be better at it than you're displaying.
I'd recommend you get a grip, define what you mean by cure, and then really look to see if we're arguing against different things. Because I don't think you get it at all. You've put your mad on and wear it like a self-righteous mantle. I find it morally reprehensible that someday potentially autistic fetuses may be aborted. I don't reject looking at genetic causes for autism, though, because scientists want to understand the why of things, and so that more severe impairments of autism might be mitigated. Many autistic individuals hear cure and think you want to elimate them; it is genocidal to them, as it should be. Imagine if someone said that folks like you, Harold, well, genetic testing ought to be done so that you could be cured. Hmm?
Instead of displaying any empathy, any attempt to see things from another's perspective, it's all about you and your need to have your son cured. What would a cure look like to you? Do you advocate abortions of potenitally autistic fetuses? What if a cure meant that all the things about Conor that you love and appreciate would also be destroyed along with the impairments? Would you be for a cure then, if Conor would in the trade off become a completely functional individual, with say, none of the perseverations you display, but complete strange to you and your wife?
I think in many ways, you have your knickers knotted over a misunderstanding of how the language is being used. And hey, if you don't think it's morally reprehensible that one out of a hundred or more fetuses could be aborted someday simply because they might be autistic, well, then we're standing on opposite sides of the fence. It'd be far worse than that, though, far more fetuses aborted out of the potentiality that there might be some impairment.
Your lack of precision in defining what a cure means creates half the problem. If you simply mean all impairments removed while leaving Conor's personality intact, then you're not talking about something different than almost all folks who advocate for acceptance, appreciation and accommodation are. And that you consistently miss it because you are so, umm, closed, is the biggest shame of all. It's just that many of recognize that not all impairments can be lifted, and that changing society will create better lives for the folks who are here now.
And beyond that, it's two-dimensional either-or thinking again. It doesn't have to be one or the other. This, this post, and the one above, are the reason I rarely read your blog or your comments out and about and see little point in conversing with you. I'll have spent this precious half-hour writing this, and you won't really read any of it. It won't make a bit of connection to you and you'll decide I've simply been insulting to you. It isn't about dialogue to you, or an exchange of ideas.
Back to Ne'eman and saying I support his nomination: supporting the nomination of an autistic person for the council who will speak for funding to help individuals here and now, boots on the ground, is not the same as supporting every single word written by the individual and does not in any way connote a lockstep approach with everything Ari or ASAN might advocate.
Harold, seriously, my previous post didn't hurl insults at you. I'm pretty sure if I go there, it'll be abundantly clear. Although if you are overly sensitive and prone to strong reactions, I can see being told you were dogmatic (and then having that defined clearly for you so there are no doubts about what I mean by it) might sting some. That's okay. The lovely thing is, you're free to go on about your life and your advocating and pay me no-never-mind. It'll certainly keep the buzzing at bay.
It's funny how so many people without autism insist on the right to speak for those who have it. Just because you cannot accept your child as s/he is or that it may be the genes that they inherited from you does not give you the right to say that there is something wrong with me. There are aspects of life I would like made easier, I hate it when my head shaking pulls my neck muscles however I like me and my ASD is part of who I am. No one has the right to say that I should be someone else. What makes you think you are as people should be? If you have children with autism speak for parents with autism let people with autism speak for people with autism - we don't hold people with ASDs in contempt.
@Springingtiger - Who are you addressing?
The National Council on Disabilities was created as part of the Rehabilitation Act of 1973, which was enacted under the US Labor Code. The law creating the NCD requires that the members include disabled people, parents/caregivers of disabled people, people representing the interests of business concerns and labor organizations, and others. However, the majority of the members are required to be individuals with disabilities. 29 U.S.C. section 780(a)(1)(C).
The primary purpose of the NCD is to address issues of vocational rehabilitation. The NCD is an implementation, in the area of labor and employment, of the larger goal of inclusion and integration of disabled people into society.
Regardless of whether anyone supports Ari Ne'eman specifically, I don't think that whether a nominee is "high functioning" or wants a cure for his or her disability is relevant to the nominee's qualifications to serve on the Council. What makes sense is to have members who are individuals with disabilities with an interest in issues involving societal inclusion of disabled people, especially in the area of work.
@AnneB - Thank you! Wonderfully stated. All that hulabaloo over what Ari thinks about cure/no cure is irrelevant to what the Council's purpose is!
@counterageofautism - I was having a rant at all those who want to cure autism instead of having society accommodate it. I don't need a cure I do need some support to manage my life - some need a lot more but with support most of us can lead enjoyable and to some extent productive lives.
@Springingtiger - ah, okay, then not at me.
Absolutely. I hope you'll come read us at www.respectforinfinitediversity.blogspot.com (and countering of course).
Acceptance
Appreciation
Accomodation
:)
As for me, I wrote a similar commentary earlier in March about this dogmatism and divisiveness riddling the 'autism community' over the issue of a cure for autism, although this one did not specifically address Ari Ne'eman's nomination to the NCD:
http://fugitiveseekingtruth.blogspot.com/2010/03/neurodiversity-or-cure-for-autism.html"Neurodiversity or a Cure for Autism: Divisiveness and Inaction in the Autism Community"
Springingtiger and KWombles, whatever your real names are, neither of you speak for my son who has autistic disorder. Ari Ne'eman does not speak for him either.
In Canada, and I am sure in US jurisdictions, parents are usually the legal representatives for their children unless they lose the right and responsibility to act by virtue of neglect, misconduct or incompetency. That means that I have a legal right to speak on behalf of my son. No stranger has that right.
Apart from the law society generally recognizes the role of parents in speaking on behalf of the children they love, care for and raise to adulthood. Strangers be their names Ne'eman, Springtiger or Wombles are not recognized by law, society or common sense to speak on behalf of other people's children. A severely autistic child like my son exercises his rights through me and his mother as his parents.
Here is a fact for Ms Wombles to digest. Autism disorders are disorders. People who say they have autism or Aspergers have medical diagnoses of pervasive developmental disorders pursuant or they are misrepresenting themselves.
The PDD's are characterized as disorders because of the various deficits "qualitative impairments" listed in the DSM. In some cases those impairments deprive a person of the ability to communicate,understand the world, become gainfully employed or live independently. In some cases of severe impairment they injure themselves seriously or even starve themselves to death.
Ms Wombles does not want to change her child. She wants her child to retain the deficits that result in a Pervasive Developmental Disorder. I have no right to oppose her choice as strange as I may find it to be. But more than that she wants to impose her choice on other parents seeking to find treatments and cures for their own children. Her position, if I can borrow an expression from Mr. Ne'eman is "morally reprehensible". And it is indefensible. All the kudos and backslaps she gets from the ND world will not alter those facts.
Springingtiger you can rant away. You have no right to impose your views on parents seeking to help their children either. Nor do you have the right to oppose Jake Crosby, Jonathan Mitchell and other autistic adults who would welcome a cure for themselves. Maybe you would in a fictional world, a martial arts movie (I enjoyed Crouching Tiger, Hidden Dragon) but not in a free and democratic world you don't.
@AutismRealityNB - Harold, you've been to my blog, so unless you're completely incapable of reading, and you're not-- you give it away when you call me Ms. Wombles--, you're aware it's my real name. Hell, you even know I teach psychology.
And you know full well that you're spewing garbage when you write this: "Ms Wombles does not want to change her child. She wants her child to retain the deficits that result in a Pervasive Developmental Disorder. I have no right to oppose her choice as strange as I may find it to be. But more than that she wants to impose her choice on other parents seeking to find treatments and cures for their own children. Her position, if I can borrow an expression from Mr. Ne'eman is "morally reprehensible". And it is indefensible. All the kudos and backslaps she gets from the ND world will not alter those facts."
First, do you remember the content of the post and the definition of dogmatic? This quote clinches your position as a dogmatic individual. No, I don't seek to impose my choices on others; I seek to provide scientifically valid information for parents dealing with autism so they won't go down the woohole. I seek to promote acceptance, appreciation, and accommodation for all individuals, which only in bizarroland could you possibly conceive of it as doing nothing.
Your confirmational biases are getting in the way again and ensuring that no constructive dialogue is possible with you. Anyone who's read my posts (and you have, so shame on you) would not take away this message that you have. I'm against parents using their children as guinea pigs, not against safe, effective therapies and treatments to help mitigate the difficulties and challenges our children face. So again, shame on you.
Perhaps if you choose to let go some of that mad you wear (need I go there again?), you might take the time to read me without deciding you already know what I stand for. After all, I do you the courtesy of not distorting what you stand for.
Cafemom ran this story on my family; perhaps if you're not too pigheaded, you'd care to read it and then come back here and defend your above quote? Or read this post?
You continue to deeply disappoint me. I have spent the last twenty years moving heaven and earth to help my son, and then my daughters, and your words are incredibly offensive. If you can't argue what I actually stand for, Harold, then do me the courtesy of not arguing against me at all. I'm perfectly content to pretend you don't exist if you'll return me the favor.
Harold said:
"my son exercises his rights through me and his mother as his parents."
What a load of crap that is! You presume to speak for him, and assume that he would agree with you. He might, as he's been exposed only to your nonsensical opinions all of his life, like that Sad Sack Jonboy and his mother.
I will bet that Conor only has 4 more years with you, after which you will ship him off to some institution, where they'll be "better equipped to care for him". That's what you'll tell yourself, after becoming afraid of him. I predict the same will happen to Best's son, Sam.
I took care of someone you would certainly classify as "low-functioning" for nearly 10 years. I know the opposite extremes of the spectrum, while you dog-fucking-matically define "autism" as what you see in your son. You're an arse, simple and true.
Kim, it would seem that no matter what you write-a certain someone is going to twist it. If you were to write "The sky is blue" he would call you a colorist and say "at night it is not..how dare you say it is."He can not see beyond his own anger..he can not see beyond disability..He does not acknowledge the person..it is his view his experience and his perception..it has nothing to do with autism.
Your children, how you describe them, how they define themselves (from what I glean from your writing) are wonderful individuals..people..human beings....They are not disabilities..they have disabilities..there is a big difference.