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>Miscommunication: And the Center Does not Hold

March 18, 2010

>3/29: this was put up at autisable, but retitled.

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.

  1. March 18, 2010 3:19 pm

    >You say good words.

  2. March 18, 2010 8:58 pm

    >:-) I try. Not that it prevents miscommunications.

  3. March 22, 2010 7:33 pm

    >"*I deleted my prior comment, as I made an error on ASAN's acceptance of FC."If I had a list connected to my organization, that allowed autistics only on it, and I allowed an autistic FC user (with a non-autistic facilitator) on and, as the head of said organization, addressed that FC user when replying to their posts, I would think that was a fairly clear signal of my acceptance of FC. Wouldn't you?And, what exactly do you mean by "FC" (and I know you mean facilitated communication, just interested in how you define that). And if an FC user/supported typer starts typing independently, is everything they typed before that "real" or not? And how would you define "independent typing"?The subject, at least from where I sit, is far more complicated than some might think (I think)

  4. March 22, 2010 7:53 pm

    >Jypsy,Yes, I probably would, except I'm not privy to that list or its members. Nothing about FC appears on ASAN's main site, though. From the journal article Ari did with Broderick, I had concluded that he personally did feel FC was valid (and conflated that with ASAN), because of these two passages in particular: "This concept is asserted by the self-advocate, augmentative and alternative communication (AAC) technology, and facilitated communication (FC) communities aswell, with the slogan, ‘Not being able to speak is not the same as not having anythingto say’ (Saner, 2007)." (p. 461) "There remains a long way to go to achieve the goal of full accessibility in reference to the autism spectrum. By promoting meaningful access to Assistive and Augmentative Communication (AAC) technologies, whether independently or via physically supported or facilitated communication (FC) (Biklen, 1990; Crossley, 1994), we can work towards a future where every autistic person has the ability to communicate effectively."(p. 473)I'll try to explain briefly — I intend an article later this week summarizing the research that has shown facilitated communication (as a whole) to be invalid.I think that augmented communication is an important tool.As to facilitated communication (someone holding and guiding the individual's finger/hand)when the individual hasn't been taught to read or to type, and who is unable to attend to the keyboard, and yet manages to type perfectly spelled and punctuated sentences would be highly unlikely.Do I think that one can support a nonverbal child and carefully teach that child how to use a keyboard independently? Yes. Do I think that all children should be assisted to learn keyboarding? Yes.Independent evaluations of the individual and the facilitator could verify whether the communication is coming from the individual or subconsciously through the facilitator.It's usually more complicated at the personal level than on the broad statistical level. 🙂

  5. March 23, 2010 12:34 am

    >I look forward to your article, your brief explanation leaves a lot of holes – you define it with 7 points there so if 3 of those points apply is it ok? or 4? or 2 or 1? You'll never find an FC supporter who would define FC as "guiding the individual's finger/hand". The notion that children/people need to be taught to read and/or type (especially type) – that they cannot teach themselves these skills – is a weak point (IMHO). Anyway…. I'll save further discussion until you post that article. Clay and Mr. Golden both discussed Mr. Golden's FC using son Ben being on ASAN's list on your blog. Ari's "willingness to accept the use of FC" was also referenced there. One list member objected, on the list, to Ben Golden's presence there but Ben remains on it. The ASAN list ("the general discussion listserv of the Autistic Self Advocacy Network (ASAN)"), is by definition, "open to all communicating autistics." It would seem to me that if there was any question that ASAN didn't support FC (and view Ben as a "communicating autistic") it would have been raised at the time that person objected. That didn't happen. In fact, quite the opposite.

  6. March 23, 2010 1:21 am

    >jypsy,Yes, that was an overly simplistic definition; I apologize.I'm aware that it is more involved than that, that there are offshoots of FC, that research in ongoing in the field, and that a fair number of people believe fervently in it.I will try to get the piece finished and up by Wednesday, and I will endeavor to be precise in definitions so that there's less opportunity for misunderstanding.I'll bow to your greater knowledge of ASAN's acceptance of FC; I'm waiting to hear back from Ari on this matter.I suppose we could say that whether Ari believes and supports in facilitated communication, my support for him is not predicated on that.It's a messy business, where language and definitions may not meet, where personal experiences trump scientific studies or where arguments concerning which takes precedence.I look forward to discussing more with you.

  7. March 23, 2010 1:54 am

    >I'm not sure if it was too simple or too complicated. As I said, it had 7 points:"As to facilitated communication ((1)someone holding and (2)guiding the individual's finger/hand)when the individual (3)hasn't been taught to read (4)or to type, and who is (5)unable to attend to the keyboard, and yet manages to type (6)perfectly spelled and (7) punctuated sentences would be highly unlikely."Or was your definition just "someone holding and guiding the individual's finger/hand" ?Sorry…. I seem to be on a run (not just on your blog but everywhere) of asking questions and not really having them answered or not having them answered at all. It seems the definition of FC is about as consistent as the definition of Neurodiversity — depends on who you ask. Because my definition differs so much from that of many FC proponents, I rarely use the term to describe our experience. I will only ever vouch (and have only ever vouched) for the validity of Alex's supported typing. The opportunity for manipulation – both intentional and unintentional, is too great. That said, I am naively trusting of everyone and will take everyone at face value unless and until they give me reason not to believe in their honesty and genuineness.

  8. March 23, 2010 2:44 am

    >jypsy,Mondays are my long work and class days, so I've quickly responded, and as such, my responses have been, I think, too off the cuff.I think that I would say, if you'll allow me to be somewhat off the cuff again at the end of the long day, that I regard FC to be more than just the someone holding the person's hand or arm and helping, but perhaps not all of the seven things, at least not as an operationalized definition.Tomorrow is also a longer day for me, and I really want to be able to discuss this in more detail,so I will try to get to the post, but, in all honesty, it will most likely be Wednesday before it is finished. There are several journal articles to synthesize and organize, and I think it only fair to also look at pro-FC information, like, as well.I promise I'm not avoiding your questions.But, yes, I think you are absolutely right that people are using the same words and meaning different things. There's a whole lot of miscommunication going on out there, and I think, some unnecessary divisions because of the miscommunications.I think there are areas where we should be able to agree to disagree, but if we aren't defining the same things, we can't accurately assess these things.Assisted communication is different, I think, than what the research literature is calling facilitated communication; think the coma man: I hope you have a good evening, jypsy.

  9. March 24, 2010 2:19 am

    >jypsy,just a note to say that the post on fc will be delayed; my mom went into the hospital this morning, so it will have to wait until she's home and well.

  10. March 24, 2010 10:19 am

    >Best wishes for a speedy recovery to your mom.

  11. March 30, 2010 4:13 pm

    >So, this is on over at Autisable, and Harold Doherty commented over there:"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. AutismRealityNB 3/29/2010 9:18 PM "Here's my from-the-hip-reply: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:

  12. March 30, 2010 4:14 pm

    >my response to Doherty over at Autisable, continued:"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. 🙂

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