Let’s Just Assume That No One Should Speak For Anyone Else – ‘Kay?

Alex Plank, the co-creator of Wrong Planet, recently did an interview on the Chicago Tribune’s blog about the concept of neurodiversity and the question of the concept of a cure in conjunction with autistic peoples on the spectrum.

If you check this out, you should make sure that you read the comments, for they are every bit as wide and diverse as the spectrum itself.

Since this article, I’ve seen many comments by other people that Alex’s life is too good, that he’s not aspie enough or autistic enough to even represent the spectrum, since he obviously isn’t feeling any ill effects thereof.

Uh huh.

I’d like to point out a few things about all of that.

  1. First of all, it’s clear that Alex perseverates–a clear aspie trait. How do I know that? Look at the article. How many times does the interviewer try to change the subject and he refuses to go with her? He’s stuck on what he’s trying to say and by god, he’s gonna say it. That’s sooo an aspie trait.
  2. Okay, I think that Alex got stuck too much on the so-called higher functioning end of the spectrum as he tried to explain his point of view. Many aspies have much higher/worse extreme levels of sensory disorders than what he even alluded to. Then again, he was stuck on his idea of what he was trying to say . . . plus, aspies don’t exactly phrase ideas in the best possible ways at all times, because we’re more interested in getting across our honest perception of how we see things as opposed to the most diplomatic way of saying it. I think that’s why this is a little rough around the edges.
  3. That, and generally speaking, aspies tend to do better in the written word than in the spoken.
  4. Also, I think the questions were a bit vague. The interviewer obviously had never tried to interview an aspie before. If she had, she would have been more forceful/blunt (like saying something like, “Okay Alex, let’s change topics NOW”). Subtle rules of interaction. We miss out on those. Geez, and this was a telephone interview? I’m completely blind on the phone. Nowadays I can pick up on some of the emotions going on in-between the lines thanks to the expressions on people’s faces and what they’re doing while talking to me . . . little details that are completely missed on the phone.
  5. She should have asked exactly what she wanted to know, instead of alluding to it. You can’t do that with an aspie. She asked something like, “so you wouldn’t want any of your symptoms treated?” In conjunction with what? Allergies? My need for glasses? Sensory issues? Which ones? Too broad, too broad. Tsk tsk tsk.

I’m very disappointed in what could have been a better interview. It’s obvious that she wasn’t expecting too much, so she didn’t ask for much. And more than that, she didn’t do her homework. What’s wrong with her? Silly NTs. They’re always thinking that everyone thinks like them. Too bad they couldn’t be more EMPATHETIC. *rolls eyes for good measure*

This wasn’t particularly well received among the pro-cure communities.

Hmm, how did I know that one?

Okay, so I’m not “low-functioning,” a term that is becoming more and more a topic of controversial debate as the weeks go on. However, I am on the spectrum and do have a number of current and past issues that I’m still/ever working through. I may seem fairly well put together now, but that’s only after many years of trial and error. And error. And error. And err-. I think you get the point.

Against my better judgment, I decided to respond to one of these posts. It’s here.

And since I strongly doubt the inclusion of my response in the list of comments, I also copied it here, so you can see it.

Cure and treatment are not the same things. To take autistic traits out of humanity would severely limit our creativity and our ability to discover innovative solutions to our dilemmas.

Treatment, on the other hand, is more about modifying the methods with which we survive life. We wear clothes; we wear shoes; we use fire and build houses . . . these are all modifications on life to enable us to live to higher levels of potential.

OT, PT, AT, MT . . . these are all therapies that help make life better for all people, especially in regards to the latter two (Art and music therapy).

We don’t need to be cured, but rather given a chance at using all of the tools available to us in the toolbox.

Many of those self-injurious behaviors relate directly to anxiety levels and sensory problems. I know. I was once self-injurious. You figure out what those sorts of problems are, what’s causing the anxiety, what helps alleviate it . . . then, that’s when the really neat stuff starts to happen.

Give us music. Give us art. Give us understanding and compassion. We can sense dishonesty. We can sense your distrust and underlying dislike for everything that we are. It adds to our unease with life. Show us joy. Love others. Do all of this with others.

Don’t assume to know us, to know what we think . . . both sides are guilty of that, but I think that the neurotypicals started it. And it’s the neurotypicals who constantly accuse us of it, never taking responsibility for themselves in that regards.

No one knows everything. No one is in the same situation. I speak these word out of personal knowledge of my experiences on the spectrum.

And don’t judge us purely by what we are now. Don’t trivialize our pasts and don’t ignore our hard fought for achievements. Don’t laugh when we fall and don’t claim that we are broken in some way, as Foresam has done time and time again.

We are all humans. No one functions at the same level. No one reacts the same way.

Alex says what he says based on the words of nearly 20,000 aspies. I don’t claim to speak for him, but I’m sure that must have a large part in it.

Sure, he seems good now, but did you know him ten years ago? Did you know me ten years ago? Fifteen? Twenty?

You say that we don’t resemble your children. Well that’s true; after all, you are not our parent(s). But we still have the sensory issues; the coordination difficulties; the language/expression problems, comprehension difficulties . . . to a lesser extent though in some cases (and in some cases not).

But look at the colors: navy blue and sky blue are definitely different colors, and yet, they’re still blue. Their core is the same.

It’s strange how they say that aspies think purely in black and white. It seems to me that many neurotypicals are the washed out ends of the extreme–black and white–while aspies and auties, we make up the shades in-between. Don’t discount our differences.

Or our similarities.

If you want to read a really good article on neurodiversity, check out what the man (the myth, the legend lol) Ari Ne’eman had to say while in Florida for World Autism Day.

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~ by lastcrazyhorn on April 11, 2008.

6 Responses to “Let’s Just Assume That No One Should Speak For Anyone Else – ‘Kay?”

  1. It’s hard not to cringe at the irony of Doherty’s remarks. The all-too-familiar patterns alone are enough to bring exasperation. There’s the “internet diagnosis” phenomenon, replete with it’s assumptions about “functioning levels” as representing some objectively measurable quantity that’s both static and monolithic, and the oh-so-tiresome implication that the ability to type out some of your thoughts and post them on the web automatically makes you “high-functioning.” Then there’s the ubiquitous double-standard regarding who claims to represent whom: have you ever seen Alex to claim, or even imply, that HE represents the voice of all autistics? No, neither have I. But of course, Doherty sees no problem with his “speaking for” Alex, i.e., telling others what Alex is supposedly “offended” by. If he would only drop that kind of presumption, there might be some hope for finding common ground — a prerequisite for cooperation.

    Even more ironic is that all of this has been done to death countless times already — the patterns of rhetoric used to dismiss autistic voices have been explicitly cataloged, and even the perennial kerfluffle over “who speaks for whom” has been debated to hell and back within the autistic community itself, to say nothing of the broader disability community.

    I wonder if Harold has any problem with an organization calling itself “Autism Speaks,” — or could it be that his real problem lies not in any claim of representation, but rather, in the fact that the one speaking might dare to say something he doesn’t like?

    I’m more than a little surprised that he approved your comment. Who knows, maybe someday he’ll find reason to begin taking us seriously — like when he catches his own son failing to live DOWN to his expectations.

    But for now, he seems absolutely convinced that his son will never be able to do any of the things that adult autistics do (but based on what? the same crystal ball he uses to diagnose people over the web?). So much so that it could well turn out to be a self-fulfilling prophecy, and that worries the hell out of me.

    😦

    [EDIT: I see in his reply, he once again chastises you for presuming to speak for his son, while giving himself a free pass as spokesman — because HIS idea of what “autism” means is the only one that could possibly be valid. And because he has identified you (and anyone who can type) as “high-functioning,” he grants himself license to accuse you of what he himself is doing, namely, trivializing the struggles of others. Conveeenient, huh?]

  2. Let’s put it this way; I’m glad I read your comment first. I’m also a little more than surprised that he authorized my comment as well. I think, as a result of the experiences I’ve had in public schools, my abilities to write more diplomatically than some have been heightened somewhat.

    That gets the pass in, and the luck of being one of the ones that he gets to chastise.

    I actually hung out on the forums of Autism Speaks for a while in an effort to get a better understanding of what they were really all about. That’s a subject for another post, but one thing that allowed me to interact with them in fairly civil conversations was my ability to represent myself courteously; an ability that is becoming more and more highly valued in today’s age of accusations and false representations. I believe in treating everyone with respect. That’s partially an aspie thing–treating people equally, from the bum on the street to the president. I just happen to try to do it respectfully.

    Unfortunately, it’s not always interpreted that way.

  3. You were certainly more diplomatic than I have often been in responding to Doherty. I’ve long recognized the pointless destructiveness of getting into flamewars with people, no matter how unreasonable or unethical their rhetoric may be. As the saying goes, “he who fights fire with fire burns down his house twice as fast.” But I can still be reactionary. I’ve had to work hard on that, but still have a long way to go. OTOH, I’ve gotten pretty good at just walking away from people when they’re being irrational, abusive, self-righteous, etc. Or from mere trolls.

    In this case, I posted a comment to his blog entry consisting only of a short passage from “Critic of the Dawn,” by Cal Montgomery, along with a link to the full text. I don’t care so much that he blocked the comment, nor am I the least bit surprised. I just hope he’ll read the article.

  4. Considering all the hack jobs that that blog “Julie’s Health Club” in the Chicago Tribune has done on autism in the past, it’s surprising that it interviewed Alex at all. I’ve complained to the editors of the Trib, but have never gotten a response. For the sake of my blood pressure, I stay away from there now.

    It’s less surprising that she pretty much dismisses him and the issues he raises. I thought Alex handled himself just fine.

    Joe

  5. I do get that feeling from the page.

    I think he did pretty good overall; I just think a couple of his comments could have been more inclusive.

    Then again, for all we know, maybe they were and she cut them out. *rolls eyes*

  6. Hello. I have been reading your blog for a few days and I love it! This is an excellent post, and I really identified with the bullying post, although I was never bullied to that scale. Thanks for the comment on my blog BTW.

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