War and Peace?
We hear about “combatting autism” (and there’s legislation proposing to do just that). We hear about “making peace with autism.”
We hear (generally from parents) about “curing” and “defeating” autism. We hear (generally from autistic adults) “Don’t Mourn From Us“—and don’t exterminate us.
We hear about how vaccine and mercury poisoning have caused an “epidemic of autism under the auspices of the CDC and doctors who should no better. We hear about the genetic basis for autism.
We hear “I hate ABA” and “ABA has made the difference for my child.”
Each side seems to hear itself pretty well—and not bother to listen to the other.
We need to start listening because, in Autismland, we’re all in this together.
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POSTED IN: Legislation, Science, Treatment
20 opinions for War and Peace?
squaregirl
Apr 11, 2006 at 1:26 pm
Wonderful post Kristina. Thank you for being an example of how to listen.
Kristina Chew, PhD
Apr 11, 2006 at 1:50 pm
Keep letting me know how to keep having an open ear, and mind!
squaregirl
Apr 11, 2006 at 3:05 pm
Well, I just shared how I think you are teaching us all how to do the same in my latest post.
Ballastexistenz
Apr 11, 2006 at 5:52 pm
There’s a difference between not listening, and not believing.
Kristina Chew, PhD
Apr 11, 2006 at 5:57 pm
I believe we are all in it together, and may our disputes and discussion continue.
Estee
Apr 11, 2006 at 6:08 pm
I think many of us our listening, have listened to the “other sides.” It is about making decisions based on what is true, not untrue, and most importantly, what honours the autistic child and supporting people.
Unfortunately, there is a lot of untruth in the autism world.
zilari
Apr 11, 2006 at 6:11 pm
I’m trying to listen (or read, as the case may be) as best I can.
I do see a lot of needless “in-fighting” in autism circles. It is very difficult, though, to determine when one should speak out (for or against something) that one might not have enough information about to do so properly.
Kristina Chew, PhD
Apr 11, 2006 at 6:22 pm
And there is much untruth in the world, and we have each to discern our way through it. Or that is what we try to do around here, with what information we have.
I still think the in-fighting is not an unhealthy sign.
Wade Rankin
Apr 11, 2006 at 7:20 pm
Listening to those with whom we disagree is the true test of any opinion we hold.
Julie
Apr 11, 2006 at 7:27 pm
Thank the gods someone is finally saying this. I’m so tired of the “autism is a disease” mindset, but not as much as I’m tired of the “we are the voice of autism and we hate anyone who tries to help any autistic people adapt through any form of therapy.” (Hi, I’m on the spectrum too, and no, you don’t speak for all of us.) It amazes me how much people are willing to overanalyze and overthink and expound over and over, breaking all sorts of information on this topic into little bits, and yet no one until now seems to have remembered that NO problem is solved without adequate communication between all parties involved. Thank you.
Kristina Chew, PhD
Apr 11, 2006 at 7:32 pm
And I don’t want to–can’t–speak for anyone but myself, truly!
But I want and need to hear all sides.
zilari
Apr 11, 2006 at 8:21 pm
Wade: Excellent point. If any viewpoint cannot withstand an encounter with one that disagrees, then that viewpoint cannot possibly be very viable. Insularity of thought leads to stagnation and an impaired ability to defend one’s own views.
mike stanton
Apr 12, 2006 at 2:15 am
As a parent I am not surprised when I encounter autistic people with rigidly held views about autism. They may be over-generalizing from their own personal experience or perhaps reacting to a life time of being told, “You are damaged. We can fix you.” in order to defend their self-esteem.
I am more surprised by NTs who are rigid in their views. Aren’t we supposed to be the flexible ones? I think that the more emotional investment you put into an idea the less likely you are to listen to evidence based arguments that disagree with you.
Kristina Chew, PhD
Apr 12, 2006 at 4:11 am
Mike, I think we all have some autism in us—I also think, as a parent, it’s easy to be blinded by emotions and love just when you think you are seeing things so clearly. I know this has happened to me in trying to help Charlie. It’s why getting us all to throw around opinions together is crucial.
Ballastexistenz
Apr 12, 2006 at 5:07 am
I just read something that said autistic people have been shown to be more cognitively flexible than non-autistic people overall. Probably because we have to be. (Similarly, people with Tourette’s actually have more control of our bodies in general than people without it — because we have to be.)
I think it’s actually more patronizing to be “understood” in our viewpoints in terms of a supposed rigidity, than to be flat-out disbelieved. As one quote has it, “I am more or less happy when being praised, not very comfortable when being abused, but I have moments of uneasiness when being explained.” -Arthur James Balfour, British Prime Minister
Many of us have come to our viewpoints through years of careful study and thought that actually do pay attention to a lot of the nuances in the world. But when we articulate our viewpoints, if we actually seem to be against anything, particularly anything popular, then that gets stripped of nuance by many of the people reading what we have to say.
An example of opinions stripped of their nuance is further up in the posts: “We hate anyone who tries to help any autistic people adapt through any form of therapy.” I’ve rarely met or read anyone who matches that description, and I have met and read things by hundreds of autistic people. Even if I restrict what I see to “prominent autistic authors,” or “prominent Internet autistics,” or “people who post a lot on message boards and mailing lists,” I don’t see it there either.
I do see that as a distorted, utterly de-nuanced version of a wide variety of common opinions, though, one that forces many of us to have to explicitly say what we shouldn’t have to explicitly say: “We’re not against growth or helping people, we don’t hate parents, we’re not against growth or helping people, we don’t hate parents,” like some kind of mantra, and then those who don’t say it (and even many of those who do) get lumped into people who are against those things.
I do see people mounting legitimate criticisms of nearly all common and uncommon “treatments,” as well as some of the reasoning behind the notion of “treatment.” Some of the criticisms hold up to scrutiny and some don’t, but none are as simple as “we hate people who try to help autistic people adapt” etc. (Few involve any hatred at all, truth be told.)
And I also see us viewed as “not listening,” when, often after years of listening to all sides of various issues, we come to conclusions that are different than the majority, and end up not believing other “sides” to the issue.
I had been discussing this with a friend in recent years: “Why is it that no matter how many nuances or details I add, there are many people that always distill my viewpoint down to some thing that I was very explicit about not believing?” She said that most people don’t actually read what you write, they just read a few sentences here and there and then form conclusions.
I don’t really believe, though, that we ever have all been in this together. The people with the most common views, though, can maintain that illusion a lot more easily when people with less common views are viewed as “in-fighting” rather than simply fighting to be heard.
mike stanton
Apr 12, 2006 at 6:08 am
To Ballastexitenz
Sorry if I came across as patronizing. My comments were too simplistic.
autismvox
Apr 12, 2006 at 6:48 am
Ballastexistenz,
Whether we like it or not, or wish to or not, we’re all in it together because we all have to live with each other.
“Nuance” is a hard thing to capture in writing–much harder to articulate than outright “I agree or disagree.”
Ballastexistenz
Apr 12, 2006 at 10:16 am
If you’re talking about the broad sense of everyone living in the world together, that makes sense.
But I have a really hard time connecting that basic physical fact to the concepts you connect to it. The parts that start defining “we” in a particular way (”Autismland”, wherever that is), and the parts that start saying “…and therefore, we should…”.
It seems to me like saying, “All humans contain carbon, and therefore we should [insert social thing here].” It seems like enforcing some kind of social commandment with the statement of an unrelated fact as if that unrelated fact stands for something else that may or may not really exist. I guess I could say “The sky is blue, and therefore we should…” but actually the sky outside my window is grey verging on white right now, and if you got really technical about it the sky even when clear isn’t blue in the first place.
That’s what “We’re all in this together” seems like in this context. Whether I happen to like it or not, I can’t force myself to believe even metaphorically that there is such a place as Autismland, I don’t think that we all enter a particular place of any kind of togetherness by being autistic or being parents of autistic people or staff working for autistic people or classmates working for autistic people, and I don’t think that our collective connection to autism means much overall.
I may share a common humanity with my assorted relatives who variously love and hate and are indifferent to and everything in between me, with the institution staff who variously treated us well (rarely) or indifferently or brutally (more common) or tried to kill us (rare but scary), with my neighbors (many of whom are afraid of me), and with all the various other people that I have relationships with. I don’t think that I share anything equivalent to “Autismland” with them, or that there is a particular social mandate attached to them and not to other people.
I hope that makes sense. That’s why I say we’re not, never have been, all in this together (except in the broadest sense, which doesn’t, in my mind, mean what everyone seems to be using it in this thread to mean).
Bonnie Ventura
Apr 12, 2006 at 11:09 am
As I see it, we are “all in this together” because we are all going to have to live with the consequences of how our society defines and views the autistic population.
To a large extent, those definitions and views are still in the process of being formed, and that’s why this discussion is so important.
Kristina Chew, PhD
Apr 12, 2006 at 1:00 pm
“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable rights, that among these are life, liberty and the pursuit of happiness.”
For a long time in the US and even still, many felt that that “we” was not a reality for them; that it could not be a reality for them based on who the “we” were who originally composed the Declaration of Independence.
But language is flexible and changes, and so can people, if at a glacial pace.
Ballastexistenz, your commentary on “Autismland” is something to think on.
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