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Wednesday, March 16, 2011

Diversity in the Autism Community: Wandering Behavior

One of the endlessly fascinating and frustrating things in the autism community are the issues that crop up and manage to work to divide the community.

I almost want to sound like a boxing announcer, in this corner here are the autistic individuals who are in favor of this petition and in this corner the parents who are in favor of this petition.

If my experiences this week, both publicly and privately+, are any indication, it's a pretty clear divide that isn't going to be bridged. How can it when one side is certain that it will lead to be autistics being restrained despite evidence that it will not and the other side is convinced this is needed in order to get the technological and behavioral supports to help them prevent their autistic child from wandering from home or darting into traffic.

I took care with my posts at Countering this week to be fair, to be balanced, to demonstrate that the likelihood of hundreds of thousands of autistic individuals being labeled as wanderers was highly unlikely and that restraints were even less likely.

Much like the vaccine debate and the treatment debate, this is one that is clearly based on different perspectives and deep-seated fears on both sides. On the one side, autistic individuals are concerned that their autonomy will be restricted, and the petition, which caters to those fears, just reinforced that fear. On the other side, parents, many of whom have dealt with children who have wandered, who have darted into traffic, the opportunity to get help from the medical establishment, to get a handle on the problem, well, it's compelling. We love our children and we look at those screaming* arguing about abuse, torture, and restraint and wonder where they're coming from. We want to protect our children, keep them safe. Abusing them, torturing them, and restraining them aren't  a part of that equation. We'd fight to our dying breath to prevent that.

Okay, truth be told, most of us would; some parents so desperate they've lost all hope send their children to that hellhole the Judge Rotenberg Center* (Landon Bryce would like credit here because he mentioned a current story about the center on his website in his mischaracterization of my posts and my mood; he believes it is his idea and deserves credit+) and then testify on the center's behalf. I don't understand that. I really don't. But maybe it's a reminder that there really aren't two sides to any of these issues; instead there's just a mess of opinions, beliefs, and emotions endlessly tangling things up.

It's messy. Really messy. And it's not going to change. Maybe we'll learn to listen to others with different beliefs and opinions and find a way to at least agree to disagree or maybe we'll make all new enemies instead as  we find all sorts of new ways to be divided. I don't know.

Here's what I do know: given a choice between hyperbole, exaggeration, and a rhetoric uninformed by the research or an evidence-based approach, I'm going to go for the latter.

If readers missed our coverage last year of the center, those posts can be found here:

http://respectforinfinitediversity.blogspot.com/2010/07/over-thirty-years-later-when-ends-do.html
http://respectforinfinitediversity.blogspot.com/2010/07/ruminations-on-judge-rotenberg-center.html
http://respectforinfinitediversity.blogspot.com/2010/07/judge-rotenberg-center-serial.html

*My apologies; I was referring to commenters at the petition site, not the petition itself, and I could have used a less loaded word.
+ If that's inadequate for Landon, I'm sure he'll write about it.
You can find him here: http://www.thautcast.com/
Do go and visit him!

16 comments:

Life in the House That Asperger Built said...

And the lines aren't even that clear. I'm an Autistic AND a parent of Autistics and I don't support the ASAN petition. ;-)

jillsmo said...

Good stuff, thank you for writing it

Melody said...

On the other hand, I'm also Autistic and the parent to two Autistics, one of which IS a wanderer, and I do support the petition.

Without clear research into the problem, there should be no diagnosis.

Amanda Forest Vivian said...

"We want to protect our children, keep them safe. Abusing them, torturing them, and restraining them aren't a part of that equation."

Whether or not it's consciously "part of the equation" for their parents, people with developmental disabilities often face abuse, restraints, and harmful treatment from staff (and yes, family members sometimes). I think it's reasonable, in light of this, for people who care about DD issues to be concerned that this code could promote overmedicalization and justify abuse. If I had an amazing trust in medical professionals, parents, and staff, I would not be afraid of the wandering code; shockingly, I don't and I am. (No, of course I'm not afraid of it for myself, but I am for other people.)

I really don't understand why you would criticize the ASAN petition for being hyperbolic when the NAA petition is called "Keep our loved ones safe from wandering-related injuries," as if being against injuries is some kind of controversial issue, and as if the code is the only way to reduce the potential dangers of wandering. Writing about things this way is part of the nature of trying to get people to sign a petition. I happen to think that ASAN has been unusually honest and specific in titling their petition and expressing the dangers of the wandering code, but even if you think it is overdramatic I'd be hard-pressed to find a petition that is not overdramatic.

I am scared reading about the wandering code, and scared reading your post. Your "evidence that the code will not lead to people being restrained" is never quoted and is at most your conclusion, as far as I can tell--how would you have "evidence" about the results of a diagnostic code that doesn't exist yet? You basically brush off disabled people's fears as being silly as if disabled kids and adults don't face unethical treatment all the time. I can't think of many things more disrespectful than your characterization of disabled people as "screaming" because we are concerned about abuse. This resembles the tone argument and is irrelevant to the topic at hand; furthermore, criticizing us for being emotional about a topic that relates to abuse and quality of life (important things, I think) is pretty unreasonable.

KWombles said...

All caps on some of the comments at the petition site: screaming.

People being concerned about the ramifications: makes sense, reasonable.

People being certain this will lead to torture and abuse: not reasonable.

Links placed at the relevant points; I'm not suggesting my blogs themselves are the evidence, but that evidence that the government has policy in place regarding wandering in dementia patients indicates that the whole intent is to not use restraints but to use other interventions in place.

Interesting that the real story of abuse and restraints that is currently going on, and has been, for decades, you ignore.

Compared to the rhetoric in the first petition, the second is not as problematic and offers detailed bullet points rather than sweeping generalizations, other than the title, which I will concede is polarized opposite that of ASAN's, which is why I titled my post at my own blog today the Petition Divide, and why I noted here in this post that this was a messy situation that encompassed more than two distinct sides. Did you miss that part?

KWombles said...

The whole point of my original post on Monday was that reason and evidence should dictate actions, not rampant emotionalism and hyperbole.

In fact, one could conclude that I was arguing that hyperbolic petitions that misinform people are irresponsible and that a better practice would be to accurately inform individuals so that they could make up their own minds.

Life in the House That Asperger Built said...

Just to clear it up, I TOTALLY support research into this. Absolutely necessary, my son wandered until about age 8...I get it.

I just think that scaring people into thinking that they're going to start rounding up and restraining Autistics because of more research is unnecessarily inflammatory. That's why I don't support the ASAN petition. That's all I meant.

Amanda Forest Vivian said...

"Interesting that the real story of abuse and restraints that is currently going on, and has been, for decades, you ignore."

Which one are you referring to?

KWombles said...

Judge Rotenberg Center, for which I provided links to three stories we wrote last year on the subject.

And thank you for bringing the "screaming" bit to my attention; I have substituted a more appropriate word and apologized in the post.

Amanda Forest Vivian said...

I don't feel that the JRC is "the" story of abuse and restraints--there are so many. But I certainly am aware of it and care about it, and don't understand why you would say that I am ignoring it.

Landon Bryce said...

Since you are responding directly to my writing, as is obvious from the Judge Rotenberg material, please update this piece to include both my name and a direct link. This in the third time you have written in response to me and referred to me as nameless, faceless person on the spectrum. Please credit me with my name when your respond to my ideas, and please link to and name when you write aideas you read there. Including me in a general list later on is not the same thing.

http://thautcast.com/drupal5/content/restraint

Thank you,
Landon Bryce
thautcast.com

KWombles said...

Landon, since the initial comment came through on facebook on a private wall you weren't named. I explained a private wall is a private wall; I don't violate those confidences, but since you want your name attached, shoot, I'm more than happy to name you. To be fair, I updated the same piece that I have in two places, that's all. And I often respond to pieces without ever naming the person or the post.

But sure, I'm thrilled to death to link right to you in the post.

Landon Bryce said...

Kim:

Thank you very much. Since there will be no more private communication between us in the future, this will not be issue, and note that I only ask you to change the Judge Rotenberg reference, because, although you brought that up in a private conversation, it was in response to what I wrote on my blog. Please be aware that because you have blocked me on Facebook and used the Facebook comment system to respond on my blog, you have left me in the situation of having a comment there that I am unable to respond to in kind. In future, please use the moderated commenting system if you wish to leave a comment on my blog.

Thanks again,
Landon Bryce
thautcast.com

KWombles said...

Landon,

Glad it was such an easy request to comply with. I regret there will be no private correspondence in the future, but suspect that public communication of ideas is much better for the both of us. That way there will be no confusion of private and public discussions!

I regret that you are unable to respond to that comment directly. I saw, however, that you were able to copy and paste it onto your website's facebook site for your fans. If you comment there, I'm sure I'll see it.

Of course, you're free to respond here, as well. :-)

I'll make sure to access your site directly through the directory should I ever choose to check in on your posts in the future. That way, you'll have no problems at all responding to any comments I might leave.

Best,
Kim

Landon Bryce said...

Kim: Thanks again. The latest entry on my blog is my response to your comment, obviously written before you made the update here, which addresses the thing that actually made me angry. I prefer not to link to it, since this conversation comes after it in chronology, and these comments better represent my current feelings. However, I would feel awful if you were unaware of it, especially if you did not know that, although I need to keep it up because it addresses some things that are important to me, I no longer feel the anger at you that is on display there. I will change the title so that it is less confrontational.

KWombles said...

Landon,

Thank you for informing me of the post; you'll understand, since we are both in a good place with each other right now, if I don't visit that post. It's been a long week, with sick girls on top of this, and I'm going to make good use of my evening by closing down the computer for the night.

:-)

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