Friday, April 4, 2008

The Neurodiversity Wars

At some point after In My Language started making the rounds in the blogosphere, I put up a Google Alert for "Amanda Baggs". Usually after a TV or magazine appearance, there will be a flood of blogs and board messages that say something to the effect, "I just saw the most amazing video."

However, there was one exception - an individual who INSISTED that Amanda wasn't autistic at all and was pretty much faking.

At first I didn't pay any attention to this individual as he was so crass and rude that he frequently gets thrown off of web sites.

However, after a while it eventually started to hit me that, yes, having had a bit of experience myself with hyperfunctioning neurotypicals, the issues he was bringing up WERE in need of some additional explanation.

Sanjay Gupta mentioned this in Finding Amanda and apparently the issue was addressed as far back as February, 2007 by the Managing Editor of CNN Medical News, Tim Langmaid who said, "We spoke with her health care providers and reported what they told us. Also, Amanda shared her medical records with us from various providers diagnosing her as autistic. We are not in the business of diagnosing people's medical conditions. But, as in all of our stories, we conducted our own independent investigation, spoke with expert sources and reached informed conclusions."

Amanda herself addressed the issue in a comment to a recent post on her blog. So yes, I'm thinking at this point is that the reasonable consensus is, yes, these questions are legitimate to ask, but, at least per current usage of the word, Amanda Baggs is a person with autism.

However, I'm discovering the issue goes quite beyond Amanda and her #1 Fan.

As I suspected, other, far less rude individuals are posing similar questions.

A gentleman from New Brunswick, Canada named Harold L. Doherty stumbled across an article about a young man named Alexander Plank, founder of Wrongplanet.net, who is a card-carrying Asperger's case and apparently doesn't want to be "cured".

Mr. Doherty responded in his blog by saying "Alex Plank doesn't speak for my son."

Now, from the Alex Plank article it's not real clear exactly WHY he has been diagnosed with Asperger's, but my guess he may be suffering from "bright kid syndrome". Yes, very often somewhere around that 130 - 140 IQ line, as more and more brain is taken up by extraordinary skills like memory and computers, "ordinary" capabilities like socialization start dropping off.

From what I've read, I think Harold Doherty has a very legitmate right to ask the question whether or not the merely geeky and the severely disabled like his son should be considered to have manifestations of the same disorder.

However, in his piece, Mr. Doherty actually goes on to produce an example of how, if you insist on thinking of Asperger's as a completely distinct disorder, hopelessly intertwined these two conditions are.

"Occasionally he bites himself and he has put his hands through windows and smashed holes in walls."

Uh, dude ... The Old Man passed the bar on the first try. *I* have an internationally recognized blog and, unlike either Amanda OR her #1 Fan, can pick up the telephone and order pizza and/or lobby state and federal legislators - sometimes in the same phone call. We've both pretty successfully mastered this using the restroom bit that seems to cause everyone so much stress. HOWEVER, we have BOTH made fast work of windows and walls in moments of frustration and have found all sorts of other troublesome ways to self-injure. It comes with the M.O.

I'm not entirely sure the Neurodiversity crowd really intends to say that NO treatment should be worked on. As a matter of fact, it's arguable that the staff accoutrements of say, Amanda Baggs and Sue Rubin ARE a form of treatment.

I think what they're saying though is that you HAVE to tone down some of the acrimony here, people.

I know you come by it honestly. Some of you have several very unfortunately neurotypical tendencies and I KNOW your severely autistic kids push your buttons in the same way as neurotypicals who are deliberately trying to make you upset. Believe me - I've noticed this effect in Mrs. Axinar ... :)

But, yes, the chelation business sounds a little scary and the "clicker" training business sounds downright dehumanizing. It sounds like something you would do with a dog or a horse [[ahem]].

Perhaps some sort of truce would be in order on the issue at hand. Despite our often excellent writing skills, even we mega-high functioning types have judgement impairments at times. Yes, we can negotiate traffic and drive all the way to Oprah, but we don't often see an issue completely clearly, and, yes, within the limits of the law, we should ultimately respect the wishes of parents who want to try to aggressively correct their own children's autistic behavior.

But also the parents of autistic children need to respect the rights of autistic and Aspergian adults to choose their own course of care and recognize that sometimes things just don't come out the way we intended ...

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4 Comments:

At April 5, 2008 at 6:49 AM, Blogger Autism Reality NB said...

"the parents of autistic children need to respect the rights of autistic and Aspergian adults to choose their own course of care"

Thanks for your comment on this subject.

Can you point to one instance where the parents of an autistic child tried to prevent an autistic or "Aspergian" adult from choosing their own course of care?

 
At April 5, 2008 at 6:59 AM, Blogger Autism Reality NB said...

You said:

"However, in his piece, Mr. Doherty actually goes on to produce an example of how, if you insist on thinking of Asperger's as a completely distinct disorder, hopelessly intertwined these two conditions are.

"Occasionally he bites himself and he has put his hands through windows and smashed holes in walls."

Uh, dude ... The Old Man passed the bar on the first try. *I* have an internationally recognized blog and, unlike either Amanda OR her #1 Fan, can pick up the telephone and order pizza and/or lobby state and federal legislators - sometimes in the same phone call. We've both pretty successfully mastered this using the restroom bit that seems to cause everyone so much stress. HOWEVER, we have BOTH made fast work of windows and walls in moments of frustration and have found all sorts of other troublesome ways to self-injure. It comes with the M.O."

I am glad that you have an internationally recognized blog but you didn't provide the full paragraph in which I described my son's situation. You left out the parts that point to signficant differences between Mr. Plank and my son OR between YOU and my son. Neither you nor Mr. Plank have difficulties with language or cognitive challenges. You can function in the world. My son can no be left unattended to walk down the neighborhood street alone. These are serious deficits and differences. For Mr Plank or anyone else to EQUATE his condition with "autistics" in general does not make any real sense. Obviously there are similarities but the differences are very substantial as I said in full:

"Unlike Mr. Plank my son does have problems with language and has cognitive challenges. He can not function in the world without 24/7 supervision. Occasionally he bites himself and he has put his hands through windows and smashed holes in walls. He does not understand all the dangers of everyday life like automobile traffic and he will not be able, like the fortune blessed Mr. Plank, to live an independent life with girlfriends, college and computers."

 
At April 5, 2008 at 11:50 AM, Blogger Axinar said...

"Can you point to one instance where the parents of an autistic child tried to prevent an autistic or 'Aspergian' adult from choosing their own course of care?"

I do not believe your blog has gone in this direction, sir, but there are others in similar situations who have expressed the desire specifically to cause Amanda Baggs great harm in order to "force" her to "act normal".

I was merely attempting to express the thought that it might be best if both sides of this issue give the other a wide berth.

 
At April 5, 2008 at 12:00 PM, Blogger Axinar said...

"You can function in the world. My son can no be left unattended to walk down the neighborhood street alone. These are serious deficits and differences. For Mr Plank or anyone else to EQUATE his condition with 'autistics' in general does not make any real sense. Obviously there are similarities but the differences are very substantial ..."

I would never use the word "equate".

The question is whether or not these conditions are related, or whether or not they are different manifestations of the same condition.

Yes, I can successfully negotiate the men's room. I can muddle through making meals or at least ordering from Mickey D's.

However, I'm virtually crippled in most significant professional settings because, sometimes virtually at random, I'm overcome with a case of emotional incontinence that most reasonable people would consider "debilitating".

There are other things too, of course, and in some ways it's tremendously frustrating because you can't get a soul to take you seriously because you do so "well" in other areas.

But, no, I'd never claim for a moment to know what it's like for your son. I'd never claim for a moment to know what it's like for my dad.

But, my dad's not on-line. He's not political. He has no axe to grind. He doesn't speak of it openly but his choices and actions CLEARLY indicate that he has no desire to be different than he is now, so it's difficult to speculate precisely how severely autistic individuals think of their own situations.

 

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