Friday, February 26, 2010

Neurodiversity : A Manifesto by Nick Dubin

As covered on Autism's Gadfly, there was an article published in the January-February issue of Autism Asperger's Digest that is called "Neurodiversity : A Balanced Opinion".

If you have ever had any questions about what the moderate members of the neurodiversity movement believe and stand for, you will want to read this article. The text is available from GRAP's web site.

If you ever doubted that neurodiversity can be harmful, you should read this article.

I am not going to go into the issues in depth, but I wanted to to highlight certain parts of the article.

The author is Nick Dubin, an adult in his early thirties who was diagnosed with Aspergers six years ago, when he was 27. I do not doubt that Mr Dubin has this diagnosis, but I think it is important to note who he is and what he has accomplished. If you look at his bio on the GRASP site, you can see that he is very well educated -
Dr. Dubin has a Bachelor's degree in communications from Oakland University, a Masters degree in special education from the University of Detroit Mercy and a Specialist degree from the Michigan School of Professional Psychology, where he recently earned his Doctorate in Psychology
and quite accomplished, especially for one so young -
Dr. Dubin authored three books and produced three DVD's, all relating to the autism spectrum. Dubin has been featured in Hour Detroit Magazine, CBS Detroit, Signature Magazine, Radio Disney, The Detroit News, National Public Radio and on Fox 2 (Detroit). Dubin also contributes to the Autism-Asperger Digest as a collumnist and has presented at over 80 conferences and seminars, including as the keynote speaker for the Autism Society of Michigan's fall conference and as a two time presenter at the Autism Society of America's national conference. He also serves on the board of directors of the Asperger Society of Michigan.
I don't know about you, but I, like most parents whose children have autism, am worried about my children being able to express themselves or (hopefully) live independently.  I hope that one day they will be able to attend college and have successful lives.

I don't think Mr Dubin's experiences are normal for a person with autism - or even for most "typical' adults.  I believe this sets the tone for the rest of the article, a tone which I believe can be summed up as -

Night, meet day.  Day, pretend night doesn't exist.

So onto the text.  What did Mr Dubin have to say about his experience with diagnosed with autism?
When I was first diagnosed with Asperger’s at the age of 27, I was despondent and terrified. I thought being on the autism spectrum only involved deficiencies and negative traits, and that I would be relegated – without my consent – to a future of things I could never hope to accomplish. After interfacing with several autistic advocacy organizations (I now serve on the board of directors of one such group) my perceptions towards Asperger’s shifted and I began to recognize and own my own strengths. This new perspective gave me the courage to write books and articles about being an adult on the spectrum, produce DVDs, and become a national speaker.
Yes, because when my children were diagnosed, they quickly interfaced with advocacy organizations and started writing books on the subject.  Oh wait, they couldn't talk.  But I am sure that they will feel inspired to write books and produce DVDs, as soon as we can communicate with them well enough to explain the concepts.

What does Mr Dubin have to say about curing autism?
That I have been able to accept having Asperger’s, and even view it in a positive light, makes me personally reject the need for a cure. First, I believe “curing autism” is an illusory goal, an effort to eradicate something that is not yet even remotely understood or adequately defined. Second, to advocate cure would have increased my shame in having Asperger’s to the point of paralysis.
So instead of looking to "cure" his condition, he decides to write books about it. How very appropriate of him. Wait, how many other conditions do people have where they feel shame at advocating for a cure?

What does he have to say about to people who don't like this rejection of a cure?
In theory, there doesn’t seem to be a chink in the armor of neurodiversity’s philosophy. Who would argue with the notion that society should take responsibility for how it treats some of its most vulnerable but creative citizens? Or that people with autism have inherent gifts and should be respected by others?
Yupe, he is certainly right, no chinks in the armor. It is a good thing that he is encouraging society to take care of people who write books, produce DVDs and appear on television to promote their take on autism.  You know, the most vulnerable but creative citizens.  I thought for a minute there he might be talking about helping children with autism, but the neurodiversity movement discourages that.

What about the idea that autism is an disability and not just caused by societal norms?
Neurodiverse supporters counter by saying it is society that needs to learn to recognize and accommodate these differences, without having to label them as being defective or deficient. While I do not think anyone will argue with the fact that autism and Asperger’s produces some disabling consequences for the person who has it, the hotly debated question remains: what responsibility should society shoulder for this being the case?
He must be right - it is society at large that is to blame for my children having autism, right? So if "society" as a whole would just accept the fact that many children with autism have problems with communication, social skills, and restricted interests, then autism is no longer a problem, right?

Maybe it isn't quite so easy.

And, my favorite quote from the whole article - who does this gentleman idolize in the neurodiversity movement?
[Michael John Carley] serves as a true role model for people of all ages on the spectrum. His character and actions exude tolerance and respect and his efforts to serve as a bridge of understanding to those who are not on the spectrum are admirable.
Oh, you mean the gentleman who was quoted on NPR as saying -
But the change is going to be hard for some people with Asperger’s, says Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership in New York and author of Asperger’s From the Inside Out. “I personally am probably going to have a very hard time calling myself autistic,” says Carley, who was diagnosed with Asperger’s years ago.
Many people with Asperger’s take pride in a diagnosis that probably describes some major historical figures, including Albert Einstein and Thomas Edison, Carley says. Under the new system, those people would represent just one extreme of a spectrum. On the other extreme is “somebody who might have to wear adult diapers and maybe a head-restraining device. This is very hard for us to swallow,” he says.
Mr Dubin is completely right.  Michael John Carley "exudes" tolerance and respect and is very accepting of differences.  I think he is about the perfect model of neurodiversity, especially what is wrong with it.

And he wonders why parents like me would have a problem with the movement.

5 comments:

  1. All the more reason to keep Asperger's a separate diagnosis in the DSM V. Also, despite Nick's "success" in life, I wonder - does he have many friends? Is he married? Have kids? Pursue many interests? He may have independence, but I would still feel a little sad for my child if they achieved this kind of "success" in isolation. Neurodiversity is fine for the small percentage of the autism spectrum who can grasp the concept... for the remainder, I'll take a cure, thanks.

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  2. This supposedly "balanced" article as you correctly point out, is a good example of everything that is wrong with the neurodiversity movement and all of the convoluted logic involved with it, most particularly the fact that Dubin has absolutely nothing in common with almost all the people he generalizes about in the piece including your daughters and myself.

    Most of what was in the article is old news for folks like you and me who have been following ND for some time and nothing new was stated except the same old tired arguments.

    In fairness to Dubin, however, I am pretty sure he wrote the article before Carley made those public statements on NPR. However, as I wrote in my gadfly post, one can't help laughing at the irony of what he said in the article and then Carley's public remarks.

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  3. AutisticWisdom,

    You are right in that there is more to having a successful life that professional accomplishments. But while I would still be sad for my children if this is all they accomplished, it would still be a big accomplishment and I would be happy that they were able to do it.

    I am conflicted about where Aspergers should go though,there are problems with keeping it out and putting it in. If you take it out how you separate HFA from this condition and if you leave it in we are left with the insanity of the current situation where people like Dubin will say that a cure isn't needed.

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  4. Jonathan,

    I'm not sure that is matters that the article was written before Carley's quotes. I am guessing that the quotes reflect Carley's real opinion and that opinion has been formed for a while now - either that or the NPR quote is a horrible misquote (which I doubt). So Dubin knew (or should have known) that Carley held these opinions before writing this article and yet still said what he did.

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