Monday, February 22, 2010

Another week, another rant - a medical condition is not a brand

There must be something in the water or the stars must be out of alignment or some other cosmic shift happening this month, because it seems the closet elitists are coming out of the woodwork.  Last week it was Michael John Carley's I-don't-want-be-associated-with-people-who-wear-diapers as as well as a few angry aspies rants against being labeled as having autism.

This week we have a less offense but still very wrong post by Dan Coulter.  Mr. Coulter is advocating for keeping the Aspergers label separate from autism, and while that might not be a bad idea, the reasons he is suggesting for doing so are not the best.  I have no reason to think that Mr. Coulter is being malicious or purposely inappropriate in what he is saying and yet he seems to have the some very wrong ideas.

Mr Coulter's reasons basically boil to down to the following two points -
The diagnosis can help determine whether or not individuals receive services -- and whether they receive the right services. For example, a broad diagnosis can encourage a school district to use a blanket approach for autistic children at very different levels of development. More specific diagnostic categories can help ensure we give each child the support he or she needs, such as intense social skills training, or speech therapy, or accommodations in a classroom.
While he might be correct in general, he is really wrong on the details.  There is already a wide range of skills and abilities in just children with just an autism or PDD-NOS diagnosis.  They literally run the gamut from completely from children who are non-verbal, non-interactive (LFA) to one that can speak fluently and just have some social quirks (HFA)  - and everything in between.  As a result, most schools and service providers are already accustomed to look at the skills of the individual and providing  the level of support that is needed.

Keeping people with Aspergers where they are now - as part of the autism group - is not going to hurt.  And I suspect that if Aspergers because its own category, completely separate from autism, the available services would actually go down, not up.

No, I think that reason is a red herring and the real reason that Mr. Coulter's objects is this one -
And then there’s the acceptance issue. We’ve reached the point where society is becoming increasingly aware of Asperger Syndrome. That awareness has helped people explain their condition to families, friends and employers – and gain an acceptance many have yearned for all their lives. Before my wife and I went into business creating educational videos about Asperger Syndrome and autism, I worked in broadcasting and corporate public relations for more than 30 years. I know how hard it is to establish a brand and associate attributes to it. I’d hate to give up the progress we’ve made using the Asperger “brand.” I’d love to see other brands created that could help educate people about other forms of autism.
To my mind, this is yet another way of saying that we shouldn't associated Aspergers with autism because it is a distinct condition - in Mr. Coulter's words a separate brand - and people with Aspergers don't want to be lumped in the same category as lower functioning people with autism.  Let them get their own brands, he suggests.

Well, while Mr Coulter may feel it would somehow be harmful to dilute "the brand" by associating it with autism, I would like to remind him that Aspergers is already considered a form of autism.  There might be an image that Aspergers means slightly quirky but super smart but that is just a myth (unless Mr. Coulter happens to believe his own marketing propaganda).  People with Aspergers have autism as much as people with a label of autism or PDD-NOS (or Retts or CDD) do.

But don't take my word for it.  Go read what other people have to say about the difference between autism and Aspergers -
As simple background, according to the DSM-IV, the basic diagnostic distinction between autism and Asperger’s disorder is absence of clinically significant delays in language, cognitive development, and adaptive functioning in the Asperger’s group. The rest of the diagnostic criteria (impairments in social interactions, restricted repetitive and stereotype patterns of behaviors) between autism and Asperger’s is identical.
You may have the right idea, Mr. Coulter, but the way to help all people with autism is not to throw the lower functioning ones under the bus.  A medical disorder should never be viewed as a marketing brand.


  1. "People with Aspergers have autism as much as people with a label of autism or PDD-NOS (or Retts or CDD) do."

    That's very true, I'm glad you "get it". As someone reminded me recently, "It's very difficult to convince a man of something when his job requires that he doesn't understand". (Something like that, I forget the exact quote.) It was on LB/RB recently.

  2. Great blog post -