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The problem with neurodiversity

Posted Feb 02 2009 12:00am
I just wanted to quickly highlight one of major the problem with the so-called "Neurodiversity" movement. For those who haven't seen this term there is a passable if skewed definition on Wikipedia -

Neurodiversity is an idea which asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be recognized and respected as any other human variation.


or basically respect and acceptance for people on the autism spectrum. Sounds good, right? I wish it were that good it reality. What starts out as acceptance leads to all sort of strange notions about how your shouldn't attempt to "cure" or change people with autism, you should rather focus on changing society to accept them. While I could go into much more detail about this movement I wanted to highlight a specific example of why I believe that this concept is very harmful to people with autism.

The case in point will be a post on a blog called The Autism Crisis that is written by a women with autism named Michelle Dawson. Ms Dawson is an active advocate in the field of autism and is a large supported of the neurodiversity movement.

Ms Dawson believes that ABA therapy for child with autism is not a good thing and does not work. In her most recent post on the subject she goes back to the very early days of research into ABA from 1949 and gives yet another slanted view of what modern ABA is about. Well, actually, she isn't really talking about what ABA is like now any more than talking about using leeches is talking about the cutting edge of neurosurgery.

She is entitled to her opinion. However, and this goes to the heart of what is so wrong about this movement, if you look at the comments on the above linked post, you come across this gem
I have been reading some of your very well-written work and am grateful to you for providing this perspective. I believe that my 28 month old son, who does not use words, is on the autism spectrum. While I wish to help him communicate effectively in whatever way suits him, my immediate response upon learning the basics of ABA/VB was repulsion and dread. Due to the overwhelming push in favour of ABA, however, I had begun to become resigned to it.
...
I have no interest whatsoever in changing [him], all I want is to be able to communicate with him. Thank you again for this under-represented and important perspective.


Ms Dawson responded in a subsequent comment
...In my view, everyone changes through development and learning and so on, but I'm concerned when it's assumed that autistic traits and abilities, the way we develop and learn, and so on, are simply wrong. I'm also concerned about the poor quality of research in the area of ABA-based autism interventions.


(This is only a snippet of the full comment, I would suggest reading the entire original post and comment to get the full context.)

There are a few interesting things in his little exchange. Notice the mother saying she "has no interest whatsoever in changing him" and Ms Dawson's "assumed that autistic traits and abilities ... are simply wrong". These are core ideas in the neurodiversity movement and quite wrong headed. But I digress.

The real problem I see with this exchange is the impression that readers of Ms Dawson's blog are left with about ABA. ABA might not be for everyone and it certainly isn't a cure all but it is a widely accepted therapy to help young children with autism. The science is in on this treatment and it can help.

So, what we have here is a parent who is worried that their child has autism and what Ms Dawson has done is to convince her ABA is a bad thing before she even tries it or gets a true professional opinion about whether or not it would help her son.

Ms Dawson has never met this person, never met the child in question and yet she has quite possibly changed the course of his life by convincing his mother to not pursue a therapy that could give him the skills he needs to live in the world. I have no way of knowing whether any of this will actually happen or not. It is possible that his mother will decide to give ABA a try after all and it won't help. Or it is possible that she will and and it will work wonders for him.

But the way that is looks now Ms Dawson has convinced a parent not to try something that could potentially make a large difference in this child's life.

That's a problem.
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