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Jan 20

Is It Time to Abandon the DSM?

Is It Time to Abandon the DSM?
Controversy Over Autism May Present an Opportunity

January 20, 2012

©2012 Michael Forbes Wilcox

“…disability is a natural part of the human experience…”

From The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (originally passed in 1990, and commonly referred to as “The DD Act”)

The American Psychiatric Association Is No Longer Relevant

The American Psychiatric Association (APA) has been the focus of intense controversy in recent months, as it struggles to revise its Bible, the “DSM” – the Diagnostic and Statistical Manual of Mental Disorders.
There is an article in today’s New York Times which brings attention to the latest twist in this saga.
The opening paragraph of the article summarizes the stark future possibly faced by those of us in the autism community who are working for more inclusion:
Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.”
Whether the study cited in the article proves to be accurate or not, this whole controversy raises the question of whether the APA should be the arbiter of the diagnosis of autism.
In my view, the DSM has outlived its usefulness as a diagnostic tool for autism.
Yes, I understand that the practical difficulties of moving away from the DSM are not insignificant. It is cited in legislation as the authority on autism even in bills such as the Massachusetts ARICA law, which was put into place in 2010 to (supposedly) redefine autism as a medical condition.

Autism Is Not a Psychiatric Condition

As noted, we (the autism community) have gone to great lengths to have autism categorized, for insurance purposes, as a medical condition, not a “mental health” (or psychiatric) one. So, how does the APA have the power to decide what autism is? Do they define what diabetes is? I don’t think so.
We are in the trap of buying into the behavioral model. Autism is a neurological condition, not a behavioral one. Since there is no widely-accepted objective test that will identify someone as autistic, we are left with a behavioral, subjective diagnostic process. This is, I suppose, how the APA retains a toehold. And, of course, to uphold the tradition/myth that only psychiatrists are qualified to prescribe psychotropic medications.
Perhaps we are fighting the wrong fight. Why argue with the APA? Why not work in other areas to ensure that Asperger’s and related learning differences are recognized in the world at large as disabilities that need to be treated on a par with any other disability that creates a barrier to full inclusion or to gaining full potential?
Yes, I realize my suggestion raises a whole host of other questions and challenges. Who, then, defines what is autism/Asperger’s etc.? Who is qualified to diagnose? I have a non-clinical view (my chief qualification in this field being that I am autistic), and I’m sure there are many complications of which I’m not aware, but I have faith that, if properly worked out, things should not be all that much different from the way they are today.
It seems to me that by engaging in this pissing contest with the APA, we cede to them their authority over the autism community and grant them the right to define how the English language is to be used. If you accept their definition, autism is a “disorder” — I disagree.

I welcome feedback and comments.

On Beyond Zebra

We all know that language is important (and none was a greater illustrator of its power than Dr. Seuss!).
In a forthcoming essay, I will argue that “Autism is Just Autism” – and discuss (among other things) the following points:

This essay examines some of the language commonly used when referring to autism, and suggests some changes that might soften the negative aspects of those words and phrases. Among others, these concepts are discussed:

  • Autism is not a disorder. The DD Act states that “disability is a natural part of the human experience…” Beyond that, we need to consider the social model of disability.
  • Thinking of autism as a “constellation” might be a more apt description than as a “spectrum” – the latter word implies a ranking of people along only one dimension, and leads to the false ideas around the “severity” of autism.
  • Ironically, the application of “person first” language in the world of autism has led to sharp disagreements and hurt feelings, with people on each side believing they are being respectful and the others are not.

8 comments

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  1. Irene Jenks

    I love your constellation suggestion vs. spectrum. Or maybe we’re part of a galaxy. Autism is multi-dimensional for certain.

    I also especially appreciate your correction that autism is a disability and not a disorder nor a psychiatric condition.

    Perhaps it’s just as well that my adult son is refusing to be evaluated by a psychiatrist, if afterall, the APA and their DSM is only qualified to diagnose mental health / psychiatric conditions and Aspergers / Autism is really a medical disability. I haven’t been able to come up with a clear answer for why he should get a diagnosis anyway.

  2. Landon Bryce

    Thanks. Yes. Very well-stated and smart.

  3. John Makin

    Well said Michael; I believe there is a fundamental problem with the modern psychiatric approach to research in this area.
    So much is made of their interpretation of the ‘data’ they obtain. For example, the way that we are stigmatised as having no Empathy.
    There may be nothing wrong with that data as far as the behaviours recorded under certain conditions but they really have no idea how to interpret that data!
    Because their premise that ‘this behaviour’ means that they are thinking ‘this way’ is fundamentally wrong!
    We think differently therefore one cannot interpret HOW or WHAT we are thinking by comparing to NT thinking! By definition that is NOT how we think!

    No the basic problem is that so much of their research is fundamentally flawed (Much, after all, is only there to enhance the reputation of the researcher)

  4. Paula C. Durbin-Westby

    Very thoughtful! I’m looking forward to your next article.

  5. Understanding Autism

    You bring up some excellent points. I am glad I found your blog. Looking forward to reading more comments and more of your blogs.

    I am a mother of triplets who are all on the spectrum. Two boys and a girl. They were diagnosed with PDD NOS, Aspergers and Autistic Disorder.

    I feel I learn the most from people who are on the spectrum.

    Thanks!

  6. Katzedecimal

    I agree. It’s been proven repeatedly that Autism & Asperger’s Syndrome are neurological in nature and originate in the structure of the brain. The day will come when Autism Spectrum Disorders can be diagnosed by diagnostic imaging. But the fact that the DSM-V is set to classify *grief* as a mental disorder (????) tells me that the people creating the DSM-V are totally out of whack and appear determined to turn every aspect of human life into an illness. That’s not right and it’s not helpful to humanity.

  7. quirkyandlaughing

    “how does the APA have the power to decide what autism is? Do they define what diabetes is? I don’t think so.”

    This has been my question & it’s driving me crazy. I’ve left similar comments on a few news articles & people jumped all over me. I’m very happy to have found a place where people are on the same wavelength.

  8. aspiemama

    See “Self-injurious behavior in Autism Spectrum Disorder” Self injury behavior is something DSM-5 has yet to acknowledge is common among autistics of all functioning levels. Failing to notice or do research on self injurious behaviors in the spectrum is not helping autism community.

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