The Autistic Journalist

Using words to explain the mind

Visualizing a singular identity

with one comment

Perhaps the most in-depth article I’ve read on autism since I began the blog. An article from the New York Times performs an extended look into the possibility of removing Asperger Syndrome and replacing it with simply autism spectrum disorder. A panel of 13 experts are evaluating autism and other neurological disorders for the new psychiatric diagnostic manual due in 2012. Their argument is that Asperger as a label is confusing and not very useful as psychiatrists shift from a “black and white” view of neurological disorders to a continuum with many levels of severity. Potential controversies are also discussed, as insurers, schools and researches all account for Asperger Syndrome. Australian psychologist Tony Attwood and Temple Grandin, America’s best-known autistic, also suggest keeping the term. Attwood’s concern is that removing Asperger Syndrome as a medical label may inhibit people on the spectrum from being assessed, due to the negative connotations of autism versus Asperger Syndrome.

This article highlights the controversies surrounding autism, from accounting for social setbacks and skills possessed by few others to constantly changing labels and the myriad of other health problems that often accompany autism (if only receding hair lines were included :-p ).

This is the first article to use percentages to explain how many kids have autism based on federal data. This is also the first article in some time that doesn’t provide the textbook definition of autism or Asperger Syndrome, but summarizes the disability in a way the mainstream can understand. I discussed the significance of both findings in a post I made in October reporting the government studies, suggesting the diagnosis rate was climbing. The New York Times may be considering the increase of awareness from the increase in autism stories and their reporters are electing not to define autism in the classic sense. The public is starting to catch on.

What this article also does is underscore the individuality within autism itself, an angle seldom seen in popular press. Most stories told through electronic media often group all autistic people together, not accounting for the abilities that astonish adults and bore playmates to tears. Autism Speaks’ Autism Every Day, released three years ago, is an example of lumping everyone to a single unit. With the proposed changes and almost certain debate forthcoming, we get to look into…GASP…differing opinions within the autism community. Some prefer keeping the Asperger name while others have lived comfortably with the autism label. Instead of a two-sided debate with a for and against side, the Times turns the story into a multi-perspective discussion with the scholarly medical side blending with the real-life side, a useful approach since the autism debate nearly matches autism itself in complexity.

On the surface, the article reports a very detailed discussion and debate over a possible exchange in terminology when diagnosing autism in kids and adults. Beyond that could be the beginning of the next stage of social discussions surrounding autism: self-identification. Detailed in modern media including True Blood and X-Men 3: The Last Stand, autistic people with enough cognitive abilities to process thoughts are now asking themselves who they are and who gets to decide how they live. This is no different from anyone else or any other group subjected to the prejudices of privilege and 20th century thinking, but the New York Times story is the first to profile what could be an autistic identity crisis.


Written by TheSportsBrain

November 4, 2009 at 11:44 pm

One Response

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  1. I have heard lot of controversy over the potential move of Aspergers to ASD categorization. I side with Dr. Atwood and Temple Grandin.

    Aspergers is a complex diganosis with auxillary medical issues as is severe autism. For some time I have thought Aspergers needs a seperate category under the PDD umbrella. Most people would still recognize it as part of the ASD or autism spectrum but treat it as a seperate entity from both the clinical diagnostic and treatment perspectives.

    With the move to ASD everything will be come more vague and confusing unless the dimensional assessment (coming in DSM-IV) is done properly with specific measures of characteristics via scales, specific to Aspergers. The characteristics would have to be based off a composite picture: lists of what each Aspergers deals with; what the top professinoals list; and again what the presenters think, like Tmeple Grandin.

    And again this wold be a monumental effort, one CPA/ASA isn’t wanting to persue. So we are back to different psychologists/psychiatrists differing opinions.

    My idea in my city would be a propject to cullate information from all books, personal accounts (web, newspaper or otherwise), and psychologists experience and build a list of characteristics (maybe represented in a cloud/cluster diagram) and analyse each one for prevalance (i.e., how many times psychologists and others pinpoint that characterstic in the individual), context (i.e., medical/genetic syndroms, historical environment exposure) and a match query.

    Based on this information with a wider array of characteristics, genetic vulnerability, environmental exposure history a criteria is formed, based on dimensional measures and contextual values. It would be ultimately a “dimensional-matrix” construct. Depending on biological/environmental context of the individual would decide where he is on the “dimensional-matrix” picture. This picture is more then just a spectrum, which is 2D, variable in characterization placement and extent of the characteristics, but, as well as, a thrid axis of context based on auxillary biological/environmental issues.

    If anyboyd wants to discuss this please email me:
    “”. Please don’t take it for your own idea. Thanks…!!


    September 4, 2010 at 6:30 pm

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