Who decides what’s autistic, anyway?

Recent stories about potential bias on the part of the contributors to the DSM-IV got me thinking about the DSM, how it is developed, and who develops it. If you aren’t yet aware, it is the DSM IV that contains the diagnostic criteria for the Pervasive Development Disorders (PDD), including autism.

The DSM is published by the American Psychiatric Association and dates back to 1952. The next revision is expected to be published in 2011, with working groups to be formed in the not too distant future to start working on it.

With all the attention, discussion, controversy, and activism devoted to autism over the past several years (and which I expect will continue to grow over the next several years), I wonder what the new DSM-V will have to say about autism. Will it break ASD down into different sub-types? Will it take into account physical as well as neurological questions? Will it basically stay the same?

If you could provide input to the DSM-V authors on the topic of autism, what would it be?

As excerpted on wikipedia, here is the DSM definition (section 299.00) for autism:

  1. A total of six (or more) items from (1), (2) and (3), with at least two from (1), and one each from (2) and (3):
    1. qualitative impairment in social interaction, as manifested by at least two of the following:
      1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
      2. failure to develop peer relationships appropriate to developmental level
      3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
      4. lack of social or emotional reciprocity

    2. qualitative impairments in communication as manifested by at least one of the following:
      1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
      2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
      3. stereotyped and repetitive use of language or idiosyncratic language
      4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

    3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
      1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
      2. apparently inflexible adherence to specific, nonfunctional routines or rituals
      3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
      4. persistent preoccupation with parts of objects

  2. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
  3. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder

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