The Schafer Autism Report


  


 



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Somewhere Over the Spectrum, Part II
Response to Letters
Lenny Schafer

      It is all well and good to debate the DSM-IV standards, and all the labels associated with the autism label, especially since it is a document that is as much politics as it is science, and is prone to the influences of popular sentiments. That is not my purpose.
      The problem arises when the “gray areas” are exploited by a few in the service of deceptive political (and commercial) manipulation as it is with the “don’t-cure-us” bunch.
      It is reasonable to use “autism” to help describe the other labels on the spectrum, it is quite another to try to redefine autism as trivial, something less than disabling, in order to make oneself feel good and empowered -- at the terrible expense of those who suffer so from the disability.
      It is because of the misrepresentations of this small disgruntled group and their intervention in the Canadian courts, in part, that an untold number of children with undeniable autism will no longer receive the benefits of behavioral therapy to help them achieve basic independent living skills, at the least.  This is an achievement about which to be proud?
      This autism verses Aspergers debate is no longer a parlor game of pin-the-label-on-the-dorky.  Serious harm has been done and those who give aid and comfort to the impostors are misguided and ought to be ashamed for the harm they are helping to inflict.
      I should like to point out that I did not write the DSM-IV definitions of autism that distinguishes it from Asperger Syndrome. The definitions used were taken verbatim from expert sources which I referenced at the end of the editorial.  I acknowledge that this is a technical definition and doesn't speak to the very real, if not romantic "culture of autism"(1) in which anyone who taps a pencil can opt themselves in as a member, or be opted in posthumously by parlor diagnosticians. The problem is that if anyone and everyone can be autistic because of trey area subjective diagnostic criteria, then no one is autistic. And we know that not to be true. We need honest labels.
      All this business doesn't have to be so complicated.  Despite some silly assertions to the contrary, a cornerstone to the definition of autism is disability.  The legal/medical definition of disability is straight forward, with some notable exceptions.  It is "a medically determinable physical or mental impairment that is expected to result in death or which will last for at least 12 consecutive months, and which prevents them from performing the work related activities of their previous jobs or any other jobs which they might be able to perform based on their age, education, and work experience."(2)  Was autistic-labeled Albert Einstein(3) or Michaelangelo(4) so disabled? Surly not by this criteria. But that doesn't stop autism from being so trivialized by amateurs and experts alike,(5) especially if it helps promote fringe political agendas, medical careers, or helps sell "autism" books.
      Perhaps what is needed is a new modifier to the term autism to help honestly distinguish the “abled” from the disabled, to help keep some of the former from misrepresenting the latter.
      Biomedical definitions of autism appears to be emerging(6,7) albeit slowly, which in all likelihood will result in a revisiting of the clinical criteria with harder science, in any event. There should be no need for anyone to shroud their situation darker than it is to gain advantages, support or self-esteem. There is no reason why a win-win solution can not emerge from this for everyone in the autism community; that truly no one be left behind.

REFERENCES
1. Attempts at quasi-autism label coinage. "Shadow Syndrome" Catherine Johnson, "LAPSE" Latent Autistic Personality Syndrome, Lenny Schafer.
2. "What We Mean By Disability", Social Security Online.
http://www.ssa.gov/dibplan/dqualify4.htm
3. "Was Michaelangelo Autistic?", The Periscope
Companion weblog to Euro-correspondent.com journalist network, http://theperiscope.blogs.com/the_periscope_/2004/06/was_michaelange.html
4. "Was Einstein Autistic?", One hour tape that focuses on the research conducted over several years by Illana Katz and Dr. Edward R. Ritvo, Professor of Medicine at UCLA. http://reallifestories.com/public/ein.html
5. Autism FAQ - Well known Autistic People, "It is probable that nearly all famous people [are] occasionally cited as being possibly autistic." ["Autistic" often supplanting the former pop-diagnosis of "narcissistic" -LS.] http://www.autism-resources.com/autismfaq-well.html
6. Autism: An Immunological Perspective, The Autism Autoimmunity Project. http://www.taap.info/
7. What is Autism? National Alliance for Autism Research http://www.naar.org/aboutaut/whatis_hist.htm