________________________________________________________________
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
|