A Message from
Please forward and post to whomever
and wherever you deem it appropriate....
Thank you for the calls and the emails. We are having a positive effect,
and with 10 months before the final version of the new DSM is due, we
have a chance of reversing the Committee's intentions of significantly
reducing the numbers of those who would qualify for a diagnosis. Please
keep it up starting Monday morning.
Once again, the New York Times is speculating that the new criteria
would qualify only 76% of those currently diagnosed with classic autism,
24% of those currently diagnosed with Asperger's, and 16% of those
currently diagnosed with PDD-NOS. This means that:
• Children who do not qualify for a diagnosis under the new revisions
will almost certainly be denied special education funding by their
cities and states (after all, what school board will spend money on a
child with no officially recognized learning challenge?)
• Many adults on SSI, SSDI, or Disability who barely meet the criteria
for these services may not have those services (and health coverage)
• We risk a possible return to the days of 1993 and prior where negative
interpretations of behavioral differences were rather status quo.
The motivations behind these mind-boggling changes, are very much
unclear to us. While the autism world in our current void of information
is speculating a multitude of possibilities—the most dramatic being
improper influence of insurance companies—we would urge people to
continue pressing the DSM-V committee with the idea that the current
committee members have experience only with the more-challenged end of
the spectrum. None have any real experience with the end of the spectrum
whose challenges are less physically-visible.
In addition to your talking points, and if you believe that the
motivations are in any way fiscal, we urge you to remind the committee
of how, in the big picture, the DSM-IV (which expanded spectrum
diagnoses) saved us money. When you think of (though cannot estimate)
the reduction in anxiety, anger, and depression, that was caused by
legions of people finally understanding who they were—that they were
wired differently, not rude . . . argue the mind-boggling cost of
returning to those levels of anxiety, anger, and depression.
While in our last update, we conveyed the APA's statement that they were
not taking comments at the present time, committee members and other
organizations are now starting to respond through either internal or
external media. In general you should feel you have every right to
respond to these responses. The two most frequently seen tones (followed
by our suggestions) are follows:
1. "Well, yes, your child may not qualify for specialized education
under the new criteria, but please bear with us. Our hope is that this
will improve services for all." They do not go on to explain how this is
1R. Our no-brainer suggestion is to point out how senseless this
response is. If they're admitting that fewer will qualify, how does this
improve chances of "improving services for all." If your anger is
getting the better of you, politely state that their response makes
things worse because you feel your intelligence is being insulted.
2. These events are reviving the dormant "competition of suffering."
Many people (who likely have some connection to a
significantly-challenged fellow spectrumite) across the country in
facebook posts, tweets...etc. are proclaiming "Good! Autism needs to be
less confusing. These (AS or PDD-NOS) people never should have been
brought in to the spectrum equation."
2R. Do not meet their hate with hate. The self-incriminating and
emotionally-unhealthy nature of these attacks is the product of their
being unable to grasp the complexity of the spectrum, or they are simply
overwhelmed and underserved when compared with their needs. Yes, they
may simply be bad people, but we won't know that (and we have bad people
too). As they invalidate the experiences of others, do not match their
ugliness. If you must respond, something appropriate would be akin to "I
find it so sad that you would deny help to someone else simply because
you still need help (embellish with detail that perhaps pertains to your
experiences)." Show them, do not tell them, how ill they were in the
moment of writing.
Once again our
facebook page is the best place to dig up prior developments. And
once again, keep the calls coming. Call the American Psychiatric
Association at 703.907.7300. They will ask you not to call, but please
keep calling. In addition, please email them at
firstname.lastname@example.org (apologies: we
misspelled the latter in our last correspondence).
Look for a survey from us soon too.
With massive thanks, we are
Michael John Carley
The Global and Regional Asperger Syndrome Partnership, Inc.
666 Broadway, Suite 825
New York, NY 10012
p + f = 1.888.474.7277