However, this information is too globally important for me NOT to address these issues here.
If you and/or a family member are an Asperger's or high-functioning individual on the autism spectrum, better plan to fasten your seatbelts.
Many of us are in for quite a ride in 2013 and beyond, thanks to the sweeping changes to the American Psychological Association's Diagnostic and Statistical Manual's version V of that diagnostic bible.
In Part 1 of this series, let's get up to speed with the news and the discussion. Here are some headlines and links regarding the DSM-V's empirical destruction of the world as we (aspies and auties alike) know it. While some of the articles are a year old, they are presented here as part of the background on the broad and devastating changes that are scheduled to occur beginning in May 2013.
Just In: Aspergers Prevalence Predicted To Fall To Zero
Emily Willingham, Contributor
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Autism (Photo credit: Wikipedia)
Today, I was one of four people speaking on Forum with Michael Krasny, on KQED (Northern California Public Radio; listen here). The big news and the show’s focus is that Aspergers (and the less-mentioned, PDD-NOS [pervasive developmental disorder-not otherwise specified) will no longer be diagnostic entities in the DSM-V, the guide clinicians theoretically use to diagnose these developmental conditions...
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From KQED's website -- http://www.kqed.org/a/forum/R201212040900
From KQED's website -- http://www.kqed.org/a/forum/R201212040900
Asperger's Syndrome Removed as Official Diagnosis
Tue, Dec 4, 2012 -- 9:00 AMThe American Psychiatric Association voted this weekend to remove the diagnosis of Asperger's syndrome from the so-called bible of psychiatry, the Diagnostic and Statistical Manual of Psychiatric Disorders. People with Asperger's will now more likely be diagnosed as having autism spectrum disorder. The APA says the change will lead to more accurate diagnoses for people with autism -- but critics say removing the diagnosis may result in fewer people getting the services and care they need.
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GRASP, the Global and Regional Asperger Syndrome Partnership has posted this facebook permalink to their action alert :
GRASP Action Alert on the DSM-V
by GRASP on Thursday, January 19, 2012 at 5:27pm ·
http://www.facebook.com/notes/grasp/grasp-action-alert-on-the-dsm-v/331472563552863
[excerpt] "...In a report being published in tomorrow's New York Times, the DSM-V committee appears to be acting in consort with clinicians who believe there is a presence of “over-diagnosis” of spectrum conditions in the U.S. While the clinical world was merely adhering to the requirements proposed in 1994’s DSM-IV, the DSM-V committee inexplicably seems to want to reverse the clock back to 1993, simply because the social services, educational, and advocacy worlds are not yet able to accommodate the numbers of people who are on the spectrum. Oddly enough, we believe that the majority of the clinical world does not believe in problems of “over-diagnosis,” and that the DSM committee surprisingly represents a minority opinion (most, if not all members of the committee have worked exclusively with only the more challenged end of the spectrum). Lastly, the ideas of “over-diagnosis” are almost always heard through bitter, emotionally-unhealthy tones; revealed as theories that are usually the product of people too afraid to admit how dumb we all were prior to 1994..."
Here is an excerpt from the NY Times article GRASP references:
New Definition of Autism Will Exclude Many, Study Suggests
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Todd Heisler/The New York Times
Mary Meyer, right, of Ramsey, N.J., said that a diagnosis of Asperger syndrome was crucial for her daughter, Susan, 37. |
By BENEDICT CAREY
Published: January 19, 2012
Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests...
...The psychiatrists’ association is wrestling with one of the most agonizing questions in mental health — where to draw the line between unusual and abnormal — and its decisions are sure to be wrenching for some families. At a time when school budgets for special education are stretched, the new diagnosis could herald more pitched battles. Tens of thousands of people receive state-backed services to help offset the disorders’ disabling effects, which include sometimes severe learning and social problems, and the diagnosis is in many ways central to their lives. Close networks of parents have bonded over common experiences with children; and the children, too, may grow to find a sense of their own identity in their struggle with the disorder.
The proposed changes would probably exclude people with a diagnosis who were higher functioning. “I’m very concerned about the change in diagnosis, because I wonder if my daughter would even qualify,” said Mary Meyer of Ramsey, N.J. A diagnosis of Asperger syndrome was crucial to helping her daughter, who is 37, gain access to services that have helped tremendously... full article here
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Finally, this ASAN (Autism Self Advocacy Network) policy paper on the implications of the changes:
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While ASAN expends well over 65% of their policy paper dealing with IDEA and student-age impact evaluation in their , they do manage to identify this sobering opinion regarding adults whose Asperger's or PDD-NOS diagnoses would be altered by the Autism Cliff :
This now leads us to my husband's and my current quality-of-life quagmire--
Will his SSDI/SSI benefits, his ONLY source of benefits/financial resources for over TEN YEARS, be cut-off in the wake of these deleterious and amorphously subjective changes to recommended diagnostic practices?
It's as though we have just been time-warped back to 2001, when he was facing diagnosis and considering the long journey toward adaptation and accommodation of our lives in the neurotypical world we were already NOT successfully navigating.
Consider the following issues we just became aware of this morning, while reading the latest news--
1. We are starting over, now trying to DETERMINE potentially what his disability status and diagnosis should be.
2. We are uncertain of the economic and vocational impacts of an unknown autism spectrum diagnosis in his future.
3. We are expending needed energy on issues which, only weeks earlier, were not present in our lives, instead of building toward future adaptive and accommodated employment initiatives, as we were previously engaged in.
While ASAN expends well over 65% of their policy paper dealing with IDEA and student-age impact evaluation in their , they do manage to identify this sobering opinion regarding adults whose Asperger's or PDD-NOS diagnoses would be altered by the Autism Cliff :
"A shift in diagnostic practice …would diminish access to both SSI and SSDI cash benefits and public health insurance..."
Will his SSDI/SSI benefits, his ONLY source of benefits/financial resources for over TEN YEARS, be cut-off in the wake of these deleterious and amorphously subjective changes to recommended diagnostic practices?
It's as though we have just been time-warped back to 2001, when he was facing diagnosis and considering the long journey toward adaptation and accommodation of our lives in the neurotypical world we were already NOT successfully navigating.
Consider the following issues we just became aware of this morning, while reading the latest news--
1. We are starting over, now trying to DETERMINE potentially what his disability status and diagnosis should be.
2. We are uncertain of the economic and vocational impacts of an unknown autism spectrum diagnosis in his future.
3. We are expending needed energy on issues which, only weeks earlier, were not present in our lives, instead of building toward future adaptive and accommodated employment initiatives, as we were previously engaged in.
4. Will the fiscal purses of states like ours, now be hit with additional diagnostic costs due to our entire family of affected autistic members needing updated diagnostic evaluations? If only 50% of the estimated 30,000 autistics in our state need re-diagnosis, that would conservatively cost our state a minimum of 3-million dollars! Will we be able to get funding for such repeated evaluations?
Guess which medical provider sector will likely profit from the need for updated and repeated diagnoses? Yeah, the same American Psychological Association practitioners who established the new DSM-V criteria.
The impact of the DSM-V's committee vote is already being felt in this Alabama autistic household...
The impact of the DSM-V's committee vote is already being felt in this Alabama autistic household...
Part 2 of this series won't be any sunnier-- the outlook appears rather grim.
