SIGN the petition to stop the new DSM-V changes, from GRASP

[LovedSparrow]

Hi friends,
Here is another letter from Michael John Carley of GRASP. (a well known and highly organized group for Aspies. He is releasing a petition to stop the changes of the diagnosis of autism. If you are interested, please sign this petition. If this is new news to you, I posted a thread called "Please read, new changes to the DSM-V) that will give more info.

Hope this makes a difference! They're looking for 25,000 signatures, which I believe we can reach.
LovedSparrow

His e-mail is below:
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All,

We have our petition online just now. Please forward to anyone and everyone concerned who is at risk of losing special education, services, or self-esteem. Click website here to sign. http://www.change.org/petitions/dsm...for-an-autism-spectrum-condition-in-the-dsm-5

Note: Medscape today released an article in which DSM-5 Committee member, Dr. Brian H. King, disputes the fears by saying "I think it is very unlikely that there's going to be a group left out in the cold" However, other Committee members such as Dr. David J. Kupfer (in the New York Times) and Dr. Catherine Lord (in several media appearences) have indicated the opposite. Whatever is going on, from our vantagepoint, could be good.

Please keep up the pressure by signing, forwarding, calling the APA at 703.907.7300 (every day—for many of you, it's worth it), and emailing them at dsm5@psych.org or apa@psych.org. Visit our Facebook page for current and prior articles on this issue. https://www.facebook.com/GRASP2003

Test of the petition is as follows:

DSM-5 Committee: Don't Reduce the Criteria for an Autism Spectrum Condition in the DSM-5

Why This Is Important

WHEREAS . . . we, as adults and teens on the spectrum (as well as we, their loved ones) do not want to return to the days prior to the DSM-IV, when most of our (their) behavioral differences were thought of as character deficits
WHEREAS . . . the DSM-IV did not (as has been stated) financially drain clinical or government resources; on the contrary, the DSM-IV, in a big picture sense, actually saved money given the long-term cost of (a) children who if not educated properly would cost more in services later on, and who because of their appropriate education could be productive citizens as adults, and (b) individuals who by knowing who they were had their capacity for anxiety, depression, or anger lessened—thus decreasing incarceration and homeless rates and reducing their dependence on others to lead productive lives
WHEREAS . . . The DSM-IV did the world great good by broadening the criteria, thereby expanding our notions of behavioral pluralism and increasing the self-esteem of innumerable individuals: Furthermore, without the DSM-IV there would most likely not be anti-bullying campaigns; (given two wars since) the much-needed increase in attention to Post-Traumatic Stress Disorder; and a multitude of other, big picture improvements for us all
WHEREAS . . . autism spectrum diagnoses are not “over-diagnosed,” especially given our still-limited understanding of how these conditions manifest in women; and how many under-represented, economically-challenged communities (especially belonging to minority groups) still have not been properly evaluated
WHEREAS . . . the proposed changes to the DSM-5 contribute to the emotionally-destructive “competition of suffering” (between opposite ends of the spectrum) that the autism world was finally starting to back away from, wherein non-GRASP and non-like-minded entities often attempted to invalidate the seriousness of another’s experiences
WHEREAS . . . the DSM-5 has attempted to implement these changes in bad faith by releasing news thereof at a time when they had no outlet available to the public for receiving commentary
WHEREAS . . . the DSM-5 Committee’s autism spectrum experts seemingly carried no real expertise or experience with either (a) the end of the spectrum at risk with these changes, nor (b) adults; and we object not to the participation of these individuals but to the overall, and very poor composition of the Committee
WHEREAS . . . the DSM-5 Committee’s attempts at damage-control (including many statements of “Well, your child may or may not qualify, but don’t worry. Wait and see instead.”) only furthers our confusion over what their true motivations could possibly be in implementing such backward revisions
WHEREAS . . . the DSM-5 Committee is not beholden to, nor should they be guided by proven or unproven economic concerns whatsoever; that they should instead be guided solely by a concern over our mental and emotional well-being, which these changes dramatically threaten
THEREFORE . . . I believe that the proposed narrowing of criteria for an autism spectrum diagnosis will cause catastrophic and irreparable damage to (1) the future of innumerable children on the spectrum who need specialized education, (2) innumerable parents with children receiving specialized education, (3) innumerable adults on the spectrum who are receiving services under the current criteria, and (4) anyone on the spectrum needing to know that their behavioral differences are the product of wiring, and not personal defect. Don’t reduce the criteria for an autism spectrum condition in the DSM-5.
Click here to go to change.org to sign
In thanks,
Michael John Carley
Executive Director
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End Petition
The folks at
GRASP
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[LovedSparrow]

If someone could let me know, when you clicked on the link, did it work? I already signed it so when I posted the link, it didn't show 'sign the petition' anymore. If you clicked on it, did it give a link to sign it?

Thanks a ton!

 

[TalusJumper]

If someone could let me know, when you clicked on the link, did it work? I already signed it so when I posted the link, it didn't show 'sign the petition' anymore. If you clicked on it, did it give a link to sign it?

Thanks a ton!

I just signed the petition (from my own mail box- not from this link) and it worked. I also tried your link and it seemed to work fine (of course I couldn't fill it out since I already filled it out).

 

[LovedSparrow]

Thanks for letting me know, TalusJumper and for signing. I think you were the one who recommended Michael John Carley's book. I read it and get e-mails from them. Thanks for that! I was wondering too if anyone else had signed the petition, thanks for telling me.

Be blessed,
LovedSparrow

 

[TalusJumper]

Thanks for letting me know, TalusJumper and for signing. I think you were the one who recommended Michael John Carley's book. I read it and get e-mails from them. Thanks for that! I was wondering too if anyone else had signed the petition, thanks for telling me.

Be blessed,
LovedSparrow

Glad to be of help! I also hope others sign the petition - this is too important to ignore!

 

[LovedSparrow]

Thanks TalusJumper!

If anyone would like, here's an updated letter from GRASP. They have 3700 signatures now.

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Dear all:

Our petition is over 3,700 at the time of writing. Thank you for whatever help you’ve given in signing and (more importantly) forwarding. Thank you for your emails and (daily?) calls to the APA. Don’t stop. This is all about momentum, and because GRASP doesn’t have the numbers of parent organizations, we especially need you to keep lobbying parent organizations to take part in preventing innumerable tens of thousands from losing special education funding, adult services, or self-esteem.

We got a boost today as the Autism Society of America (ASA) and the Autistic Self-Advocacy Network (ASAN) issued a joint statement calling for the DSM Committee to keep the diagnostic criteria in the DSM-5 as broad/restricted (depending on your views) as the DSM-IV has been. Comparing their statement to the literature you’ve seen from GRASP over the last 12 days, you may notice different points emphasized, and a different tone. But as every org will have differing realities to honor, this shouldn’t be seen as a controversy. As more and more orgs jump into this (and they have to), you will see wide disparity in WHY each org wants the current criteria maintained. But this is semantics. No one should care. Support them all. Sign everyone’s petitions, and have them all sign each other’s.

We urge members of these two orgs to lobby ASA and ASAN to follow up their statement with heightened activity (of ASA and ASAN’s choosing). ASA especially could be key in this due to the size of their membership, and the fact that, unlike GRASP and ASAN, they are a primarily parents org.

But we more urge members of (thus far) silent parents orgs to really lobby their leadership to get involved. Parents and their children are the most threatened by these proposed changes, and this particular threat is the greatest to them that I’ve seen in this field in all my years at GRASP. They should all be active, and not allow statements of “Well, your child may or may not qualify. But don’t worry. Let’s just see what happens” to lull their members into inactivity that may or may not be as devastating as this could be.

Tomorrow, GRASP will address some of the points being raised by those who feel there is nothing to worry about. Call it the “Naysayers Edition.”

 

[LovedSparrow]

An update 2/2/12
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Please forward or post to anyone or anywhere you deem appropriate…

Dear all:

As promised here's our "Naysayer's Edition" of what might be a long haul of DSM-5 updates. We've given you our reasons for not reducing the criteria for an autism spectrum diagnosis (check our Facebook page for past updates) without providing all of the counter-arguments. Herein we'll list these to the best of our ability and cite articles from which they were drawn.

As arguments both for and against the changes to the DSM-5 begin to spread in almost every major publication and media outlet, what's been emerging lately is a great diversity in WHY people are taking whatever side they're taking. What we hope to do herein is provide you with our response to both the arguments for the changes to the DSM-5, and to the arguments for the more neutral "wait and see" approach.

Serious students of this whole debate since it broke almost 2 weeks ago will see points that we've already made in prior updates. We thank them for wading through to read the as-yet-unshared views.

The repeated arguments FOR the DSM-5 changes (or for neutral inaction), are as follows:
1. Spectrum conditions are over-diagnosed.
2. The old criteria wasn't scientific enough
3. The costs for appropriate services are too great a burden on the greater collective.
4. The two known studies that GRASP and many others have been citing (including the NYTimes article that broke this story)—one by Yale's Volkmar and one by LSU's Matson/Worley—are deeply flawed studies.

The repeated arguments for inaction:
5. "I'm pretty sure the DSM-5 changes won't effect me."
6. "Let's just trust the Committee to get it right. They have many months to go before revisions are finalized, and they're the best at what they do."

Here we go . . .


1. Spectrum conditions are over-diagnosed.

Speculating that the DSM-IV's broadening of the criteria caused an over-diagnosis problem is purely that: speculative, as it's realistically unprovable. Equally speculative perhaps is GRASP's statement from our petition stating that these conditions are under-diagnosed (as examples we use the truths of how our understanding of spectrum conditions in women is still in its infancy, as well citing the many economically-challenged communities that have yet to receive proper evaluation).

The complaint of over-diagnosis is one that we've all heard for quite some time now, usually from overwhelmed school boards, or from those who resent having to respect those whom they would prefer to think of as inferior (how's that for speculative?) like they once were able to back in the good old days. These are usually embittered outbursts coming from those who are tremendously by the complexity of the autism spectrum.

The resentment factor was well illustrated in Paul Steinberg's Op-Ed in yesterday's New York Times. He began his appeal to reduce the criteria by stating "Asperger Syndrome and Aspies — the affectionate name that people diagnosed with Asperger Syndrome call themselves — seem to be everywhere" (the last paragraph in the Op-Ed is equally embittered). Steinberg belongs in that classification of clinical pros who don't want to admit, or can't see, how dumb we were—as recently as 1993—about all this stuff, and that the present resentment factor was an inevitability of Social Darwinism as we trudge through the admittedly painful process of catching up (he is, however, the exception to this stereotype as such views are usually the product of very experienced clinicians who preferred the days when they didn't have to be careful about the terminology, or had fewer cases. Steinberg is relatively young). Steinberg goes on to suggest his grand plan: a second classification of condition called "Social Disabilities," a proposal he should know the DSM-5 Committee is not considering, and that therefore no services will apply. His piece is not demonic, butSteinberg thus throws those in need of services or specialized education for social deficits back to the 1980s.

2. The old criteria wasn't scientific enough

Being more specific is of course, quite possible. But not only is exactitude an impossibility given the fact that spectrum diagnoses are given without a blood test or an MRI, but people do improve, and thus their symptomology changes. But what really makes no sense about this stance is that the planned assimilation of all spectrum diagnoses (Asperger's, autism, and PDD-NOS) is based on the reality that finding a border in between each one was pointless—an idea of deep iconic meaning (though still iconic) that our world was pretty split on 50-50—half liked lumping the diagnoses into one word, the other half wanted the separation, no matter how flawed it was in practice.

That umbrella act that was reported to be part of the changes to the DSM-5 almost two years ago is in effect giving in to (somewhat wise) idea that you can't try and get too scientific. So arguing for all spectrum conditions to be called "Autism Spectrum Disorder" and yet saying that things aren't scientific enough seems a direct contradiction.

3. The costs for appropriate services are too great a burden on the greater collective.

(Taking from GRASP's petition) The DSM-IV did not (as has been stated) financially drain clinical or government resources; on the contrary, the DSM-IV, in a big picture sense, actually saved money given the long-term cost of (a) children who if not educated properly would cost more in services later on, and who because of their appropriate education could be productive citizens as adults, and (b) individuals who by knowing who they were had their capacity for anxiety, depression, or anger lessened—thus decreasing incarceration rates, homeless rates, and reducing people's dependence on others to lead productive lives.

Additionally, there is a large portion of those on the spectrum who are not in need of any services or medication whatsoever. For them the diagnosis is usually a must for their self-esteem lest they go back to the days when their behavioral differences were interpreted as character deficits, not wiring. This portion of the spectrum costs us nothing.

But whether GRASP's stance is true or untrue, that the DSM Committee would allow costs to enter into their decision-making, as Committee member Dr. Paul J. Kupfer stated to the New York Times, is wholly inappropriate. Theirs is the task solely regarding our mental and emotional well being, a point we'll come back to at the end.

4. The two known studies that GRASP and many others have been citing (including the NYTimes story that broke this story)—one by Yale's Volkmar and one by Matson/Worley—are deeply flawed studies.

Volkmar's study claims that roughly 40% of people currently holding a spectrum diagnosis could lose the label under the DSM-5.Matson/Worley's study claims roughly 32.3%. First off, that the two main studies corroborating one another are under attack is a tad strange. But autism organizational representatives from Autism Speaks (Peter Bell on Channel 5 New York) and the Autistic Self-Advocacy Network (Melody Latimer on GRASP's Facebook page) have stated that the Volkmar study has serious flaws. They're not the only ones. DSM-5 Committee member, Dr. Catherine Lord critiques the study in the original New York Times article, and Volkmar himself states that the numbers may be slightly exaggerated.

Two points of contention:
1. Remember too, that Volkmar resigned from the DSM-5 Committee. Personality conflicts are not out of the question.

2. LSU's Worley and Matson are fairly well known, and Yale's Volkmar is very well known. These aren't studies by Andrew Wakefield. To assume no validity to their efforts is a little hard on the imagination.

3. Lastly, (and this is how GRASP has operated) let's say that both studies ARE deeply flawed. Let's say that their studies are only 50% accurate, which would render them pretty unreliable. Under that scenario (of 50% accuracy), 16%-20% of those who have a current diagnosis would lose theirs under the DSM-5. So...rough numbers here...if the prevalence numbers are 1 in 100, then in a nation of 300 million that's 3 million on the spectrum. 16%-20% of 3 million people equals 480,000-600,000 people who would lose their diagnosis if those studies are indeed "severely flawed." That's reason enough for everyone to be very concerned.

5. "I'm pretty sure the DSM-5 changes won't effect me."

In another New York Times Op-Ed from yesterday, Asperger author and professor Benjamin Nugent advocates narrowing the diagnosis significantly. After describing himself as fitting the current criteria to a T, he then discusses coming to New York and finding like-minded people that helped him gain confidence and eventually, have himself a satisfying life. Another non-clinician, he concludes his willingness to be diagnosis-less with "Under the rules in place today, any nerd, any withdrawn, bookish kid can have Asperger Syndrome. The definition should be narrowed. I don't want a kid with mild autism to go untreated. But I don't want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn't true."

Well, despite the resentment factor that every . . . lonely teenager always gets a diagnosis of Asperger's, it simply isn't true. There are clinicians who don't bestow diagnosis on people because they're weird, as hard as that is for the embittered to believe. But that myth is shared by many more than just Mr. Nugent.

Like Mr. Nugent, I too do not need services or medications for my Asperger's (though regarding pharmaceuticals, I'd bet a lot of grade school teachers would have preferred that I took them).

But unlike Mr. Nugent, I'd be ashamed of myself if I thought that my success allowed me to neglect those less fortunate.

Lastly, you may be wrong to think you'd be exempt from the changes. As both the Volkmar and the Worley/Matson studies claim, it won't just be the Albert Einstein end of the spectrum that loses their diagnosis. These changes effect the whole spectrum.

6. "Let's just trust the Committee to get it right. They have many months to go before revisions are finalized, and they're the best at what they do."

The DSM Committee members speaking to the media thus far are Kupfer, Lord, and Dr. Bryan H. King. King says no one will lose their diagnosis (seems odd if they're changing the criteria), Kupfer says "We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder . . . It becomes a cost issue." and Lord in several media appearances is attempting to reassure people while not denying that some will be left out. Let's also not forget Volkmar's resignation.

In short, they're not communicating well with each other, and they're certainly not communicating well with us. And given the disparity of statements, at least one of them is being very dishonest (Kupfer, oddly enough, seems the most straightforward with us). They are the creators of a book that will define what emotional and mental health looks like for the next dozen years or so, and yet they behave as dysfunctionally as possible. You can't make this stuff up.

Is there a chance that we have nothing to worry about? Yes.

Should we run that risk? Given that the more noise made against these possible changes furthers our chances of reversing them, should we instead stay silent and trust this Committee? Based on the Committee's behavior thus far, doing so is bad parenting, bad advocacy, professionally irresponsible, or just plain not smart. They had our trust because of all the social good that the DSM-IV gave us. Then, they lost that trust not simply because of changes that we disagreed with. They truly sealed the deal of distrust with disingenuous damage control that also exposed their internal dysfunction.