PLEASE READ! Important info on possible autism changes in the new DSM-V

[LovedSparrow]

Hi all,
I don't know if you all have heard of GRASP (Global and Regional Aspberger Syndrome Partnership). Michael John Carley is the founder and has written "Aspbergers from the Inside Out."

There is a panel of psychiatrists who want to change the definition of Autism in the new DSM-V slated to print in May of 2013. What does this mean? It would change who would 'qualify' for the new diagnosis: only 76% of those with classic autism, 24% currently diagnosed with Aspbergers, and 16% of those with PPD-NOS.

This may mean that our kids in school may no longer quality for certain help and programs. If your child does not 'qualify' as autistic anymore, it may mean lost help and funding.

Here is his e-mail. If you want more information with news articles, Google it using something like 'autism and dsm-v changes'.

He said there may be hope for them to not change it. He is encouraging us to call the number and e-mail these people to not change the qualifications. We can do something about this!! These psychiatrists only gave us 2-5 months to debate it, which is unreal to GRASP. They gave us no further warning than that!

GRASP has their own Facebook page that they update how things are going.
--------
Please forward and post to whomever and wherever you deem it appropriate....

Dear all:

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 officialy 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) anymore.

• 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.

Responses

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 possible.

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 dsm5@psych.org and apa@psych.org (apologies: we misspelled the latter in our last correspondence).

Look for a survey from us soon too.

With massive thanks, we are

Yours, y'all,

Michael John Carley
Executive Director

GRASP
The Global and Regional Asperger Syndrome Partnership, Inc.
666 Broadway, Suite 825
New York, NY 10012
p + f = 1.888.474.7277
GRASP

 

[LovedSparrow]

They believe that too many kids/adults are being diagnosed with Autism, like an epidemic, so that's why they're changing it. (even if it is true so many people have it) Also, the first article states: "It involves a use of treatment resources. It becomes a cost issue." So basically, they say it costs too much for people to get help.

Some articles on the revision:

http://www.nytimes.com/2012/01/21/u...some-parents-watch-closely.html?_r=2&emc=eta1

Report: New Autism Definition Could End 'Epidemic' - Disability Scoop

 

[LovedSparrow]

GRASP's Facebook page: https://www.facebook.com/GRASP2003

Their website: GRASP

 

[LovedSparrow]

Here is an article from the Autism Speaks website. It states basically the same thing but didn't know if there was new info in there for you.

http://www.autism-society.org/news/the-autism-society-comments.html

Do you guys have any thoughts about it?

 

[LovedSparrow]

An update from Michael John Carley:
--------
Please forward to anyone, or post wherever you deem appropriate...

All,

The letters are tremendous, and the calls are having an impact. Please keep it up...letters and phone calls. And if this will really effect you; if your child is at risk of losing their education funding, if you or a loved one are at risk of losing housing, health, or employment services; or if you're simply a fellow spectrumite who worries about having your behavioral differences lumped back into the category of personal defect rather than wiring . . .

. . . then maybe it's worth it to call every day?

Once again you can contact the American Psychiatric Association by calling 703.907.7300 or by emailing dsm5@psych.org and apa@psych.org.

Three updates:

1. We're working on a petition that, once announced, will really need your help in circulating. Thank you in advance for whatever help you can give herein.

2. There has been some confusion over Dr. Fred Volkmar's quotes in the original NYTimes article that started this whole thing. This was somewhat inevitable because of the way his quotes were placed within the context, and . . . because sarcasm is simply something that we don't pick up at times. But his "epidemic" quote was sarcasm. Remember that Volkmar resigned his position on the DSM-5 Committee.

3. In your letters, a couple of times there has been some confusion over which proposed changes are the new ones we're protesting. Two years ago the proposed changes surrounded terminology—doing away with Asperger's Syndrome and PDD-NOS and having them combined with autism under a much broader diagnosis of Autism Spectrum Disorder. Feel free to write about your feelings on this, but understand that these are not the latest developments. The latest changes surround restricting the criteria so that multitudes of people will lose their diagnosis. Check our facebook page for prior day-by-day developments if you need the older posts for refresher info.

Thanks again y'all. More later.

Michael John Carley
Executive Director
GRASP
The Global and Regional Asperger Syndrome Partnership, Inc.
666 Broadway, Suite 825
New York, NY 10012
p + f = 1.888.474.7277
GRASP

Help GRASP make a difference. Donate now by clicking the link below:
NYCharities.org

 

[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:
---------------
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-...n-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
---------------------------------
End Petition
The folks at
GRASP
The Global and Regional Asperger Syndrome Partnership, Inc.
666 Broadway, Suite 825
New York, NY 10012
p + f = 1.888.474.7277
GRASP

Help GRASP make a difference. Donate now by clicking the link below:
NYCharities.org
Change email address/Manage your subscription / Leave mailing list
Powered by YMLP

 

[jackmt]

They believe that too many kids/adults are being diagnosed with Autism, like an epidemic, so that's why they're changing it. (even if it is true so many people have it) Also, the first article states: "It involves a use of treatment resources. It becomes a cost issue." So basically, they say it costs too much for people to get help.

Some articles on the revision:

http://www.nytimes.com/2012/01/21/u...some-parents-watch-closely.html?_r=2&emc=eta1

Report: New Autism Definition Could End 'Epidemic' - Disability Scoop

I have worked in the mental health profession with developmentally disabled adults for years. I saw several deliberate misdiagnoses when a client presented with some symptoms that could "reasonably" be interpreted as falling under the criteria for the maladie-du-jour. This was done, not for the patient, but for the care provider. There was funding available for clients with the newly discovered disorder, but not for those with no diagnosis or an uninteresting one. This is a disservice to the clients; wrong meds are given, the wrong treatment is given, etc. Money ought never be brought into consideration for a Dx.

Being recently Dxed in my 50s, I share your concerns about the new DSM, but I wonder if some of it is misplaced. There are differing sets of criteria for Dxing Asperger's. The DSM-IV is much broader than what describes me, and the Australian criteria looks as if it was written to describe me. I am not very familiar with the other sets, but what I recall is that they are very similar to the DSM-IV. Perhaps the DSM is too broad. Perhaps I can say that because I feel reasonably safe in my Dx. I don't know.

I also wonder if many of the wrongly or marginally Dxed Asperger children will grow out of the Dx, or a more apt one will be found. I know of many, myself included, who were misDxed on the path to their Aspie Dx.

Are the proposed new criteria available yet? I'd like to see them before I decide pro or con.

 

[LovedSparrow]

Hi Jackmt,
I found this on GRASP's FB page. Does this help answer? I'll try to find the specific DSM-V criteria they're proposing. The only thing I don't like about GRASP's letter here is it says "send angry but not irrational letters to.." I don't think being angry will sway any decisions...

I'll follow up.
-------
Very Important DSM-5 Update....for those of you who do not wish to sign up to the GRASP website to read...

Please note, however, that the links will not work herein. You'll have to scroll down our Facebook page to grab the articles being cited in this update, whereas if you read this update on GRASP's website, the links will already be there. Note2: Fear not, GRASP subscriptions through our website are free, as are all of GRASP's programs.
------------------------------------------
Please forward to anyone and everyone you deem appropriate, especially if they’ve been following the DSM-5 debate closely . . .

Dear all:

A second study that has just come to light claims that the DSM-5 will significantly reduce the amount of people (by 32.3%) who will qualify for an autism spectrum diagnosis. Furthermore, this study indicates that those whose diagnoses are eliminated by the newer criteria will include the more challenged, and not just the end of the spectrum that is better able to mirror greater society.

Given the statements of many DSM-5 Committee members since the story broke last Thursday, this study corroborates many fears, but it also raises new questions (our summations will follow the study’s excerpts).

GRASP is grateful to authors, Dr. Julie A Worley and Dr. Johnny L. Matson of Louisiana State University, along with their representatives, for giving GRASP permission to post quotes from "Comparing Symptoms of Autism Spectrum Disorders using the Current DSM-IV-TR Diagnostic Criteria and the Proposed DSM-5 Diagnostic Criteria" (in press for "Research in Autism Spectrum Disorders").

Excerpts (2) from the final "Discussion" section of the study are as follows:

1. “The proposed revisions to the diagnostic category of ASD are significant . . . It was hypothesized that children meeting only DSM-IV-TR diagnostic criteria (APA, 2000) for ASD would score significantly higher (i.e., indicating more symptom severity) than children who were typically developing and significantly lower than those who met future diagnostic criteria for ASD on a measure of autism symptoms (i.e., ASD-DC; Matson & González, 2007). This hypothesis was only partially supported. That is, participants meeting only DSM-IV-TR criteria for ASD scored significantly higher than the typically developing children, but not significantly different than children meeting DSM-5 diagnostic criteria (APA, 2011). Thus, children and adolescents that no longer met criteria still had significant symptoms of ASD when compared to children who were typically developing. Even more concerning is that children and adolescents who met current, but not future diagnostic criteria had similar symptom severity of ASD when compared to children and adolescents who continued to meet diagnostic criteria. Therefore, the subset of children who met DSM-IV-TR, but not DSM-5 diagnostic criteria are experiencing significant impairments related to the core symptom domains of ASD. Thus, the proposed revisions may be decreasing sensitivity, suggesting that that the broader symptom definition utilized in the current diagnostic manual (i.e., DSM-IV-TR, APA, 2000) may be a superior classification system. “

2. “Ongoing research examining the impact of continued service delivery after early intervention services subside is urgent given the changing diagnostic categories and criteria of ASD proposed for the DSM-5 (APA, 2011). However, if ongoing treatment is necessary, who will pay for these services? Interventions currently utilized to treat individuals diagnosed with various ASDs are largely consistent and similar treatment methodologies should remain despite the newly proposed diagnostic category. However, payment coverage for these children will likely become an obstacle. About a decade ago, the majority of insurance companies had exclusions for autism (Peele, Lave, Kelleher, 2002), but most now cover services for those diagnosed. However, it is probable that insurance companies will not provide treatment coverage for children who still exhibit significant symptoms of ASD, but no longer meet diagnostic criteria under the DSM-V definition of the disorder.
Another implication of the proposed diagnostic changes will be apparent in incidence and prevalence rates of ASD. With the proposal to narrow the symptom definition, fewer children will meet diagnostic criteria upon the publication of the DSM-5 (APA, 2011). Thus, a decreasing trend of incidence and prevalence rates should be observed once the DSM-5 is utilized diagnostically. A decrease in prevalence rates for ASD was observed in the current study when utilizing the DSM-5 diagnostic criteria compared to the DSM-IV-TR (APA, 2000). In the current study, the prevalence of ASD decreased by 32.3% when using the DSM-5 instead of the DSM-IV-TR. Although lower rates of both prevalence and incidence are pleasing, it may come at the cost of providing services to those who still require them.
In closing, the proposed revisions to the diagnostic category of ASD are supposed to increase the specificity of the diagnosis. However, as observed in the current study, children and adolescents who met current, but not future criteria still exhibited significant symptoms. “

End excerpts.

GRASP’s commentary (and not necessarily the views of the study's authors) is as follows:

This study backs up some of the numbers that Yale's Dr. Fred Volkmar cited in his study as reported in the New York Times when this story broke last Thursday. Dr. Volkmar, who earlier resigned from the DSM-5 Committee, has had his study attacked by proponents of the newer criteria since then who seek to invalidate his findings. Two studies remotely corroborating each other (as we believe these two do) will be hard to attack.

GRASP has cited the disparity, and sometimes contradictory nature of damage control attempts by several DSM-5 Committee members in several media articles. But now that the evidence is quite strong that changes will be as drastic as feared, if not more so, it paints many in a negative light who have tried to downplay the level of change forthcoming, but it especially paints Dr. Brian H. Hunter in a poor manner. In what was a suspicious article to begin with (no contrary opinion provided—shame on author, Deborah Brauser), Dr. King's comments in last week's MedScape article should now be looked upon in the light of, at best, misrepresentation. Wethinks those who reassuringly tell us "No one will be left behind" really mean "No one will be left behind who deserves a diagnosis under the DSM-5 criteria."

PDF files of the entire Worley/Matson study are available to clinical or media professionals. You can request a copy by emailing press@grasp.org

What can you do if reducing the criteria threatens your child's special education funding, your services as an adult, or your self-esteem as an adult? Please maintain the following outline without letup:

1. Sign the petition found here, and forward the link with your appeal for people to sign everywhere and anywhere. Again: forwarding (especially through any and all appropriate social media sites) is arguably more important than signing.
2. Call the American Psychiatric Association (APA)—during normal business hours; once every day, if possible, at 703.907.7300. Yes, they are telling you to email instead. But we ask that you please instead be the articulate, impassioned, and peaceful nuisance that is needed in this debate, and not adhere to their instructions.
3. Email the your letters to apa@psych.org and to dsm5@psych.org
4. Check our Facebook page for updates, as well as to view the history and prior articles surrounding this issue since it broke 9 days ago. This is especially helpful for those of you who feel you need talking points for your emails to the APA.

Want extra credit?

Email angry but not irrational letters regarding Brian H. King’s comments and Deborah Brauser’s reporting techniques to Medscape at news@medscape.net. The people who comprise the DSM-5 Committee are probably smarter than 90% of us. But that doesn’t give them the right to insult whatever intelligence we have.

It’s one thing for the DSM to change in ways we don’t like. It’s another to be elusive or dishonest. They may have backed themselves into a conversation about their motives, that we need to initiate.

All we can do is facilitate. It’s you who do all the work. It’s up to you, not GRASP, to stop this.

Best,

The folks at GRASP