The final comment period is now open. I truly hope that you will comment (instructions below) to help keep the diagnostic criteria. I was originally okay with it all being called autism. I have no problems with my son being diagnosed autistic. What I have an issue with is how so many children would possibly not meet the criteria. Not meeting the criteria means potential loss of services.
Although my son would probably still meet the criteria, it isn’t just about my son. It is about your son, daughter, sister, brother, niece, nephew, aunt, uncle, mom, dad, cousin, neighbor…..
Before we get into the instructions from GRASP i just need to address a couple of points that people have made when saying i shouldn’t be concerned.
1) The diagnosis isn’t how a child receives services.
I have tried to obtain services for my son in many venues. It is much more difficult without a diagnosis. Certain services can ONLY be received with a diagnosis. In Ohio that would be the Autism Scholarship, which is the easiest way (and not really easy) to get the state to pay for special schooling. I could really write a whole blog post on this but then you would never get the important information below.
2). People will not lose their diagnosis.
How do you figure? Even with the current diagnostic system physicians and parents say that individuals have lost their diagnosis. Part of providing medical treatment to an individual includes evaluating the individual. Is the treatment/service working? What improvements are there. A physician/psychologist could pull out the DSM-5 and re-evaluate. Oh your child no longer meets the diagnostic criteria for autism….
Oh and I can’t write this post without questioning why, oh why, is Autism even in the DSM-5. The DSM only measures behavior! Parents and practitioners focus on behavior but really the behavior is NOT what measures an autistic. The behaviors are just how the autistic presents to the external world because of what is going on inside and they are trying to self-regulate or interact with the outside world in some way. Just my opinion and I really want to research this more in the future. Okay that isn’t what this post is about. Unfortunately at the moment the DSM-5 is our only ticket to services. Some day I hope that isn’t the case. You can bet your ass I am not getting a psych degree when I go back to school in the fall (fingers crossed! Haven’t been accepted yet!)
Since the DSM-5 is all we have please read what GRASP has sent out for instructions on commenting to the APA.
Please forward to whomever or wherever you deem appropriate . . .
At the end of this update is a slew of new articles on the DSM-5 controversy. But first . . .
It’s time to dig out those emails you sent to the APA!
The DSM-5 Committee has just announced that starting yesterday, they will take one final round of commentary from the public. Remember that when this story broke on January 19, the last commentary period had just ended, and so our emails to the APA were outside the demands of the APA as to when we were allowed to convey our opinions.
Please, please chime in, as with the delay of the publication of the new ICD codes, we have an opening to demand a delay in the new DSM’s publication.
If you are wondering what to write, below please find some talking point suggestions which you could base your comments around, if you so choose.
However, it is now time for us to make a demand. And we would ask you to demand the following in your comments….
“Because of the vast disagreements amongst clinical professionals over how many could lose an autism spectrum diagnosis with the proposed changes, I demand that the new ASD criteria undergo an independent scientific review, and a risk/benefit analysis on the impact of services. Furthermore, I demand that this review be conducted by professionals that, unlike the DSM-5 Committee members, have an extensive background in (a) services and/or clinical practice, (b) all ends of the spectrum, and (c) adult, as well as children.”
The DSM-5 commentary page can be found here. Additional, optional talking points are as follows (should you need or want them):
1. Adults and teens on the spectrum (as well as our loved ones) do not want to return to the days prior to the DSM-IV, when most of our behavioral differences were thought of as character deficits.
2. 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.
3. 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.
3. 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.
4. 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.
5. 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, (b) services, or (c) adults. We object not to the participation of these individuals, but to the overall, and very poor composition of the Committee.
6. The DSM-5 Committee is not beholden to, nor should they be guided by proven or unproven economic concerns whatsoever; and that they should instead be guided solely by a concern over our mental and emotional well-being, which these changes dramatically threaten.
7. 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.
8. The behavior of the Committee in their damage control attempts after the story broke on January 19 has been deplorable at best. From Kupfer’s citing of cost issues, to King’s disingenuous MedScape article, to Lord’s astounding comments that people “outgrow” their autism, and finally to Regier’s attempts to slander ex-Committee member (by resignation) Volkmar—an attempt in which he was caught red-handed . . . we cannot trust individuals who conduct themselves this way. If the architect of the DSM-IV, Dr. Allen Frances, is willing to publicly condemn their work habits, their ideas, and their conduct, any chance he gets; that’s saying plenty about this Committee.
Comment away, with our greatest thanks!!!
Over 6,400 signatures to the GRASP DSM-5 Petition! Sign the petition found here, and forward the link with your appeal for people to sign everywhere and anywhere. Remember that forwarding (especially through any and all appropriate social media sites) is arguably more important than signing. So when you ask people to sign, ask them to forward as well.
Does the DSM-5 stigmatize human behaviors and emotions (again)?
WBEZ (Chicago Public Media)
Wonderful News: DSM 5 Finally Begins Its Belated and Necessary Retreat
Psychology Today (More from Dr. Allen Frances)
Check our Facebook page for updates, as well as to view the history and prior articles surrounding this issue since it broke on January 19th.
Michael John Carley
The Global and Regional Asperger Syndrome Partnership, Inc.
666 Broadway, Suite 825
New York, NY 10012
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Here are suggested comments from ASAN. If you would like to read and/or follow their lead.