Friday, January 20, 2012

DSM5- Don't Panic Think it Through:UPDATED 1/25/12

Yesterday we read in the New York Times how the DSM5 definition of autism/pdd-nos/aspergers is going to change. The upshot of this is that according to the head of the DSM5 committee the overwhelming majority of those diagnosed on the spectrum would loose their dx. Read HERE.

Let's NOT panic. Yes your initial reaction is one of OMG, now what. It has been hard enough getting the dx for our children (or even ourselves) over the years never mind the necessary supports and services they need to function. But now the medical community has decided that there is nothing really wrong with our children.

Let's think this through as an advocacy group. It is time for those who claim to represent the autism community:

Autism Speaks, ASAN, National Autism Foundation, GRASP, ASPEN, Asperger's Association of New England, Autism Science Foundation, Aspergers Syndrome and HFA Association, COPPA, icare4autism, MAAP, NAMI, PACER, Autism Society, Autism Women's Network to name but a few... (I have links for them on my Helpful Websites tab)

to come forward and put their two cents into the comment period. Only they have the financial resources and individual representatives with medical backgrounds to do this and be taken seriously.

Honestly, I am not certain that outraged letters from parents alone will have any effect. This is not an emotional issue for medical practice but a scientific one. So it has to be answered by members of the scientific and medical community or those with a chemistry or biology background. The response needs to be clear, concise and on point, addressing every misdirection, scientific malfeasance and "psychiatric" misstep.

I even contemplated what I would write...Beyond my own personal experience over the last twenty years, I have nothing but anecdotal evidence to offer and that is not really good enough no matter what parents think.

Just as an aside too: I actually read a very intersting comment at the NYT which asked: why since we know that autism is biologically based, is it still categorized as a "mental illness" instead of a "neurological impairment." The psychiatric causes of autism have been completely discounted and acknowledged as ill-founded.  Why does the psychiatric community have any sway in the matter over and above neurology, biology and developmental pediatric experts? Just because someone has a medical degree does not make them an expert in every area of medicine, no more than a lawyer can tell you about every aspect of law. (Let me tell you too, if you have a lawyer who tells you he can help you with every aspect of your legal needs, you need a new lawyer.)

Meanwhile, HERE is the actual DSM5 from the American Psychiatric Association.  Read through it. Learn what they are saying. No I am not telling everyone that our concerns or fears are not real. They are, but if you are going to discuss something so important go straight to the source of the controversy. Don't rely simply on someone else's take on the subject.

Here is a list of articles that have been tweeted about the subject. I will update it as I find new articles. Additionally, if anyone finds articles or thoughtful posts, not listed here, please add to them in the comments section below:

Bloomberg
Panic about DSM5 Changes from the Autcast.com
Will New Diagnosis Criteria End the "Autism Epidemic" from Care2
DSM5- Living Document or Dead on Arrival
Two Fallacies Invalidate the DSM5Trials
Don't Expect Much
DSM-5 Under Attack
Therapists revolt against psychiatry's bible 
A Giant Leap Backwards 
Friendship Circle has a huge list of posts that may interest everyone (this post is included)
A Video from Nancy Grace  Update 1/25/12
DSM5Autism Criteria: Clarifying Impact, Taking Acting 
                     from Thinking Person's Guide to Autism 1/25/12

Remember part of "Embracing your Inner Bitch" is using your smarts, strength, thoughtfulness and abilities in a calm fruitful manner. I personally had my sarcastic, obnoxious, anxiety driven meltdown yesterday. Take a breath, don't panic, now lets begin....

UPDATE: I have found some petitions that are already on line against the changes in the DSM5:

GRASP call to action read HERE.  
Call 703-907-7300 to voice your concerns directly to the DSM committee.

From change.org there is a petition objecting to the change in definition of autism/asperger/pdd-nos. The petitioners ask that the DSM4 definitions remain. Begun by Aspie Side of Life 
" Under the proposed changes many will lose necessary services. The argument for doing this is that there are not systems in place to support the increased need of people that meet the current diagnosis. The individuals that will no longer qualify for services will still need the services but will not qualify to recieve them.  Due to the lack of services this will prevent them from living up to their full potential.  Please sign this position to show that you do not agree with these changes."

From ipetition  against changing the ASD Criteria.
"This petition is against the proposed changes to the DSM-V, which would eliminate high functioning ASD patients (PDD-NOS, Asperger's and Childhood Disintegrative Disorder) from the Autism Spectrum. According to Fred Volkmar, MD, the researcher who worked on the data leading to this change, while some high functioning autistic individuals would be put under the umbrella of classic autism, more than 3/4 of high-functioning autistics would no longer be considered autistic, placing their access to social and school services in jeopardy."

From ipetition, now closed, but with over 10,000 signatures from psychology professionals and supported by dozens of psychology professional associations. The interesting point here, is that they are not just objecting to the "autism" controversy, they a r displeased with the entire process being employed to change the DSM4 to 5 as a whole. They object to the methodology employed and how closed is the committee process. That says something very important about what is happening with the DSM and it is not good. Here is the petition:

To the DSM-5 Task Force and the American Psychiatric Association:
As you are aware, the DSM is a central component of the research, education, and practice of most licensed psychologists in the United States. Psychologists are not only consumers and utilizers of the manual, but we are also producers of seminal research on DSM-defined disorder categories and their empirical correlates. Practicing psychologists in both private and public service utilize the DSM to conceptualize, communicate, and support their clinical work.
For these reasons, we believe that the development and revision of DSM diagnoses should include the contribution of psychologists, not only as select individuals on a committee, but as a professional community. We have therefore decided to offer the below response to DSM-5 development. This document was composed in recognition of, and with sensitivity to, the longstanding and congenial relationship between American psychologists and our psychiatrist colleagues.



Until next time,



Elise

Below please find a copy of the letter that Dr. Sarita Freedman has sent to the DSM5 committee. You may recall that I am a big fan of Dr. Freedman and her help and support for persons on the autism spectrum is well known. She has agreed to let me share it with my readers:


To Whom It May Concern:
I am a licensed psychologist in California, with a specialty in autism spectrum disorders.  I work with the “high functioning” population and am very concerned that this population of individuals will be excluded from much-needed services and supports as a result of the new criteria.  What continually confuses me is the bias (in society?) to only serve those whose disabilities are most evident.  I see this happening here in California with the blanket denial of services by many Regional Centers to individuals with a diagnosis of PDD-NOS or Asperger’s Disorder.  Are services not to be tied to the individual’s need, rather than their label?  While I realize that financial constraints play a role here and that monies have to be allocated to those in most need, it is precisely those individuals with the more “invisible” disabilities who can likely make an impact on society by becoming working, tax-paying citizens.  However, without receiving initial supports (i.e., job coaching, job training, social and interview skills, etc.), many of those individuals will undoubtedly become dependent on public-funded services, working at jobs that are way below their capability, being unable to live on their own, and subsequently having the potential to be homeless after their parents die, all because they won’t have the skills to thrive in the work place.  With the rate increases we’re seeing, I don’t think this is a risk society can take. 

I’m confident that you are taking the time to consider other options.  While the system isn’t perfect even today, at least some individuals with potential and need can have access to much-needed services.  It’s unfortunate that being tied to a label is what opens doors to services, but I think we’re a long way from the alternative just yet.  Thank you so much for your time, consideration, and the intense efforts you are making to improve our DSM.   


Sincerely,

Sarita Freedman, PhD
Licensed Psychologist
Adults & Children, Developmental Disabilities
Author, Developing College Skills in Students with Autism & Asperger’s Syndrome
26540 Agoura Road, Ste. 100
Calabasas, CA 91302
(818) 999-9330



1/24/12 UPDATE: HuffingtonPost has an article by Allen Frances, one of the purveyors of the DSM5 criteria. Read HERE if you think your stomach can handle it. Here is the comment I tried to leave:

This article is self-righteous and self-serving. The notion that somehow by changing the definition of autism you will stop the autism (over diagnosis) epidemic is hubris at its greatest and obnoxious at the least. You cannot change the fact that someone is autistic because you decide to change the definition.The idea that it is all about services and understanding and civil rights...well yes it is, too bad.

You cannot receive services for your child without a diagnosis of one of 13 categories under the iDEA. So many children do not fall into any of the categories but they definitely fall under autism and they without a doubt need alot of help. No teachers do not "teach" to the disability but to the issue, yet you need to have a legally defined issue to be even given support and services.

Community is a huge thing when you are all alone and trying to figure out your world. Those with autistic brains, no matter how functioning are different. They view the world differently and they act differently. It is important to know that you are not alone and that there is a community out there for you to turn to for help. As  a parent, I know what it is to be all alone, without community, raising autistic children. I know what it is to be all alone until everyone could figure out what was wrong. How dare these individuals think they can remove from us our support networks and our camaraderie and tell us we are mistaken as to who we are.

These services by the way do not end when the child finishes 12th grade either. An adult with an autism spectrum disorder may need support their entire lives no matter how high functioning they happen to be. Those that are not covered by this new DSM definition what about them? How will they get the necessary skills to be functional adults? How will they survive in a world that does not consider them disabled, or disabled enough? You can't be protected by the ADA if you are not considered disabled or disabled enough even if you cannot function in society. How will they learn life skills, social skills, job skills? What if they cannot hold a job but according to he world they do not have a disability, even though we know they do? What about disability benefits, medicaid that could have helped them but they no longer qualify? Invisible disabilities are terribly misunderstood in this nation and the world at large, now the DSM5 committee has just made it alot worse.

Those out there who think its all about money. You can rest assured that no matter how much you may get from state or fed authorities you  still go broke, face bankruptcy, and worry where the next dollar for the next doctor bill is coming from. We have OT, PT, speech, ABA, social skills, life skills, job skills, neurologists, pediatricians, psychiatrists, psychologists, nutritionists, endocrinologists this all before we get to the typical things a child should have in their growing years....like the odd piano lesson.. and as they grow into adults we even pay for paras on our own and the need for therapy doesn't stop becasue a child reaches 18 either. Add to all this the cost of medications, if you can get a medical plan. Even the copays can break the average family. Insurance companies don't really want to pay for this for everyone do they? Now with the new definition they wont have to for the majority of persons will they?

DO NOT forget that WE are also tax paying citizens, who follow the laws, the rules and many of us serve our nation in the armed forces. Our children, and we,  are as entitled to help and respect form society as anyone else.

What this committee has done is insulting to those of us living with autism either as an autistic individual or raising autistic children or quite frankly under both scenarios. WE know what autism happens to be. WE know how it affects our lives and the lives of our children. WE are the ones that should have been asked. WE are not lab rats and neither are our children.

How dare those on the DSM5 committee think they know what is better for us and who we happen to be. WE will define ourselves. WE will create our own future and WE will not be marginalized by those who chose to infantilize and minimize who we happen to be, nor will we allow these individuals to take away the civil rights we have fought for for so long for our children and ourselves.

@RaisingASDKids


Here is the one they let me leave:


Self-righteous and self-servi­ng. The notion that somehow by changing the definition of autism you will stop the autism (over diagnosis) epidemic is hubris at its greatest and obnoxious at the least. You cannot change the fact that someone is autistic because you decide to change the definition­.The idea that it is all about services,u­nderstandi­ng and civil rights... too bad.

Those out there who think its all about money. You can rest assured that no matter how much you may get from state or fed authoritie­s you still go broke, face bankruptcy­, and worry where the next dollar for the next doctor bill is coming from. We have OT, PT, speech, ABA, social skills, life skills, job skills, neurologis­ts, pediatrici­ans, psychiatri­sts, psychologi­sts, nutritioni­sts, endocrinol­ogists this all before we get to the typical things a child should have in their growing years.... the need for therapy doesn't stop because a child reaches 18 either. Add to all this the cost of medication­s, if you can get a medical plan. Even the copays can break the average family.

WE are also tax paying loyal citizens and many of us serve our nation in the armed forces. Our children, and we, are as entitled to help and respect from society as anyone else.

WE will define ourselves. WE will not be marginaliz­ed nor will we allow the DSM5 to take away the civil rights we have fought for for so long for our children and ourselves.

@RaisingAS­DKids