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:
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 authoritie
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 marginaliz
@RaisingAS
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
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 authoritie
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 marginaliz
@RaisingAS
My husband is a therapist. His take on what he knows about the new guidlines is that it allows providers to zero in on a child's issues-- narrow down the spectrum a bit to help better treat people. Clinically, it makes it easier for medical professionals to recognize.
ReplyDeleteThe new diagnoses for high functioning kids that will no longer fit into the autism category does not mean they will be dropped off a cliff. The effected population will most likely be parents who are not plugged into their child's treatment. Those of us who know the system and how to advocate for our children will be okay. Even though the autism dx may not apply doesn't mean an elimination of help.
Of course we know that parents will get muddled by semantics of insurance companies and schools who often play politics so they don't have to fork over money. I think that's the underlying issue-- not that the criterion for an autism diagnosis has been changed, but that those changes will be used for evil.
When you get to a stable place, worked to get the stars and heavens aligned feeling like it may come crashing down is a scary thought. Parents work HARD to get services... seeing go up in a puff of printing press smoke... wow. Nightmare city. Starting from square one after practically finishing the whole circuit is pretty much my own personal hell.
It doesn't help anyone that the professionals commenting on in news articles are mostly dolts who say insensitive or bizarre things. It also doesn't help that no one seems to be explaining this clearly. Nor does it help that the studies already conflict. It's almost like the DSM V people want mass panic. I suppose that's good for sales.
Thank you! I agree with you wholeheartedly!! The description or umbrella, so to speak, is WAY too large. I think narrowing it would help hone in on helping those affected.
DeleteCarrie-i think you hit the nail right on the head. We are not invested in the dx except it is the only way to get our children the help they need. Hubby and i talked about it last night and we realized that under the new criteria our children, who their psychiatrist tells me without a shadow of a doubt are autistic, would not qualify. What that means too is no college, SAT, graduate school accommodations, or the ability to not be discriminated against under the ADA or receive adult services. Their issues have not disappeared because the DSM changes just their ability to get any services even as adults.
ReplyDeleteBTW thank you so much or your comment.
The proposed DSM5 changes are listed here for Asperbergers:
ReplyDeletehttp://www.dsm5.org/proposedrevision/pages/proposedrevision.aspx?rid=94#
This is an interesting article regrding the merger/separation of autism and Aspergers in the DSM5:
http://www.child-psych.org/2010/02/autism-and-aspergers-in-the-dsm-v-going-beyond-the-politics.html
Not digging the proposed language at all. There's enough data out there for the DSM5 Committees to get it together and do it right.
Ms. Rikke Elkins, Millsboro, DE
Rikke- thanks for the links. I definitely agree with you that they need to get their act together.
ReplyDeleteThis http://www.ipetitions.com/petition/dsm5/ is an open petition to the APA, written by and supported by a large group of therapists and other professionals about why they think DSM5 is going be harmful because of the ways some of the definitions are changing. I don't believe they mention autism, Aspergers or PDD-NOS anywhere in the petition, but it is interesting to read. ADHD is mentioned as one of the main things most of those particular therapists are discontent with.
ReplyDeleteAnyway, I like your "don't panic" message in this blog post. I am an adult, 46 years old, diagnosed with Aspergers Syndrome by two different therapists. I have been very familiar with the DSM5 changes to the diagnostic criteria for a long time. I support changes that will eliminate the divided spectrum for several reasons, but would hate to see lots of kids become ineligible for programs. You might find this article interesting as well: http://nyp.org/news/hospital/lord-autism-spectrum-disorders.html All of the diagnoses referred to in it were done under DSM IV-TR.
Being familiar with the new criteria, I have read through all of it many times and I do believe that I would still be diagnosed on the spectrum under DSM5 criteria. I don't know about others. All autistics are different of course.
Aspie kid- thanks for the info. I will definitely take a look.
ReplyDeleteThank you for the wonderful post Elise and I am glad that I came back to re-read with the comments as suggested on twitter. I agree with Carrie & you, it isn't so much about losing the diagnosis is it is about losing services and accommodations. Even if my son keeps his diagnosis what about other kids similar to him that may not get the help that they need. Also as i pointed out on Twitter the diagnosis helps him (and me) to understand better what is going on and to know we are not alone.
ReplyDeleteI was actually okay with it all being under one label and have been using autistic interchangeably for a while because agreed the line between Aspergers and autism sometimes muddled anyways. That is thing (at least in my opinion) with my son, in one moment he could be considered severely autistic, another moment aspergers and another moment he can pass as NT.
Anyways I know what caused me to panic was the call to action from GRASP and the NYT article. Here is my blog post with the call to actions and the links to the articles are included from GRASP.
http://aspieside.com/2012/01/19/please-read-dsm-v-committee-protest/
Aspieside- I was actually ok with it all being under one label too. In fact I wrote a past post about it. I thought that once aspergers and pdd were "officially" called autism, the children who had been denied services because some evil administrator somewhere decided that these dxes were not autism would no longer have any room to move. I thought it would actually be a boon to the autism community. Who knew that there were such egocentric individuals who have decided to run the autism community, those who actually do not have autism either, and have decided to eliminate our children from the record books.
ReplyDeleteI have one thought too...a little conspiratorial but a thought nonetheless...it seems that this push to reexamine the autism dx came at the same time that insurance companies were being forced to pay for autism-related therapies. It also seems that with the new dx the insurance companies, as well as state and local communities will be saving alot of money. I wonder just how much behind the scene lobbying took place by certain financial incentivized individuals for this rather exclusionary definition of autism.
One more point too...the Dr. in charge of the new definition, cavalierly said that he is nipping the autism epidemic in the bud...apart from the fact that that is perhaps one of the most ignorant things I have heard lately...it shows a complete misunderstanding of reality. Autism is not going to go away simply because some individual fro Yale changes the definition. Our children and even ourselves, will be out there.We are still part of society and we wills till need the support we have always needed. You can no more define us away, anymore than the Nazis tried to murder us away.
Hi Elise,
ReplyDeleteIt is a horrific thought that my daughter could lose her dx of Aspergers and have the services we get disappear. It is hard enough for her now with the help, she will be changing to a middle school in the fall and that is going to be enough to try to deal with. I really hope this doesn't affect our kids like this. When my daughter is standing there screaming with her hands over her ears I would like anyone to try to tell me that she doesn't in fact belong in the umbrella of autism. Just because she seems to be NT some of the time doesn't mean she is any less deserving of the help she desperately needs to live her life.
Bakingmommy
Kim-that is the part that terrifies everyone. I don't think its so much the dx as it is the only way tot get services. Dennise Goldberg over at Special Ed Advice, has some articles up about how to retain services if it comes to that and you might want to take a look. My concern is later on in life too. If they are not considered disabled then they can't access the ADA in college, the SATS, graduate school professional licensing exams, adult services of anykind and are not protected in society as a whole.
ReplyDeleteGreat post. I would also encourage everyone to read through the entire "Neurodevelopmental" section to see how this area has grown since DSM-IV.
ReplyDeleteElise, I also believe that if a child needs an IEP and services, they are entitled to this under IDEA. The school district may fight it, but the law is the law. Don't be afraid to use a mediator from your state's Dept of Education.
Peace, Love, and happy DSM-V reading!
M
MKosmicki- hi. Unfortunately to get an IEP the child has to quality under one fo the 13 listed categories. While there is always the speech/language or OHI, it is not always easy to get. While one of my favorite special educators once said that the category is for legal purposes, they work with the issue and the category doesn't matter...I submit that in some cases it may not be easy to find a category.Of course Dennise Goldberg over at SpecialEd Advice, does disagree with me. I would hop over to her site and read her recent articles on the subject. Her site is listed on my Helpful Websites Page.
ReplyDeleteMeanwhile there is another issue, one I am writing about now and that is post 12th grade. Life does not end at 12th grade and disabilities don't either. But if you have no dx and do not qualify for another you will not get adult services, medicaid, social security, accommodations in post-secondary education and you are not protected by the ADA.It was hard enough to get support for the boys as adults, can you imagine if there was no dx that they fit into?