APA responds regarding DSM5

Dear concerned respondent to the DSM-5 Autism proposal: 

Thank you for contacting the American Psychiatric Association with your thoughts about the diagnosis of Autism Spectrum Disorder (ASD) proposed for DSM-5.  We at APA have been and will continue to be advocates for a full range of services for people with autism and all other neurodevelopmental disorders. We understand the devastating impact that discontinuation of services can have on patients and families. We also recognize that services are determined not just by a diagnosis but also by the severity of symptoms and needs in areas such as education, social skills, activities of daily living, and maintaining personal safety. Even if an individual’s diagnosis changes, this does not invalidate the treatments and other services that have worked for him/her, and these services should be continued based on need. 

The new proposed criteria for ASD in the DSM are intended to improve the accuracy of diagnosing the disorders currently known as autistic disorder, Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified. The proposal is based on years of accumulated clinical, epidemiological, and neuroscience research which was thoroughly examined by the members of the DSM-5 work group on Neurodevelopmental Disorders. Most of the work group members are also clinicians who see patients with these disorders, and the proposal was developed with clinicians and their patients in mind. 

There are clinical and scientific reasons for improving the accuracy of diagnoses.  All patients should have an accurate diagnosis based on the most up-to-date clinical and scientific knowledge available. A more accurate diagnosis will help clinicians and other service providers target available treatments and rehabilitation methods for their patients.  In addition, it is important to note that patients whose symptoms no longer meet diagnostic criteria for the DSM-5 ASD diagnosis will very likely meet the criteria for one or more other diagnoses-for example, a communication disorder, for which interventions are available. From a scientific standpoint, more accurate diagnoses will also help guide research into the causes of the neurodevelopmental disorders and the development of new treatments. An informative article written by a work group member, Dr. Francesca Happé, on the changes to Asperger’s disorder can be found on the Simons Foundation Autism Research Initiative website:http://sfari.org/news-and-opinion/viewpoint/2011/why-fold-asperger-syndrome-into-autism-spectrum-disorder-in-the-dsm-5.

We are hopeful that continuing advances in research, diagnosis and treatment will help us devise better ways to treat autism and to reduce the devastating effect it has on individuals and families. We invite you to visit the DSM-5 Web site at www.dsm5.org where further information on ASD is available under the “Proposed Revisions” tab. This Web site will be revised and opened for public comment for a third a final time late this spring.  Once again, thank you for your input.

David Kupfer, M.D.
Chair, DSM-5 Task Force

Darrel Regier, M.D., M.P.H.
Vice-Chair, DSM-5 Task Force

I am so angry right now I could just scream.  I am sure I will be posting more in the next coming days but I wanted to make sure that this letter was distributed to everyone, even if they have not signed a petition yet.

This letter bothers me on so many levels.  First it is condescending.  Yes I can understand the need for appropriate diagnosis but the DSM is just a checklist that the psychiatrist tries to see which one best matches the person in front of them that they are only spending a short period of time with and maybe, hopefully they listen to the parents.

I don’t understand why Autism is even in the DSM, it should be a neurological diagnosis and taken out of the psychiatrist’s hands anyways.

Okay back on point for me.  They are clearly delusional if they think services are still going to be provided to people because they need them.  We can’t get services with a diagnosis! That is the “devastating effect” on autistics and families!  That and lack of understanding.

And it is really hard to get understanding if you don’t have a diagnosis or a list of diagnoses like we had for my son previously.

Sorry for the rant.  I will have to process this all and then either send emails or wait till comment period.

But please if you haven’t yet, please sign the petition.


  1. I wish they had Autism centres in every state like they have in NC. I wasn’t diagnosed by a psychiatrist. I was referred to a psychiatrist by my doctor who then referred me to a non-profit organisation that eventually did the evaluation.

    Anyway yeah the DSM is not a good diagnostic tool but that non-response was infuriating. I don’t have any words for that.

  2. Agree with you. I’m also a mother (with Aspergers) and a son with Aspergers. I was a school teacher, and am studying to be a counselor so I can work with families with children with Aspergers. Thanks for this informative post.

  3. This is infuriating. But I’m an optimist (I would not have survived childhood if I weren’t), and the more I think about it, the more I think: “Homosexual” used to be in the DSM. Now it’s just accepted that that is how some people are. A friend of mine is transgender, and he had to go to a psychiatrist for months to get “evaluated” and be told what he already knew. It’s not like we don’t know who we are, regardless of whether we have some psychiatrist’s stamp or not. I was “self”-diagnosed (by many others including unofficially by 2 different psychologists) for months (nearly a full year) before I found out that I had an official diagnosis. Autism is a way of thinking, a way of being. You either are Autistic or you aren’t. And as infuriating as it is that the DSM is likely going to take away a lot of people’s labels (and don’t get me wrong: labels are VERY helpful and reassuring and important). I don’t know what to think anymore. I want to think something positive here, and the only thing I can come up with, is that removal of the Asperger’s diagnosis (and in effect, its transition to simply an identity, as Asperger’s can’t be erased from our culture) might not be terrible for people who were like me – we know we fit the description. We feel comfortable in “Aspie” spaces. Does the AS community really have to be a bunch of people who could afford an evaluation, keeping those who don’t have the means or the school system or whatever at their disposal out?

    Yes, removing the official diagnosis is terrible in terms of services. But it might help a lot of people as well. I don’t know. It’s infuriating.

    It’s highly likely that I would qualify for diagnosis under the new criteria. I’m not sure I am going to bother, though, as accommodations don’t mean nearly as much to me since I’m a grown person, in a career that is notoriously accepting of “freaks and weirdos” (yay science academia) but does that mean I’m no longer on the spectrum? I think not. And that is the part that is infuriating to me. We know who we are. So they take away our official titles. But can they really take away our selves?

  4. So I just read the best response yet to this argument: Please go read it, I think you’ll appreciate how this blogger puts her thoughts into words. http://biologyfiles.fieldofscience.com/2012/02/writing-about-disability-no-science-no.html

    • That is Emily- she is the scientific editor over at The Thinking Person’s Guide to Autism She is super smart. Everyone on that blog is worth reading and all of the contributors have their own amazing blogs & they are all great on Twitter. I highly recommend checking out all of them. In fact Emily is the one who recommended the online school that I am using for my son (yay). She also read my post yesterday because she actually shared it on twitter (and I about fell out of my chair). Off to go read hers- I am sure it is very scientifically sound and well written. Thanks for sharing link here so others can go read as well. In fact I will probably add her link in my post.

  5. Really makes you wonder how many docs in the ivory tower have ever sat in an IEP meeting fighting for own their child’s services, getting a placement in autism support or getting a case manager who has expertise in autism. I get that diagnosis should not matter, but the reality is that it often does matter very much when you are advocating for services both in school and in healthcare.

    The words “out of touch” come to mind.

  6. I have struggled for years with my son who is now 18 anyone who has not walked the walk has no business being involved in changing criteria! Research all you want look at whatever studies you want! UNTIL U LIVE IT YOU HAVE NO IDEA WHAT LIFE IS LIKE NONE! I am so angered at all this

  7. The worst thing about this to me, is the fact that they seemed to think that we were completely ignorant of exactly what they were trying to do.
    In all seriousness, I knew that they wanted to make a diagnosis a more accurate for ASD. However the difference between High functioning Autism and Asperger’s Syndrome can’t be denied.
    The writers of the letter seemed completely ignorant of what they were writing about; if you ask me.

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