Joint ASAN-Autism Society Statement on DSM 5

31 Jan

Below is a joint statement by the Autistic Self Advocacy Network and the Autism Society of America on the DSM-5.

Dear Friend,

As two national organizations committed to working to empower the autism and Autistic communities today and into the future, the Autism Society of America and the Autistic Self Advocacy Network issue the following joint statement regarding the definition of Autism Spectrum Disorder within the DSM-5:

The autism spectrum is broad and diverse, including individuals with a wide range of functional needs, strengths and challenges. The DSM-5’s criteria for the new, unified autism spectrum disorder diagnosis must be able to reflect that diversity and range of experience.

Over the course of the last 60 years, the definition of autism has evolved and expanded to reflect growing scientific and societal understanding of the condition. That expansion has resulted in improved societal understanding of the experiences of individuals on the autism spectrum and their family members. It has also led to the development of innovative service-provision, treatment and support strategies whose continued existence is imperative to improving the life experiences of individuals and families. As the DSM-5’s final release approaches and the autism and Autistic communities prepare for a unified diagnosis of ASD encompassing the broad range of different autism experiences, it is important for us to keep a few basic priorities in mind.

One of the key principles of the medical profession has always been, “First, do no harm.” As such, it is essential that the DSM-5’s criteria are structured in such a way as to ensure that those who have or would have qualified for a diagnosis under the DSM-IV maintain access to an ASD diagnosis. Contrary to assertions that ASD is over diagnosed, evidence suggests that the opposite is the case – namely, that racial and ethnic minorities, women and girls, adults and individuals from rural and low-income communities face challenges in accessing diagnosis, even where they clearly fit criteria under the DSM-IV. Furthermore, additional effort is needed to ensure that the criteria for ASD in the DSM-5 are culturally competent and accessible to under-represented groups. Addressing the needs of marginalized communities has been a consistent problem with the DSM-IV.

Individuals receive a diagnosis for a wide variety of reasons. Evidence from research and practice supports the idea that enhancing access to diagnosis can result in substantial improvements in quality of life and more competent forms of service-provision and mental health treatment. This is particularly true for individuals receiving diagnosis later in life, who may have managed to discover coping strategies and other adaptive mechanisms which serve to mask traits of ASD prior to a diagnosis. Frequently, individuals who are diagnosed in adolescence or adulthood report that receiving a diagnosis results in improvements in the provision of existing services and mental health treatment, a conceptual framework that helps explain past experiences, greater self-understanding and informal support as well as an awareness of additional, previously unknown service options.

Some have criticized the idea of maintaining the existing, broad autism spectrum, stating that doing so takes limited resources away from those most in need. We contend that this is a misleading argument – no publicly funded resource is accessible to autistic adults and children solely on the basis of a diagnosis. Furthermore, while the fact that an individual has a diagnosis of autism spectrum disorder does not in and of itself provide access to any type of service-provision or funding, a diagnosis can be a useful contributing factor in assisting those who meet other functional eligibility criteria in accessing necessary supports, reasonable accommodations and legal protections. As such, we encourage the DSM-5 Neurodevelopmental Disorders Working Group to interpret the definition of autism spectrum disorder broadly, so as to ensure that all of those who can benefit from an ASD diagnosis have the ability to do so.

The Autism Society and Autistic Self Advocacy Network encourage other organizations and groups to join with us in forming a national coalition aimed at working on issues related to definition of the autism spectrum within the DSM-5. Community engagement and representation within the DSM-5 process itself is a critical component of ensuring accurate, scientific and research-validated diagnostic criteria. Furthermore, our community must work both before and after the finalization of the DSM-5 to conduct effective outreach and training on how to appropriately identify and diagnose all those on the autism spectrum, regardless of age, background or status in other under-represented groups.

Ari Ne’eman
President of
Autistic Self Advocacy Network

Scott Badesch
President of
Autism Society

9 Responses to “Joint ASAN-Autism Society Statement on DSM 5”

  1. RAJ February 1, 2012 at 17:56 #

    Here is a case published in the NY Times that represents what it means to have a fashionable diagnosis of ‘Asperhger Syndrome’. .

    Congratulations to the framers of DSM5 for relegating the meaningless label of ‘Asperger Syndropme’ to the junk pile it belongs to.

    Now researchers can begin to conduct relevant researech into uncovering the causes, prevention and treatement of a profoundly handicapping disorder.

  2. Sullivan February 1, 2012 at 18:39 #

    Well that’s definitive. I mean, everyone so far has said that absolutely no one has been misdiagnosed. One example pretty much throws that whole argument down the well. Thanks for that, RAJ.

    (end of sarcasm)

    How about actually addressing the real issues now?

  3. Savannah Logsdon-Breakstone February 2, 2012 at 03:38 #

    FYI, it’s also available en espanol, which you might want to link to:

  4. RAJ February 2, 2012 at 14:55 #

    You are remarkeable in your unquestioning ability to accept the current dogma of psychiatry. What are you going to do when DSM5 is published and Asperger Syndrome is removed from DSM and when the intended effect of DSM5 produces a sharp decline in autism prevelance rates.

    • Sullivan February 2, 2012 at 18:12 #

      You are remarkeable in your unquestioning ability to accept the current dogma of psychiatry. What are you going to do when DSM5 is published and Asperger Syndrome is removed from DSM and when the intended effect of DSM5 produces a sharp decline in autism prevelance rates.


      you seem to be implying that if people who don’t accept the change in the DSM are unreasonable. This you make with apparently no self awareness nor sense of irony (as you are someone who has not accepted the DSM IV).

      That said, I have to ask, with all seriousness, do you not understand my clearly posed position? I purposely didn’t go into detail in this thread to see your response, but I’ve stated it before. I want to see an accurate DSM. I don’t care if they use the term “Asperger”. I don’t care if the prevalence goes up or down afterwards. I want the DSM to accurately identify autistics.

      I don’t think that a slide or two by Prof. Volkmar and a couple of comments quoted by the NY Times constitutes enough evidence to change the DSM one way or another. I made that point clear earlier as well.

      I saw the other article (op ed piece) yesterday. I decided not to write about it even though it is again poorly supported opinion. For example, “Curiously, in California, where children with P.D.D.-N.O.S. were not given enhanced services, autism-spectrum diagnoses did not increase.” I don’t know what California he is writing about, but it is not the state I live in.

      You asked what I would do if the prevalence changes after the DSM 5. Let’s see, I’ll probably write about hit here on this blog. Does that come as a surprise to you? How I write about it will depend on how well the changes are defended. If the people working on the DSM committee have a little depth to their arguments as you do, I will likely disagree with them. It will be based on the evidence, not the outcome. That appears to be a difference between us.

  5. RAJ February 2, 2012 at 15:08 #

    And here is another reason why DSM5 is heading, as it should, towards removing ‘Asperger Syndrome’ from DSM5

  6. Science Mom February 2, 2012 at 16:37 #

    And here is another reason why DSM5 is heading, as it should, towards removing ‘Asperger Syndrome’ from DSM5

    What will those with PDD-NOS and Asperger’s do for services once they are removed from the DSM-V RAJ? I can only speak for myself but I don’t think the objection is removing it from the umbrella of ASD but rather ditching it entirely because that will leave a lot of children and adults without services and investigations into therapies that will assist them.

  7. Ictus75 February 2, 2012 at 17:34 #

    You can take away the diagnosis for Aspergers and then call it what you want, or call it nothing at all, but it doesn’t change a thing for all of us currently diagnosed with it. We’ll still be here. We’ll still be the same people. The symptoms won’t just magically go away.

    Sorry RAJ, you’ve got it all wrong.


  1. Autism Blog – Joint ASAN-Autism Society Statement on DSM 5 « Left … | My Autism Site | All About Autism - February 1, 2012

    […] Read the original post: Autism Blog – Joint ASAN-Autism Society Statement on DSM 5 « Left … […]

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