Joint ASAN-Autism Society Statement on DSM-5

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Dear Friends,

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.

Sincerely,
Ari Ne'eman
President of
Autistic Self Advocacy Network

Scott Badesch
President of
Autism Society

Okay, here we go again, another top down view. Yes, I do want to know what the Autism Society of America and the Autistic Self Advocacy Network are doing, and I'm glad they're doing something.

But I like more a tapestry of a lot of individuals doing things, more in the tradition of the Civil Rights Movement and the Gay Rights Movement, which had and have both large top-down organizations and smaller organizations.

Some of the best things are done by individuals who are supported locally. Rosa Parks was a member of her local Montgomery NAACP. And she also received support from local ministers, including the young ministers Martin Luther King, Jr., and Ralph Abernathy.

But things don't often work out this well. This is the exception! More of the statistical norm is that people don't want to bother or think the activist is too far ahead or think the activist is not perfect enough (or any other convenient excuse). Try and have your advocates lined up ahead of time if possible.

What services ? ? ? Maybe for kids, and thank goodness for that, maybe with Individualized Educational Plans (IEPs) and other things, things are better for kids today than when I was a kid in the 1970s and all I got was speech therapy, which was generally just awful. (they never told me how to say the word with the r-sound, the lady just said "again . . again . . again", it was just awful).

But services for adults on the spectrum? My United States is optimistic and can-do in many ways, but I know of very few services for adults.

And I'm not really sure I want "services." What I want is greater social inclusion. I want to expand the definition of what "normal" is. For example, I want more good middle-class jobs for everyone. I want norms to change so that human resource departments and others look for reasons to hire, rather than reasons not to hire, and not be so narrow in trying to find the 'perfect,' plain vanilla person, but instead be open to people who are different, in many ways, and who probably have a lot to contribute. The attitude that different is good, that diversity enriches us all.

And schools, instead of schools rewarding the single category of 'well-rounded student' and essentially punishing everyone else, why don't we broaden the definition of good student and change schools so that they help a broader range of students? Obviously, I think we should!

But we do have smaller organizations.
For example -
Asperger Adults of Greater Washington:
http://www.aagw.net/
Greater Chattanooga Aspies:
http://www.meetup.com/G-C-As/
Autastics (San Francisco):
http://www.autastics.org/

In addition, both the Autistic Self Advocacy Network and GRASP have local chapters, in many places in the USA.

Please feel free to join an organization/chapter in your own city, or start one yourself.

The following lists Dallas, Texas, and good for them.
http://www.autisticadvocacy.org/modules ... egoryid=15

But, the last time I checked---surprisingly---there was nothing for Houston, Texas.

Yes, we have some organizations for parents with kids on the spectrum, and good for them. But nothing for adults on the spectrum.

===========================

I've talked with someone via email. And it looks like we might indeed be in the early stages of a group forming in Houston.

Last edited by AardvarkGoodSwimmer on 31 Jan 2012, 6:16 pm, edited 1 time in total.

I am glad to see that ASAN-ASA has come out with a joint statement on this. So that makes GRASP, ASAN, and ASA. Good to know that these groups are serious enough about tackling this issue. It's apparent the APA isn't.

Scott/Greater Chattanooga Aspies

poopylungstuffing lives in Houston: http://www.wrongplanet.net/forums-profi ... -9829.html
She may want to help you form a group.

Good luck.

As far as I know, they made sure that people diagnosed with the DSM-IV-TR, no matter their label, meet the diagnosis in the DSM-V. They did their own tests, and they found out that it was reliable (their words). And, if you have a diagnosis from the DSM-IV-TR, you'll always have it unless there's some reason that you need to be reassessed, then they'll use the latest one.

Tony Attwood and his employees don't even use the DSM-IV-TR for Asperger's; does it mean the people they diagnose don't have AS because it's not the DSM-IV-TR?

Autism Speaks, ASAN, ASA, and GRASP don't speak for me. I support the DSM-V criteria for ASD.

Nice idea, but the letter seems to me to be far too generic in it's wording. Essentially saying, "We want you to make sure that everyone who should be diagnosed is."

The rest of it's just window dressing for that basic statement. There are no specifics offered. No suggestions as to what about DSM-V is good or bad, and why.

The whole letter looks to me to be no more than a vague gesture. Almost a PSA that's really directed toward Autistics themselves, not toward the psychiatric community. Are they worried about starting arguments and debates within the community?

I'm just not seeing that this letter really accomplishes anything other than getting the names of these organizations some exposure. I don't see anything in it that resembles "taking a stand" or position on anything that is any different than what they're positions have been all along.

What I'd like to see are clear statements. "We agree with the new criteria because..." or "There could be problems with it because..."

The fact that it doesn't say either of these things makes me wonder what they really think, because this letter sure doesn't tell me.

Who on earth WOULDN'T want everyone who needs a diagnosis, to get one? That's a given.

EDIT: Maybe it's just that everything that's said in the letter seems so obvious to me. Maybe it just that, to me, all they are doing is stating what any Autistic would wish, but not really how any of it could be accomplished by specific changes. Maybe that would create too much debate and division in the community? Maybe they're afraid of getting mixed up in it? Am I being too presumptuous in assuming that everything stated is what all Autistics would want?