Monday, 10 December 2012

Revised Diagnostic Criteria for Autism Approved for DSM-V

The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) will have the revised diagnostic criteria for autism that's had advocates concerned for most of 2012. The new guidelines call for autistic disorder, Asperger's syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified to be all folded under the diagnosis of "autistic spectrum disorder".

I've blogged already on how there's mixed reaction to this move. I'm still not sure what to think, myself.

A Good Reason Behind the Revised Diagnostic Criteria for Autism?

The last time the DSM was revised to any substantial degree was 1994 (a couple of years before I started my psychology degree and learned about the DSM myself, for what it's worth). We were taught in my classes that it's the Bible for psychologists. The APA (American Psychiatric Association) doesn't just decide to review it on a whim, and to change it - well, I'm certain that the team of experts in charge of looking into the revised diagnostic criteria for autism was involved in a staggering amount of research, consultation, and discussion about what changes needed to be made and any potential implications. There was even a call for public input in the summer. The revised diagnostic criteria for autism will appear in the DSM-V because a group of very knowledgable people absolutely believed that it needed to be there.

There are major concerns about the revised diagnostic criteria to autism. One of the major concerns is that the new criteria will alter the way that people are diagnosed substantially enough that some autistic people may actually lose their diagnosis, and therefore eligibility for support services. I discuss this concern, and others, at length in these other posts about the revised diagnostic criteria for autism:

Also, about the revised diagnostic criteria and name change for "mental retardation" diagnosis:

Revised Diagnostic Criteria for Autism: Implications for the Autism Acceptance Movement

But I know more about the autism acceptance movement than I did when I blogged about this before, and I have new questions now.  I want to know how that movement feels about forms of autism that sometimes manifest very differently now being all referred to as one thing.

I think it's appropriate to use nationality as a way to discuss my thoughts on this. I'm Canadian. I talk about being Canadian. I describe myself as "Canadian". However, also being born in the East Coast province of Newfoundland, I also sometimes refer to myself as "Newfoundlander" (not "Newfie", for the record. I can't think of very many Newfoundlanders who actually like the term "Newfie"). Newfoundland's culture is very different from the rest of the country's, for a number of reasons. If I'd stayed in Newfoundland and been raised there, my experience of being Canadian would be very different than that of a Canadian born and raised in, say, Ontario. To have someone suddenly say to me, "You can't refer to yourself as "Newfoundlander" anymore.  You must now think of yourself as just Canadian" would feel to me like someone was trying to take a part of my identity away.

Do autistic people feel the same way about the new umbrella diagnosis for autism? From my experience of working with autistic people, I'd say (and someone please correct me if I'm wrong) that the experience of someone with, say, Asperger's Syndrome is likely to be much different than the experience of someone with PDD.  Are the distinctions between different types of autism that important to people who consider autism an important part of their identity? Or is "autistic" enough?

I'm asking these questions because I honestly don't know. Perhaps you could share your opinions, readers?

It will be interesting to see how all of this plays out when the DSM-V is published in Spring 2013.

More about the revised diagnostic criteria for autism in the DSM-V:


  1. A very long comment, sorry.

    I'm autistic, I like that everything will be Autism, most people on the spectrum I know already use autism for themselves and refuse to use Asperger. I think the criteria is terrible but the DSM has always been a source of ableism, prejudice and superficial judgements.
    There is no real difference between Asperger, PDD-NOS and Autism, there is a spectrum of differences between the ways autism can present itself but that's not related to the diagnosis name, you can have someone with Asperger similar to someone with an Autism diagnosis and you can have two very different ways Asperger can appear, or many different ways Autism can appear. The differences in diagnosis are more damaging than helpful because depending on diagnosis you can lack the support you need or be treated as less capable, many people received all types of Autistic Spectrum diagnosis in their life or received different diagnosis in different cities or with different professionals, most times the differences were based on which services are available depending on the diagnosis, a person received different diagnosis to get the best support or the differences were based on prejudices and stereotypes, for example if you are an adult or sometimes can speak or just look different than the classic image of an autistic child you get an Asperger diagnosis. I don't fit a criteria for Asperger very well and would be better with an PDD-NOS or Autism diagnosis but because I'm perceived as a woman and an adult I got Asperger, when I was younger I behaved in more classical autistic ways but as a girl I was misdiagnosed, today people think adults can only have Asperger, they think Autism is too obvious and never verbal. Many times professionals refused to say Autism because of the stigma, they don't want to scare the parents or person with something they see as a hopeless tragedy, it's common to get a less stigmatizing but false diagnosis.

    Asperger is really failed because of the false image of not being a real disability, people just think of geeks with no social skill, with Autism you can have the image of a real disability and maybe take in consideration other things like the sensory differences that are a major part of all the spectrum. I have an terrible reaction to the Asperger diagnosis because of the invalidation it carries even for professionals, I and others struggle so much with this disability to have people telling we are not really disabled and are really smart people with maybe a social disability, few think of severe sensory problems, inertia, executive dysfuction, challenges with communication and spoken language or non-verbal times when thinking about Asperger. They say we are lucky, we only have Asperger, it's not like real Autism, we are "aspies" like saying we are geeks, if a professional can think that what can we expect from the general population or the people that give services to us?
    My internal experiences match the experiences of other autistic people all over the spectrum that look and are seen different from me, I have much in comon with completely non-speaking autistic people, I sometimes can't speak and other times I'm hyperverbal but the internal process is similar, different diagnosis, different abilities, different ways we are seen but for us is the same, so why call it different things?

    There is no real difference between diagnosis, everything has always been Autism, it's an spectrum so there are many ways Autism can appear, it will still be just Autism. Using one name shows more of the diversity of the spectrum and shows more respect towards those that never got an Asperger diagnosis, I hope this helps killing "aspie elitism" of people with Asperger that refuse being called autistic and disabled because they think they are better than the rest of us and people that think Asperger is better.

  2. To add a further dimension to the dialogue: DSM-5 is a guide not a Bible...10 things to ignore:

  3. I liked some of the things written, disagree about Autism, is currently misdiagnosed and extremely underdiagnosed, especially in minority populations, autism is not overdiagnosed, is difficult to get a diagnosis, not easy.
    Unfortunely the DSM is the main influential guide of psychiatry, I don't like it but it changes the lives of all in the mental health/mental disorders community.

  4. Thank you so much for this. Truly. I really appreciate the time and thought that you put into this comment. I feel like I understand some things much better now, and apologize if I offended with any assumptions that I made in my post.

  5. Yes, I'm much more aware now of the DSM's weaknesses than I was when I was an undergraduate. I didn't get a whole lot out of my university experience, but by God I did learn to think critically...even about the things that the profs said I should just accept ;-)

  6. And I think that's what scares me most about it - is that it is so influential. Whether or not you fit the diagnosis determines whether you'll get treatment, support, services...someone's DSM diagnosis not only changes their life, but potentially the life of everyone who loves them.