The American Psychiatric Association voted this weekend to remove the diagnosis of Asperger’s syndrome from the so-called bible of psychiatry, the Diagnostic and Statistical Manual of Psychiatric Disorders. People with Asperger’s will now more likely be diagnosed as having autism spectrum disorder. The APA says the change will lead to more accurate diagnoses for people with autism — but critics say removing the diagnosis may result in fewer people getting the services and care they need.

Show Highlights

On The Two Main Issues With Removing the Asperger's Diagnosis:

There's identity politics and concerns about stigma on one hand, and concerns about people who might lose that diagnosis on the autism spectrum altogether and possibly lose services. And as far as stigma, I think that there are some groups and individuals who may think that there's something superior about either the Asperger's diagnosis or people who are diagnosed with it and create some separatism.

-Steven Kapp

On Why Some People Don't Care About the Change:

A lot of people who have Asperger's self-identify as autistic, period. So from that perspective, they don't really see a problem with sort of making this an umbrella situation.

-Emily Willingham

On Not Wanting to Give Up the Asperger's Diagnosis

A lot of people saw some logic to making the change, [but] some people really were reluctant to give up the word "Asperger's" in their life, they really sort of absorbed it into a lot of their identity.

-Michael John Carley

On Asperger's Being an Invalid Diagnosis:

The autism spectrum can be diagnosed pretty accurately when taken as a whole, but Asperger's — there's no validity to trying to cut up the autism spectrum, to creating sub-types or sub-diagnoses, despite so many different studies and efforts by scientists. So Asperger's is an invalid diagnosis, both in its design and practice. Many people get diagnosed with it who meet criteria for Autistic Disorder, and which diagnosis people get within the autism spectrum has a lot to do with unscientific factors like which clinic they go to, or where they live, or many other very problematic things. In California and many other states, people are denied services because they have an Asperger's, rather than Autistic Disorder Diagnosis, not for their individual needs.

-Steven Kapp

On Why People Are Attached to Separate Diagnoses:

We're human beings. We really like to compartmentalize. We have a really hard time swallowing the idea that all these famous people being diagnosed in retrospect, like Albert Einstein, Beethoven, Emily Dickinson, could possibly have just shades of the same condition as somebody who might not talk and lives in a home somewhere.

-Michael John Carley

How the Change Could Help Remove the Stigma of Autism

A lot of us forget, I think, that the word "Asperger's" had really negative stigma around 12 years ago when my son and I were diagnosed. Because we've changed as a society, and not because the condition changed, there's a lot more positive that's summoned when you immediately think of that word in your head than you would have 12 years ago. And I think that if everybody is diagnosed with autism, that actually that's something that's going to happen for the word autism later on in life as well.

-Michael John Carley

On How the Change Puts More Pressure on Clinicians

It does put more pressure on clinical interpretation to do a very thorough and comprehensive job because now there's little room for error because they're proposing that all three of three social communication sub-domains must be met, changed from two of four; so these are broad principles, and there's a non-exhaustive list of examples that clinicians could come up with. So it's up to the clinician to be responsible to determine, based on someone's age or gender or various circumstances that they have to think about, how the different criteria apply to the person.

-Steven Kapp

On How the Diagnostic Requirements Need to Be Improved:

I think there is more that can be done to try to help with understanding what are different manifestations across the lifespan and other variations to try to improve diagnostic practice itself.

For example, I think that if you require clinical observation as well as a report, and criteria to be met from either?it's acknowledged that if someone just goes into a pediatrician's office or whatever, a doctor's office for a fifteen minute visit, or a generalist does a quick checklist or something and they don't really consider how people's behaviors may differ in various contexts, and how people over time may develop compensatory strategies.

-Steven Kapp

On Practitioners Overlooking When Patients Met Criteria for Autism

Actually, the descriptions of people who have Asperger's Syndrome, the symptoms that they describe, are very well characterized in the new Diagnostic and Statistical Manual of Mental Disorders (DSM) Five. But there are a couple of things that were happening that we thought really made disadvantages for people with Asperger's:

First of all, people were misusing the diagnosis in DSM Four, it said that if you use the Asperger's diagnosis, it meant that you did not meet criteria for Autistic Disorder. However, in reality, a huge percentage of people who were receiving Asperger's diagnosis in fact did meet [the criteria for] Autistic Disorder, and clinicians were ignoring that because they had this idea that Autistic Disorder did not include people who are high-functioning. So it kind of skewed our whole knowledge of what autism is. We stopped recognizing that autism disorder represents an entire spectrum of people, the majority of whom have good language and good cognitive skills. That was lost because of the way clinicians were misdiagnosing children.

-Sally Rogers

Emily Willingham, freelance science writer and editor, parent of an autistic son who was diagnosed with Asperger's
Michael John Carley, executive director, The Global and Regional Asperger Syndrome Partnership (GRASP)
Steven Kapp, PhD student in developmental psychology at UCLA and a member of the Autistic Self Advocacy Network
Sally Rogers, professor of psychiatry and behavioral sciences at UC Davis MIND Institute

  • Beth Grant DeRoos

    When I was around eight my parents who were in academia were told I was ‘oddly gifted’ but a disaster when it came to social skills. Then a few years later a specialist said he felt I had autistic characteristics. Like Dr Temple Grandin I was blessed with parents who worked with me, and now I find being an aspie is more of a gift than a negative.

    The new ‘Autism spectrum disorder’ term doesn’t bother me as long as the word SPECTRUM is noted and explained. It’s like a rainbow that has many colours, and aspies are one of the colours. Spend time in Silicon Valley if you want to see lots of successful aspies.

    • rootvg

      No kidding. And, that’s where I work.

      I went through hell in HS but I wouldn’t give up what I have for anything. There’s SO much power at the end of my fingertips. It’s basically black magic.

  • Kathy Briccetti

    I’m a school psychologist and the mother of a teenaged son who has Asperger’s Syndrome (AS). I have ambivalent feelings about the removal of AS from the DSM-V. As a mother, I’m somewhat protective of the label because it’s now part of my son’s identity and he has become proud (and a bit snobbish!) about having AS. (He has some good arguments about the superiority of being neuro-atypical.)

    I’m less worried as an special educational professional, because we have already been providing services to children with AS and will continue to under the category of “Autism.” However California Ed Code has been woefully behind in its definition for this category; it relies on the old description of autism and does not yet encompass the wide spectrum of children who may need school-based services.

    (I’m a bit worried about how insurance companies might use the new category to deny services. We need to make sure our representatives stay on top of that. )

    I guess it’s all about change and flexibility, which is a challenge both for people on the autism spectrum and for neurotypicals. Because of our increased knowledge and awareness, though, I’m optimistic.

    • dou

      I agree – I am just like your son, though I am 68 yrs old and did not learn about AS until I was well over 50. It explained a lot about my life. I had always thought everyone else was just like me, and was often shocked to discover that they were not. This knowledge has been very helpful in my interactions with neurotypicals. Now, I can hold back when I’m about to say something inappropriate. But is it a “disorder?” Does it require “services?” Maybe for some folks, but not for me.

      • Kathy Briccetti

        I appreciate learning things like this–mostly because it helps me understand that my son will do just fine in life. You point out a classic difficulty with perspective taking (theory of mind), which my son used to struggle with, too. Now, when he disagrees with me about something, he says, “Just try to see my perspective!” And I usually say, “Well, please try to see mine!” Isn’t that really at the heart of all arguments–neurotypical or not?

        • dou

          This is great! Like a trip in a time machine. When I was younger, before discovering there was a name for what I was, I was NOT comfortable with myself – I had a lot of shall we way unfavorable interactions. I still reflect on those and wish there were some way I could go back and iron them all out. That’s not possible – there is no acid that dissolves such memories. But now I know how to slow myself down when I feel I might be about to do or say something we’d all regret. Life going forward is not such a minefield anymore.

          Also, maybe it’s not totally true about being unable to soften bad memories. I can tell you that I have really enjoyed my high school reunions. I went to 2 high schools, and the first time I tried to go to a reunion (25 years) I had some serious trepidations. But I should not have worried. At the reunions everyone is always friendly. It is very comforting to know that things I perceived as catastrophes when young have been completely forgotten by the other kids. I feel like I am just getting started with some of those people.

  • NHarrison

    I’ve also worked as a special education provider and it continually worries me that schools are seen as the (mainly) sole provider of services for children on the asperger’s side of the spectrum. Autism and spectrum disorders need to be reclassified as neurological disorders, which they are, so that insurance companies will FINALLY provide support, along with school districts. To think that schools can carry this burden alone, and do a thorough job, is ridiculous.

  • I think the decision to vote with the science rather than the society was correct. Some of the biggest problems with the DSM historically came from the unscientific medicalization of social taboos (e. g. homosexuality). That being said, the rights and social standing of individuals whose diagnoses have changed must be protected and I’m crossing my fingers that they’ll be helped rather than hurt.

  • dou

    I like myself pretty much the way I am, and don’t regard Asperger’s at my level as a disorder. If there were a cure, I would refuse it. “Services,” though – that’s interesting. If they were pleasurable, I might submit to services.

    • Kathy Briccetti

      Ha! That made me chuckle. I also have difficulty with the label “disorder;” however so many of the students I see are truly suffering (and seem rather dis-ordered), so I’m less concerned about the name and more about alleviating their distress (usually socially and emotionally). .

  • Matt Carey

    First, thank you for having autistic representation on this program.

    Second, it is important to note that there is a lot of concern from all groups within the autism communities about the DSM 5. For example, PDD-NOS will no longer be a separate diagnosis. One can find concern that the DSM 5 will exclude those with autistic disorder, those with autism and intellectual disability, those with PDD-NOS and those with Asperger syndrome.

    Rett Syndrome (another category) is no longer a part of autism. I believe childhood disintigrative disorder remains.

    At the same time, government services and insurance are often tied to “autism”. California law specifically calls out “autism” as a qualifying category. These laws were not updated when the DSM IV was created, allowing people to exclude those with PDD-NOS and Asperger syndrome by a strict reading of the words, not the intent.

  • My child is a high functioning autistic child who does not have asperger’s. I would love to call in but I can’t locate the number :/

  • I am 61 and i was diagnosed at 58, but only after I came to the revalation that the quirks in my life and difficulties in school with particular learning problems. I was diagnosed by my psychiatrist, who confirmed that I have Asperger’s.

    It answered so much about my life and relieved my guilt for those things that people have always said, “he just isn’t applying himself”.

    1. The stigma is so great that almost no adults are diagnosed that are over thirty or forty.
    2. There is no EPIDEMIC, the 1 in 155 born with Autism or Asperger’s has been steady, and is only perceived that due to the changes in diagnosis.
    3. Where do we go? My psychiatrist said, “well you just grow out of it”. I blew up, this is an incredible burden to “morph” to pretend or attempt to be “normal”.

    I’m done morphing and see much more clearly what my differences are with other people.

    My psychiatrist has only two older people with the diagnosis, and we are both self diagnosis.

    I tell people I don’t drool or tap my feet, Well i don’t drool…

    • Lisa DeSherlia

      I must say that I view you and any other adults that have been able to access a diagnosis, with a tinge of jealousy. I’m still searching and feeling and living much like you say you did before your diagnosis. I’m glad that you now know the validation and peace of having a dx. I have an appt with an autism specialist out of my area but I must wait until the end of October 2013 and I do not have relaiable transportation. Next year should be very interesting.

      • Virginia

        I hope you can get a diagnosis. I feel I am in a really interesting situation as well being a young adult (20 years old) trying to pursue getting a diagnosis on my own. I also ride the city bus a lot so emphasize with your problems with transportation. I am feeling more and more of need to get a diagnosis as time goes on and I am seeing a good time as my college has a break for the winter. (Hopefully I can get one in that time, is it really difficult to get an appointment?) Best of luck to you.

  • Matt Carey

    Thank you again for having autistic representation on this program.

  • Ken

    The DSM has been the culprit of many disasters in people’s lives, as have psychiatrists! Listening to this program further convinced me that the so-called “experts” don’t know what they are doing, floundering as usual, and playing “gods” and “goddesses” with people’s lives. The DSM reads like an emotional bombardment written by intellectual lunatics! Many a psychiatrist and therapist can be easily diagnosed as psychopathic and sociopathic and all the other listings of mental illnesses. The AMA is a sad clique of misfits in kahoots with the pharmaceutical companies (as well as the dysfunctional insurance companies). Yikes! Save us from those who are out to save us!

  • Slantnan

    It seems that only recently the term ‘Asperger’s’ surfaced in the cultural consciousness through the entertainment media. I think people who identify with it will continue to use it for the distinction even if psychiatric circles dismiss it. Personally I think there should be more defining specifics, rather than less, when it comes to Autism – so the educational challenges could be identified and categorized for better accommodation.

  • I sometimes tell people that Asperger’s is sort of a “catch all” diagnosis. I have a lot of symptoms that sound like Asperger’s, but I haven’t been officially diagnosed. A few years ago, I got to talking about it with a friend who says he has Asperger’s and we both have similar symptoms. That’s the first I’ve heard of Asperger’s. For a while, I had trouble remembering the new term so I would call it, kind of jokingly, asparagus disease.

  • danclau

    I’ve always felt that asperger’s was autism but a different type. If it is to be classified as autism it should be treated as a separate type because asperger’s is presents itself very differently. However, when classifying asperger’s as autism it should be designated more specifically than “autism spectrum disorder”. It needs to listed more specifically because the treatment is different than for general autistic patients. I agree that because of this new designation people (especially adults) will not get the services they need so they can function in world. My husband has asperger’s and he was not diagnosed until his 50s. His whole life was a problem and many people just thought he was a bad person so he got into trouble a lot over the years. I don’t what to see other adults miss the help they could get.

  • There should be outrage in the community at this attempt to redirect funding. People who need help won’t be getting it and the APA seems to think that’s a good idea.

    • Virginia

      Isn’t that a problem caused by the people funding rather then the diagnosis itself?

  • How do they base these ‘Diagnosis’, percentage of the pop or someting or just how they’re feeling when voting? Myself I don’t take the APA’ss conclusions too seriously but that’s just me

  • the best thing I ever did was to tell my daughter when she was 9 years old that she had AS. This did not prevent her from going on to be awarded the Principals Award in her final year at High School in Kuala Lumpur for having “enriched the lives of students”. AS has not prevented her from working with me and Shona Hammond-Boys as the deputy head teacher in launching the Childrens ArtHouses Art-Educational system in the USA. These professionals really irk me. trying to drop people into boxes and then branding them, What nonsense is this in a world crying out for innovation, something many AS people have done for the benefit of all of us.

  • Arlene Dufurrena Misner

    This is bad VERY BAD my son who was not dx but Im sure he has aspergers is at this time in prison for 10 years….thats where people go who do not find a place to fit in this world. ….

    • Virginia

      Ariene, what is he in prison for? I believe you are right in many ways, a lot of people are mistreated and forgotten by society.

  • Virginia

    My view is that ASD has many spectrums within itself: one perhaps for sensory sensitivity, one perhaps for social difficulty, one perhaps for logical thinking, etc. What do you guys think?

  • Virginia

    I was diagnosed with ADHD as a child as I was “hyper” and distract-able and had many tantrums.(which looking back I feel were meltdowns… I was overwhelmed) I have tried to be diagnosed before with autism, in high school, but was told I didn’t display a lot of the characteristics, like arm flapping. Now I have done a lot of research, have gone on forums like Wrong Planet and Aspies for Freedom, and I have come to believe that autism is truly neurological, and that how it is expressed outwardly is different from person to person. I believe the neuropsycologist I saw was biased. He was a nice guy, (he actually helped me quite a bit) but I think he needs to update himself about the definition of autism. And maybe not think less girls have it then boys.

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