The American Psychological Association removes Asperger’s as a diagnosis.

The APA is apparently reclassifying those who have Asperger’s, which will no longer be a diagnosis under the DSM-V:

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.

I’m not quite sure how I feel about this.  I’m very reticent to critique experts in a field when I’m not one, but there are concerns from experts surfacing.

And then there are parents who are justifiably worried that the changes will result in the exclusion of children who would have met Aspergers or PDD-NOS diagnoses under DSM-IV. Studies suggest that the new criteria might exclude anywhere from 10 to 55% of this population. The intention of the committee, or at least one of the stated intentions, was that those who didn’t fall under the autism umbrella might fit with the newly introduced “social communication disorder.” The only problem? A study with DSM-V architect Catherine Lord as senior author seems to have found that children diagnosed with PDD-NOS who didn’t meet the new autism criteria often didn’t have social communication problems. If they don’t have these issues, how will these once-PDD-NOS folk who no longer fit autism criteria fit the criteria for social communication disorder? The social communication disorder diagnosis, by the way, currently carries no infrastructure in the education or services system that would trigger support or resources for someone who has it. Only time will tell whether or not the changes will bear out these concerns in practice.

Here’s hoping it’s for the better.  I’ll try and stay on top of it, or get some input from psyche people if anything new pops up.

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About JT Eberhard

When not defending the planet from inevitable apocalypse at the rotting hands of the undead, JT is a writer and public speaker about atheism, gay rights, and more. He spent two and a half years with the Secular Student Alliance as their first high school organizer. During that time he built the SSA’s high school program and oversaw the development of groups nationwide. JT is also the co-founder of the popular Skepticon conference and served as the events lead organizer during its first three years.

  • Kate Donovan

    I’m a fan of the change. There’s really not evidence to say that Asperger’s is individual of the ASD range (that’s a spectrum disorder, not a single presentation of autism). The DSM is certainly fallible, but it’s intended to reflect science. This is a step in that direction.
    It’s not to say that people who would have previously met criteria for Asperger’s aren’t uniquely different from others who meet ASD criteria. It’s just more likely to be accurate to put Asperger’s as under the umbrella of ASD.

    • Kate Donovan

      Also, fwiw, this won’t be technically out until DSM 5 publishes, which keeps being put off. Currently DSM-IV TR is the released version.

      • Michaelyn

        I’m pretty sure they’ve officially announce the publication of DSM-V to be next May. …But I wouldn’t be surprised if that changed again.

        • Kate Donovan

          Oh, yeah, I think that’s a more recent one than the last time I looked…I was thinking it was coming out near my birthday. Womp womp.

    • Azkyroth

      The question is, will people currently receiving services be eligible for them under the Autism Spectrum Disorder criteria?

      There was a line drawn here that there was no rational reason to draw, and it’s good to have it removed, except for its stimulative effects on the apparently endless appetite of policymakers and, especially, school district employees to throw people with disabilities under the bus.

      • Kate Donovan

        The tradition of revisions is that those with prior diagnoses don’t have to deal with newer changes unless they would prefer to revise their diagnosis.
        Though it was about two years ago, I recall on of the APA boardmembers in on this change was talking about how they wouldn’t be retroactively changing anything.

        • Azkyroth

          And of course the board’s decisions are binding on service providers, school districts, social welfare agencies…

  • Dfyeomans

    Luckily they removed gender identity disorder from the DSM V and replaced it with gender dysphoria, which only applies to people who are distressed about their gender identity.

    • Kate Donovan

      But unfortunately they added Transvestic Disorder, which is pretty damn bad.

      • Dfyeomans

        I had no idea that was in there in the first place, thanks for telling me. I am glad they are moving in the general direction of forward anyway.

      • Dustin

        I have to point out that Transvestic Fetishism is already in the DSM-IV-TR. Page 574. I’d also like to point out that criterion B for diagnosis is “The fantasies, sexual urges, or behaviors cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.” Put differently, if it is distressing to the client, it’s a problem, which is no different than any other paraphilia.

        • Kate Donovan

          Right, but TF isn’t the TD diagnosis. TD includes anyone who is gender variant or female AMAB or male AFAB (assigned male/female at birth) while TF did not. TD also doesn’t carry the treatment reccs that GD does. and, most importantly, I believe in many states, a GD diagnosis is required to change legal documents prior to “bottom surgery” (this is especially problematic for those who don’t want surgical intervention).
          TF and TD are also based on the discredited idea that being a trans* woman is (and I’m quoting here from a summary of one of the best known books on this theory) “an extreme type of male homosexuality and one that is a sexual interest in having a female body”.

          • Azkyroth

            “an extreme type of male homosexuality and one that is a sexual interest in having a female body”.

            …this is your brain on gendertyping.

        • Kate Donovan

          So, basically to summarize all that word vomit, GD covers the distress of dysphoria, making TD/TF unneccessary, TD/TF is based on some iffy stuff, and this has some pretty bad real world consequences.

          Plus, I go to school and study in the same dept as the man I was quoting previously about autogynephilia (the theory about trans* women), and so I have a vested interest in how research here gets applied :P

  • RuQu

    This is not my field, but I have seen a fair amount of criticism of the DSM-V and no commentary in favor of it. I didn’t keep any links, but I’ve read complaints of poorly designed trials, hasty publication, and issues like this one you raise here.

    We do need to keep upgrading the DSM to keep up with changes in the field, but changes have serious ramifications for patients and need to be thoroughly thought out.

    • Kate Donovan

      The DSM has been put off for nearly two years in order to run further validity and reliability tests for diagnosis. That hardly sounds like hasty publication.
      Furthermore, all proposed changes go up for public comment and that function, though it may have closed now, has been open for years.

      • RuQu

        That it was “put off” to run “further” tests sounds exactly like a hasty publication. It sounds like they wanted to push it out too soon, were called out on it, and have responded in a reasonable manner.

        As I said, this is not my field, I am just passing on from what I’ve read in the past from people who work in that field, and that syncs well with what you are now saying in the present about current postponements.

        • Kate Donovan

          I actually worked at a lab running the tests for a specific diagnosis, so I’m going to have to strongly disagree, as someone with direct access. There was concern about reliability of this particular diagnosis, they didn’t feel it was acceptable to publish with the possibility of conflating a few different aspects of it, so they ran tests at a bunch of new (double blinded) sites. They weren’t “called on it”, it was a decision of the APA, which publishes and tests. There’s not some external body chastising them.

          • RuQu

            Does the British Psychological Society not count as an external body?

            There is a whole section on criticism of the DSM-V on it’s Wikipedia page.

            Some of the criticism we should be most keen to observe, as outsiders and skeptics, is the high lack of transparency, and the requirement that task force members sign NDAs.

          • Kate Donovan

            They’re an external body, but they’re not oversight.
            Though I do agree w/r/t transparency. However, all changes were open to comment from the public.

  • Enric

    Oh, cr**p!!
    They are going to exclude Asparagus?
    What I am supposed to eat now?

    • Azkyroth

      Between making light of a disability and asterisking out a non-slur (and in fact non-swear word. What the FUCK?), I suggest you eat cr**p. >.>

    • John Evans

      No this is good. It will make the cyborg tracking dogs of the NWO have a harder time finding you by smell.

  • Zugswang

    I think the one thing I most disliked about the changes to the DSM was removing bereavement as an exclusion for depression. While bereavement CAN accompany clinical depression, the fact is, it is natural to be sad when something bad happens to you, like the loss of a close friend or family member. I have a strong feeling that this change was motivated more by financial incentives than a desire to improve patient care, though the explanations are often cloaked in the language of being good clinicians.

  • MargueriteF

    I’m not qualified to state an opinion on whether or not Asperger’s should be a separate diagnosis. But as the mother of a boy with Asperger’s, I will say that my concern is more that I don’t feel comfortable saying, “My child has autism.” My kid is getting straight A’s in middle school, is well-behaved, reads like a fiend, and has no significant issues right now despite the fact that any list of Asperger’s traits sounds like a comprehensive list written specifically about him. I frankly feel like a bit of a poseur saying, “My son is autistic.” I do realize autism is a very broad spectrum, but most people don’t, and they usually assume that autism means something much more extreme and difficult than what we’re dealing with. But I suspect the term “Asperger’s” will persist in popular culture for a long time, so I’ll probably continue to describe him that way on the rare occasions when it’s necessary.

    • Kate Donovan

      The nuances in here are really important, and I’m glad you mentioned them. I rarely self-describe as anorexic (though at one point I met DSM criteria for it), and I feel weird about co-opting a public perception of a narrative that is no longer how mine looks. As much as we’d like it not to, the way society perceives a label effects how likely we are to use it.
      I’m sure Asperger’s will persist in culture, and I rather think it ought to. Self-identification lets us relate and connect and find people who are very very like us. However, from a research and diagnostic standpoint, the change is important (DSM diagnoses are often central to doing research on pathology and treatment of different disorders. Using the standardized diagnoses means that research can be compared. Ie, the clients you describe as depressed meet the same criteria as my depressed clients) in that it’s more refined to describe autism as a spectrum with some very specific variants.

    • Hot Mess

      I am austistic, and I’m the exact opposite, I prefer to say ” I am autistic” rather than “I have Asperger’s Syndrome”, everyone and their brother self diagnoses themselves with Asperger’s and it makes it harder for people to take it seriously, it’s the new OCD or AD(H)D. slight tangent, I HATE the phrasing “Has Autism” rather than “IS autistic”, The former implies that it’s some temporary condition, the latter denotes it as intrinsic to the person. I am all for the change, assuming everyone continues getting the care they need, or more appropriate care; we have a hard time getting taken seriously ” You only have Asperger’s, you aren’t REALLY autistic” etc.

      • MargueriteF

        I apologize if my phrasing was offensive. It wasn’t intended to be.
        I can see your point. I had one pyschiatrist tell me (as a joke, albeit a not very funny one) that I clearly had Asperger’s because I was a science fiction geek. I do wonder if the general populace thinks that way sometimes. At any rate, I think the main thing here is that hopefully this reclassification will work as a clarification and help people get the care they need, rather than act as some sort of roadblock to care. Fingers are crossed.

    • Zugswang

      I think it’s important to keep in mind how medical knowledge and terminology changes over time as we gain information and refine definitions and terminologies to more appropriately reflect contemporary understanding and create systematic descriptions that are more useful in treating patients. Things like dementia praecox being relabeled as schizophrenia, refining terminology, as with the obsolete “bronchotomy”(surgeons no longer use that word, it’s been replaced with more specific terms like laryngotomy, thyrotomy and tracheotomy, depending on where it’s performed), eliminating poorly defined “catchall” conditions like “female hysteria”, or even purging the literature of pseudoscience as was done with “dysaethesia aethiopica”. These are all examples of once commonly used terms that are no longer a part of a medical professional’s vocabulary. Changes to the DSM (and other medical reference texts) are going to continue to happen, and those professionals whom it affects will have many lively and informed debates on what to include or exclude in the next editions.

      I guess what I’m saying is not to worry too much about labels on the margins because of the narrow stereotypes, ignorance, or outmoded education of armchair psychologists. Your kid doesn’t need to be Temple Grandin for him to need assistance or treatment. What is most important for you (and you’ve already said as much) is that he gets the necessary care or treatment for whatever prevents him from having a higher quality of life (be it an infection, a physical injury, or mental behaviors) regardless of whether it currently has a name or not.

      Speaking generally, I think a lot of people forget that just because there isn’t a name doesn’t mean there’s isn’t a problem (we didn’t know peptic ulcers could be caused by bacteria until Barry Marshall was crazy enough to drink a petri dish full of Heliobacter pylori), and the opposite is just as true (break out the leeches, I’m feeling a touch sanguine).

    • Nate Frein

      If it helps, my fiancee (who is in social work) uses the phrase “he/she is on the spectrum”.

  • ewok_wrangler

    Nice post; good you explain the issue and provide links to info and don’t go all pundit-y on it.

    That said, damn it, you are RELUCTANT to critique experts. RELUCTANT is a perfectly good word that means “prefer not to do…” something. RETICENT is a very specific kind of reluctance, preferring not to speak. The reticent persion is close-lipped. Stays mum. Zips it. When you TALK about how you don’t want to critique the experts, you are being the OPPOSITE of reticent! You are demonstrating a willingness to speak — about your reluctance to act.

    Right then, that’s cleared up, right? Tea?

  • unbound

    My youngest son was diagnosed with Asperger’s a few years ago. However, our school system has him labelled as autistic anyways for support services. My understanding is that Asperger’s is largely already considered autism (perhaps the highest functional aspect of that spectrum) by many experts. My read is that they are just trying to make that opinion formal at this point.

    Although my wife was not initially comfortable with our youngest being called autistic, in the process of getting support from the school system she has become comfortable with the autistic label. It doesn’t change who our son is or his capabilities, and neither label is one that should be casually brought up in public (people’s perception and treatment change based on such labels).

  • judy

    I am glad that Asperger’s is being written out of the manuel. Social skills are important but not at the expense of not getting into abusive friendships and being afraid to speak up when wrong is committed for fear of a diagnosis of not having any friends. In Germany during the nazi era, if enough people had fought the nazis 60 million lives would have been saved.( jews ,non jews , soldiers and citizens) I understand about the shooting in Newtown but other factors have to be looked at. Also, I can count on one hand how many childhood friends take care of people when they become infirmed.

    • Azkyroth

      Asperger’s is not a matter of simply not having social skills.

      Also, I am extremely skeptical that the Newton shooter was actually diagnosed with Asperger’s syndrome, and more so that it was an appropriate diagnosis.