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    Redefining Autism For DSM-V
    By Hank Campbell | January 22nd 2012 04:46 PM | 22 comments | Print | E-mail | Track Comments
    About Hank

    I'm the founder of Science 2.0® and co-author of "Science Left Behind".

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    Changes to the diagnostic definition of autism will be published in the fifth edition of the "Diagnostic and Statistical Manual of Mental Disorders" - DSM V - but exactly what those changes will be is a key point of discussion. There are still a lot of qualifying issues in a lot of areas for a publication that has already been a long time in the making.

    At stake? Apparently a lot of money.  Autism was once rare enough that a definition was not rigorous but it also was not crucial - some leeway was allowed.  As a result, recent increased instances, either to more occurrences or more accurate diagnoses or even mis-diagnosis, have made the new definition for DSM-V a hot topic.

    Unlike DSM-IV, when the race was on to add diagnoses for everything, concern about DSM-V is in making things more scientific and less social interest or advocacy-based.  If 80 percent of people are something, for example, it isn't a psychological condition, and autism has been extrapolated so far that virtually anyone can be considered 'on the spectrum' or one of its derivatives if they want to be.  That's bad for people who actually have it because limited treatment resources are stretched beyond control.

    But a push is also on to make sure cases are not lessened. Yale School of Medicine researchers at a meeting of the Icelandic Medical Association state that getting an autism diagnosis could be more difficult in 2013 when a revised diagnostic definition goes into effect - labels mean services and services mean money.

    Whether or not the changes actually are bad is the debate.  Accuracy in diagnoses should be paramount (and are, to most) but autism is a booming industry.  Cutting those back is going to be a negative development to people working in that industry and to parents who are concerned.  Yale Child Study Center director Fred Volkmar, M.D., and colleagues Brian Reichow and James McPartland analyzed people (without intellectual disabilities) who were evaluated and determined to be autistic during the 1994 DSM-IV field trial and they estimated that about half those might not qualify for a diagnosis of autism under the proposed new definition. If so, was DSM-IV too loose or is DSM-V too strict?

    Obviously, looking at old diagnoses, rather than actual people, and matching those to new proposed criteria and claiming they might not qualify is not entirely rigorous but autism was less faddish in 1994 so they may have a point.  If autism is being reconfigured by negotiation and lobbying rather than science, DMS-V will be basically useless for deciding what should be covered by insurance companies, which means their coverage will be arbitrary. Labels matter when it comes to services and people want services for free. It's impossible that those economic factors aren't being considered.

    The cases that might not be covered now are not cognitively disabled people.  They may instead be like a lot of people who are casually diagnosed.  In science and math, they may be like a lot of people who suddenly find themselves being labeled autistic for not liking to drink or socialize. Basically, the problem DSM-IV ran into was that they wanted to call everything a disorder, which meant to the public and insurance companies it really meant nothing so coverage was inconsistent. 

    What about analyses like this, that seek to compare diagnoses across eras and DSMs?  It becomes even trickier.  An autism diagnosis in DSM-III was not the same as IV and a IV will not be the same as V.  The status quo can't remain, of course, DSM-IV had too many flaws, but the social sciences have a hard time maintaining science rigor and most (Four Horsemen of the Questionable like Stapel, Hauser, Kanazawa, etc., aside) in the field want that to improve.  DSM-V is the most thoroughly negotiated document in psychology history, as it should be.   For its 2001 version, the United Nation Intergovernmental Panel on Climate Change (IPCC) threw out everyone who disagreed with working group leaders on previous versions and that was not good for climate science, as the resulting scandals and credibility dips showed - psychology is sticking to its guns and instead saying DSM-V is "ready when it's ready" and that is to be applauded.

    Any change is going to be criticized and the American Psychiatric Association (APA) seems to be ready for that, but they haven't been at the forefront of a cultural storm before so we'll need to give the new criteria some time.

    Comments

    There is nothing scientific about the DSM. It is a cultural document without scientific basis. It is voodoo and big business and one of the biggest frauds perpetrated upon the American public.

    "...autism has been extrapolated so far that virtually anyone can be considered 'on the spectrum'... "

    "...they may be like a lot of people who suddenly find themselves being labeled autistic for not liking to drink or socialize."

    Are you kidding me with statements like this? Seriously, this article is absurd.

    Hank
    You may not like it, you may not do it, but saying it doesn't happen is absurd. 
    As a teacher in a school with a large autistic population, I can understand the quandary about this topic. It is very easy for (especially) new teachers to declare a child who has social or academic issues "autistic". In my frequent readings about this topic, I find I like the way the UK authors refer to those niche kids who have some weird behaviors or social oddities or the like. . . they say "Autistic-like characteristics" which I find useful every so often with this or that child that can't socialize, make eye contact, and whom you can't stop them running figure-eights around the tree at recess, but is academically successful.

    Autism is made up, is bunk science and is a lie.

    Has nobody else yet seen the fact that psychiatric diagnoses are controversial and political as an indication that a psychiatric condition is not quite the same sort of thing as, say, the flu?

    In the latter case, you have a collection of symptoms such as runny nose, fever, sore throat. Then you have the definition of the disease itself, which is a bodily invasion of influenza.

    In the former case, you have a collection of symptoms, which is itself defined to be the disease. Predictably, this leads to a huge amount of "close" cases and "spectrums" and the like.

    I don't know if anything should be done in light of this, but I do think this is a fact that ought to at least be acknowledged, especially when we talk about things like "precise" diagnoses. Precise by what standard? By the "spectral" nature of psychiatric illnesses, no matter how you define a disease, it will always be a matter of drawing an arbitrary line decided by committee and there will always be patients who fall just outside of that line and get denied coverage for it, etc. This is unavoidable given how this all works.

    Hank
    a psychiatric condition is not quite the same sort of thing as, say, the flu?
    You've hit upon a problem just in using the term 'psychiatric'.  Most initial diagnoses are not made by doctors, they are made by teachers. When a teacher believes a child is autistic, a psychologist then does some tests, which have nothing to do with medicine.  Only farther along is a doctor, much less a psychiatrist, involved.  The tests are autism-specific so if you match any criteria, you are autistic on some part of a huge spectrum.  Which is not a great way to evaluate a wildly diverse spectrum of people and personalities.  

    Today, if you were a child, you might be labeled autistic.  So might I.  Hopefully in 2014 the diagnosis will be more rigorous but the APA has to make sure it is reining in the false positives and not excluding people incorrectly; that requires some diagnostic flexibility because there is no cookbook in neuroscience. But it can't be completely arbitrary either, like much of it is now.

    My son has autism. To those who think its made up, shame on you. You don't know what the hell you are talking about.
    Do you think people go through all of the hours and treatments to help autistic people people because its some kind of joke? Or because its fun? The problem with autism isn't the people who have it... the problem is YOU and how YOU deal with it.

    On the contrary, I have never experienced deniers to be much of an obstacle to autism research. Ignore them and they either go away or if they are stubborn become white noise. There are much bigger obstacles, fundamental ones preventing even fully-interested parties from understanding the disorder let alone fixing it.

    We, the public, can not possibly know which side is correct on this issue. What I worry about is that, like the belief that inoculations are causing the increase in autism, activists will decide the issue through public pressure rather than scientific evidence. Are we watching the birth of a new "Military/Industrial Complex", which President Eisenhower warned of on leaving the White House?

    this is barely readable, pls re-write

    Read through the information in the link above attentively - This team makes several excellent points, but their opinions are not the end-all, say-all. DSM-V is NOT going to be an activist controlled argument surrounding the spectrum of Autism. It will be a new(er) reality to people everywhere -- Just like Alcoholics Anonymous SHOULD be. Only those who are affected by said 'disease' are the only ones who understand it....mostly. There are those out there that LOVE to have their blinders on and ear plugs in when the topic comes up. Do yourself and everyone around you a BIG service: Pay attention - Stay Informed - Do Your OWN Research
    Only an idiot denies the existence of autism. That said, the current definition is so awful that a quarter of my coworkers probably qualify "autism spectrum". These are high-ranking, top-paid engineers and programmers who developed solid careers. They are more interested in things than people, socially awkward, and given to strange passions, but that used to be called eccentric...

    Ironically, one of these guys has a kids who is truly autistic, and you can see the difference, even if it would be hard to describe it.

    Hank
    Psychology lends itself to being used colloquially just like anything else in science.  A decade ago, claims of kids being ADD was all the rage - if they weren't zombies in class.  Lots of people use narcissistic colloquially, along with sociopath, etc.   The big difference is there is no cachet in being those things and autism has an entire industry including two huge groups that fight each other over wanting to represent autistic people.
    In science and math, they may be like a lot of people who suddenly find themselves being labeled autistic for not liking to drink or socialize.
    Seems I have acquired yet another label...
    [clunk!]
    ... to chuck in the bin with the rest.
     


    Why do we need an accurate, correct diagnosis? In fact, why do we need a diagnosis at all!? In my view, the only reason should be to point the sufferer (or caregivers) in the direction of appropriate treatment. No other consideration, be it political, economical, social or anything else, whatsoever, should be taken into account. It should be only for the benefit of the person suffering from the condition.

    If the people compiling the DSM - V takes any other consideration into account, it cannot be considered of any use scientifically, medically or educationally.

    Hank
    In my view, the only reason should be to point the sufferer (or caregivers) in the direction of appropriate treatment.
    But doesn't an accurate diagnostic framework prevent that from happening? How can there be appropriate treatment if the diagnosis by psychologists is arbitrary? And it is arbitrary right now, thus the reason to create this elaborate spectrum which covers so much it makes the field look bad. We get goofy labels like 'high functioning Asperger's" which basically means 'completely normal but their personality is annoying'.  Incorrect and overly broad autism diagnoses are doing more than any cultural fundamentalism by progressives or conservatives to squelch diversity - they're labeling anything outside their narrow range as abnormal.  And the autism cases are diminished in the eyes of the public because the term is overused.  The framework clearly needs to be fixed to achieve the goals you list.
    I agree that there need to be a far more discriminatory (or detailed, if you prefer) set of "tick boxes" that would be less ambiguous to interpret. This would lead to more accurate determination of where on the spectrum the "sufferer" finds him-/herself on the spectrum. I.e. "High functioning Aspies" would point to career options, rather than treatment protocol :-)

    The point I'm trying to make is: We have to look at what the whole aim of the DSM V is, and not consider outside stakeholders (governments, insurance companies, etc.). This would make the DSM obsolete by definition.

    "We get goofy labels like 'high functioning Asperger's" which basically means 'completely normal but their personality is annoying'. Incorrect and overly broad autism diagnoses are doing more than any cultural fundamentalism by progressives or conservatives to squelch diversity - they're labeling anything outside their narrow range as abnormal."

    You are so right! My son was daignosed as "moderate/severely autistic" at age 3. We were told he could never be taught, he would never read, and if he learned to use a half-dozen ASL signs it would be the most we could hope for. The clincher on the psychiatric testing that condemned him was when the Psych had him have a pretend birthday party for a little doll. She had him make a cake out of playdough and put a wooden cylander into the "cake" as a "candle." After singing "Happy Birthday" (which he couldn't do because he really does have a language impairment), the psych wanted him to "feed the baby" and then "put the baby to bed." Well, he wouldn't put the baby to bed! Really...who has cake and then leaves a party to take a nap??? He finally allowed the psych to put the baby to bed, he paused for a long moment and then shouted, "Wake up!" and got the baby up for more cake. For this, he was diagnosed autistic. He is 12 now with definate issues with language and auditory processing (which makes group conversations extremely difficult.) He likes Star Wars (which apparently is "an unusual interest" though I don't see any conventions being held for people who like to name all the covered bridges in New England...just as an example). From my perspective, the DSM-V will save my son from a life sentence. There SHOULD be a defination for autism...and it should be applied to people who really are.

    Hank
    That's a terrific story.  And yes, I am certain if you took an overenthusiastic therapist and gave them a group of 'Star Wars' convention attendees, the 'spectrum' labels would be off the charts.  The weakness to having such a broad standard is it becomes a personal one for people who probably need more structure themselves - the people doing the diagnosing. As the saying goes, if your only tool is a hammer, you probably see a lot of nails and a lot of psychologists. psychiatrists and doctors see a lot of nails these days.   Like I note, this is a huge resource distraction from kids who truly need those services.
    As a psychologist who tries to carefully diagnose autism I must comment on the number of parents who WANT their child diagnosed with Autism as they seem to feel it has less of a stigma than one of the categories of emotional disturbance. I find your column fascinating and the comments, for the most part, "right on." I also see a lot of youngsters whom I would call "quirky" and whom parents push for an autism or Asperger's label. Unfortunately, if I don't comply they will make the rounds until they find a doctor who will... Here's hoping DSM-V helps.

    This post does not attempt to negate many of the valid questions and skeptic remarks about the intervention in Libya, but I did want to make these comments regarding the condensed time-frame in which the decisions to intervene were being made.