January 20th, 2012

Proposal: a narrower definition of autism

The definition of autism is about to be narrowed, which may cut the number of people designated as having autism or espcially Asperger’s, and will be likely to reduce the number who will be able to receive benefits because of their diagnosis. The question is, how many will be affected?:

At least a million children and adults have a diagnosis of autism or a related disorder, like Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. People with Asperger’s or P.D.D.-N.O.S. endure some of the same social struggles as those with autism but do not meet the definition for the full-blown version. The proposed change would consolidate all three diagnoses under one category, autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual. Under the current criteria, a person can qualify for the diagnosis by exhibiting 6 or more of 12 behaviors; under the proposed definition, the person would have to exhibit 3 deficits in social interaction and communication and at least 2 repetitive behaviors, a much narrower menu.

No one really knows the answer; some studies indicate the effect will be small, and some large.

But that’s not the reason I’m highlighting this article. I’m interested mostly in how it underlines the ways in which the DSM’s (the diagnostic manual used by mental health professionals) diagnostic categories, and changes therein, can have fairly profound political, social, and economic effects. The decisions made about how to modify the criteria for such diagnoses are not only clinical, but political and social and economic as well—and sometimes it may seem as though they are primarily political and social and economic.

17 Responses to “Proposal: a narrower definition of autism”

  1. DirtyJobsGuy Says:

    The problem is not in people receiving primary medical care for Autism/Aspergers but in accessing the vastly more expensive and controversial school based support.

    The bad cases need lots of support and parents are naturally reluctant to yield an inch. The marginal diagnoses are used to get extra attention from the schools and support services. This is a big money drain.

    Unrecognized in this is that today’s public schools cater to the high achiever/self starter and the very troubled students. The great middle are left to flounder. I’ve seen very liberal friends who extol the public schools jerk their kids out when the start to drift. If you can’t afford private school, then voila! your kid is mildly autistic and gets extra support.

  2. E.M.H. Says:

    Here are the questions I thought about when I read this article:

    1. Does it seem to you, Neo, that the medical profession is basically saying that the previous descriptions of Autism Spectrum Disorder were either too broad or too based on symptoms rather than causes? Sort of analogous to ancient medicine’s descriptions for “dropsy (now various edemas due to organ dysfuction)” and “consumption (a description of the wasting away, rather than identification of the TB pathogen)”.

    2. Does it seem to you that there’s valid psychiatric reasons for narrowing the diagnostic criteria?

    No, these aren’t “Gotcha!” questions. Rather, I’m interested to see what the opinion is from an actual degreed psychologist (even if your specialization isn’t in that area). Of the only two other people I know in the field, I’m not in constant touch with one, and the other works in a different field of psychology altogether and generally doesn’t discuss the topic of autism.

    At any rate, I did read and understand the social and political issues being raised in the article. But my concern is this whole notion of objection to the changing of the criteria. If there is legitimate medical knowledge generated to redo diagnostic criteria, then it stands that continuing to classify patients failing those criteria as afflicted with the disorder as incorrect and therefore improper medicine. To me, the answer to the concerns voiced in the article would not be to stand in the way of the redrawing of the diagnostic criteria, but rather to recognize that patients outside of it but still suffering from some sort of disorder still require medical care, just not under the guise of the newly redefined disorder.

    Does that make sense? In short, I’m worried that the notion that the practice of medical/psychiatric/psychological caregiving can be dictated by factors other than knowledge generated about the disorders. Such changes to not have to result in the denial of care to patients, but to continue to treat patients by autistic standards when the newly developed criteria now excludes them makes as much sense as giving a patient general treatment for “dropsy” when really there’s a direct organ failure that needs to be addressed. See where I’m going with this? At any rate, I was wondering what a non-layman had to think about all that.

  3. Artfldgr Says:

    after kinsey and meade and co-opting, it became a socalists device (As in russia) to control and change mass behavior and align (glieckshaltung) with the state… (it was easy to negate boys performance by drugging them and creating a condition defined by their different behaviors than girls when young… in that way, every normal active boy who couldnt sit still became a patient, and quite unable to compete equally)

    for me. i might as well drive over a cliff as this removed the last chance i had to some help for a halfway normal life, and a home, and family…

    being so socially far away from the people, puts aspergers into a very bad place for any kind of success in merit over ideology.

    as i said.. for various reasons there is no place on earth for me… and its clear that leaving rather than being slowly tortured

    segregated in a 84 degree closet with no future and no hope of any parity through legal recourse… i am better off trying out for the choir triumphant…

    being old, homeless, isolated and so forth is not a future that is worth living. especially when social engineering prevented you arbitrarily from achieving he life you worked so hard to have where you can succeed and be rewarded for merit. the nasty actions of others on top of it, well thats just an icing of pain and negation of hope to put a cherry on it.

  4. Artfldgr Says:

    Political abuse of psychiatry in the Soviet Union

    http://en.wikipedia.org/wiki/Political_abuse_of_psychiatry_in_the_Soviet_Union

    Political abuse of psychiatry is the misuse of psychiatric diagnosis, detention and treatment for the purposes of obstructing the fundamental human rights of certain groups and individuals in a society

    [ie. social engineering of outcomes... ]

    Psychiatry possesses an inherent capacity for abuse that is greater than in other areas of medicine. The diagnosis of mental disease can give the state license to detain persons against their will and insist upon therapy both in the interest of the detainee and in the broader interests of society. In addition, receiving a psychiatric diagnosis can in itself be regarded as oppressive. n a monolithic state, psychiatry can be used to bypass standard legal procedures for establishing guilt or innocence and allow political incarceration without the ordinary odium attaching to such political trials

    Psychiatrists have been involved in human rights abuses in states across the world when the definitions of mental disease were expanded to include political disobedience.

    As scholars have long argued, governmental and medical institutions have at times coded threats to authority as mental disease during periods of political disturbance and instability

    the idea that the more soviet we become the more soviet we become seems to be lost on people..

    psuychology has the power to remove sociopathic despotic people, so it has to be taken over in many ways

    the details of this reformation came after school reformation produced the people who would then reform the medical areas…

    it goes as far back as adorno trying to make a test to weed out non socilalists as evil… to the eugenics movement empowering the state unti. the late 1970s to force sterilize and so on.

    there is a huge area here where the public barely pays attention to. where such people talk about mass extermination, drugging water supply, forced education, sterilzation..

    the whole of the idea of mass control had to first get an ok from medicine… who is the largest inventor of mengele type interventions in peoples lives!!!!!!!!!!!!!!!!!!!!

    who justified taking children from families for their own good? or that medically all violence comes from men to women, to children to the elderly… or that despite obviously being unequal, advocacy gamed studies asserting otherwise..

    the history of all this is HUGE and unopposed now like eerything else.

    (its why we can say men and women are equal, but women having mental issues at more than twice the rate.. being more passive, and so on… )

    medicine was used to justify the reshaping of a free population to one the state can shape.

    nothing different between many of our medicl students and joseph mengele…

    both were willing to use the state to pay for research which would justify the state to intervene in peoples lives and force outcomes!!!!

    girls are being too passive in class to compete with boys after you destroyed single sex schools (Which we now know are superior not inferior as claimed)…

    easy… make up conditions that encompass normal behaviors you want to supress in the targeted group.

    a girl is submissive to whats she is told to do, a boy may talk back… great. make that talkkng back a medical condition and punish him and overturn his life for not obeying passively like the competition…

    if a guy like me tries hard to succeed… negate the effort, say your downgrading the others in the office by trying to do better… the idea is that the groups well being is more important than you… and with a wiff of medical in it.

    the future of this is going to get a whole lot worse… a whole lot worse..

    but hey…
    want to guess what group worked really hard to control the missives in the diagnostic book?

    well, there was a lot of stuff in there that was for women only, like pms, and which if you read the old descriptions would make you scared that such a person could serve in office!!!! (i can show you the papers and arguments from then!)

    what a mess..

    and if i write more and get more information, it will be curt down or not read. so its just better if i give up now while i am ahead.

  5. GoneWithTheWind Says:

    Everyone knows that if there were no money in it for schools, parents and health care providers the standards would never have been expanded in the first place. My solution to the problem is give schools $10,000 a year for each genius (IQ over 145) and give the parents another $10,000 a year and within two years the entire country’s IQ will increase by 50 points.

  6. neo-neocon Says:

    EMH: to answer your questions properly I’d have to look at the specific proposed changes and the background of why they were suggested. I don’t have time to do that right now; not sure whether I’ll do it later.

    But I’m writing to set the record straight on one thing: I am not a psychologist!! I have a Masters degree in Marriage and Family Therapy. Of course, I’ve had to be familiar with diagnoses and the DSM as part of that training, and I took abnormal psychology back in college. Believe me that was a LONG time ago; almost everything has changed since then.

    I think for most people the terms psychologist, psychiatrist, therapist, marriage and family therapist, are somewhat interchangeable, but they are actually quite different. MFT degrees don’t emphasize pathology and diagnosis.

  7. Artfldgr Says:

    Famous People with Aspergers Syndrome
    http://www.disabled-world.com/artman/publish/article_2086.shtml

    The suicide rate in people with Asperger’s is higher than that of the neurotypical population. (Attwood, 2006, p. 14)

    Reports indicate that there is a greater risk of depression for individuals with AS. Tantum (1991) states that up to 15% of adults with AS have experienced a period of depression, and Wolff (1995) reports that adults with AS are more likely to be at risk of suicide.

    Vincent van Gogh committed suicide (Botham, 2006, p. 14). Depression sometimes accompanies people with Asperger’s and in extreme cases can lead to thoughts, talk of, or suicide attempts (Attwood, 2006, p. 15).

    People with Asperger’s can maintain vivid or complex imaginary worlds, often with imaginary friends (Attwood, 2006, p. 15).

    Asperger Syndrome

    An increased risk of suicide is observed in persons with Asperger syndrome, with risks possibly rising in proportion to the number and severity of comorbid maladies. Asperger syndrome is probably undiagnosed in many suicide cases because of the dearth of awareness of the condition’s existence and the ineffective and unreliable tools used to identify it. Therefore, people with Asperger syndrome who commit suicide are probably reported as having other or undiagnosed psychiatric problems. In cases of unexpected suicide, Asperger syndrome is a strong possibility.

    http://emedicine.medscape.com/article/912296-overview

    Individuals with Asperger syndrome have normal, or even superior, intelligence and may make great intellectual contributions while demonstrating social insensitivity or even apparent indifference toward loved ones. Published case reports of individuals with Asperger syndrome suggest an association with the capacity to accomplish cutting-edge research in computer science, mathematics, and physics, as well as outstanding creative work in art, film, and music. Although the deficits manifested by those with Asperger syndrome are often debilitating, many individuals experience positive outcomes, especially those who excel in areas not dependent on social interaction. (See Prognosis and Treatment.)

    Persons with Asperger syndrome have exhibited outstanding skills in mathematics, music, and computer sciences. Many are highly creative, and many prominent individuals demonstrate traits suggesting Asperger syndrome. For example, biographers have described Albert Einstein as a person with highly developed mathematical skills who was unaware of social norms and insensitive to the emotional needs of family and friends.

    For clinical management purposes, Asperger syndrome and HFA may be considered together. Impaired social skills are associated with several other conditions (eg, developmental learning disability of the right hemisphere, nonverbal learning disability, schizoid personality disorder, semantic-pragmatic processing disorder, social-emotional learning disabilities).

    Attwood (2003) describes AS as the “pursuit of knowledge, truth, and perfection.” For individuals with AS, the expression of truth is more important than feelings.

    The Complete Guide to Asperger’s Syndrome
    http://www.jkp.com/catalogue/book/9781843104957/extract/

    a quote from my dentist hit me hard last night… she said you are the nicest kindest most helpful person i have ever met, but you also have the most painful sad and lonely life with nothing working out…

    she wondered how with that i could be so nice, honest, truthful, helpful, willing to sacrifice, and so on… (We been friends for years since i wandered into her office after no dental care for 15 years)

    The Aspie Life
    http://aspielife.blogspot.com/2007/12/loneliness.html
    Loneliness

    Loneliness has been a constant companion in my life. ……
    I laugh when I read the news articles which try to say that people with Asperger’s “have no desire for human companionship.” I can’t speak for all – it may be true of some, but it has certainly not been true for me. It can feel like a curse – having the acute desire for human interaction, togetherness, but constantly struggling to make it happen.

    i dont… its why they locked me away in a 57×47 inch room with no windows or ventilation and have no hope of a future

    from the same link

    I find no one else like me in my life. I have nothing in common with anyone…I feel trapped in a world that judges me at every turn and yet never bothers to try to help or understand.

    My whole life has been spend trying to figure other people out. I’ve always felt left out. I’m a watcher because that’s all I really know how to be – all I really can be. People say I’m stuck up and a snob. I don’t like to think that I am.

    I love people. I’d love to be with them, but my life is so different, my motivations so strange. I feel I have to compromise some of myself to get along with anyone else…So I am left with two options – to live always compromising parts of myself, never getting to be myself, or to live my life lonely and alone.

    Even though I know have gifts, there are times when I’d do anything to give up those gifts just so can be a normal person…People tell me that they can’t talk to me because it takes too much energy, but does that mean that I will be forced to spend the rest of my life being a hermit? Will there ever be anyone who is willing to work to be with me? Will anyone climb the mountain?”

    i would do anything to have a 100IQ and be able to achieve… having a 175, eidetic memory, complete isolation, lack of commisseration and normal social help from others like coworkers and such… all mean that the special stuff dont count…

    and i am too old to have a life…
    :(

  8. vanderleun Says:

    “i am better off trying out for the choir triumphant…”

    Take from someone who actually knows, you’re not.

  9. Don Carlos Says:

    DSM is anything but objectively scientific. IIRC, its title is ‘Diagnostic and Statistical Manual’ but that is (intentionally?) highly misleading. Statistics? Really?

    It is more like a Diagnosis-of-the-Month Club.
    DSM makes most dysfunctionals ‘victims’ of ‘diseases’ or ‘maladies’, but they’re just dysfunctional and are not/cannot be changed by the ‘therapy’ that is practiced today.

    Don’t read it unless you have a wish to pull your own hair out (That’s a described disorder-trichotillomania).

  10. Occam's Beard Says:

    I took abnormal psychology back in college.

    Useful background for dealing with us.

    I think for most people the terms psychologist, psychiatrist, therapist, marriage and family therapist, are somewhat interchangeable, but they are actually quite different.

    How about subsuming all into one meaningless but topical term: “marital organizer?”

  11. E.M.H. Says:

    Oh my goodness. I’m sorry Neo. For some odd reason I thought you were degreed in psychology. My apologies. I obviously misremembered.

  12. Micha Elyi Says:

    i am better off trying out for the choir triumphant…
    -Artfldgr

    This life is the tryouts. Looks like you’ve been selected to play a position that most others aren’t judged tough enough for. Leaving the tryouts early can entirely ruin ones prospect of making the team.

  13. neo-neocon Says:

    E.M.H.: no apology necessary! I certainly don’t expect people to remember minutiae about me.

  14. echo Says:

    Hello! Long time reader, first time writer… and guess what? I don’t want to offer an opinion on the state of the country, snow, poetry (although I adore it, Neo!), or autism. Nope, I just had to say to Artie, (is it okay that I refer to you as such?) that I am no one in particular, but I wanted you to know that you’re not alone! Although I can scarcely keep up with the depth of your thoughts, I do so appreciate the time you take to state them. That goes for everyone else who comments here as well. Thank you! I’ve learned so much from all of you…

  15. Parker Says:

    I have a short history (7 years) of working with K-6 kids in the ‘spectrum’ in my local public school system. The kids placed within the current definition of the autistic spectrum differ widely. It is my experience that some do not belong within the currently defined category of autism. These are kids who have behavioral problems simply because their parents have behavioral problems and the kids learned the lessons provided by their parents all too well.

    However, whether or not a child fits a new, stricter definition of ‘autistic’ or simply has behavioral problems due to familial issues is in a practical sense irrelevant IMO. It is in the long term best interests of society to make every effort to assist these kids to become social ‘animals’ that can function independently in society in a positive manner.

  16. Jim Kearney Says:

    Could it be maneuvering such as deleting the Narcissist from the Personality Disorders because Obama and so many Baby Boomers fit the description and it was a little uncomfortable seeing themselves?

    And now with the numbers of children with Autism multiplying in astronomical numbers from the first years of the disease as It used to be in the order of one in hundreds of thousands to one in 150 since the multiplication of Vaccines our children are assaulted with at one time? The numbers were begging for an explanation. Now, Presto, we just had an astounding drop in the numbers of Autistic Children. So we can stop demanding answers from the Medical Priesthood and the pharmaceutical companies.

  17. Nolanimrod Says:

    You say tomato …

    I just read that there is a bacteria which is common to the guts, and only the guts, of autism patients and they don’t know why.

    I know that we can’t seem to decide the qualifications necessary to be a red-blooded (red – can we say that?) American Girl Scout but perhaps questions like these should be answered before they start sewing labels onto everybody’s undies.

    Forty years ago I read one of those three-part New Yorker articles about a woman who had spent decades in state mental dungeons until some doctor noticed a greenish tinge on her retinas.

    Wilson’s Disease – caused by an inability to metabolize copper and which mimics schizophrenia.

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About Me

Previously a lifelong Democrat, born in New York and living in New England, surrounded by liberals on all sides, I've found myself slowly but surely leaving the fold and becoming that dread thing: a neocon.
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