When Doctors Decide Your Disease Doesn’t Actually Exist

People come to like their diagnoses, or at least to feel that they have explanatory power for the dissatisfactions in their lives.

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images courtesy shutterstock / wallybird

Theodore Dalrymple writes: Diseases that have no objective tests to distinguish them from normality have a tendency to spread like fungus: for example, it is years since I heard anyone say that he was unhappy rather than depressed, and it cannot be a coincidence that 10 percent of the populations of most western countries are now taking antidepressants. Yet the state of melancholia undoubtedly exists, as anyone who has seen a case will attest.

Likewise with autism. I remember an isolated, friendless and uncommunicative patient who tried to kill himself when his landlord could no longer tolerate the collection of light-bulbs that he had collected since childhood, was constantly enlarging, and that now threatened to fill the whole house. For the patient light-bulbs were the meaning of life. It was difficult to believe in such a case that there was not something biologically wrong with the patient, even if one could find it.

An editorial in the New England Journal of Medicine traces the convoluted history of the diagnosis of autism and Asperger’s Syndrome. The pediatricians Leo Kanner and Hans Asperger described the conditions in 1943 and 1944 respectively.

Kanner thought that two features were essential to autism, a psychological separation from the world manifest very early in a child’s life and an obsessive desire to prevent change in the person’s immediate surroundings. Kanner thought that such children had similar parents, often of high intelligence but who were better and happier with ideas than with human relationships. This gave rise later to the concept of the “refrigerator mother,” that is to say a cold and uncommunicative woman who did not cuddle her child or provide it with any emotional warmth, and whose conduct caused the child, by a mechanism of defense, to withdraw into its own world. This was also the era of the “schizophrenogenic” mother, the mother who communicated two messages in one verbal utterance, leaving the child uncertain as to what was meant.

These theories have now been abandoned; they were not only wrong but cruel, for they blamed the mother for the child’s devastating condition. Biology is back in fashion.

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images courtesy shutterstock / wallybird

Since Kanner described 120 cases, autism has increased enormously in prevalence. There is a lively and often bitter controversy over whether this increase in prevalence reflects a real increase – there really are more children with autism – or whether doctors are more aware of autism as a diagnosis and are therefore simply making up for missed diagnoses in the past.

There is another possibility: the criteria for diagnosis have become much looser so that more children fulfil them. The latest edition of the Diagnostic and Statsitical Manual of the American Psychiatric Association tries to narrow the criteria again, but not everyone is pleased by this attempt. People with children previously diagnosed as autistic are afraid that, if their children are dis-diagnosed, as it were, they will lose their entitlement to medical or psychological assistance. The children will no longer be deemed disabled, and there are advantages to being officially recognized as such.

Asperger’s syndrome is eliminated from the new Manual as a separate category and this will not please everyone either. People come to like their diagnoses, or at least to feel that they have explanatory power for the dissatisfactions in their lives. In some cases a diagnosis even give meaning to those lives: they devote themselves to associations that care for or (more usually) campaign politically for other people with the diagnosis. If much of your life you have been told that you have a condition which has become the focus of your existence, only to be told years later that no such condition exists, you are bound to feel a sense of loss or even of bereavement.

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images courtesy shutterstock /  wallybird

 PJ Lifestyle


7 Comments on “When Doctors Decide Your Disease Doesn’t Actually Exist”

  1. […] The Butcher People come to like their diagnoses, or at least to feel that they have explanatory power for the […]

  2. Reblogged this on aurorawatcherak and commented:
    I think I’ve said that I worked as an administrator for a community mental health center for more than a decade.
    I can attest to the people whose entire lives have been defined by a disability that I often thought did not apply to that person.
    There are people who have schizophrenia who may never be able to work at 9-5 job because they can’t handle the stress and the voices. I’ve met those people. Many of them, however, can work a part-time job with an understanding boss AND SHOULD. And I have met legitimately depressed people who needed help … for a time.
    The problem with these diagnoses is that they frequently are used as an excuse for not living. “I can’t get a job because I suffer depression.” Seriously? You were diagnosed 10 years ago and you’ve been stable for a decade and sometime in the last 8 or 9 years you didn’t feel well enough to get off your butt and do something for yourself? You manage to show up at this mental health center several times a week for a free lunch. Seriously? You couldn’t use that energy to work for a living? Then you find out they do have activities to keep them from being bored — church, kids, one woman owned horses — but no, they couldn’t possibly work because they “suffer from depression.”
    I’m glad to see the DSM-V is tightening up definitions. Maybe psychiatrists have begun to realize that the country can’t afford so many “disabled” people.

    • Dana says:

      On the other hand, you can’t get fired from church or kids or horses or the mental health center if you happen to have a downturn. You know, it really is nice to draw a paycheck and not have to go to the government hat-in-hand for it. If someone’s actively avoiding that experience, maybe there’s a darned good reason for it. Fear, if nothing else. Have you ever tried talking someone through that fear rather than judging them? That might be a nice change of pace for you.

      • Hi, Dana. I appreciate criticism as much as I do praise, because it challenges me to respond.

        I’m going to ask you to have the same spirit. It’s easy to judge one another when we’ve never actually lived each other’s life.

        You appear to be of the opinion that “drawing a paycheck” is something you don’t earn. You’re wrong. Often times, getting a job is a matter of someone deciding to take a chance on you, but keeping a job and raising to a professional level — that’s something you earn through your behavior. You have to show up every day ready to work in a professional and pleasant manner, REGARDLESS of your life circumstances, your desire to do something else, or even if the people you serve are grateful you showed up. Working for a living is hard work, as opposed to drawing government benefits. People tend to make their own “luck” when it comes to maintaining employment.

        To understand exactly what I am talking about, you need to read the original post from pundit and understand that he was focusing on diagnoses that no longer are in the Diagnostic Manual (DSM-V). These are diagnoses for which there are no medical tests and psychiatrists have come to the conclusion that they don’t exist.

        And, yet, every day, for 15 years, as I worked at the mental health center, I encountered people who had been diagnosed with these disorders and given an excuse for not participating in life. I’m not talking about schizophrenics or others with severe mental illness. I’ve taken heat from fellow fiscal conservatives on WP for saying we need to protect those folks with tax-payer funded services. I consider them legitimately disabled.

        I’m talking about personality disorders and people who were diagnosed with ADHD or mild depression or anxiety, who somehow managed to parlay that into government benefits so they didn’t have to go out and work for a living like the rest of us. They’d tell stories about their lives — how really crappy they thought their lives were — and most of the time, those stories were no worse than my own or those of my coworkers. And NO, there was NO talking them out of it. They couldn’t/wouldn’t see that it was their response that was the problem, that their behavior dictated their life circumstances. No, they had a diagnosis, damn it, so that made them special.

        I don’t know your life as you do not know mine. I base my opinion on years of observation and experience. I have a reason for being so outspoken and it is that I care about people. The current fiscal situation of our government is leading us toward the brink of disaster. If we don’t rein in our spending, it’s going to bring the entire national economy crashing down. The pretend diagnoses crowd needs to get off their asses before the inevitable happens because they are part of the problem, a symptom of the there-is-a-free-lunch-so-long-as-someone-else-pays-for-it mentality that is bankrupting this country. When the crash comes, it won’t just affect the pretend-diagnoses crowd. It will also affect the people who truly needed the services — the legitimately disabled and the chronic severely mentally ill.

        We’re not going to be able to help them, either, when the government is bankrupt and the economy takes a decade or two to recover. The time to fix what’s wrong is now, while we still have the resources to do so.

        But we aren’t going to do that. Your response to my post validates my belief that we’re a hopelessly stupid nation that needs to spend some time in a great depression (economically speaking) to wake up to reality.

        So while you’re here, you might want to read up on preparedness, because we’re all going to need it.

  3. Ann Kilter says:

    I agree that the diagnosis does open the door for services AND accommodations. Our kids would not have been nearly as successful as they are without both. Probably the autistic diagnosis is being overused. However, it has helped many parents and children immensely. In our case, autism was very clearly the diagnosis for my older son and daughter. For my youngest, it was iffy at best – and more the result of environment (having older siblings with the diagnosis affected her). But she was our chance to have slightly spoiled teenager who cared about her peer group and made real, substantial friendships.

  4. seventhvoice says:

    Reblogged this on seventhvoice and commented:
    Fantastic article……

  5. Dana says:

    They’ve removed Asperger’s as the name of a condition. The actual condition is still in the DSM, it just has a different name and has been placed in a different category. They are not suddenly going to stop recognizing high-functioning autism and stop trying to help people living with it.


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