Wednesday, February 8, 2012

Asperger's Syndrome as Trendy

I know this topic is a minefield, but I happen to agree with two recent column in the New York Times. "Autism" as a label and diagnosis is being applied to too many people, especially the diagnosis of Asperger's Syndrome. My experiences are purely anecdotal, but when I speak to groups about autism it is common that one or two young adults and/or their parents approach me to tell me that they have self-diagnosed Asperger's Syndrome.

Self-diagnoses are not official diagnoses. You should always work with a clinician to determine something like an autism diagnosis. What if the individual actually has a social anxiety disorder and not an ASD? What if the individual has mild depression? There are so many "what-ifs" that I must always recommend a professional evaluation.

Teachers even come to me and say, "I believe I have students with Asperger's in my class." In general, these teachers end up describing what we might call "geeks" or "nerds." Sometimes, they also describe the shy, quiet bookworm like my wife. My wife is simply an introvert, but people ask me, "Is your wife on the spectrum?"

My wife, and many of the people I know, are introverts who appreciate quiet time to read and explore knowledge. There is no need to find hidden pathologies. My wife isn't shy, and doesn't have social anxiety. She simply wants to be left alone.

The first column in the NYT with which I found myself agreeing, at least to some extent, was this one:
http://www.nytimes.com/2012/02/01/opinion/aspergers-history-of-over-diagnosis.html?ref=opinion

January 31, 2012
Asperger's History of Overdiagnosis
By PAUL STEINBERG
Asperger syndrome and Aspies — the affectionate name that people diagnosed with Asperger syndrome call themselves — seem to be everywhere. 
Considered to be at the high-functioning end of the autism spectrum, Asperger syndrome has become more loosely defined in the past 20 years, by both the mental health profession and by lay people, and in many instances is now synonymous with social and interpersonal disabilities. But people with social disabilities are not necessarily autistic, and giving them diagnoses on the autism spectrum often does a real disservice.

The key point in the opening is that some people with social "disabilities" (and I believe even people who have no disability, only introversion) are being diagnosed with Asperger's Syndrome. I know that's not popular to state within the autistic community, but it is true. Maybe it is only a fraction of the diagnoses, but it is happening.

Isn't every "official" diagnosis based on the Diagnostic and Statistical Manual of the APA? No. Even with a revision, broader autism criteria will remain enshrined in state and federal regulations for years to come.

The DSM criteria are not the only guides to assigning the autism labels, but the DSM-IV and upcoming DSM-V do set the standards.

I've had school psychologists tell me they have "diagnosed dozens" of students. In some states, schools can classify children without independent evaluations; laws vary state to state. In California, you can be officially diagnosed by a neuro-psychiatrist and not qualify for supports unless and until the state decides your impairment affects daily life substantially. And the state can also label you "autistic" without an official diagnosis.

What happens when someone is misdiagnosed? That person fails to receive appropriate supports. And when we diagnose someone without a "disability" we are misdirecting resources.

[Children] and adults with significant interpersonal deficits are being lumped together with children and adults with language acquisition problems. Currently, with the loosening of the diagnosis of Asperger, children and adults who are shy and timid, who have quirky interests like train schedules and baseball statistics, and who have trouble relating to their peers — but who have no language-acquisition problems — are placed on the autism spectrum.

I've stated repeatedly that I know the new DSM-V won't change my life. I am disabled and that isn't going to change, with the "autism" being the least of my personal concerns. My physical injuries dating back to birth place far more restrictions on me than my inability to deal with social situations. Still, I'm unlikely to "fall out" of autism, too. I'm not merely socially "different" — I rock, I tap, I'm sensitive to stimuli, I'm repetitive, and so on.

One of the odder trends is to "retroactively" diagnose famous people so we can all "take pride in autism" for some reason. I don't take pride in being unable to deal with people. I don't take pride in my flapping arms and stuttering speech. And I don't need "role models" to make me feel better. I'm not going to be Einstein or Bill Gates.

Labeling people without a real diagnosis is just plain reckless. What if those people had other issues? And, why do we care? I want to celebrate someone's accomplishments, regardless of his or her challenges.

In recent years speculation has abounded that Albert Einstein must have had Asperger syndrome. Christopher Hitchens speculated that his intellectual hero George Orwell must have had Asperger. Indeed, Orwell had major problems fitting in at British preparatory schools — not surprisingly, he hated the totalitarian tenor of teachers and school administrators — but someone on the autism spectrum could probably never have become a police officer in Lower Burma, as Orwell did. Similarly, writers like Charles Morris have noted that Warren Buffett is thought to have a condition on the autism spectrum, presumably Asperger syndrome.

Failure to "fit in" with society is not a neurological disorder. It is a social impairment, but not a disability. Being different is not always a sign of anything except being… different.

Many people, now inappropriately labeled as Aspies, make the world a richer, more interesting place. Their quirky absorptions in, say, physics, baseball stats or investment strategies add enormously to human advancement. […] Their seriousness and singularity of focus fit more compatibly with the interests of older adults rather than the interests of their childhood or young adult peers.

Some autistics make the world a better place, yes, and so do some people who are different. Most people, disabled or not, simply exist. Few individuals have a lasting affect on humanity. Sorry, but that's just how it is. I might affect a few lives, I might not. Autism might influence what I contribute (it probably does) or it might not.

For better or worse, though, Asperger syndrome has become a part of our cultural landscape. Comments about a person's having "a touch of Asperger's" seem to be part of everyday conversations. Even an episode of "South Park" last year was devoted to Asperger syndrome. We can only hope that better physiological markers distinguishing between the autism-spectrum disorders and pure social disabilities can stem this tide of ever more pathologizing.

I do agree we need to stop with the pathologies. Being different is not a disorder.

And then there was this column:
http://www.nytimes.com/2012/02/01/opinion/i-had-asperger-syndrome-briefly.html
January 31, 2012
I Had Asperger Syndrome. Briefly.
By BENJAMIN NUGENT 
FOR a brief, heady period in the history of autism spectrum diagnosis, in the late '90s, I had Asperger syndrome. 
There's an educational video from that time, called "Understanding Asperger's," in which I appear. I am the affected 20-year-old in the wannabe-hipster vintage polo shirt talking about how keen his understanding of literature is and how misunderstood he was in fifth grade. The film was a research project directed by my mother, a psychology professor and Asperger specialist, and another expert in her department. It presents me as a young man living a full, meaningful life, despite his mental abnormality. 
"Understanding Asperger's" was no act of fraud. Both my mother and her colleague believed I met the diagnostic criteria laid out in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. The manual, still the authoritative text for American therapists, hospitals and insurers, listed the symptoms exhibited by people with Asperger disorder, and, when I was 17, I was judged to fit the bill.

A psychology professor diagnosed her son with Asperger's. How could we not trust such a qualified individual? And yet, this professor later admits to her son that the diagnosis was incorrect. How did this happen? Because we have associated "awkward" and "geek" with "autism" for several years.

As I came into my adult personality, it became clear to me and my mother that I didn't have Asperger syndrome, and she apologized profusely for putting me in the video. For a long time, I sulked in her presence. I yelled at her sometimes, I am ashamed to report. And then I forgave her, after about seven years. Because my mother's intentions were always noble. She wanted to educate parents and counselors about the disorder. She wanted to erase its stigma.

The idea that the psychology professor had "noble intentions" doesn't persuade me to forgive the trend of over diagnosis. What happens to a child or adult misdiagnosed because of a quirky personality?

I wonder: If I had been born five years later and given the diagnosis at the more impressionable age of 12, what would have happened? I might never have tried to write about social interaction, having been told that I was hard-wired to find social interaction baffling.

This is one of the questions I have about myself. I write. But, I also struggle with issues of character motivation. Creating unique characters isn't easy, but it isn't easy for any author. That's why I do like most other authors and base characters on bits and pieces of people I've met in real life or read about in the media.

The column ends with a call to clarify what Asperger's Syndrome, and by extension what the autism spectrum, is.

But my experience can't be unique. Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome. 
The definition should be narrowed. I don't want a kid with mild autism to go untreated. But I don't want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn't true. 
Benjamin Nugent, the director of creative writing at Southern New Hampshire University, is the author of American Nerd: The Story of My People.

A narrower definition might help avoid misdiagnoses. However, I believe it is already too late to reign in the popular definition.

I realize that some people embrace the label of "autistic" and "Aspie" while I don't get that passionate about the words. But, what if some of the people embracing the words should be embracing "social difference" and not autism?

12 comments:

  1. Aspies — the affectionate name.

    This word for me, belongs in the same bucket as “Retard”.

    How unbelievably offensive to coin an “affection name”, for a brain disorder that leaves me needing daily help to successfully complete even the basic, normal tasks of day to day life?

    After annoying teh Intawebz with my presence for over five years, I had an uncharacteristic brush with personal disclosure and honesty.

    Welcome to the reality of Asperger's Syndrome.

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  2. I never did like "Aspie" but many people do. I also find "Aspergian" odd.

    However, I also don't understand other groups "taking ownership" of labels that are/were offensive. I know several "Queer Studies" scholars, but it still sounds wrong to me.

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  3. Ah, personally I see a qualitative difference between homosexuality and Asperger's Syndrome (AS) - one is a natural variation and the other a pathology.

    Although of course, Neurodiversity also claims that AS is a natural variation, and it is in this group that the term “Aspie” has gained a foot-hold.

    I understand and sympathise with the philosophical underpinning of Neurodiversity - that of the innate worth of a human being - one that is shared with many religions, but they've taken a good idea and run far too far with it.

    The Social Model of Disability which also features prominently in their Canon, while superficially enabling and ennobling, rapidly turns to nonsense in the face serious disability.

    It is another idea that has been picked-up and taken too far - this time by the loathsome UNUM and their spiritual partners in the UK, ATOS Healthcare - and used to deny the very real and limiting disabilities people like me have -simply for the purpose of denying insurance and social security benefit claims.

    Woeful.

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  4. Oh boy, there's a lot going on here.

    With more and more general "awareness" of autism, there are questions. That's a good thing. A healthy amount of skepticism is good.

    Yes, some people are simply different. Being different does not equal autism. Being a nerd, geek, shy, introverted, etc does not equal autism. I think we can all agree on that.

    On the other hand, many (dare I say most?) people genuinely on the autism spectrum ARE different.

    The real problem with articles like these is that they contain a lot of narrative but very little context. And context is extremely important when your audience are people who have little to no general knowledge about autism in the first place. It's really not helpful to the millions of people on the spectrum who are fighting to get basic services and consideration to insert doubt in laypeople's minds about whether their conditions exist at all. Particularly in a culture that's already suffering from severe empathy-impairment, IMHO.

    The other thing I wanted to address is the notion of "pride". I'm pretty sure it's not about celebrating things like social anxiety, panic attacks, inability to read cues, and any of the other issues we face. I think what we're really saying is: "Being autistic does not make me less of a person, or broken, or worthless, or hopeless." You may not understand it or need to do it for yourself, and that's fine, but other people do. Personally, I'm not a huge fan of posthumously diagnosing prominent figures, but I can also understand why some would want to. Some people need to feel they're not alone.

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  5. I'm in two minds about the removal of Aspergers from the DSM. I think it's a mistake because while it won't take away the problems those people experience, it might take away their right to any help they could be entitled to. For that reason it is wrong.

    I understand what you're saying. I read those articles though and I think they are trying to make a fine point with a blunt instrument (to use a very bad metaphor). The thing that I've been very pleased with in recent years is the very concept of there being a spectrum of autism disorders. There is a continuum and you can fall anywhere along that continuum.

    Should that also be considered the case where Asperger syndrome is the diagnosis or should the criteria for that diagnosis be narrowed? I don't think that it should. As always it is degree of impairment in your daily life that should be the yardstick, not the label they have put on you for want of a better term.

    My son has been diagnosed with Aspergers. I have wondered myself if I have it but in my 43 years, that has never been suggested. I believe I have tendencies but not the syndrome. I look at him though and see myself as a six year old. I had a lot of his anxieties and some of his other traits too. I wonder will someone decide one day that he has "grown out" of his diagnosis? What will that mean for him if he does?

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  6. I find this post very problematic and the comments I regret reading.

    First time the word Asperger was used about me was by a neuropsychiatrist from another city that saw me few times, he was a good professional but abusive so I never got the tests finished,I don't have a official diagnosis because Autism is not so easily diagnosed, actually in my city there isn't anyone that knows about Autism in adults, in my country there are very few, I am also female, so I got a diagnosis of depression and social phobia, no one cares that I also have serious problems with daily life activities, I have obvious sensory differences that makes me impossible to go to most places and sometimes I stay in a sensory world, I am unable to speak many times and when I was a child I only talked with my parents, nothing of that is depression and social phobia, but because people say that autism is being overdiagnosed and self-diagnosis is not real I should just accept it and loose all the self-awareness and little ability to survive and adapt I gained alone after I found out about ASD.
    I was more suicidal not knowing what was happening, I was being drugged and treated for something I don't have and now I am a little better, but for many obviously I must be one of those cases of overdiagnosis, I am just a depressed weird woman for many that don't even know me.
    I think it's best to overdiagnose than underdiagnose and I think most people don't get an ASD diagnosis when they are not regular typical American white male child. Did you know a female with an ASD may look like just a lonely kid and have serious problems? It's not my case since I actually do behave in a certain way that if you know what you are looking for it's kind of obvious, but many female autistics look just different, many get misdignosed simply because they are women, there is a lot of bias on this, some diagnosis are common to females for no reason except prejudice.
    Sadly for people that think it's being overdiagnosed I am still autistic without a diagnosis, I was treated for another thing and almost commited suicide, now I am without any help and with people doubting me about it, this is a common story.

    About the people on comments I should say that many people that are obviously seriously disabled with different disabilities take pride in being disabled and in the common culture of disability, believe in the social model but don't deny the reality of the serious difficulties that disability brings, so just because you don't feel the same don't judge.I should mention that homosexuality was considered a pathology by scientists, I am not denying that Autism is a disability that causes limitations but that is not a good point. I don't think you understood Neurodiversity and disability models.

    I hate the term aspie but I would never judge as offensive and never put it together with an opressive label as the r-word that caused people to be locked away and be killed.

    Sorry about my English and long comment I don't have much time to fix it and this is a really hard topic for me.

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    1. I understand, Alicia. I'm also a female on the spectrum and the only reason I was able to get an official diagnosis (as an adult) was being in the right place at the right time. There aren't many qualified professionals in my country who can dx adults - Tony Attwood is famously one of them, but one of a very few. So I don't hold it against people when they say they are self-dx'd.

      I think that people are ultimately entitled to feel however they like about their own human condition. If someone doesn't want to use the word "Aspie" or "Aspergian" or whatever, fine. If someone wants to be cured, fine. But they don't get to tell other people that they should feel the same way about themselves. If I want to call myself Aspie and Queer (and I have my reasons), I will.

      To be honest, I don't understand the either/or difference versus disability train of thought that many people have. Why can't it be both? Sure, it's not both for everyone, but it is for a lot of people. In fact, we could say that any disability is by definition also a difference.

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  7. @outoutout we're really saying is: "Being autistic does not make me less of a person, or broken, or worthless, or hopeless./ I go with that at full volume.

    @Alica, a woman in your position is very likely to end up getting a Borderline Personality Disorder diagnosis in the UK. It is the ultimate way to shut a demanding woman up. Psychiatrist use in now instead 19c. Female Hysteria.

    now I am without any help and with people doubting me about it, this is a common story

    Even after diagnosis, I was diagnosed by Simon Baron Cohen in 1999, however I have to go through the most terrifying experience recently as my care team attempted to get rid of my by having me diagnosed with schizophrenia.

    It is quite possible that I do not understand completely, or even partly the philosophy of Neurodiversity.

    That you for your English. What's you're native language?

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  8. "About the people on comments I should say that many people that are obviously seriously disabled with different disabilities take pride in being disabled and in the common culture of disability, believe in the social model but don't deny the reality of the serious difficulties that disability brings,"

    People with severe autism with its co-morbid intellectual disability don't take pride in being disabled or partake in "disability culture". I've spent the last 8 years trying to teach my son the meaning of such concepts as "why, what, how, when".

    I'm not sure what severe disability you are discussing, but it isn't severe autism.

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  9. My daughter was diagnosed by a very experienced psychologist in the Autism Asperger field at the age of 21 and the "label" fits her perfectly..It is not just social problems, but sensory difficulties, very very very hypersensitive to sounds,smells, tastes, ,,, absolutely no good at managing every day skills such as personal care, finances, needs to have written instructions, cant take in verbal instructions,,, is disinterested in fashion, smalltalk, chitchat, has no idea what makes the social world tick....

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    1. She sounds much like my son. He wants so badly to just be normal and to have friends. My son also has motor skill, processing speed and spatial awareness difficulties. When I found that out it made perfect sense why teaching him to drive has been so incredibly difficult. (still working on the driving thing)

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  10. I agree that overdiagnosing can be as serious a problem as underdiagnosing, but I wonder where to draw the line at "pathologizing". It seems that concerning most subjects like these, society swings too far one way, then tries to overcompensate and ends up too far on the other side. Until 1994 we had never heard of Asperger Syndrome as a real problem, so to make up for the "neglect" of those with the disorder, the psychologists started diagnosing everyone on the street with it. Now it's only a matter of time before the excitement dies down, and in the wake of the overdiagnosis, no one will want to admit when someone really does have the problem.
    As far as labeling goes, I for one am of the opinion that it can be a good thing. I'm in the process of getting diagnosed one way or the other, neurotypical or "aspie" because my entire life I felt different, weird, like I didn't belong, and for a long time it's been important for me to find out "what's wrong with me." If I have the disorder, it means there's a reason for my "freakishness" that I'm not just weird because I'm weird, and if I don't, well, I'll cross that bridge when I come to it.

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