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conuly
http://www.nytimes.com/2010/02/10/opinion/10grinker.html
Disorder Out of Chaos
By ROY RICHARD GRINKER
Washington
IF you ask my daughter, Isabel, what autism means to her, she won’t say that it is a condition marked by impaired social communication and repetitive behaviors. She will say that her autism makes her a good artist, helps her to relate to animals and gives her perfect pitch.
The stigma of autism is fading fast. One reason is that we now understand that autism is a spectrum with an enormous range. Some people with autism are nonverbal with profound cognitive disabilities, while others are accomplished professionals.
Many people with milder symptoms of autism have, for the past 20 years or so, received a diagnosis of Asperger’s disorder. Some autistic adults call themselves “Aspies” to celebrate their talents and differences. And many parents have embraced the label because they have found it less stigmatizing, and so it has eased their sense of loss.
This may soon change, however. The American Psychiatric Association, with its release this week of proposed revisions to its authoritative Diagnostic and Statistical Manual of Mental Disorders, is recommending that Asperger’s be dropped. If this revision is adopted, the condition will be folded into the category of “autism spectrum disorder,” which will no longer contain any categories for distinct subtypes of autism like Asperger’s and “pervasive developmental disorder not otherwise specified” (a category for children with some traits of autism but not enough to warrant a diagnosis).
The change is welcome, because careful study of people with Asperger’s has demonstrated that the diagnosis is misleading and invalid, and there are clear benefits to understanding autism as one condition that runs along a spectrum.
When the American Psychiatric Association first recognized Asperger’s disorder in 1994, it was thought to be a subtype of autism. As the diagnosis became more common, it broadened the public understanding of autism as a spectrum. It helped previously undiagnosed adults to understand their years of feeling unconnected to others, but without bestowing what was considered the stigma of autism. And it helped educators justify providing services for children who, in the past, might have been unappreciated or even bullied because of their differences, but received no help from teachers.
It’s no longer a secret that people with autism can have careers and meaningful social relationships. Witness the spate of recent movies, from HBO’s “Temple Grandin,” about a woman with autism who became an animal scientist famed for her designs of humane slaughterhouses, to “Mary and Max,” an animated feature about a friendship between a 44-year-old man with Asperger’s and an 8-year-old girl.
But a culturally meaningful distinction isn’t always a scientifically valid one. Almost everyone with Asperger’s also fits the profile of the more classic autistic disorder. Indeed, in the current diagnostic manual, a child who has good language acquisition and intelligence qualifies as autistic if, in addition to having restricted interests and problems with social interactions, he has just one of the following symptoms, which are common among children with Asperger’s: difficulty conversing, an inability to engage in make-believe play or repetitive or unusual use of language. Even the best available diagnostic instruments cannot clearly distinguish between Asperger’s and autistic disorder.
People who now have a diagnosis of Asperger’s can be just as socially impaired as those with autism. So Asperger’s should not be a synonym for “high functioning.” Likewise, people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s — in art, music and engineering, for example — and can communicate if given assistance.
Moreover, large epidemiological studies have demonstrated that mild symptoms of autism are common in the general population. In particular, scientists have found that family members of a child with autism often exhibit isolated autistic traits. With autism, as with many medical diagnoses — like hypertension and obesity — the boundary lines are drawn as much by culture as by nature. Dividing up the workings of the mind is not as neat and orderly as categorizing species.
The proposed new diagnostic criteria, by describing severity and functioning along a single continuum, would also capture the often unpredictable changes among children with autism. When Isabel was 3, she had all the symptoms of autistic disorder, but if she walked into a doctor’s office today as a new patient — a chatty, quirky high school senior — she would more likely be given a diagnosis of Asperger’s disorder. Narrow diagnostic categories do not help us understand the way a person will develop over time.
We no longer need Asperger’s disorder to reduce stigma. And my daughter does not need the term Asperger’s to bolster her self-esteem. Just last week, she introduced herself to a new teacher in her high school health class. “My name is Isabel,” she said, “and my strength is that I have autism.”
And look, there's letters!
I won't quote every letter in its entirety, but let's look at some of them....
Different cancers need to be treated differently, for example, as do different forms of epilepsy. A potential treatment to which severe autism will respond, but to which “pervasive developmental delay” or Asperger’s will not, will never be known if clinical trials do not separate different forms of “autism.”
Really? You had to go there with the cancer analogy? SERIOUSLY? Why is it always cancer? Let's go somewhere different for a change. Maybe ebola. Ebola might be nice. Why does it have to be cancer, every time?
In more than 40 years of practice as a child psychiatrist, I have found it more fair and reasonable to “label” someone as a “quirky kid” who may need some social training skills, rather than offering a medical diagnosis.
At the same time, I am aware that funding is not available for “quirkiness” and that some parents much prefer a diagnosis. But the latter is often because parents then feel less responsible for their child’s difficulties.
You, uh, you get many patients with that attitude of yours? I'm asking cause, you know, I wouldn't pay you. I'm just saying.
Well, that was an amusing (more or less) two minutes. Time to go poke Evangeline and see if she's ready to wake up from her nap, I guess.
Disorder Out of Chaos
By ROY RICHARD GRINKER
Washington
IF you ask my daughter, Isabel, what autism means to her, she won’t say that it is a condition marked by impaired social communication and repetitive behaviors. She will say that her autism makes her a good artist, helps her to relate to animals and gives her perfect pitch.
The stigma of autism is fading fast. One reason is that we now understand that autism is a spectrum with an enormous range. Some people with autism are nonverbal with profound cognitive disabilities, while others are accomplished professionals.
Many people with milder symptoms of autism have, for the past 20 years or so, received a diagnosis of Asperger’s disorder. Some autistic adults call themselves “Aspies” to celebrate their talents and differences. And many parents have embraced the label because they have found it less stigmatizing, and so it has eased their sense of loss.
This may soon change, however. The American Psychiatric Association, with its release this week of proposed revisions to its authoritative Diagnostic and Statistical Manual of Mental Disorders, is recommending that Asperger’s be dropped. If this revision is adopted, the condition will be folded into the category of “autism spectrum disorder,” which will no longer contain any categories for distinct subtypes of autism like Asperger’s and “pervasive developmental disorder not otherwise specified” (a category for children with some traits of autism but not enough to warrant a diagnosis).
The change is welcome, because careful study of people with Asperger’s has demonstrated that the diagnosis is misleading and invalid, and there are clear benefits to understanding autism as one condition that runs along a spectrum.
When the American Psychiatric Association first recognized Asperger’s disorder in 1994, it was thought to be a subtype of autism. As the diagnosis became more common, it broadened the public understanding of autism as a spectrum. It helped previously undiagnosed adults to understand their years of feeling unconnected to others, but without bestowing what was considered the stigma of autism. And it helped educators justify providing services for children who, in the past, might have been unappreciated or even bullied because of their differences, but received no help from teachers.
It’s no longer a secret that people with autism can have careers and meaningful social relationships. Witness the spate of recent movies, from HBO’s “Temple Grandin,” about a woman with autism who became an animal scientist famed for her designs of humane slaughterhouses, to “Mary and Max,” an animated feature about a friendship between a 44-year-old man with Asperger’s and an 8-year-old girl.
But a culturally meaningful distinction isn’t always a scientifically valid one. Almost everyone with Asperger’s also fits the profile of the more classic autistic disorder. Indeed, in the current diagnostic manual, a child who has good language acquisition and intelligence qualifies as autistic if, in addition to having restricted interests and problems with social interactions, he has just one of the following symptoms, which are common among children with Asperger’s: difficulty conversing, an inability to engage in make-believe play or repetitive or unusual use of language. Even the best available diagnostic instruments cannot clearly distinguish between Asperger’s and autistic disorder.
People who now have a diagnosis of Asperger’s can be just as socially impaired as those with autism. So Asperger’s should not be a synonym for “high functioning.” Likewise, people with autism who are described as “low functioning,” including those without language, can have the kinds of intelligence and hidden abilities that are associated with Asperger’s — in art, music and engineering, for example — and can communicate if given assistance.
Moreover, large epidemiological studies have demonstrated that mild symptoms of autism are common in the general population. In particular, scientists have found that family members of a child with autism often exhibit isolated autistic traits. With autism, as with many medical diagnoses — like hypertension and obesity — the boundary lines are drawn as much by culture as by nature. Dividing up the workings of the mind is not as neat and orderly as categorizing species.
The proposed new diagnostic criteria, by describing severity and functioning along a single continuum, would also capture the often unpredictable changes among children with autism. When Isabel was 3, she had all the symptoms of autistic disorder, but if she walked into a doctor’s office today as a new patient — a chatty, quirky high school senior — she would more likely be given a diagnosis of Asperger’s disorder. Narrow diagnostic categories do not help us understand the way a person will develop over time.
We no longer need Asperger’s disorder to reduce stigma. And my daughter does not need the term Asperger’s to bolster her self-esteem. Just last week, she introduced herself to a new teacher in her high school health class. “My name is Isabel,” she said, “and my strength is that I have autism.”
And look, there's letters!
I won't quote every letter in its entirety, but let's look at some of them....
Different cancers need to be treated differently, for example, as do different forms of epilepsy. A potential treatment to which severe autism will respond, but to which “pervasive developmental delay” or Asperger’s will not, will never be known if clinical trials do not separate different forms of “autism.”
Really? You had to go there with the cancer analogy? SERIOUSLY? Why is it always cancer? Let's go somewhere different for a change. Maybe ebola. Ebola might be nice. Why does it have to be cancer, every time?
In more than 40 years of practice as a child psychiatrist, I have found it more fair and reasonable to “label” someone as a “quirky kid” who may need some social training skills, rather than offering a medical diagnosis.
At the same time, I am aware that funding is not available for “quirkiness” and that some parents much prefer a diagnosis. But the latter is often because parents then feel less responsible for their child’s difficulties.
You, uh, you get many patients with that attitude of yours? I'm asking cause, you know, I wouldn't pay you. I'm just saying.
Well, that was an amusing (more or less) two minutes. Time to go poke Evangeline and see if she's ready to wake up from her nap, I guess.
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no subject
Date: 2010-02-15 10:02 pm (UTC)no subject
Date: 2010-02-16 01:17 am (UTC)LOL, we're not cancer patients, we're mutants.
no subject
Date: 2010-02-16 06:09 am (UTC)Secondly, most cancers either are or are caused by mutations.
no subject
Date: 2010-02-16 06:37 am (UTC)Every one of them inevitably reminds of that one influential person who said that cancer is better than autism because kids with cancer die, and autistic kids don't. I'm not even making this shit up. No exaggeration, no hyperbole. I can't remember who exactly, but you can look it up or I will in the morning. This got a fair amount of press at the time, because it was so offensive not just to autistics but to anybody who has lost a child to cancer (or for any other reason, really).
And of course that lovely comment is not alone, but is in a whole tradition of some of the sillier curebies stating that they'd rather have a child dead of measles or mumps than an autistic child.
This, of course, is in the greater context still of parents of autistic children talking about how they have contemplated killing their children or, of course, outright killing the children without talking about it. And it's a sad fact that people who kill their disabled (including autistic) children often get lighter sentences and more sympathy than people who kill their, well, normal children.
It's fine for you not to know the context, but I'd assume that somebody who is the "director of the Division of Statistical Genetics, Mailman School of Public Health, Columbia University" should be educated enough to know the major trigger comments for this subject before he talks about it.
All this doesn't even mention how comparing autism to cancer is inappropriate because autism is not a disease. It's not catching, and you're not sick anyway, and neither would you be better off dead. But occasionally autism has been compared to kidnapping and to AIDS, so, you know, it's not *actually* better than cancer to make the other comparisons. (And it really *is* always cancer people compare it too, or almost always. It's meme-y.)
no subject
Date: 2010-02-16 08:45 am (UTC)no subject
Date: 2010-02-16 08:35 am (UTC)As far as I know, cancer does not confer any adaptive advantages on those who have it. In striking contrast, the fundamental characteristics of autism are the Three Faery Gifts of hyper-perception, hyper-attention and hyper-memory (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2518049/), all of which confer very definite advantages, but also have significant down-sides for the individual.
The only 'cure' for autism is eugenics, AKA genocide: identify the unwanted genes, abort or sterilize the unwanted children. Unfortunately, this would also cure genius, because those same 'unwanted' genes are where it comes from. Kinda gives a new twist on that old saying, "When evolution is outlawed, only outlaws will evolve."
no subject
Date: 2010-02-16 04:20 pm (UTC)no subject
Date: 2010-02-15 10:32 pm (UTC)no subject
Date: 2010-02-16 12:56 am (UTC)As long as they don't need an Official Diagnosis in order to get any sort of accommodation or services. If they do, they're screwed, because they won't be able to get one.
This has nothing to do with "removing stigma". It's about removing services, denying access, a form of triage in a frightened economy that doesn't want to pay for public health, education or disability services at all, let alone for weirdo slackers who are probably just malingering anyway.
That's what all this is really about, whatever mealy-mouthed ratioanales may be proffered. They want to cut the Aspies out of their diagnostic criteria and only keep the 'Kanner autistics' they used to have. Of course they can't come right out and say "Don't expect any help from us unless you're so profoundly impaired that it's obvious you will die unless someone else takes care of you", but that's what they mean.
It's pretty-much the same as deciding to eliminate the various diagnostic categories of visual or auditory impairments and just lump them all under "Blindness" and "Deafness". Then kids who can see well enough to get around without a guide-dog won't be cluttering up the doctor's offices trying to get glasses, and kids who can hear well enough to have learned to talk will not be wasting teachers' times with requests for materials in text.
I see our being cut out of the diagnostic categories as a good thing actually. The whole Disorder Diagnosis game is a scam to begin with. People who buy into it have supporting the corrupt and broken psychiatric establishment in hopes of getting some protection from the corrupt and broken public school system, the corrupt and broken employment market, the corrupt and broken public assistance system, and the incredibly corrupt and broken legal system. Now those people are being cut loose - thrown to the wolves, basically - and hopefully a lot of them will now get the clue that supporting corrupt and broken power-structures is a bad idea.
Damn straight, being Aspie is not a disorder. It's a perfectly normal difference, just like being gay, and what we need is not medical diagnoses, but political activism to end the discrimination against us. It's time for us to stop letting neurotypical shrinks and self-proclaimed experts define us, and instead take a stand and define ourselves.