Field of Science

Writing about disability: No science, no disabled point of view? No good


Image via WikiMedia Commons. Originally posted to Flickr.

A flurry of articles has emerged in the last few weeks in which mental health professionals voice opinions about developmental disorders without providing scientific evidence to support them. Opinion is fine, except that these articles deliver it as gospel straight from the expert's mouth while not providing an iota of scientific findings as a basis. Because the opinions relate to a developmental disorder in children, these writings carry not only the great weight of being vague and unsupported, but they also carry the even greater weight of damaging real people with real developmental disorders. 

In these articles--one in the New York Times and authored by a psychiatrist and the other at the Daily Beast and quoting a handful of mental health practitioners--the tone is that people with an Asperger’s diagnosis are just quirky folk who don’t have anything sufficiently disabling to be considered to have a disorder. The misunderstanding of diagnostic criteria or even of what Asperger’s actually is makes both of these pieces worthless in terms of information. The fact that neither of them quotes a person with Asperger’s or the parent of a child with Asperger’s means that all the reader gets from them is the bias of the writer. 

Each piece works hard, using generalizations and misinterpretations, to make sure that the public will perceive any human being walking around right now with an Asperger’s diagnosis as a diagnostic fraud who is undeserving of supports of any kind, who is simply odd or quirky and taking advantage of a "diagnosis du jour." In other words, these articles with their clear bias and their lack of factual information do very real harm to real people who really have a developmental disorder. And that pisses me off because one of those people is my son.

In the Daily Beast article, writer Casey Schwartz provides us with a master class in using generalizations without specifics to back them up. The article opens by saying about Asperger's that "no one has been able to agree on what it is." That's odd because there's this book, a manual really, called The Diagnostic and Statistical Manual of Mental Disorders IV-Text Revision (DSM-IV-TR), that explicitly lays out what Asperger's Disorder is. It lists the criteria that a person must meet for the diagnosis. Why the profession whose manual this is can't agree on it escapes me, but then I don't see any evidence in this article supporting the assertion that "no one has been able to agree on what it is," although it seems to contain evidence that at least two diagnosticians can't agree on what it isn't. 

The writer quotes Lorna Wing as saying that Asperger's kids are "active but odd." I can't tell why that quote is in there. What does it tell you about Asperger's, its alleged overdiagnosis, the diagnostic confusion around it? Nothing.

Then this kicker: "They don't have the language or cognitive impairments seen in autistic disorder." See, this is when doing a little research can help a lot. That statement is simply untrue. The diagnostic criteria for Asperger's are that there should be no language delay. Children with Asperger's have been identified as having problems with receptive language, the form of language that you hear and then process so that you understand the meaning of the words the other person is saying. You can see, yes, how that deficit might be important in social interaction, how it's not just "quirky" to have a processing problem in the context of interpreting spoken language. 

Schwartz then goes on to say that people with Asperger's have a "social handicap." Here, I refer the writer to the National Center on Disability and Journalism's Website, which parses the use of appropriate and inappropriate terms when writing about disability, including the word "handicap." Pro-tip: If you're going to write about disability, don't use the word "handicap." I can't stop there because in the next phrase, she writes, "the inability to relate normally to others." 'Nother pro-tip: Don't talk about normal. There is no such thing as "normal." "Typical" is the appropriate term here if one must be used.

And lo, another generalization: "Many doctors feel that the introduction of Asperger's syndrome enriched clinical thinking..." How many? What is the source for this statement? I don't disagree but isn't it journalism 101 not to generalize, generally?

Following that introductory natter intended to set the stage for how flotsammy and jetsammy an Asperger's diagnosis is, we then move on to...Nazis. Several grafs devoted to hearsay from one person--hearsay that according to the article itself could not be confirmed--about the possibility that Hans Asperger was a Nazi. What that has to do with diagnosing people with a developmental disorder, I'm not clear. 

The fact is that there is no support whatsoever for the rumor and that Asperger in fact may have been just the opposite. A colleague of his, according to the source linked in the previous sentence, stated that Asperger "had a very clear standpoint against the Nazis." Indeed, in his paper, he argued fervently for the social importance of these "little professors" he'd identified, taking a very strong anti-eugenics stance. This information was not hard to find. Why the hinting at "Asperger was a Nazi"? What does that even have to do with the developmental disorder itself? 

At this point, we are near the end of this article, and what do we have so far? An incorrect characterization of Asperger's, some unsupported generalizations, and the introduction of Nazis for no apparent reason. Has this last invoked Godwin's law? Should we stop there? 

But hark. More generalizations remain. "Many doctors believe Asperger's is significantly overdiagnosed...." In this statement, the writer links to this post at the New York Times, authored by psychiatrist Paul Steinberg. Does he have multiple personality disorder? How is this one guy "many doctors?" Steinberg, in his post, does the same disservice that these "j'accuse diagnosis du jour" screeds always do: They rely on vague accusations, no data, and tar everyone who has that diagnosis as frauds in the public mind. Thanks for that, man.

In his article--which was extraordinarily controversial in the already controversial world of the autism community--Steinberg and his presumed many doctor selves write that, "Social disabilities are not at all trivial, but they become cheapened by the ubiquity of the Asperger diagnosis, and they become miscast when put in the autism spectrum." Ah, er, hem. Isn't a key deficit of autism--any form of autism--the social deficit? Social deficits take up the vast majority of criteria related to diagnosing autistic disorder. How are they miscast when included on the autism spectrum?

Steinberg and his many doctor selves continue on, saying, "These men (with Asperger's) are able to compensate more completely than a truly autistic child or adult whose language deficiencies and cognitive deficits can often put him at a level of functioning in the mentally retarded range." I guess the good doctor (a) hasn't gotten the memo that the phrase is now "intellectually disabled" or that (b) intellectual disability isn't required for an autism diagnosis. According to the CDC, an average of 41% of people with autism also have an intellectual disability, and that value [ETA: meaning the value of 41%] doesn't include people with Asperger's, as intellectual disability excludes that diagnosis. That means the majority of people with autism do not have intellectual disability, whether they have inclusive of people with autistic disorder or Asperger's. In addition, new data are showing that people with autism may test as intellectually disabled on some tests but not on others and that the mode of testing matters

In other words, Steinberg, in addition to insulting specific autistic people he names in his article, also seems to lack an understanding of autistic people in general. 

But let's return to the Daily Beast article. That piece closes with what turns into a puff profile of Bryna Siegel, a child development PhD at my postdoc alma mater, the University of California, San Francisco. Siegel has a...reputation in the autism community. In this piece, she's quoted as saying that she undiagnoses 9 out of 10 of the people who come to her clinic with an Asperger's diagnosis. Really? While studies suggest that the overlap between what has been called high-functioning autism and Asperger's has confused the diagnostic issue, they don't show that people are wrongly diagnosed as being on the spectrum. How is it that 9 of 10 people who show up in Siegel's office aren't misdiagnosed in terms of placement on the spectrum but instead just...aren't on it at all? 

If you went to a doctor and found that this doctor overturned 90% of diagnoses of other practitioners in the field...what would your reaction be? Mine is that this rate of undiagnosis implies a crusade or that practitioners in that area really really suck at what they do and that Dr. Overturn is some kind of medical savior, an oasis in a howling wilderness of local misdiagnosis. Oh, thank God she's there to save us. 

Actually, Siegel lists her specialty as "differential diagnosis of autistic spectrum disorders and linking diagnostic assessment and treatment planning." Not autism spectrum disorder, but differential (as in alternative) diagnosis of autism spectrum disorder. Now that's specialized. No wonder her rates of undiagnosis are 9 out of 10. That's her clientele. Using her experience as an example for poor diagnosis is like using cats as an example of the growing preference for catnip.

It's odd that Siegel has this power, especially in light of recent studies showing that people diagnosed with Asperger's may have distinct structural differences and white and grey matter distributional differences. This diagnosis isn't an exercise in Freudian theory. It's not something that any doctor can giveth and then taketh away. It's a developmental difference that you have or you don't, and I'd argue that given that, there's no good reason (a) for mental health professionals to be involved in its diagnosis at all and that (b) the best diagnosticians for it are developmental pediatricians specialized in addressing developmental disorders.  

I've got to coin a new law for what comes next. This accusation appears so much in these kinds of articles that there really needs to be a name for it. Siegel says:
“I think part of the proliferation of the Asperger’s diagnosis is that if you say that a kid has oppositional defiant disorder, and especially if you say that about a normally intelligent upper-middle-class kid, parents don’t like to use the word 'oppositional' and they don’t like to use the word 'defiant' and they don’t like to use the word 'disorder.' And ‘Asperger’s’ just sounds so much more neutral. It doesn’t have any connotations … It’s a name, it’s not a descriptive term.”
Wow. I'm going to call this Emily's Law. It's the law that if your child has a developmental disorder and you're middle class, eventually someone will accuse you of being in denial about the real nature of your child's problem, which boils down to either your bad parenting or oppositional defiant disorder (ODD). By the way, if you look at the diagnostic criteria for ODD, you'll wonder how any practitioner who can read would ever conflate it with autism of any kind. My son never showed any of these behaviors before being diagnosed with Asperger's at age 3...or after, for that matter.

Another mental heath professional quoted in the piece, Pete Szatmari, says he undiagnoses 50% of the people he sees. So he and Siegel are even separated from one another in their diagnostic (undiagnostic?) rates by 40%. 

In the Daily Beast beast, Siegel describes the flood of calls that came to her office after Wired magazine published an Asperger's questionnaire. She says that she told her intake coordinator, "If they leave you the number of their secretary to call back, do not call them back." Funny. I don't remember reading anything in the DMS-IV-TR criteria about "having a secretary" as being an exclusion criterion. Does she include these people she ignored as part of her "undiagnosis" rates?

And my take-home from that comment--were I to buy it--would be that any hope we have for our son to be successful is a false hope. After all, based on this comment, he either has Asperger’s and never would be successful enough to have an administrative assistant (never mind that people with executive function skills, like, you know, administrative assistants may be the perfect complement to people like my son) or he doesn’t have Asperger’s and deserves to be blackened with the same dismissive “you’re just quirky and whiny” brush that these pieces seek to tar all Aspies with.

Given that Siegel and Szatmari can't even agree on their undiagnosis rates, looks to me like these folks need to stop blaming people with a developmental difference for having the temerity to have it and look to their own profession for how badly and inconsistently it is practiced or unpracticed. If members of their profession can't apply criteria consistently, does the fault actually lie in the criteria--or in the profession? And if they're so hopeless at the entire process, at using that doorstop of a manual provided as guidance, why should we trust them to rewrite that manual, to write trustworthy articles about diagnosis, to serve as reliable sources in any way? 

But how bad is it in the profession, I ask? Where are the published data showing that 9 out of 10 or 5 out of 10 or any children are misdiagnosed with Asperger’s and shouldn't be diagnosed on the spectrum at all? Indeed, the literature I find points to people with Asperger's as being misdiagnosed with other, non-spectrum disorders when their real diagnosis is Asperger's or just being diagnosed as somewhere else on the spectrum. There also are tested scales that also help in refining and distinguishing the diagnosis--the DSM-IV criteria aren't the only tool.

Without those data demonstrating the claims, articles like these do only harm. How? Children like my son, who has the Asperger’s diagnosis--and who also has receptive language problems, learning differences, stereotyped behaviors, fixations on acorns, patterned grimaces, echolalia, motor delays, and flaps--gets packaged in the public mind with these vague accusations of fakery. He is not faking it. His autism has been with him since birth. A professional referred him. We did not “seek a diagnosis.” He was, appropriately I think, considering the disarray among people whose professional designations begin with “psych,” diagnosed by a developmental pediatrician, someone with medical training explicitly related to developmental orders.

Finally, I close with the observation that neither one of these pieces presuming that Asperger's is nonexistent fakery managed to include insight from people with Asperger's or parents of people with Asperger's. And here's some anecdata: I've met a lot--a lot--of people who are diagnosed with Asperger's. They aren't just "quirky." They have real deficits in motor function, social function, and receptive language function, they have learning disabilities, and they exhibit stereotyped behaviors and unusual fixations. They're clearly people on the spectrum, not just odd or quirky or lovably absent minded. The learning differences that come with Asperger's are very real. The receptive language problems are not just a quirk. The flapping and the echolalia are not just oddities. Just because there's confusion about placement on the spectrum doesn't mean that a person isn't on it.

Finally, you know what I think? (You probably do if you've read this far). I think that when you write an article about disability and diagnosis, it's ableist and inappropriate not to include whenever possible insight from the people who themselves have that disability. And I think that psychiatrists should look to their own house and the biases they bring to it before they start publicly vilifying by association someone who lives in mine. 

21 comments:

  1. Emily, after having read so many of your brilliant articles, I have to say that this is one of your finest. Everything in it so badly needs to be said. From the bottom of my heart, thank you for writing it.

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  2. yay yay yay! Thank you, thank you, thank you!!!

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  3. Brilliant as usual! I read this same article yesterday after getting that form letter from the APA about the DSM5 changes and I was just beside myself!
    Just a few comments
    1) when I read the part about not having problems with language. I have noticed (haven't done study or scientific research, just noticed) that my son, myself & other aspies I tweet with that we all struggle with getting the correct word. And I mean simple words. I buy an iced latte. I know what a straw is, I know I need a straw, I know how to ask for one and have many times but sometimes in that moment I blank on the word. (Yes I know lots of people blank on words but I do this multiple times a day) I literally asked the barista for a "thingy-thing" since I am an addict and there every day she just laughed it off and handed me a straw. My son does this even more often than me.

    2) I laughed at the "if they have a secretary". I could not survive at work without one. I am so incredibly dependent on my assistant because I can't organize myself. Lacking executive function as you said!

    3) My son has displayed what adults view as defiant. In a noisy cafeteria and a child upset him he hid under a table & refused to come out. Many other examples but all go back to a sensory or some other trigger that caused him to shut down and or become non-verbal. The problem is that people who do not understand the triggers or what shutting down/melting down looks like they think they are being insubordinate. That is lack of understanding the disorder, not the child being defiant. Whenever someone bothers to figure out what is bothering my son he always complies with anything that is asked of him.

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    1. I didn't know this inability to find the correct word - which I also exhibit (but not my diagnosed son) - was an Apsie trait. Thanks for that.

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    2. My Aspie father was constantly struggling to find the right word. In every single conversation, he would say, multiple times, "Oh, what's that word I'm looking for?" in a tone of exasperation and exhaustion.

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    3. I'm always doing the same thing, and the word will be "filed" under the right letter but not surface in time for me to use it, or I'll conflate the weirdest things (my best ones are screwdriver for remote control and sleeping bag for backpack).

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    4. I have constant issues with getting the correct word, but I don't have AS, although I do have ADHD, inattentive type. My ADHD son also has the exact same problem, and he was very thoroughly screened for AS since there is a family history. I don't think it is an AS-specific thing, although it may (or may not) be a brain difference thing.

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  4. ...and this is why we both love and admire you. Thanks you for standing on the side of laser-beam critical thinking and analysis.

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  5. Your information about autism and intellectual disability is misstated.

    The CDC conducted two surveys 2004 and 2006 which found that amongst all persons with Autism Spectrum Disorders INCLUSIVE of Aspergers 41 and 44 % were found to have associated intellectual disabilities. The figures for DSM-IV Autistic Disorder (which does not include Aspergers) range from 70-80%. CDC autism expert Dr. Marshalynn Yeargin-Allsopp referred to the pre-DSM-IV autism (ie exclusive of Aspergers)and stated that the vast majority had intellectual disabilities (Canadian Medical Association Journal)

    Sources referencing the strong association between intellectual disabilities and Autistic Disorder (again, exclusive of Aspergers) can be found on my blog at:
    Facing Autism in New Brunswick: Autism Disorders and Intellectual Disability: Sources #1

    http://autisminnb.blogspot.com/2010/08/autism-disorders-and-intellectual.html

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  6. So good to read, especially in light of a recent article in the Irish Examiner blaming Autism on bad parenting http://www.facebook.com/notes/irish-autism-action/core-connection-an-article-in-printed-edition-of-irish-examiner-3rd-feb/359928427353789
    Your article helped me to understand how generalisations and lack of scientific references reduce the linked article to opinionated rubbish.
    XXX

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  7. Absolutely spot-on! Brilliant arguments, terrific writing!
    Thank you, thank you, thank you!

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  8. Excellent piece, Emily. Really. Your comment to me about the damage done by professionals was very helpful, and this will be, too. But I cannot agree that these pieces would have been improved substantially by talking to the PARENTS of people with Asperger's syndrome. Parents cannot speak for people with the condition unless they have it themselves. There is not even the excuse when speaking of people with Asperger's syndrome of a language deficit for someone to make a comment like this. Reporters really don't call PFLAG for an opinion when reporting on general interest stories about gay people, and they shouldn't. This would be a small point if it were not one that recurred frequently in your otherwise superb work.

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  9. @Harold Looking back, I see I didn't phrase that well. I mean that the 41% couldn't include people diagnosed with Aspgerger's as ID is an exclusionary criterion.

    @landon The mention of parents is a journalistic consideration. When you malign someone in a piece or include comments from someone doing that, it's typically considered appropriate to go to the malignee and get their perspective.

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  10. Thank you. Your rebuttal of the New York Times opinion piece is balm to my wounded soul. I am grateful that I didn't encounter The Daily Beast piece. I wrote an opinion piece myself for Straightgoods.ca about the DSM changes but found it hard to stay objective. The accusation of vague diagnostic criteria just flabbergasts me. My own oldest boy has a PDD-NOS diagnosis and I find that being described as likely to become a Social and Communication Disorder. I guess that means that all his other challenges will magically disappear. So many good points in your article, especially the assertion that middle class parents are seeking out unjustified diagnoses because we all know how much fun it is to have a child who needs extra help . . . Thanks again, @AutismReads

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  11. Wonderful, Emily!! This is a brilliant piece and very much appreciated.

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  12. Wonderful textual analysis. I have struggled with this whole debate because I have such difficulty with the labels (all of them) and our means of defining/socially constructing through them (usually a process led by the scientific establishment, particularly psychologists). Once again the professionals are dividing and separating with labels (this time by taking away one, re-categorizing, renaming, redefining)... labels that carry such amazing power in the system and over the individual...and who gets hurt? Not the professionals.

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  13. Beautifully, wonderfully, smartly written. Thank you.

    I keep pointing out to people that we are having the wrong discussion, for the most part, and that, as you say here, we do not belong in the DSM, no matter the edition number, Roman or otherwise. HA!

    A developmental disorder is NOT a mental illness. I am not ill. I am different.

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  14. Thank you. Just...thank you. I will be sharing this widely.

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  15. Couldn't agree more with what you are saying - I had read one of those articles and couldn't believe how bad it was.

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