Dissing the Disabled Without Data: A Biologist Mom Punches Back

This guest post is by biologist and writer Emily Willingham, who first published it yesterday at The Biology Files. I asked her if I could post it here because it speaks to the importance of writing about behavioral science in a way that draws on data carefully rather than casually or by convenience to one’s argument; an attempted corrective somewhat in the spirit of my own. Enough With the ‘Slut Gene’ Already: Behaviors Ain’t Traits.

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Dissing the Disabled Without Data: A Biologist Mom Punches Back

by Emily Willingham

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’shave 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 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 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.

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Guest contributor Emily Willingham is a biologist, a writer, and a founder of the blog network Double X. She keeps her own blog at The Biology Files and writes for publications including Slate, Backpacker, and the Scientist. She is the author of The Complete Idiot’s Guide to College Biology, When Worlds Collide: The Troubled History of Bears and People in Texas, and a book-in-progress about lice. 

Image via WikiMedia Commons. Originally posted to Flickr.

13 responses

  1. Excellent article. Thank you for reprinting it. My son was diagnosed with Aspergers in elementary school, and fortunately had the benefit of a school district that “gets it.” He continues to have challenges on a social level, however, he will graduate from Westminster College in Fulton, Missouri this May.  Westminster has a wonderful support program for Aspergers students. But now he must deal with the job market… I am sure an adventure awaits. 

  2. It is not the
    professionals who are getting autism wrong, it is some of the activist adults
    with Aspergers, themselves.  The neurodiverse
    movement is made up of self-advocating people who define themselves as being on
    the high-functioning end of Asperger Syndrome. They have worked very hard and
    persistently to get autism redefined as mostly about Aspergers, people like
    themselves.  The neurodiverse oppose efforts
    to cure autism. They have harassed scientists doing research into the cause of autism
    and have battled parents in court seeking behavioral therapy for their lesser
    functioning kids. Autism is compared to being gay: one is born that way and
    they do not need to be fixed, only socially accommodated. This is a painfully
    flawed analogy. 

    By folding
    Aspergers into the autism spectrum, the upcoming DSM is reaffirming that autism
    is a disability, an infirmity that goes far deeper than issues of social inequality. The
    trivialization of autism done by the neurodiverse movement hurts the rest of
    people on the autism spectrum . May we see the end of this political movement
    that seeks to do so when Aspergers-the disability gets folding into Autism
    Spectrum Disorders, the spectrum of disability. 
    Autism is treatable and those who suffer it need the public’s
    understanding and support for the dire affliction it is.
     

    • Would you be able to provide links to examples of neurodiversity advocates harassing scientists doing research into the causes of autism and battling parents seeking behavioral therapy for their children? Also, can you please provide links demonstrating your assertion that “autism is treatable”? 

      As for being born autistic, genetics studies indicate that is indeed largely case.

    • People who think of autism as a “dire affliction” are going to PITY autistics, not give respectful understanding and support.

    • ‘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’

      That’s a pack of lies. I am autistic, know autistics and know this is nothing but rubbish.

      The DSM 5 is a disaster and a farce that has been panned and criticized by many different doctors for not only getting rid of or creating different diagnoses but for its poor methodological fact-checking

  3. Emily — the papers you cite to look for and find a neural correlate differentiating two groups, when language delays are used to differentiate Aspergers from High Functioning Autism (HFA, however that was defined). I had deduced that the general consensus (driving some of the changes in the DSM V) was that language delay was not a useful predictor of differential outcomes or treatments for Aspergers and HFA.

    Are you advocating for the alternate position (from the DSM V)? that Aspergers should be defined on the basis of symptoms + the absence of a language delay and remain as a diagnostic entity?

    • I’m advocating that people who write articles about the autism community engage in specifics rather than generalizations and interview autistic people and parents, especially if the articles contain content making accusations against either or placing them in a negative light. I’m not advocating anything in re: the DSM except that autism is not a mental health problem and I am unclear about why it would be included at all in a mental health “manual” that practitioners don’t even seem to know how to use. 

      As far as your question about language, I don’t find “on-time” language particularly informative. My oldest son was “on time” speaking words, but his language was not functional (expressive and receptive language delayed) and was primarily echolalia. It may be that the distinction in the context of outcomes is apraxia of speech vs not having apraxia rather than using speech per se, but again, that’s neurological, not “mental health.” The distinction might be better made between either apraxia and not or expressive/receptive language delay vs not. Not simply “language delay or not.”

  4. Good article. Off topic but I disagree that there’s a receptive language problem in general. I think the shared language we use masks orthogonal representations of the world so whoever is in a subordinate position has to do a lot of translating, and usually that would be the autistics.

  5. “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.”

    You may feel that the word ‘quirky’ is a misleading term, but for me it works pretty well.  I’ve known several people diagnosed with Asperger’s, and a couple of people with an autism diagnosis.  I am aware of their various deficits and disabilities – I do not discount those difficulties at all – but they still seem to me to be ‘just quirky people’ because they are often quite able to be productive citizens, good friends, pleasant companions, and all around fine human beings (and particularly if they receive the support any and every human is due).  Some folks with autism or asperger’s can sometimes be a bit frustrating, but so is everyone from time to time.  Just as we all need various forms of support from time to time.

    The diagnosis of someone as autistic or asperger’s can be a useful tool for figuring out how to help that person be the best version of themselves – but to me folks with autism or asperger’s are just people and the label ‘quirky’ only refers to the fact that they have “real-they-did-not-choose-to-be-this-way reasons” for being ‘quirky’.

    (In my view being autistic or having asperger’s is analogous to having to wear glasses – as a glasses wearer I really do have a real deficit in my ability to see.  Understanding the nature of the deficit enables me to have a good pair of glasses (yeah!).  And my wearing glasses – while keeping me from flying high-performance aircraft – has absolutely nothing to do with my worth as a human being or the value to society of helping me to be the best ‘me’ that I can be.)

     

  6. “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.”

    Well, how about you also hear from one of the people who also suffer, the people MISdiagnosed with ‘Aspergers’ when they don’t have it!

    I have PTSD and social anxiety (including eye contact anxiety) and a lot of this stems from the fact my family were severely abusive, my father was a psychiatric case and my mother was mentally ill. Her having me ‘(mis)’diagnosed’ in early adulthood was just a way to publicly blame all the family problems on my supposed ‘Aspergers’ rather than the true fact the entire family is a classic case of dysfunction and mental illness. (I am the ‘scapegoat’ role as termed in family systems psychology.) Meanwhile she has just manged to cover up her own mental illness/es, my father’s stays in the psychotic wards are buried from all outsiders.

    I told her I don’t have ‘Aspergers’ and I refuse to go through with this. Well she said I don’t have a choice. “Either you have Aspergers or you’re EVIL’! I told her I was ‘evil’, as that totally subjective hence meaningless, but she said no, I don’t have a choice. She circulates this negative PR to everybody she ever encounters (if I get a job and she finds out, she rings up and tells them, hence no more job) and I have no self confidence any more and everyone treats me like I’m 3 years old and intellectually retarded. It’s like a bell curve. I grew up, and then suddenly it’s like it reset the second she decided I’d be the public sacrifice to cover the family’s endless years of problems! I used to have friends, but I’m too scared to re- contact anyone who might have heard about the MISdiagnosis she’s triumphantly spread to the world. How do you ever explain?

    I’m just one case? Well, I know several other people who’ve been mis’diagnosed’ in adulthood as a way of thier families covering up childhood abuse. Then the parent/s claim it was all the fault of the child and their ‘Aspergers’ not them, and run around thinking they should be an object of pity. The adult children have a lot of problems, but Aspergers is not really one of them. They’re ACQUIRED problems from their negative ‘upbringing’ like social anxiety, social isolation, low self esteem, complex PTSD, trust issues etc. They’re people who were probably born more introverted, sensitive and slightly nerdy, but not ‘Aspergers’. Then the abuse took care of the rest and gave them real issues. The unsought-by them ‘Aspergers’ diagnosis is like the nail in the coffin and they tend to give up. These peoples’ lives are destroyed.

    Meanwhile, of course no cure or treatment or even cause of real autism (including ‘genuine AS’) cases will be found as long as all these people with a few of the superficial ‘symptoms’ are misdiagnosed in plague proportions. ‘Autism spectrum’. Yeah, to a ‘spectrum’ where you don’t actually have it?

  7. Hi, Michele–

    I was just talking to my spouse about the subject of your first comment before I came on here and read it. I would advocate getting rid of labels that encircle someone and instead focus on supports for manifestations that clearly need them. That way, my sons–one of whom has Asperger’s and the other of whom has ADHD–would receive support for some of the things they have in common (anxiety, OCD, learning disabilities, auditory processing deficits, etc.) without my having to worry that the world will perceive them as frauds because of a label or that some detached cohort of “experts” who don’t even work with people like them will erase the validity of their differences and disabilities via diagnostic recall. 

    But the world as it is now uses these labels–and the DSM–to determine who receives supports, so I can’t advocate their removal unless another better, more targeted system were ready to take its place. For the record, my children receive no taxpayer-subsidized supports because I homeschool them, so my concern in that regard is on behalf of people who receive and need them.

    Agreed about the defiance and the behavioral comments. Our mantra around here, courtesy of our own intuition but articulated by my friend Shannon Rosa, is that behavior is communication. Our job as parents and caregivers is to figure out what it’s communicating.

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