Baron-Cohen Asperger Article in NYT

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Researcher Simon Baron-Cohen published an interesting editorial this week in the New York Times. Entitled "The Short Life of a Diagnosis", he discusses the possible exclusion of Asperger's diagnosis in the next version of the Diagnostic & Statistical Manual (DSM)

A link to the article is here. You might need to sign up to view (it's free).

Z

The opinion is interesting but I see many potential problems with his genetic comparison study of classic autism and Asperger's. The most imprtant one is, how does he distinguish between AS and HFA and what makes him think that his particular definition goes aong the lines of a genetic definition? If the criteria is language acquisition, then what about IQ? How does one correctly determine IQ (cultural bias, pragmatic-semantic problems etc)? Or is he going with Gillberg and including motor clumsiness? But in that case he'd have to leave put language, since Gillberg allows for language delays in AS.

You get my drift I guess. If professionals can't agree on a distinction between the two syndroms, then what's the point of comparing the genetic makeup of two so arbitrarily constructed groups? And to what end? I agree with him that causes should certainly be explored, but I think he's going at it from the wrong angle. How about getting a group of autism spectrum people, regardless of the labels, charting théir symptoms and investigating their genes without the division in place? Then, as the results come in, the autists could be divided into groups based on any genetic patterns they exhibit, rather than on the varied interpretations of the difference between AS and HFA. By assuming there is such a difference, Baron-Cohen is doing exactly what he himself is objecting to - constructing diagnosis based on behavior only, and he's sqewing the material before the investigation has even started.

On a different note, am I the only one detecting a slight contempt for the field of psychiatry?

Just to say I agree with the above post. It certainly conveyed, to me, if not contempt for psychiatry, an impression that it's an inferior discipline.

I suppose he is taking a different avenue, than the behavioral one, to determine inclusion in a diagnosis. It remains to be seen if clusters of genes can indicate AS or HFA. His example of the genetic basis for Down Syndrome is interesting - people with the syndrome have differing ability levels, but the extra copy of Chromosome 21 indicates a firm diagnosis, regardless of ability level. The same can't be said for the Autism Spectrum, perhaps the genetic basis is too complex and variable to be useful at this point.

In my opinion, many who could use assistance are excluded from an autism spectrum diagnosis, because behaviorally they don't fit a profile. I, for one, have a number of characteristics and indications of HFA, but no diagnosis. Others have the wrong diagnosis, which is problematic, as they may receive treatment that doesn't really help. Measures other than behavior should help to clarify the bigger picture of the Autism Spectrum. Until those measures are embraced by the psychiatric field, diagnoses will continue to bounce back and forth like a ping pong ball.

Z

Thus the skepticism of Psychiatry. It is not an exact, EMPIRICAL Science. Western Science still regards Psychiatry as just a little on the rational side from out-and-out Mysticism. In other words, its taken seriously enough to grant that it has some scientific value, but not seriously enough to have determined just how much value. The ability to back up Psychiatric diagnosis with genetic markers will change that.

It does appear that pinning Autism to specific genes may turn out to be tricky. They may find there can be several gene combinations that create similar or virtually identical effects. Or that there are several varying sub-types of Autism (which I expect).

As for the AS/HFA debate - I think they're the same thing. The speech delay is an unrelated phenomena.

They are very similar and perhaps essentially are the same thing. But typically those who are Asperger's have a tendency to be more left-brained (verbal), and those with High Functioning Autism tend to be more right-brained (visual-spatial). Both can have similar differences with emotional regulation, communication, sensitivity, etc., but the profile of abilities tends to cluster in different brain areas.

Maybe the Asperger's diagnosis is being considered for elimination because the committee feels too many are being diagnosed who either don't fit the profile, or who don't have enough behavioral deficit. Maybe they feel that the Aspie movement is too "popular" and one-sided. After all, Aspies can be more verbal, and perhaps are better able to advocate for themselves. Because the word is out about Asperger's symptoms etc. more than HFA, lumping everyone under the Autism Spectrum label levels things out, particularly because behaviorally, it can be hard to distinguish between AS, HFA, PPD-NOS . . .

Z

It is.

Psychiatry is a medical practice where the whole idea is to regulate those with issues with their mind. If there is an issue that is needed to be solved that is with the mind, they have to tackle it. Some of the diagnosis exist only for legal purposes.

Medicine isn't science, technically.

"better able to advocate for themselves"??? This is the stereotype of Asperger Syndrome that infuriates me most - that we're all successful at some special interest profession, and working as college professors and physicists - that we get on socially and economically just fine, and are generally indistinguishable from yuppies except for an endearing absent-mindedness and adherence to routine. Oh, people with Asperger don't need any help, they're so HIGH FUNCTIONING.

B***Sh*t! When some imbecilic bully decides to step into your path and prevent you from getting a job, let's see how well you advocate for yourself, because I guaran-Goddamn-tee you the system isn't gonna protect you - not even the laws supposedly enacted to protect and defend the disabled. Not the organizations who claim to be looking out for the autistic (unless you're under eighteen), not your state or federal government, not your congressman nor senator - nobody. You're own your own, buddy. Advocate away.

Now you can't get a job doing the only thing you're qualified for. But of course, that's not a problem is it? You're so verbal and high-functioning, you can TALK your way into a place to live.

Autism is autism and it's a disability. Just because you're happy and well-fed (for now) is not an excuse for downplaying that handicap's effects on others. You may find down the road that just how high-functioning you are kinda depends on how tolerant the NTs around you are feeling that week.

Thus endeth the rant.

Some of the DSM work group members have explained the reasons for the changes. This is from a good blog post about it, that quotes a NYT article about the subject:

http://autistscorner.blogspot.com/2009/ ... ctrum.html



As far as better at advocating, people close to normal appearing have the disadvantage of not looking obviously 'impaired.' Of course, looking 'impaired' has a whole bag of problems of it's own, but more-normal-looking-but-not-actually-normal-functioning is not necessarily a clear advantage.

Nice rant, Willard

I am blessed that my 75-year-old mother lets me live with her so I have a roof over my head. And I quit my job a year ago because I couldn't handle the interpersonal stuff very well and I couldn't keep up with the complexity. You're right, sometimes "just how high-functioning you are kinda depends on how tolerant the NTs around you are feeling that week."

Apple_in_my_Eye, I have some knowledge of Dr. Lord, and I was evaluated at the center she runs. She specializes in childhood autism, and doesn't seem to recognize how different forms of ASD can appear, particularly in adults. I believe that because the outward "symptoms" of ASD can change throughout one's lifespan, it does create a situation where "Asperger's means a lot of different things to different people". I wonder if it would be more helpful to look at how ASD function can change in some, instead of having "one size fits all" criteria and dumping what for many has been a useful framework for self-understanding -- the Asperger's diagnosis.

Z

Well, yeah, if you're autistic and you happen to specialize in language, you'll be better at language. If you happen to specialize in visual, then language gets left by the wayside. Why that should make up a fundamental difference while other, equally pronounced, differences between autistics get ignored for the purpose of diagnosis is beyond me, though.

They aren't eliminating Asperger's because they think it's being applied too broadly. They're doing it because the PDD categories, as written, simply don't adequately cover the spectrum. The PDD categories aren't too broad; they're too narrow.

Most people who are Asperger's shouldn't be diagnosed Asperger's, that's true; but that's not because they don't need a diagnosis--it's because their correct diagnosis is actually Autistic Disorder, which should take precedence. In their case, a diagnosis of Asperger's is just a way of following the stereotype that "if you can talk, you can't be autistic," or, "if you seem smart, you can't be autistic," and diagnosing Asperger's even when an Autism diagnosis is actually warranted.

And Asperger's is only part of the problem. The other part is that both Asperger's and Autistic Disorder don't cover nearly enough of the spectrum. PDD-NOS is the most common autism category, half or more in most places; and when you have to dump most cases into the NOS box (which means "not otherwise specified", as in "we know it's autism but it doesn't fit into a specific category", or, "atypical autism") then you know there's something wrong with the diagnostic system.

So you have at least one diagnosis that's practically redundant; and all the other categories on the spectrum are too narrow to cover half or more of the spectrum. This needs re-writing, and needs it badly.

I wholeheartedly agree, but wonder if collapsing everything into a single autism spectrum diagnosis will serve to confuse - by oversimplifying the extraordinarily complex presentations of the individuals on the spectrum.

I brought up the verbal versus visual abilities because they can dramatically affect how we learn or aren't able to learn in traditional ways. It would have been extremely helpful for me and my parents, when I was a child, to understand the verbal deficit I have, so that I could have had more understanding from teachers, etc., and a greater chance for me to develop my abilities. Teaching to specific abilities and strengths that we have is much more helpful than dwelling on what are considered to be textbook deficits. But it will be even harder to do that if the the criteria try to be encompassing to the point of diminishing understanding of how groups of individuals have patterns of strengths and deficits, that tend to cluster along the autism spectrum.

Z

@Zonder
I guess my assumption was/is that they'd dx "ASD" and then write details after it, like "non-verbal, medium functioning, dyscalculic" and so forth. And if those things changed to "verbal, high functioning, dyscalculic" that that would be noted in a person's records over time.

I don't follow about Asperger's being a uniquely useful framework for self understanding vs ASD, tho. Seems like they'd just write "ASD, verbal, high functioning" (ok, a bit stereotypical there) instead of AS. -- That that would allow more customization since there wouldn't only be 2 'kinds' of ASD.

To quote Dr. Baron-Cohen, Apple_in_my_Eye: