Death of the Syndrome

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I know it's not accurate- That's why I'd put it in quotations, I've had times that I felt much less off than people with high functioning autism as their diagnosis. My point is, having it known as just autism spectrum disorder may help get that stigma erased. I guess I should have been more clear that the part I put in quotations is how I've heard it described, not my belief, but that was the point of my quotation marks there- Sorry for the misunderstanding.

Good for you for not going back to her. She sounds like a complete non-listener. And I'm glad you have a choice of doctors, as a decent health care system certainly should provide.

I wish you all the best in finding the cause, treating, and curing your headaches. I think there's probably a laundry list of potential causes (which of course is why someone goes to medical school in the first place!). They should rule out the most serious and most common causes first. Then, and it took me a while to come to this view, it might be trial and error in a respectful sense. Just like with bronchitis, you hit it with one broad spectrum antibiotic, and if that doesn't work, hit it with another. I used to think this was sloppy medicine, but I have kind of come round. In the time you could what, grow a culture, you could already cure it. And if it doesn't respond to one antibiotic, that in itself is diagnostic. I don't know if this is the case with chronic headaches, but it might be. I've also had some success writing three bullet points on a piece of paper and simply handing the piece of paper to the doctor.

I hope you're right. Unfortunately, I see it going the other way.

There's a popular myth (almost universally regarded as fact) that Hans Asperger was working with very high-functioning children. He wasn't; he was, in fact, working with children that were every bit as profoundly affected as the kids Leo Kanner was working with in the States. The difference is that Kanner and his patients were relatively safe and snug in the States; Kanner could focus on the negative and use the language of disability to his heart's content. Asperger and his kids were in Vienna, and Asperger was desperately trying to save his patients (or his livlihood, if one wishes to be cynical) from Hitler's eugenics programs.

His research was buried and ignored until Lorna Wing and Company went digging for a new label to describe this group of symptoms they kept seeing over and over and over again that obviously existed but defied diagnosis. Thus, Asperger's syndrome was born.

I rather expect that what will happen is that life will get no better for the more profoundly affected among us, while the "more functional" will be labelled and stereotyped with the same expectations until, one by one or collectively, we stop trying.

Human nature is to try to perpetuate one's own genotype-- and phenotype, for that matter, even to the point of race, culture, religion, and point of view-- to the exclusion of all others. In that vein, please remember that the African slave trade began with black Africans selling other black Africans (different tribes, different cultures) to European explorers/traders in exchange for material goods. Also that the African slave trade supplanted members of Native American societies selling members of other Native American societies (again, different tribes, different cultures) to the white settlers in exchange for, guess what, material goods.

Moral people who choose to make use of the cerebral cortex [God] gave them can overcome the perpetuate-only-my-people bias without terrible difficulty, but it does take effort-- an effort the majority of our reactionary species isn't willing to put forth. Why expect the ASD/NT issue to be any different???

Yeah, the rest of your paragraph clearly disagrees with it. I was just making a comment about that bit, but not really directed at you. Sorry.

But this is the thing I have heard from clinicians there is this thing that needs a name. Getting rid of the name and calling the same as this other thing that is similar in many ways just puts us back in the position that Lorna WIng was in. And whaddya know? The needed name already exists.

When I look in most books about Autism, they are generally talking about the other kind and they are not talking about my son or myself. When I look in books about Aspergers, much of what I read fits us both. The Aspergers books help my wife to communicate with us effectively, the Autism books are often talking about something just a little different.

Based on this personal, anecdotal evidence, and the opinions of several experienced clinicians I have discussed this with, I think there is a need to name this pattern and it will be filled. Logically, it will be filled by the existing name: Aspergers.

The problem was "We have these children who appear to be autistic but can speak. And have higher scores on IQ tests than autistic children. What can we possibly call them?"

Which is to say they had a name, they just didn't want to apply it to these people because of assumptions about what the name was supposed to represent.

I have heard my daughter's paediatrician refer to children like you describe as normal kids having autistic traits. One wonders whether the whole "Aspergers" construct is merely part or even just one allele in a suite of genes being activated/triggered?

I doubt its dead. I have other beefs with the new manual, but concerning ASD, looks like a few new things were added just so some shrinks could make some money.
Grief over death of a spouse? Gimme a break! That is normal human emotion...

Sincerely,
Matthew

I think there is a little more to it than that, but perhaps I am wrong. I may not have understood the clinicians correctly and my own knowledge of this is limited to a few months of intense, obsessive research--a relative drop in the bucket.

I don't think I was misinterpreting the neuropsychologist who said, regarding Kanner type Autism and Asperger Syndrome, "Aspergers is really not the same thing."

I wonder what you make of this letter by Dr Richard Perry:
http://richardperrymd.com/MoreDSM5.html

Why would a trained and degreed paediatrician say something so absurd?

I don't understand what you mean about the whole genes thing.

I think that many clinicians are invested in the idea that these are two separate things, despite the fact that they have so much in common. Apparently, numerous conditions can have more than one "standard" presentation but different presentations in autism must be given different names and be considered entirely different things. Why is that?

I am diagnosed with major depressive disorder, although my symptoms are atypical (atypical depression is much more common than so-called "typical" depression), but I don't need to have a diagnosis of "major atypical depression disorder" instead just because many of my symptoms are the opposite of what was assumed to be the default for MDD. I have a diagnosis of MDD described as atypical presentation.



I question his general level of expertise given his lack of perspective on how the two diagnoses evolved. I am not even sure he fully read the studies he's denouncing.

Because they are trained to refer parents of kids showing signs of ASD to a psychologist for assessment. After the referral, the psychologist sends the assessment to the paediatrician who duly agrees with the label and gives their own take (with little concern over ramifications) on what it implies. Mental health professionals are not any wiser than a concerned parent and often lack the empathy to walk a mile in our shoes.


The current convention is there a suite of genes that code for the various manifestations of ASD. As the diagnosis is based on a construct of "shared" traits that likely have a genetic basis therefore in people with "mild" Aspergers (such as myself) have only had a few (so called) ASD genes or even one allele (section of a gene) that activate or deactivate resulting in i) one or two traits typical of autism and ii) not strong enough to impair functionality. In comparison somebody who has a larger suite of ASD genes activated (due to developmental or environmental triggers) will end up with more "severe" autism typified by i) multiple traits and ii) more severe manifestations that impair functionality (communication, motor-nueron, behavioral or cognitive).

That's why the paediatrician talked about mild aspies as normal people with a few traits. On the basis of functional assessment (which is how the new DSM criteria operate) he is correct.

I think this makes it sound neater and more easily categorized than it really is. It's not that AS is "autism, minus traits" but "autism, with emphasis on different traits."



I didn't describe "mild Aspies." I said autistic children who could speak and tend to score higher on IQ tests who were not diagnosed as autistic (despite meeting the criteria) because of extremely strict assumptions about how autism presents. I am not sure how one gets from there to "mild." Lots of people who are labeled with AS are anything but mild, and at best are only assumed to be mild because of an emphasis on speech as a measure of severity with limited or no reference to other issues.

Valid point


Also valid but conditional on the individual child. My comments pertain to general trends with the contructs rather than definitions based on absolute boundaries. I did say when you base a diagnosis on shared traits then they are either present or not. If they are present then they will vary in severity.

When it comes to adult outcomes there really isn't any tangible difference from one diagnosis to the next.

This not seems to make any sense.