Response to some concerns about neurodiversity paradigm

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Mona Pereth
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11 Sep 2019, 12:15 pm

Dvdz wrote:
Mona Pereth wrote:
An example of the continuing search for a unifying theory of autism is New approaches to study the genetics of autism spectrum disorder may lead to new therapies, Canadian Association for Neuroscience, 24-May-2019:


I read the article and I am having trouble seeing how it is an example of the continuing search for a unifying theory of autism.

Quote:
One key to understanding and ultimately treating ASD is to identify common molecular mechanisms underlying this genetically heterogeneous disorder.


Now, if the quote had been: "... is to identify a common molecular mechanism", I would have gotten where you are coming from.

Quote:
When KCC2 fails to work, inhibitory neurotransmission (through a neurotransmitter called GABA) switches to being excitatory. Breakdown of GABA inhibition is a hallmark of abnormal brain activity in conditions such as epilepsy, pain and some forms of autism.

Regulation of KCC2 therefore appears as a valid target for treatment of ASD.


The last sentence might seem to agree with your point, but if you read it in the context of the previous sentences, it seems clear that they meant that it appears as a valid target for treatment for only some forms of ASD.

The sentence you quoted is from the description of the work of Melanie Woodin, not one of the two researchers I mentioned, Karun Singh and Catharine Rankin, whose work is described more ambiguously in that article.

However, looking more closely at another article about Dr. Rankin's research (the Spectrum News article I linked to), I see that you are correct that it's not a unifying theory for all of autism either, just an attempt to identify groups of mutations with similar manifestations.

Last night I spent quite a bit of time poking around through the Spectrum News archive for the past four months and found nothing there about any new attempts at unifying theories except for (sort of) Philippe Mourrain's sleep theory (not quite a unifying theory, but the closest thing to it within the past several months, apparently -- see link earlier in this thread), although I found a bunch of articles published in May reviewing older attempts at unifying theories.

Hopefully this means that the autism biological research establishment has finally given up on the idea of trying to come up with a single unifying theory of autism, and that Robert Naviaux's 2017 research (which he explicitly described as an attempt at a unifying theory -- see Spectrum News quote and link earlier in this thread) was one of the last gasps of this goal.

Still, however, I noticed that the headlines of news articles about autism research, even in Spectrum News of all places, are often worded in such a way as to make it seem like they are talking about autism in general, as an alleged single unified thing, even when they aren't.


_________________
- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


Last edited by Mona Pereth on 11 Sep 2019, 1:33 pm, edited 3 times in total.

Mona Pereth
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11 Sep 2019, 12:33 pm

Poking around in the Spectrum News archive:

Many of the reported studies, at least on the first several pages (as of today), are about hypotheses of the form: Genetic mutation X causes protein Y to be made (or not made), which causes event Z to happen in the brain, which may cause ... autistic behaviors! (usually in "mouse models" with a similar mutation artificially induced).

Two of the most recent Spectrum News articles, here and here, talk about studies that seem to pertain primarily to Rett Syndrome, although the titles of the articles don't mention this. (One of the titles just seems to be about autism in general, and the other one seems to be about brain research in general.) Rett Syndrome, which was considered to be part of the autism spectrum under the DSM IV but isn't anymore, is (unlike autism in general) a degenerative and ultimately fatal disease. That being the case, an all-out effort to cure it is indeed justified.

One could argue that the same is true for the most severely disabling kinds of autism caused by mutations like DNA deletions and duplications. (And I hope that the level of fine-grained biological attention that is the current state of the art is being lavished primarily on those genetic mutations associated with the most severely disabling kinds of autism.)

Nevertheless, as I've said before, the direction this and other recent research is going creeps me out in terms of its ethical implications, not just for autistic people but for society as a whole. As I wrote earlier:

Mona Pereth wrote:
If and when precision brain-tinkering ever becomes an everyday reality, it's easy to imagine how it could be abused by totalitarian governments, and also how parents in relatively democratic countries too would be pressured to allow it to be used on their children to treat more ... and more ... and more childhood "abnormalities" so their children become more obedient and fit in better ... and better ... and better ... and better with corporate culture, etc.

I question whether our society is ethically evolved enough for this level of brain-tinkering.

Another worry of mine is that the forthcoming radical autism treatments may have the unintended side effect of harming an autistic child's cognitive potential. As I pointed out here, it is now known that many nonverbal or minimally verbal autistic kids have cognitive potential that far exceeds their verbal abilities. Alas, as far as I can tell, developing these kids' nonverbal cognitive potential is not even a priority, at all, in today's most common childhood autism therapy (ABA). I worry that their undeveloped nonverbal cognitive potential will be further neglected, as something even to consider in terms of side-effects, when radical autism medicines reach the clinical trial phase.

I'd feel a lot better if the amount of money being spent on genetic brain research were paired with at least an equal amount of money focused on research into educational and therapeutic methods focused on autistic children's cognitive development -- by which I mean much more than just language development, although the latter doesn't receive anywhere near enough attention either, in my opinion.

For that matter, I'd like to see the same thing done for kids with ADHD. Currently, standard practice is to give these kids highly addictive stimulants to enable them to fit in with today's (historically very anomolous) public educational machine.

IMO, in today's world, surely it should be possible to adapt the public educational machine to the child instead of vice versa? Indeed, why do we still need traditional classrooms at all? Today, in the era of computers and highly attention-grabbing social media and smartphone apps, surely it should be possible to develop educational software that is just as attention-grabbing for children (even kids with with ADHD, many of whom do have the ability to hyperfocus) -- and that can be customized for each child. In such a system, the teacher's job would just be to monitor each child's progress, customize the apps to the child, and give additional tutoring where needed. Only the most severely disabled ADHD kids would still need to be medicated.

Given today's technology, there is no longer any excuse for "Quiet Hands!" to take precedence over an autistic or ADHD child's cognitive development.


_________________
- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


Bobik
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12 Sep 2019, 1:48 am

Hi guys :D