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NeuroTribes --> Kanner too narrowly defined autism.

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AardvarkGoodSwimmer
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04 Nov 2016, 4:00 pm

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Leo Kanner, Hans Asperger, and the discovery of autism, The Lancet, Simon Baron-Cohen, Oct. 3, 2015.
Click here

" . . . First, Kanner insisted that autism was a condition of infancy, putting the spotlight on early childhood and rendering adolescents and adults with these traits invisible, . . . "


Just like PANDAS where it's defined as a condition of childhood or adolescence, and then BOOM, you don't look and you don't find anyone else.

So, yes, Kanner defined autism as a condition of infancy, leaving the rest of us out in the cold. Well, here in 2016 we can now do a damn sight better thank you very much.

One more thing, even though this book review is published in the prestigious The Lancet, at the end of the day it's still just a book review of Steve Silberman's NeuroTribes.

====

Or, do google search for site:TheLancet.com autism Silberman



Last edited by The_Walrus on 06 Nov 2016, 8:07 am, edited 6 times in total.: Fixed broken link at poster's request

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04 Nov 2016, 4:08 pm

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BROKEN --> http://www.thelancet.com/journals/lance ... 40-6736(15)00337-2/fulltext?rss%3Dyes

" . . . Because Georg Frankl, the chief diagnostician in Asperger's clinic in 1938, came to Johns Hopkins University to work in Kanner's clinic later that year. Long before the internet or email, the transmission of scientific ideas could nevertheless flow from one lab to another through a doctor working in both. Frankl had crossed the Atlantic and Silberman's argument is that Kanner heard about these special children in Vienna, found some similar ones in his Baltimore clinic, and repackaged them as his own discovery. . . "


Very interesting.

Intellectual theft. The lifting of ideas without acknowledgement.

Now, we know that Leo Kanner is not exactly the greatest figure in the history of autism. It wasn't till maybe (?) 1967 that he stopped blaming mothers for crying out loud.

This is one more line of evidence to frankly use in political battles to get other people to at least be open minded to the idea that Kanner may not exactly be the greatest person in the history of the human race. Now, according to this he also helped nearly 200 Jewish refugee doctors flee to the USA from the Holocaust. Well, heck, that's pretty good. That's excellent. Shame he didn't do just as well for autistic persons and their families.

I really think the coin of the realm as far as effective activism is slightly understating your case. Perhaps for illogical reasons, this seems to have among the best chances of changing minds.



Last edited by AardvarkGoodSwimmer on 04 Nov 2016, 5:06 pm, edited 2 times in total.

BTDT
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04 Nov 2016, 4:12 pm

AardvarkGoodSwimmer wrote:
Just like PANDAS where it's defined as a condition of childhood or adolescence, and then BOOM, you don't look and you don't find anyone else.

So, yes, Kanner defined autism as a condition of infancy, leaving the rest of us out in the cold. Well, here in 2016 we can now do a damn sight better thank you very much.


What good is an adult diagnosis if help and services end when someone becomes an adult according to some arbitrarily defined age like 18 or 21? Knowing what you have doesn't exactly put food on the table or a roof over your head. It seems like all a lot of people want to do is cut services and make it someone else's problem.



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04 Nov 2016, 4:24 pm

BTDT wrote:
What good is an adult diagnosis if help and services end when someone becomes an adult according to some arbitrarily defined age like 18 or 21? . . .
I'm with you. I want And Both. Yes, I want greater services including for adults.

At the same time, I want us to develop in the style of civil rights movements. It doesn't exist now. But hopefully in the future, we'll have our own local chapter which can do such things as having delegations visit with HR departments of local corporations and basically present a polite case (we can swear among ourselves) why they ought to engage in multi-path hiring, rather than single-path. Our local chapter might also be able to provide vetted volunteers to help with taxes, insurance, etc. Even in the UK, I don't think this exists, not as big as I envision. But in the future, maybe.



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04 Nov 2016, 8:16 pm

BTDT wrote:
AardvarkGoodSwimmer wrote:

What good is an adult diagnosis if help and services end when someone becomes an adult according to some arbitrarily defined age like 18 or 21? Knowing what you have doesn't exactly put food on the table or a roof over your head. It seems like all a lot of people want to do is cut services and make it someone else's problem.


The above shows the lingering damage from Kanner's misjudgment.

Kanner also bragged about not diagnosing 9 of 10 people he saw, so that showed his view was not only that Autism as a child only condition but a rare one. Asperger did not think Autism was rare and viewed it as a "continuum" or what we now know as the spectrum. Kanner only acknowledged Hans Asperger once years later in a dismissive fashion.

While Kanner deserves his share of the blame, but it is the people today both amateur and professional who dissoaciate themselves from the current knowledge or who are willfully ignorent of it who anger me. Kanner is dead, it is the current people who are causing all the accusations and suspicion of fakery, massive overdiagnosing, excuse making and autistic people bieng told all the time they are just a bit quirky etc.


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05 Nov 2016, 4:46 pm

I think we need to run our own show. Yes, good-natured professionals can help out along the way, but they don't need to run the show. In fact, in some ways, I think the whole process of someone getting an MD or a Ph.D. makes it harder for them to help, although that's probably a topic for another time. It certainly makes it harder for them to acknowledge they may not know everything.

I think we should welcome people who are self-diagnosed in our network, support, and advocacy groups. I just wish there were more such groups! :D



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05 Nov 2016, 4:51 pm

AardvarkGoodSwimmer wrote:
I think we need to run our own show. Yes, good-natured professionals can help out along the way, but they don't need to run the show. In fact, in some ways, I think the whole process of someone getting an MD or a Ph.D. makes it harder for them to help, although that's probably a topic for another time. It certainly makes it harder for them to acknowledge they may not know everything.

I think we should welcome people who are self-diagnosed in our network, support, and advocacy groups. I just wish there were more such groups! :D
I like what you say here. And it should be easier for self diagnosed people to have the ability to get an official diagnosis if they want one.


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06 Nov 2016, 7:43 am

AardvarkGoodSwimmer wrote:
BTDT wrote:
What good is an adult diagnosis if help and services end when someone becomes an adult according to some arbitrarily defined age like 18 or 21? . . .
I'm with you. I want And Both. Yes, I want greater services including for adults.

At the same time, I want us to develop in the style of civil rights movements. It doesn't exist now. But hopefully in the future, we'll have our own local chapter which can do such things as having delegations visit with HR departments of local corporations and basically present a polite case (we can swear among ourselves) why they ought to engage in multi-path hiring, rather than single-path. Our local chapter might also be able to provide vetted volunteers to help with taxes, insurance, etc. Even in the UK, I don't think this exists, not as big as I envision. But in the future, maybe.

Yes, we need a movement.

In the US Nick Walker (http://neurocosmopolitanism.com/) is doing interesting work. The following thread points to an upcoming conference talk in Auckland in New Zealand viewtopic.php?t=331165 on the need for autists to go beyond self advocacy within the pathology paradigm, and to take ownership of the definition of autism.



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06 Nov 2016, 9:34 am

It will probably have to come mainly from outside of America because
1. external and internilized ablisem is very ingrained
2. American Culture is ingrained with extroversion, networking and eugenics,.
3. The destabilizing general political situation

That said I find the suggested Autism curriculum reeks of telling autistics how they should feel not unsimilar to the external abilists.


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06 Nov 2016, 9:41 pm

Quote:

NEUROCOSMOPOLITANISM
NICK WALKER'S NOTES ON NEURODIVERSITY, AUTISM, AND COGNITIVE LIBERTY

http://neurocosmopolitanism.com/

7. The Instructor Must Model and Invite
the Embodied Expression of Neurodivergence

" . . . And it is necessary for the instructor to personally practice what she preaches: to personally, physically model the embodied expression of neurodivergence. The autistic instructor must move like an autistic person, must freely and visibly follow her natural movement impulses in the classroom. Most students simply will not dare to engage in such exploration in the classroom unless the instructor leads the way. And this means, of course, that in order to be qualified to teach in a way that liberates others, the instructor must do the work of self-liberation on a bodily level. . . "

" . . . Here, again, conflicting access needs can be openly negotiated in class as part of the learning experience. If one student needs to drum her fingers on the desktop and another needs quiet, then perhaps the drummer can place a folded scarf or other article of clothing on the desktop to create a quieter drumming surface. If one student needs to stand up and make dance-like full-body movements, and others find this visually distracting, perhaps a corner of the room that’s outside of the visual field of the seated students can become the designated dancing space. . . "


I like this! :D Although this is perhaps one form of the ideal.



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06 Nov 2016, 9:54 pm

Quote:

NEUROCOSMOPOLITANISM
NICK WALKER'S NOTES ON NEURODIVERSITY, AUTISM, AND COGNITIVE LIBERTY

http://neurocosmopolitanism.com/

3. The Instructor Must Be a Participant
in Autistic Culture, Community, and Resistance

" . . . The tame autistics all have certain traits in common: they are white; they are heterosexual, asexual, and/or fairly closeted about their sexuality; they grew up fairly affluent and have never faced extreme poverty or homelessness; they are highly capable of oral speech; they are ableist, and have no problem with pathologizing non-speaking autistics or other autistics who are significantly more disabled than themselves; they regard disability as shameful and tend to avoid describing themselves as disabled; they rarely contradict non-autistic “autism experts” or ableist autism organizations run by non-autistic people; . . . "

" . . . Temple Grandin and Temple Grandin and John Elder Robison are probably the best-known of these tame autistics are probably the best-known of these tame autistics . . . "


I don't like this part. :? First off, I like Temple and have learned from her talks. :jester: And I think she has plenty of speaking truth to power. I don't know as much about John Elder Robison. I do know he tried to change Autism $peaks from the inside, and good for him, wish more people tried this! And when this didn't work out, he wrote a public letter. Again, good for him. Seemed like pretty good public activism to me.

And in general, from the Vietnam anti-war movement forward, if we as radicals wage war against liberals, that is counter-productive and will harm our movement. Or vice versa, if we as liberals wage war against radicals, that is also counter-productive. In general a movement for social change needs both diplomats and radicals.

Or, look at this part at the beginning where he says, "they are heterosexual, asexual, and/or fairly closeted about their sexuality." That is also putting forward a demand characteristic, for it's okay for a person to be low-key and private about their sexuality. It's also okay for a person to be open and upfront. Both are okay. And I'd feel better if the guy clearly said this. And if he's not going to say it, I'll say it. Both are okay. 8)



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07 Nov 2016, 9:28 pm

And I want to make it clear that I fully invite conservatives to join in autism activism, too! :D I mean people who are conservative personally, politically, religiously, financially, career-wise, medically, educationally, some or all of these, however you wish to do it!

In fact, the method of taking a good solid medium step and then observing feedback, so that we're get a good healthy interchange between theory and practice, and get a dynamic process going of medium step, feedback, medium step, feedback, etc, etc, that actually sounds pretty good to me.

I remain on the liberal/left side. :nemo: I want to be clear about that. But I do invite conservatives.



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07 Nov 2016, 10:52 pm

AardvarkGoodSwimmer wrote:
Quote:

NEUROCOSMOPOLITANISM
NICK WALKER'S NOTES ON NEURODIVERSITY, AUTISM, AND COGNITIVE LIBERTY

http://neurocosmopolitanism.com/

3. The Instructor Must Be a Participant
in Autistic Culture, Community, and Resistance

" . . . The tame autistics all have certain traits in common: they are white; they are heterosexual, asexual, and/or fairly closeted about their sexuality; they grew up fairly affluent and have never faced extreme poverty or homelessness; they are highly capable of oral speech; they are ableist, and have no problem with pathologizing non-speaking autistics or other autistics who are significantly more disabled than themselves; they regard disability as shameful and tend to avoid describing themselves as disabled; they rarely contradict non-autistic “autism experts” or ableist autism organizations run by non-autistic people; . . . "

" . . . Temple Grandin and Temple Grandin and John Elder Robison are probably the best-known of these tame autistics are probably the best-known of these tame autistics . . . "


I don't like this part. :? First off, I like Temple and have learned from her talks. :jester: And I think she has plenty of speaking truth to power. I don't know as much about John Elder Robison. I do know he tried to change Autism $peaks from the inside, and good for him, wish more people tried this! And when this didn't work out, he wrote a public letter. Again, good for him. Seemed like pretty good public activism to me.

And in general, from the Vietnam anti-war movement forward, if we as radicals wage war against liberals, that is counter-productive and will harm our movement. Or vice versa, if we as liberals wage war against radicals, that is also counter-productive. In general a movement for social change needs both diplomats and radicals.

Or, look at this part at the beginning where he says, "they are heterosexual, asexual, and/or fairly closeted about their sexuality." That is also putting forward a demand characteristic, for it's okay for a person to be low-key and private about their sexuality. It's also okay for a person to be open and upfront. Both are okay. And I'd feel better if the guy clearly said this. And if he's not going to say it, I'll say it. Both are okay. 8)

I think Nick Walker's aim is to highlight that the social model of disability needs to be applied, that the level of disability experienced is depends on the context of each individual, and that it is not up to society to judge to what extent someone is disabled or not.

The issue that Nick has with "tame" autists is that they accept the definition of autism as defined by autism "professionals" rather than advocating for the autistic community to take ownership of description of the autistic experience.

Yes, everyone should be able to decide how much to disclose about their neurology and sexual orientation.

The diversity within the autism spectrum makes it problematic for any one individual to make statements on behalf of all autists. To reach a common denominator that can serve as the core of a movement, the social model of disability is a very good starting point. Beyond that refraining from value judgements that affect specific subsets of autists such as the distinction between "high" and "low" functioning are best avoided. I think this is what Nick's criticism is aiming at.

We can be radical activists without "waging war". I would stay clear of such terminology as it implies the use of violence.



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09 Nov 2016, 2:38 pm

jbw wrote:
The diversity within the autism spectrum makes it problematic for any one individual to make statements on behalf of all autists.
And that would be fine if Nick said that. If he had said, Temple has had her own range of human experience, but that doesn't represent the full extent of experience for all autistic persons.

But that's not what Nick said. He called Temple a "tame autistic."

I'm all in favor of giving Nick a lot of slack. I don't want to be down on him too much just because of this one thing. He might have insightful ideas in a dozen different areas. But on this one, he did mess up.