John Elder Robison on American Autism research

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cyberdad
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14 Nov 2017, 1:15 am

B19 wrote:
The common public perception is that autism is about sick or diseased children, and it is up to the academic community to help correct that picture.

I'm not sure this up to the academic community though?

Public perception has been further confused with the absorption of Aspergers into the umbrella of ASD in DSMV which means academics have probably made labelling worse forAspies since I don't think any NT thinks sombody with Aspergers is sick/diseased (perhaps eccentric and loopy was the perception I had before my daughter was born)



cyberdad
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14 Nov 2017, 1:31 am

B19 wrote:
But if it is not correct to speak of a disorder, what exactly is the sensible language and what are the accompanying conceptual frames? The commonly heard distinction between "high functioning" and "low functioning" ignores extreme variations in the skills of the autistic individual, and it also seems to classify a group of human beings as somehow unfit.


I hate to say this but this is a debate only those on the "Asperger end" of the spectrum have as they are the ones with hang ups about being lumped in with so called lower functioning people

I think its perfectly fine for the NT community to recognise that having Aspergers means you are not "restrained" by the disorder and are capable of a great many things - all part of the wonderful thing we call "nuerodiversity"



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14 Nov 2017, 8:02 am

Children's hospitals such as St. Jude and Shriner have what might be a great model for an actual paradigm shift in relation to autism. Research for prosthetics, treatments, cures and such do take place in the background, but the immediate and continued needs of current patients so they can function and participate within society as well as possible right now is (or at least seems to me to be) at the forefront and without discrimination based upon the cause of the need.


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14 Nov 2017, 10:06 am

http://hfsc.org/autism-inpatient-unit
To be considered for admission to the Autism Inpatient Unit children must:

be ages 10 to 21;
have an established diagnosis of ASD;
display self-injury, aggression threatening the safety of others, or behaviors that severely impair functioning;
have an established discharge plan; and
be medically stable.
Younger children will be considered on a case by case basis.



johnrobison
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14 Nov 2017, 12:55 pm

The IACC is not focused on cure of autism today. Ten years ago, it was. The public recognition that we need to shift our research priority from basic biology aimed at cure to support and benefit to autistic people is a very, very big deal.

Huge government agencies are very slow to change. This is a change we should all welcome and encourage


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Tawaki
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14 Nov 2017, 2:51 pm

cyberdad wrote:
B19 wrote:
The common public perception is that autism is about sick or diseased children, and it is up to the academic community to help correct that picture.

I'm not sure this up to the academic community though?

Public perception has been further confused with the absorption of Aspergers into the umbrella of ASD in DSMV which means academics have probably made labelling worse forAspies since I don't think any NT thinks sombody with Aspergers is sick/diseased (perhaps eccentric and loopy was the perception I had before my daughter was born)


I think hunting for a gene or some environmental cause/cure is a waste of money at the moment. It's easy to fund for that. Throw a header picture of cute kids on a web site and one of A$ misery porn clips of kids having meltdowns. People will open their wallets.

What seems to be needed is support and a change of attitude. That is where the Aspies' will get the short, splintered end of the crappy stick. There is only so much money to pass out. Who gets it? The person with two colleges degrees and no job or the non verbal person who has to have help 24/7?

The public perception is going to be hard to change. An Aspie who is Bill Gates brilliant, will get some support because h/she is making tons of cash for company. The peons who hate working with the Aspie get a cup of STFU. Money coming in trumps the underlings personal satisfaction. If you act/look "challenged", most people don't start out the rolling hate. You aren't considered an equal, so they treat you like a child. You know, bless her heart, I'm trying to make the world a better place by helping this poor soul along.

The Aspies who aren't a savant, and can "pass", are the ones who get screwed now. You are really bright and book smart. You could do the job if the crippling anxiety and depression weren't flitting around. If you are lucky, the coworkers tolerate you. Unlucky means a steady stream of bitching to HR/boss about all your social flaws. You may get accommodations, but at the end of the 6 months you are let go. You live in an at work state, so any excuse is a good excuse to can you.

^^^^^^THAT is what should be researched, but it isn't as sexy figuring out if Round Up on tomatoes makes kids autistic. No warm fuzzies in helping educated, social struggling 30 year olds staying employed.

The research should be why do Aspies trigger people so badly? My coke addled sexually harassing bipolar boss got thousands of chances more than my Aspie husband did at his job. WHY? My husband's crime was he made a neurotic 60 year old "nervous". That started the ball rolling for him to be broomed. My boss did 8 tours of rehab/psych units, and everyone was pulling for him. He wasn't even a good guy cleaned up and sober.

Anyway...that's my question to be researched.



cyberdad
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14 Nov 2017, 3:34 pm

Tawaki wrote:
I think hunting for a gene or some environmental cause/cure is a waste of money at the moment.


Some medical institutes think Fragile X is linked to autism - media report that they are on the cusp of a genetic link...still waiting...

Tawaki wrote:
An Aspie who is Bill Gates brilliant, will get some support because h/she is making tons of cash for company. The peons who hate working with the Aspie get a cup of STFU. ,

I think there are more Aspies blending in than we know. Heck I might be one of them.


Tawaki wrote:
The Aspies who aren't a savant, and can "pass", are the ones who get screwed now. You are really bright and book smart. You could do the job if the crippling anxiety and depression weren't flitting around. If you are lucky, the coworkers tolerate you. Unlucky means a steady stream of bitching to HR/boss about all your social flaws. You may get accommodations, but at the end of the 6 months you are let go. You live in an at work state, so any excuse is a good excuse to can you.
^^^^^^THAT is what should be researched,

If a genetic test becomes available then it will be easier to screen this cohort as I suspect (as mentioned earlier) that there are more passing as NT in the workforce - particularly females...the questions is...if you are successful (not necessarily Bill Gates type successful) then why bother getting tested?

Tawaki wrote:
The research should be why do Aspies trigger people so badly? My coke addled sexually harassing bipolar boss got thousands of chances more than my Aspie husband did at his job. WHY? My husband's crime was he made a neurotic 60 year old "nervous". That started the ball rolling for him to be broomed. My boss did 8 tours of rehab/psych units, and everyone was pulling for him. He wasn't even a good guy cleaned up and sober.

Anyway...that's my question to be researched.


Probably because the coke-addled boss is more relatable to an average NT, we all have an uncle who is drunk or a cousin/friend who takes recreational drugs, in contrast the Aspie represents an unknown entity who is therefore unpredictable - any job that involves some level of client service an Aspie is going to face challenges and one slip up might feed confirmation bias (assuming the boss knows their diagnosis)

On the other hand for an undiagnosed Aspie it's a question of how well they "blend in" I think the latter is something that should be researched as its more useful to know how successful Aspies cope with NT life



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14 Nov 2017, 4:05 pm

cyberdad wrote:
I hate to say this but this is a debate only those on the "Asperger end" of the spectrum have as they are the ones with hang ups about being lumped in with so called lower functioning people


The old Aspies are supremacists meme again. I have been on WP and other autistics since 2013 and I have read and still read posts by aspie supremacists and they have always been a small minority of us that unfortunately for a significant number of people on and off spectrum ableism towards more severe autistics is how aspies and neurodiversity advocates are defined.


cyberdad wrote:
I think its perfectly fine for the NT community to recognise that having Aspergers means you are not "restrained" by the disorder and are capable of a great many things - all part of the wonderful thing we call "nuerodiversity"

I did notice you put restrained in quotes. We are restained even if most people can not see it. It is good that there is some recognition that autistic people can do great things but it has come with the steep cost of not recognizing the struggle to do what most take for granted if not outright denial such people can be autistic. It seems beyond most people to be able to recognize a person can accomplish things AND be impaired especially for nonphysical impairments


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cyberdad
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15 Nov 2017, 12:54 am

ASPartOfMe wrote:
cyberdad wrote:
I hate to say this but this is a debate only those on the "Asperger end" of the spectrum have as they are the ones with hang ups about being lumped in with so called lower functioning people


The old Aspies are supremacists meme again. I have been on WP and other autistics since 2013 and I have read and still read posts by aspie supremacists and they have always been a small minority of us that unfortunately for a significant number of people on and off spectrum ableism towards more severe autistics is how aspies and neurodiversity advocates are defined.


cyberdad wrote:
I think its perfectly fine for the NT community to recognise that having Aspergers means you are not "restrained" by the disorder and are capable of a great many things - all part of the wonderful thing we call "nuerodiversity"

I did notice you put restrained in quotes. We are restained even if most people can not see it. It is good that there is some recognition that autistic people can do great things but it has come with the steep cost of not recognizing the struggle to do what most take for granted if not outright denial such people can be autistic. It seems beyond most people to be able to recognize a person can accomplish things AND be impaired especially for nonphysical impairments


Agree with everything you said...the quotation marks indicates that its a subjective perception