"I resign my roles at Autism Speaks" John Robison

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CockneyRebel
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16 Nov 2013, 12:34 am

I think I've just another one of my Mod moments. :wink:


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Last edited by CockneyRebel on 16 Nov 2013, 12:36 am, edited 1 time in total.

RandyG
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16 Nov 2013, 12:35 am

So that's what integrity looks like. I wish I could see it more often.



IdleHands
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16 Nov 2013, 12:57 am

Aghogday-
I'm glad, we seem to think similar. My particular downfall is assuming I'm being attacked when I'm not. In life I do not have to type in response, but since I had to type a response in gave me time to realize I may have it all wrong. I also agree that emotion was involved here. This thread would have been completely different if that video was not posted in it. It's horrible, autistic or not.
Vermont-
Hope I did not offend you. I realize that you were saying if JRC closed the alternatives for the kids are worse.

By the way, summer camp was actually torture for me; I was incredibly fat and had not learned to fake it very well yet. Kids squirted easy cheese in my hair and pinned me down and farted on me. They also held me down and took turns punching me in the back. Good thing my back was strong from years of childhood rocking.

At least the tourettes seemed to disappear early on; I was a nonstop throat clearer.

My childhood was pure s**t, which is why I mentioned the relative thing.



aghogday
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16 Nov 2013, 1:09 am

IdleHands wrote:
Aghogday-
I'm glad, we seem to think similar. My particular downfall is assuming I'm being attacked when I'm not. In life I do not have to type in response, but since I had to type a response in gave me time to realize I may have it all wrong. I also agree that emotion was involved here. This thread would have been completely different if that video was not posted in it. It's horrible, autistic or not.
Vermont-
Hope I did not offend you. I realize that you were saying if JRC closed the alternatives for the kids are worse.

By the way, summer camp was actually torture for me; I was incredibly fat and had not learned to fake it very well yet. Kids squirted easy cheese in my hair and pinned me down and farted on me. They also held me down and took turns punching me in the back. Good thing my back was strong from years of childhood rocking.

At least the tourettes seemed to disappear early on; I was a nonstop throat clearer.

My childhood was pure sh**, which is why I mentioned the relative thing.


Thanks friend..my middle school years were definitely pure sh** too for the most part...

But i never gave up..and I feel sure you have not either..

We have to be as strong as we can to survive I think...

And oh how I do want to live...

The only way for me to truly do it was to take the path of love instead of hate..

As I could have turned out much ..much ..different..if at least one of my parents..hadn't shown me unconditional love...

There is no doubt in my mind..that hate can be a dangerous thing for Autistic people...

And no I am not directing that comment at any one person in particular in this conversation..

IT takes a lot of love to take a stance..against hate..simply the sake for LOVE...

It helps to try to make the best effort to understand people i think..instead of personally judging them..

But again...that is just my own experience..in living fortunately still @53....


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16 Nov 2013, 1:10 am

ASPartOfMe wrote:
I am not a lawyer but would not Autism Speaks have the right to refuse the rent money?
This is exactly what I was thinking, there has to be an ethical line drawn somewhere and the question is where should it be. So if the JRC's record is accepectable enough to be allowed into Autism Speaks' event then how unaccepectable do you have to be to be denied entry? Think about it, there still chose to associate with each other.

Also in responce to one of Vermont Savent's earlier comments, I do have limited experance with these types of places and I know that you don't have to be very defiant, dangerious or aggressive or anything like that to be recomended for placement in one, being different is sadly good enough.



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16 Nov 2013, 2:11 am

aghogday wrote:
The bottom line is that Autism Speaks is on public record as not endorsing the aversive shock therapy..and the bottom line is that some people in this discussion are suggesting they do..which is not any more a proper representation of the facts than Ms. Wright's all inclusive statement about the 3 million folks with Autism..

So in other words..it seems some of the folks here are led by their emotions..more than evidenced facts...

Well, I don't know who you can be thinking of, but I'm pretty sure I am looking at facts only a small number of which I presented here. You kind of have to look into the whole Skinnerian behavior modification model to know what this therapy is about and that is probably more than this thread can bear.

The bottom line for me is that Autism Speaks not only creates horrible propaganda about autism, but they made the decision to put the JRC in the resource area, this year. I think that makes sense: if you held the views of the leadership of Autism Speaks you would endorse organizations that used aversive behavior modification to eliminate unwanted behavior in autistic individuals. That seems to me to be a logical relationship, but perhaps I am so driven by emotion I am incapable of intellectual clarity... I do the best I can with mind I have.

Quote:
Really not that much different than Ms. 'Right'..in my opinion...

And why there is not much credibility seen in these type of discussions among anyone listening in that is not a member of the 'choir'..

I like facts friend....not myths...I bust them..that is all...


Well, you know, I used to think there was no point arguing about stuff like this. People never changed their views, etc.--and then a person who had been an opponent in such an argument came up and thanked me for having opened his eyes to the other view.

What's incredible to you may be convincing to others and I'm pretty sure none of us is in a position to determine who among the possible readers of these words is in one choir or another and what "anyone listening" may be thinking.

It's nice to see Autism Speaks distance itself from electric torture, but kind of sad to see you coming the defence of the JRC with "facts" like
Quote:
There is currently no evidence of any more potential illegal activity at the facility...so there is no reason why they could not participate by renting a booth at any WALK event.

What they do may or may not be illegal yet, but that doesn't make it right. Is there no other way to stop people from harming themselves? Or might that be a myth? Can we compare the kinds of treatment that are used for the most severe self-harming autistics in different countries and discover if some people are successfully prevented from terrible self harm without using pain-based behavior modification? I think there are more facts to be discovered and myths to be busted.

So the total below the bottom line, by my reckoning, is:
* Autism Speaks sucks: http://autisticadvocacy.org/wp-content/ ... _Flyer.pdf
* JRC is an obscenity and should be shut down. There are other ways.
* J.E.Robison did a great thing and expressed himself very well in doing it

I like Vermont Savant, though I did not like what he seemed to say in support of JRC. I hope that my arguments on those topics did not in any way seem bullying, that was certainly not my intention.



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16 Nov 2013, 2:12 am

aghogday wrote:
ASPartOfMe wrote:
I am not a lawyer but would not Autism Speaks have the right to refuse the rent money?


Since they are on record as not supporting the controversial therapy..there would be no reason not to allow the organization to participate as long as they were not endorsing the therapy in question...

Therapy similar to this is used throughout the US..by consent of individuals on the spectrum who can only control their aversive behaviors..with the aversive shock therapy..

It's certainly not for everyone..but some people do take this alternative over more dangerous potentials..like poking their eyes out.. to use an example that one might understand as severe..but this is the reality for some people on the spectrum that suffer so much that they self injure to escape the real psychological pain of sensory overload..which can be something a simple as a cricket singing..and many other issues too...

I understand this torture of autism as i regressed in middle age after complete human exhaustion...

When their is severe sensory integration problems the torture of the sensory integration issues can definitely be enough..to douse oneself with gasoline and light one's self on fire...It's no picnic in the park..by far....

But I am completely healed now..fully in remission of many auto-immune issues..and have actually cured the reciprocal social communication difficulties of autism on my own..as I score an 11 now on the AQ test as opposed to a 44 to 45..just 4 months ago...

Yeah ..hear that..I cured my reciprocal social communication disorder..and it is medically documented....

So yeah..with enough time and effort and appropriate therapies..Autism can be cured..even at age 53....

But I found the cure all by myself...

It's no secret..I'll tell anyone how I did it..that wants to PM me...

But I cannot promise it will work for anyone but me...

But yeah...IT did work..my therapist has all the medically documented evidence....


You did not answer the question. You just explained why you think it was ok they accepted the money.


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16 Nov 2013, 2:20 am

aghogday wrote:
More internet myths started up about autism speaks in online forums...

Autism speaks is on Public Record in not supporting the shock therapy used at the JRC..per this link...

http://www.science20.com/countering_tac ... nter-89143

The JRC is currently a legally run organization..so there is no reason why they could not rent a booth at an Autism Walk or at any other charitable organization function..the organization is currently being monitored and policed within the parameters of Massachusetts LAW..

There is currently no evidence of any more potential illegal activity at the facility...so there is no reason why they could not participate by renting a booth at any WALK event..

But never the less..renting a booth at a WALK fair certainly does not imply endorsement by Autism Speaks..they already have that disclaimer clearly posted on their site..that they do not specifically endorse any of the therapies..per services information provided on their site.. It is for information only..not medical advice...

And as much as you may not like it.. Vermont Savant..is the only one here that actually has experience in an institutional environment as an actual patient on the spectrum...he has insight here..that likely no one else has into the potential horrors of state institutions...

And nah...he does not have perfect grammar and spelling..but he is probably the only one in this moderate area of symptoms that is brave enough to post here...and I give him all the credit in the world for that...He deserves respect..not intellectual bullying....the only type of bullying that many so called higher functioning autistic people are 'good' at..most unfortunately.....
good way to put it.thank you


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16 Nov 2013, 2:25 am

IdleHands wrote:
Aghogday-
I'm glad, we seem to think similar. My particular downfall is assuming I'm being attacked when I'm not. In life I do not have to type in response, but since I had to type a response in gave me time to realize I may have it all wrong. I also agree that emotion was involved here. This thread would have been completely different if that video was not posted in it. It's horrible, autistic or not.
Vermont-
Hope I did not offend you. I realize that you were saying if JRC closed the alternatives for the kids are worse.

By the way, summer camp was actually torture for me; I was incredibly fat and had not learned to fake it very well yet. Kids squirted easy cheese in my hair and pinned me down and farted on me. They also held me down and took turns punching me in the back. Good thing my back was strong from years of childhood rocking.

At least the tourettes seemed to disappear early on; I was a nonstop throat clearer.

My childhood was pure sh**, which is why I mentioned the relative thing.

i am not offened and i dont blame others,shock thereapy is grotesque and i would not want anyone i know going to that.we just dont know where the abyss is below the JRC.
when large numbers of hosptals were shut down in mass in 1992 by the gov. weld admin,they first established group homes in place to take everyone


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16 Nov 2013, 2:37 am

aghogday wrote:
ASPartOfMe wrote:
I am not a lawyer but would not Autism Speaks have the right to refuse the rent money?


Since they are on record as not supporting the controversial therapy..there would be no reason not to allow the organization to participate as long as they were not endorsing the therapy in question...

Therapy similar to this is used throughout the US..by consent of individuals on the spectrum who can only control their aversive behaviors..with the aversive shock therapy..

It's certainly not for everyone..but some people do take this alternative over more dangerous potentials..like poking their eyes out.. to use an example that one might understand as severe..but this is the reality for some people on the spectrum that suffer so much that they self injure to escape the real psychological pain of sensory overload..which can be something a simple as a cricket singing..and many other issues too...

I understand this torture of autism as i regressed in middle age after complete human exhaustion...

When their is severe sensory integration problems the torture of the sensory integration issues can definitely be enough..to douse oneself with gasoline and light one's self on fire...It's no picnic in the park..by far....

But I am completely healed now..fully in remission of many auto-immune issues..and have actually cured the reciprocal social communication difficulties of autism on my own..as I score an 11 now on the AQ test as opposed to a 44 to 45..just 4 months ago...

Yeah ..hear that..I cured my reciprocal social communication disorder..and it is medically documented....

So yeah..with enough time and effort and appropriate therapies..Autism can be cured..even at age 53....

But I found the cure all by myself...

It's no secret..I'll tell anyone how I did it..that wants to PM me...

But I cannot promise it will work for anyone but me...

But yeah...IT did work..my therapist has all the medically documented evidence....


Another one. You and Goldfish ought to have a pow wow.

But seriously if you found a "cure" that all of science has missed why are you making people PM you. Why not release it?. Why don't you ask your therapist to allow you to release your "medically documented evidence". Let us decide if it is worth the risk. Is it because like the organization you defend you do not think autistic people should be allowed to decide? Better yet since you so worship Autism Speaks money and marketing why don't you give it to their researchers?


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16 Nov 2013, 8:35 am

ASPartOfMe wrote:
aghogday wrote:
ASPartOfMe wrote:
I am not a lawyer but would not Autism Speaks have the right to refuse the rent money?


Since they are on record as not supporting the controversial therapy..there would be no reason not to allow the organization to participate as long as they were not endorsing the therapy in question...

Therapy similar to this is used throughout the US..by consent of individuals on the spectrum who can only control their aversive behaviors..with the aversive shock therapy..

It's certainly not for everyone..but some people do take this alternative over more dangerous potentials..like poking their eyes out.. to use an example that one might understand as severe..but this is the reality for some people on the spectrum that suffer so much that they self injure to escape the real psychological pain of sensory overload..which can be something a simple as a cricket singing..and many other issues too...

I understand this torture of autism as i regressed in middle age after complete human exhaustion...

When their is severe sensory integration problems the torture of the sensory integration issues can definitely be enough..to douse oneself with gasoline and light one's self on fire...It's no picnic in the park..by far....

But I am completely healed now..fully in remission of many auto-immune issues..and have actually cured the reciprocal social communication difficulties of autism on my own..as I score an 11 now on the AQ test as opposed to a 44 to 45..just 4 months ago...

Yeah ..hear that..I cured my reciprocal social communication disorder..and it is medically documented....

So yeah..with enough time and effort and appropriate therapies..Autism can be cured..even at age 53....

But I found the cure all by myself...

It's no secret..I'll tell anyone how I did it..that wants to PM me...

But I cannot promise it will work for anyone but me...

But yeah...IT did work..my therapist has all the medically documented evidence....


You did not answer the question. You just explained why you think it was ok they accepted the money.


As a private organization..i personally think they could have refused the money..although I have not looked up any particular regulations that may exist on this..but that is not the way a professional organization works..they do not operate based on the -opinions of others..they operate on business principles..but of course they do falter occasionally and using MS. Wright as a spokes- person for the organization is definitely a mistake in my opinion...


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16 Nov 2013, 8:56 am

Adamantium wrote:
aghogday wrote:
The bottom line is that Autism Speaks is on public record as not endorsing the aversive shock therapy..and the bottom line is that some people in this discussion are suggesting they do..which is not any more a proper representation of the facts than Ms. Wright's all inclusive statement about the 3 million folks with Autism..

So in other words..it seems some of the folks here are led by their emotions..more than evidenced facts...

Well, I don't know who you can be thinking of, but I'm pretty sure I am looking at facts only a small number of which I presented here. You kind of have to look into the whole Skinnerian behavior modification model to know what this therapy is about and that is probably more than this thread can bear.

The bottom line for me is that Autism Speaks not only creates horrible propaganda about autism, but they made the decision to put the JRC in the resource area, this year. I think that makes sense: if you held the views of the leadership of Autism Speaks you would endorse organizations that used aversive behavior modification to eliminate unwanted behavior in autistic individuals. That seems to me to be a logical relationship, but perhaps I am so driven by emotion I am incapable of intellectual clarity... I do the best I can with mind I have.

Quote:
Really not that much different than Ms. 'Right'..in my opinion...

And why there is not much credibility seen in these type of discussions among anyone listening in that is not a member of the 'choir'..

I like facts friend....not myths...I bust them..that is all...


Well, you know, I used to think there was no point arguing about stuff like this. People never changed their views, etc.--and then a person who had been an opponent in such an argument came up and thanked me for having opened his eyes to the other view.

What's incredible to you may be convincing to others and I'm pretty sure none of us is in a position to determine who among the possible readers of these words is in one choir or another and what "anyone listening" may be thinking.

It's nice to see Autism Speaks distance itself from electric torture, but kind of sad to see you coming the defence of the JRC with "facts" like
Quote:
There is currently no evidence of any more potential illegal activity at the facility...so there is no reason why they could not participate by renting a booth at any WALK event.

What they do may or may not be illegal yet, but that doesn't make it right. Is there no other way to stop people from harming themselves? Or might that be a myth? Can we compare the kinds of treatment that are used for the most severe self-harming autistics in different countries and discover if some people are successfully prevented from terrible self harm without using pain-based behavior modification? I think there are more facts to be discovered and myths to be busted.

So the total below the bottom line, by my reckoning, is:
* Autism Speaks sucks: http://autisticadvocacy.org/wp-content/ ... _Flyer.pdf
* JRC is an obscenity and should be shut down. There are other ways.
* J.E.Robison did a great thing and expressed himself very well in doing it

I like Vermont Savant, though I did not like what he seemed to say in support of JRC. I hope that my arguments on those topics did not in any way seem bullying, that was certainly not my intention.


My statement was a generalized one...obviously there are exceptions to the generality of the metaphor of singing to the choir...

Currently aversive shock therapy is the only therapy that works for some individuals..by their own admission..that is their personal choice and in states that legally allow It..it is their legal right..

It really comes down to the dire circumstance if you want to be blind as compared to getting a relatively small shock...I'll choose the shock friend..

In fact I chose the worst pain known to mankind..over the prospect of having my nerves cut in my face for numbness to prevent it for atypical trigimenal neuralgia..for a full 5 years...

It depends on whose shoes you are wearing..when these type of decisions are made...

I have a great deal of personal insight on pain...technically more than 99% of the population that currently exists..as the pain disorder I had was probably one of the rarest cases on medical record..

It was called the suicide disease for good reason...

I can understand clearly why some people cannot understand how dire pain and misery can be..as it is impossible to understand some pain..unless a person actually experiences it...

My best day..of five years was when I had screws put in my tear ducts..for an auto immune system issue that prevented my eyes from making any measurable amount of tears to lubricate my eyes...

The discomfort of screwing the screws in my tear ducts took my mind off of the pain..for about 2 seconds..

Again..that was the best feeling i had in 5 years..I almost had an appetite back again..too..for about 2 seconds...

What may not make any sense to one person as far as these issues are concerned may make total sense to someone else..but not many people have this kind of empathy...

And no that's not their fault either..and why it's never good to personally judge why or why not..someone may do something that makes no sense to another person...as no one can really walk in another person's shoes...

And by the way..the flyer you quoted is full of exaggerated and/or incorrect claims..I already analyzed it in this thread...here:

http://www.wrongplanet.net/postt213857.html

And the ASAN organization is another one that will censor any opinion that is not in alignment with the 'party line'....

They simply will not accept different way of thinking ..when it comes to the real world..and that is truly sad...but it simply goes with the territory..where the individuals with the disorder may have very rigid ways of thinking..excluding anything.. including other people's opinions.. which do not meet their expectations..

And yeah..I have the disorder too..but through five decades of life..I have successfully adapted to the reciprocal social communication challenges through epigenetic and neuroplastic changes..and changed for the better to be a more fully rounded social animal...and that's science friend..not just an opinion....

I have effectively cured the reciprocal social communication part of the disorder..but yes.. officially.. since the disorder is technically considered a lifelong disorder..and one that can be adapted to...I officially still am diagnosed with the disorder..even though i no longer fully have the deficits as identified in the technical diagnostic manual...


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16 Nov 2013, 10:11 am

I am sorry to hear of your experiences with pain.

It's an interesting fact that we don't know what one another's experiences have been. I too know what it is to consider death an attractive alternative to pain. I have no belief that this gives me a better position from which to evaluate the pain experienced by others. My problem was corrected by surgery in less than two years, and the idea of enduring that for longer is difficult to imagine. I'm glad you made it through. Some seconds of that kind of pain seem to last thousands of years.

Maybe a lot of other people here have a lot more experience with all kinds of positive and negative experiences than is immediately apparent.

Your information on the JRC differs from the accounts I have read in newspaper articles and he JRC's own literature. The facts that they present is that some people were sent there involuntarily by court order. They did not volunteer. Former staff report that the electric shocks were not short and were delivered at such length that they burned the skin of the victims. This is NOT electroshock therapy such as is used to combat severe depression. The GED is a device designed with the sole purpose of causing pain. There is no other effect of this system.

I think you are confusing electroshock therapies that are meant to achieve a change in the brain or nervous system with this device designed to cause pain. I don't believe Dr. Israel's device is in use in any other facility I the nation. If you have other information, I would like to learn it.

I am thinking maybe this topic needs it's own thread, so that this one can refocus on Mr. Robison's laudable action and statement.



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16 Nov 2013, 11:12 am

Adamantium wrote:
I am thinking maybe this topic needs it's own thread, so that this one can refocus on Mr. Robison's laudable action and statement.

Interesting that when someone disagrees with the way oneself has interpreted certain material and presents a differing interpretation then one wants two threads, but the person who has presented the original material is in this case yourself, as you brought up the shock therapy and posted the video.

If everyone agreed with you then I doubt you would want another thread.

I think sorting and grading is important, and the reason this kind of problem exists is that people try to lump too much under one tent and then impose the way they are doing this on others, but the possibility potentially exists for a comprehensive mind to discover creative ways to process and interconnect information which can lead to epiphany and new solutions.

I can see starting another thread if you want to go specifically into how this shock therapy differs from shock aversion therapy, but to me you did not really seem to be discussing this person's action in resigning from that group when you posted the video. He was talking about something else in his letter.

I see your posting of that video as a reaction to a generalized statement of this other person regarding Autism Speaks not being so bad. If you think this aversion shock therapy is so terrible (which it does seem to be) then surely you have already made thread about it on WP before this thread here was even started, so my suggestion is to post a link to that already existing thread, and people can decide for themselves how to card that material.



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16 Nov 2013, 11:23 am

Adamantium wrote:
I am sorry to hear of your experiences with pain.

It's an interesting fact that we don't know what one another's experiences have been. I too know what it is to consider death an attractive alternative to pain. I have no belief that this gives me a better position from which to evaluate the pain experienced by others. My problem was corrected by surgery in less than two years, and the idea of enduring that for longer is difficult to imagine. I'm glad you made it through. Some seconds of that kind of pain seem to last thousands of years.

Maybe a lot of other people here have a lot more experience with all kinds of positive and negative experiences than is immediately apparent.

Your information on the JRC differs from the accounts I have read in newspaper articles and he JRC's own literature. The facts that they present is that some people were sent there involuntarily by court order. They did not volunteer. Former staff report that the electric shocks were not short and were delivered at such length that they burned the skin of the victims. This is NOT electroshock therapy such as is used to combat severe depression. The GED is a device designed with the sole purpose of causing pain. There is no other effect of this system.

I think you are confusing electroshock therapies that are meant to achieve a change in the brain or nervous system with this device designed to cause pain. I don't believe Dr. Israel's device is in use in any other facility I the nation. If you have other information, I would like to learn it.

I am thinking maybe this topic needs it's own thread, so that this one can refocus on Mr. Robison's laudable action and statement.


Yes I agree with Mr. Robison laudable action and statement..but this is a complicated issue..and the side issue of aversive shock therapy is the real focus that people are using to attempt to soil the reputation of autism speaks..as the other issue with Ms Wright is simply that she misspoke on the details of the statistical facts about the full demographic of the autism spectrum which is fully documented in the professional guidance on the website...

I have done a great deal of research into aversive shock therapy and am fully aware of all the nuances of this therapy..

My points on the therapy..are ones of states where this aversive shock therapy is legal..and no not electro convulsive shock therapy as my college education is in the science of psychology too..and I am fully versed in the pros and cons of this therapy too...

The difficulties of autism that are mostly sensory in effect..including extreme levels of emotional contagion for the distress of others...can be extremely severe..and in fact for me at one point..were almost more difficult than the documented worst human pain of trigeminal neuralgia..although there is no measure at this point for severity for sensory integration problems that are at the severest levels for some who experience autism spectrum disorders..

Modern science is just now beginning to understand that the human stress response that includes adrenaline associated neurochemicals works to moderate the sensory integration process..

At total human exhaustion the stress response is almost completely compromised..

Adrenaline works in part to regulate the autonomic nervous system..and in my case my exhaustion was to the point where I was diagnosed with dysautonomia..which basically means that my blood pressure and heart rate were no longer properly controlled by my brain through my nervous system..

I would almost pass out when I raised my arms...

I feel quite sure that young people who are constantly in a state of hyper vigilance fall to this same physiological issue..per sensory integration difficulties...I was stronger than most..so it took me to age 48 to get to total exhaustion....

Well rather than go in more new detail here I will copy and paste an anonymous PM request from another poster into the inquiry of how i cured my reciprocal social communication difficulties with autism..and along with that came the remission or recovery of about 17 other diagnosed health problems...

Sorry..if you are not interested in it..please ignore it..if so..but i know for sure that something in it might help someone in the listening audience..so for that potential effect I will include it now..

Response to a private message request on Wrong Planet whose originator I will leave anonymous..

XXXxX wrote:
I am interested in your cure. If you do not mind please share what you have done and what afflictions have been reduced.

Thank you
Aghogday Wrote:

I suffered from the effects of Autistic Burnout starting at age 46 and accelerating to full human exhaustion at age 48 with over 17 diagnosed disorders..including rare pain related and auto-immune system related issues..

There was no possibility given by medical professionals that I would ever recover…

I am documenting the full recovery process in my blogs and on my flicker feed in actual photographs down to the detail of my actual physical health in recovery..

My reciprocal social communication difficulties were so severe that I could not effectively communicate with anyone in real life..and my sensory integration difficulties increased to the point where dancing with the stars was like fireworks..and a mockingbird sounded like a freight train…

I was diagnosed with Sjorgren’s syndrome..dysautonomia..fibromyalgia..severe arthritis..stenosis of the neural canals of the neck..carpal tunnel syndrome..vaso vagal pre-syncope..hypogonadism..severe depression..anhedonia..mood lability..severe anxiety..postraumatic stress syndrome..alexithymia..atypical facial pain associated with trigeminal neuralgia making effective use of my right eye and ear impossible for over 5 years..severe tactile sensitivity disorder..adhd..and Pervasive Development disorder not otherwise specified as my language delay until age 4 excluded me from the Asperger’s diagnosis..but I check every box for a diagnosis per Gillberg criteria that does allow for that language delay and more closely reflects what Hans Aspergers actually described in his case studies…

A picture tells a thousand words..I have over 15 thousand pictures in my flickr feed evidencing what I can do as far as interacting with other human beings as well as how much my physical health has improved…

One thing that has helped is taking many pictures of the expressions of my face to better find the ability to express emotions to others..I had no idea what my expressions were or what they looked like before…It was a complete cognitive disconnect…

As far as my reciprocal social communication difficulties..I started out here writing back on November 26th of 2010 to attempt to escape the worst pain of trigeminal neuralgia as no drug will touch this type of nerve pain…

Each word I typed at that point was like moving a mountain because of the pain and exhaustion that was my life at that point..but i marched on with every word…that now amounts to close to 7 million words at the end of this three year period of writing coming up in a couple of weeks..

I could not connect language with the extreme emotional contagion I experienced my entire life..which is the essence of alexithymia..and one of the understand greatest difficulties of autism as this difficulty associated with empathy and reciprocal social communication affects about 85% of people on the spectrum..

I was a visual thinker..not a verbal thinker before I lost effective use of my sight…

Organizing my mind to be a verbal thinker was the most difficult thing I ever did in my life..but there was simply no choice if I wanted to survive…

So as you see..my experiences and my adversity are unique..so my adaptations as successful as they are may be only unique for me in the potential for the overall healing process in overcoming these difficulties…

One of the greatest adaptations for me..was to get involved with out of the box thinking in writing free verse poetry in a ‘beat’ type of way…like Jack Kerouc..

I had no outlets for real creativity most of my life..and this in one of the main things that opened up the emotional and language centers of my brain to work in tandem instead of islands that never met…

My therapist who worked her tail off to try to bring my emotions back to me for over 2 years..says my recovery and methods used for that recovery are unique and the speed of my recovery..in regaining my fullest reciprocal social communication abilities of my life..are nothing less that a miracle in her decades of extensive experience working with people on the spectrum…

My autoimmune issues are considered in remission..I retired at full early retirement benefits from the government and received social security disability benefits at first try with my own effort with over 100 pages of medical documentation..

So I spend a little time here to try to inspire some of these folks that may be listening in on the posts that are not brave enough to get out there in the public eye and communicate..that almost anything is possible if you just do not give up and keep looking for a way to make things work…

One unusual thing that i found to be very effective in eliminating all my anxieties including social anxiety is walking in reverse…

I was an Athletic Director for a military installation for the government and have degrees in health science..social sciences interdisciplinary and anthropology..so I have some technical background in what works and what may not work for improving well being..but this is not an activity that is recommended in the mainstream in either the medical profession..or even in fitness facilities..

It is very popular though in China and Japan..

The benefits are clear i think..it improves focus of mind..vision..posture..and health in general..as well as confidence…

I have never felt fully comfortable in my own skin until now…

If there is one combination of things that helped me more than anything else it is probably the reverse walking listening to emotional music on my ipod/iphone..and getting out there in the general public..and actually making myself make reciprocal social communication interaction contact with complete strangers…

I have actually moved from full introvert to full extrovert in a matter of several months…

More of this is detailed in my blogs..and flickr feed..and I do leave no stone unturned..or unexplored…

I have a new understanding of what I understand as GOD also..that is very far from the norm of what most people believe in this country but it is also an integral part of my recovery in connecting back as a full human being again..

I always had extreme emotional contagion for others..before I got sick…but now I can demonstrate empathy for others too…which is a ‘GOD send’ in my 24 year marriage..and a beautiful thing to actually make friends with people in real life…

I’m sorry I know this probably sounds somewhat generalized..but I would probably have to write a novel to explain the whole thing..and in reality my blog.. the main one called Katie Mia Aghogday views from the autism spectrum and beyond documents the whole process in real time..before I was recovered at all..until now..

From March 10th of 2013 to date…

Many of my ideas and methods are documented in the commentary of my word press blog…2

I am financially independent at this point in life..early..I have no desire for more money..and I hope to better consolidate my methods and ideas to help people better at some point..but my motivation is simply to love at this point…and to use unconventional out of the box methods of thinking and doing…to really make a potential difference in someone else’s life..too…

I am a much greater force in real life than in writing..though..as writing was never something I thought I would do before I lost effective use of my sight..

There are lots of visual thinking autistic people who would never communicate in writing on the internet..they are likely playing video games as we speak now..that is what I used to do for recreation ..before I lost effective use of my sight…

I really cannot expect anyone to give up their sight to recover from reciprocal social communication difficulties..so there again is the possible limitation of my successful methods..to overcome these difficulties…

But thanks for asking..I always enjoy trying to helping anyone i can…but I also like disagreeing too as that is how i learn the most from other people….

And yeah..I often play the role of devil’s advocate..which in itself has probably helped as much or more than anything else because it taught me much about what goes on in the internal workings of other people’s minds..an area I was quite isolated from before..smiles..and thanks again for asking!


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16 Nov 2013, 12:06 pm

"Soil the reputation of autism speaks?"

I think they already did that to themselves with their crapulous video and the statement Robison objected to.

Is it fair to tar them by association with JRC? it seems to me that there is a logical connection between the official view of autism promoted by autism speaks ( the nightmare that will steal your children and ruin your marriage, finances and happiness and leave you in a state that cannot be called living) and the brutal conditioning used by the JRC. So while renting the table to those guys is a very weak connection, thinking that treatment by "any means necessary" is an approach that makes sense is a direct consequence of the Autism Speaks viewpoint.

It is also true that we have people drawing on this same idea of autism as justification for parents who choose to kill their children "for their own good" -- Autism Speaks doesn't argue directly for those parents, but it does argue their points.

We may have an irreconcilable difference on this point. I do really see what autism speaks says as contributing to these very bad things. I grant that they don't official condone torture or infanticide. But I think their argument that an autistic life is not life at all is indistinguishable from the arguments in favor of torture and murder.