"I resign my roles at Autism Speaks" John Robison
16 Nov 2013, 12:59 pm
Adamantium wrote:
"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.
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.
You seem to be missing the general gist of the resignation letter. When that one person made the comment that autism speaks wasn't all that bad, this is where you went off base. To me, it is subtle in your case, but there is a rant like quality....
Yes, generalized thinking can lead to torture, but it can also lead to great compassion. It just depends on how the details are organized. The thing about your general approach, which imo is not scientific thinking, though you are really quite personable and I genuinely like you, is that you are missing seeing the forest because of the trees.
I can see why you might want to respond to that one person's statement that Autism Speaks is not so bad, but I do not know if a detail is necessarily the antidote for a generalization. It would seem to be an antidote, I understand, but basically it leads into a maze.
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 68
Gender: Male
Posts: 39,637
Location: Long Island, New York
16 Nov 2013, 1:00 pm
Adamantium wrote:
"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.
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.
I do not believe Ms. Wright's "campaign" were emotion speaking but was intentionally worded that way. In my view it is all shock tactics designed to emotionally manipulate people into transferring money from themselves to Autism Speaks. They have to put out a statement condemning torture not because they care but to cover their behinds in case something happens that would bring bad publicity or worse yet prosecutors. It's a fine line but until now they have not gone over the line and it has made them a lot of money because it does strike a chord with certain NT's . Personally I do not think there is much risk from prosecutors. With funding from NBC and backing from Congress any District Attorney knows it could be career suicide to go after them. So unfortunately the chances of stopping what in my view will be a mandatory "cure" their researchers are working on is minimal but minimal chances better then no chance, stranger things have happened etc. If a miracle is to happen it will come from the internet. It is not just this site but from what I have seen universal condemnation and contempt online and is even getting a little mainstream media notice http://www.forbes.com/sites/emilywillin ... ak-for-me/ http://blog.sfgate.com/lshumaker/2013/1 ... speak-for/. Most mainstream coverage remains laudatory http://newcanaan.dailyvoice.com/sports/ ... ism-speaks
_________________
“Self Acceptance is a process not a performance”
“You are autistic enough. And you always have been”
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.
16 Nov 2013, 2:22 pm
Adamantium wrote:
"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.
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.
It was indeed a bad move for Ms.Wright to make her statement...and it may have been orchestrated but she does have a history of speaking her emotions on a dime..as many people do..so I seriously doubt that the actual marketing team would put her up to saying something that would actually cause all this noise for their website...
But..my intuition tells me she doesn't care much for people who have been attacking the organization..and quite frankly I don't blame her as I indicated before that I watched my child suffer and die from a co-morbid condition associated with autism..that Autism Speaks does indeed fund research for so that in the future a child like mine may not die..at some point..
I have actually had people tell me that I am wrong and my child didn't die from a co-morbid condition associated with Autism..online..it's surely a good thing they did not do this in person...as I am an extremely powerful person in real life..that no one yet has been afforded the reception of the potential of what could happen if I ever became violent..but so far I control that in real life and that is good...
I am telling you this for one reason and one reason only..anyone here that doesn't understand the dire nature of this issue and how important research for the co-morbids associated with Autism and the real research that Autism Speaks funds associated with that..is clueless into the real potential of death associated with Autism...
I am coming from a completely different place here and so is Ms. Wright as her grandson is impacted by one of the most severe forms of autism..that has little to nothing to do with Asperger's syndrome...
So in other words..the complaints here about a few words that are misspoke in a statement are nothing compared to a child suffering and dying..not even one....
This is not a black and white issue and never will be....
I do not get angry about much in life..but even an attempt at taking away the potential for lives to be saved by individuals who come to believe immature conspiracy theories..is disgusting in my opinion..and yes only my opinion..believe what you want friend..it is you and your eventual destiny alone at stake....in general... as in reality this is all just a waste of time..as far as any negative impact on the autism speaks organization..they are just too powerful..it is as simple as that....
_________________
KATiE MiA FredericK!iI
Gravatar is one of the coolest things ever!! !
http://en.gravatar.com/katiemiafrederick
16 Nov 2013, 2:40 pm
ASPartOfMe wrote:
Adamantium wrote:
"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.
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.
I do not believe Ms. Wright's "campaign" were emotion speaking but was intentionally worded that way. In my view it is all shock tactics designed to emotionally manipulate people into transferring money from themselves to Autism Speaks. They have to put out a statement condemning torture not because they care but to cover their behinds in case something happens that would bring bad publicity or worse yet prosecutors. It's a fine line but until now they have not gone over the line and it has made them a lot of money because it does strike a chord with certain NT's . Personally I do not think there is much risk from prosecutors. With funding from NBC and backing from Congress any District Attorney knows it could be career suicide to go after them. So unfortunately the chances of stopping what in my view will be a mandatory "cure" their researchers are working on is minimal but minimal chances better then no chance, stranger things have happened etc. If a miracle is to happen it will come from the internet. It is not just this site but from what I have seen universal condemnation and contempt online and is even getting a little mainstream media notice http://www.forbes.com/sites/emilywillin ... ak-for-me/ http://blog.sfgate.com/lshumaker/2013/1 ... speak-for/. Most mainstream coverage remains laudatory http://newcanaan.dailyvoice.com/sports/ ... ism-speaks
Emily Willingham writes an Op-ed for forbes online magazine..that is far from from mainstream coverage..
No one would take this serious in the general public..overall..as everyone knows how serious severe cases of autism are..and most everyone is indeed terrified of having a child with this condition..and yes for good reason..
That is the simple truth and nothing anyone says here is going to change that..whether I agree with how this is presented in the media or not..Hardly anyone in the 'real' world reads Emily Willingham's articles..most of the comments are by people singing in her choir associated with the thinking person's guide to autism websites...
I know because I have a long history of commenting on that particular OP ED..and most of the time I agree with her points as she is a very intelligent and well spoken individual..but The Thinking Person's Guide to Autism is another cliquish site where anyone who doesn't agree with the party line gets their opinions banned or deleted..and yes I have documentation to prove that..per how credible anyone is the real world is going to take anything associated with TPGA..as they censor opinions that they don't agree with...
I simply offered compassion for a women that killed her child and attempted suicide..as all human beings do who can separate a crime from humanity..who have real empathy..can do in real life..there is no one on that site that is capable of understanding that....most unfortunately and that is truly sad..in my opinion...
It's not easy being a human being..and people do fall to the dark side of life...but they are still human..just like autistic people....
_________________
KATiE MiA FredericK!iI
Gravatar is one of the coolest things ever!! !
http://en.gravatar.com/katiemiafrederick
16 Nov 2013, 3:38 pm
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
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
Ok, that's good to know. Honestly, I've never even heard of Autism Speaks supporting the JRC before reading this thread. I'm glad to find out that they don't.
aghogday wrote:
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..
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..
While partially true, that's not completely correct. As far as I know, what has happened was that they've banned the use of the GED on new students. However, the GED device is still allowed to be used on older students for whom it has been court ordered. So, while they may have complied with the ban on the use of electro-shock aversives on any new students, it is still used on around 40% of the students according to what I can find out.
aghogday wrote:
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…
Yes, I agree that them renting a booth there does not mean that Autism Speaks endorses them. Although, I'm not sure why they allowed them to rent a booth in the first place given their statement opposing their electro-shock aversive therapy that you linked to earlier. Otherwise, I still can find no evidence online that they support it after extensive google searching.
aghogday wrote:
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.....
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.....
I haven't attacked Vermontsavant, though from his earlier post, I can see why some people might think that he supports the JRC but I'm not saying that he does. What do you mean by intellectual bullying?
16 Nov 2013, 3:44 pm
I can answer that - telling him he's not worth speaking to because he has a view different from the person saying it. It curdled my stomach. There is a lot of bullying going on this site, some people are just intolerant of the idea that they and only they know what is right about any subject they discuss and woe to anyone who adds something else to the discussion. There are a few people, you see it in every thread they go into, can't have a respectful conversation.
16 Nov 2013, 3:54 pm
aghogday wrote:
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!
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!
I still don't think that you're talking about electro-shock aversive therapy as it is used by the JRC. You may be talking about therapeutic uses of electro-therapy that were meant to help with all symptoms that you were experiencing including the extreme pain that you experienced. However, electro-shock aversive therapy as used by the JRC is specifically used for behavioural modification and is not designed to help with neuralgia or sensory integration problems. The JRC uses electric shocks only as punishment for undesirable behaviours, it does not help with the actual causes of those behaviours whether they happen to sensory integration issues or other problems. So, not only is it inhumane, it basically only treats the symptoms but not the cause according to every single psychologist I've heard talking on the subject. As far as I know, the JRC is the only facility in the United States that uses electric shocks as negative reinforcement for undesirable behaviours in that way. In fact, it's the only facility in the world that does it. Whatever you were treated with that helped with your symptoms is not the same thing as what the JRC is using because that's not what it's designed for.
Verdandi
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16 Nov 2013, 4:13 pm
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.
He has no answers. He will never have answers. He just wants to convince people to not speak critically about Autism Speaks.
Like he seriously thinks that Autism Speaks saying "JRC's methods are bad" is enough when they turn around and allow JRC to participate in their summit. If they were truly against JRC, why did they allow them in? The way he goes on about how they do nothing illegal and how Autism Speaks had no reason to refuse their participation even though they voiced their disapproval makes no sense. Much like his argument that how much money Autism Speaks brings in is proof of their virtue and the purity of their intentions.
But then he turns on people on this website and accuses them of only talking about things and not taking action on them. It's strange how he can intuit that people who talk about things here only talk about things and never take action, but then turn around and say "it's okay that Autism Speaks has taken no action regarding JRC because it should be enough that they talked about it." Such a huge double standard and typical of aghogday's participation in Autism Speaks threads - everything you do is wrong, everything Autism Speaks does is not only right, but all the things they do wrong is actually evidence of their being right.
Vermontsavant, I am sorry for being so militant the past couple of days. I still disagree with your statements, but I see you do not support torture.
16 Nov 2013, 4:26 pm
Yes, let's get some terminology here so we are all talking about the same thing.
"Electroshock therapy", such as used at the JRC, involves putting electrodes and a battery backpack on a resident, with staff having the remote. This allows for automatic administration of severe pain as punishment for undesirable behaviors such as stimming, being uncooperative, or just annoying the staff.
"Electroconvulsive therapy", or ECT, is a mainstream treatment for severe depression. It involves putting someone under general anesthesia and inducing a seizure by applying electrical current to the brain. It is used as a last resort because it can cause memory loss and minor cognitive problems (along the lines of what you might get with a concussion), but it can be an effective treatment. ECT has not always been used humanely; in the past, it was used on unanesthetized patients and on people who did not benefit from it because they did not have depression. In modern times, it is used rarely, when medication and other treatments have failed, and practically always with patient consent (family consent, in those cases where a person is too depressed to respond to their environment).
rTMS, a newer alternative to ECT, is a less invasive form of brain stimulation. It uses magnetic pulses and can be used on a conscious patient, and is quite safe. But it is less well-researched and still partly experimental.
There are other therapies that involve electricity and the nervous system, and they all work on similar principles: A small electrode is implanted, and a battery is attached. The first such devices were pacemakers for the heart's electrical system. There are deep-brain stimulation devices for Parkinson's patients, whose movement disorders may be alleviated. Vagus nerve stimulation may help people with depression. Some of the newest devices allow people with locked-in syndrome to control computers via biofeedback. Many of these are also still experimental, and of course they are invasive because the electrode is actually implanted, with the surgery necessarily causing some damage.
Electrical current is also used by doctors who work with muscle problems. A current can cause a muscle to contract, and for patients recovering from injuries or dealing with atrophied muscles, this application of electricity can help with rehabilitation.
So let's review: Electricity and mental patients isn't always a bad thing, but when it's bad, it can be nightmarish. Just remember to distinguish between abusive "therapies", risky therapies that can be helpful, and relatively safe therapies which are minimally invasive.
_________________
Reports from a Resident Alien:
http://chaoticidealism.livejournal.com
Autism Memorial:
http://autism-memorial.livejournal.com
Verdandi
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16 Nov 2013, 4:44 pm
aghogday wrote:
More internet myths started up about autism speaks in online forums...
Just stop. Just because you disagree with a fact or do not like it does not make it a myth.
Quote:
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
http://www.science20.com/countering_tac ... nter-89143
Oh so they put a statement on the internet but then did nothing in the real world of flesh and blood to put a stop to JRC's methods. I thought that was something you hated - or do you only hate it when you think it's autistic people criticizing your favorite organization?
Quote:
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..
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..
No one has said a thing about whether JRC's methods are illegal. In fact, JRC started in California, but had to move because what they were doing was illegal there. They tried to set up in New York but again it was not legal there. They finally ended up in Massachusetts where what they were doing was legal, but this does not make its methods ethical or unquestionable. Just being legal is not sufficient. Laws are not automatically just and many laws are quite unjust. Appealing to legality as a justification is a weak argument.
Quote:
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...
Actually, it does imply endorsement. Just because they say they do not specifically endorse any of the therapies, the fact that their opposition is only so much words and not a refusal to allow them to present at their Summit makes it clear that the voiced opposition was at best a gesture, at worst a lie.
Unless you live in aghogdayland where Autism Speaks must never ever be criticizied - and if it is then you have to shout it down until people go away. Which I guess has worked for you for the past few years, but mostly because most people don't have infinite patience to deal with your tireless defense of an organization that does very little for autistic people.
Quote:
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...
That still doesn't make daily use of shocks (not ECT, but torture) justifiable or necessarily better. I would also hesitate to assume that he is the only one here who has had such experience. Many posters on this forum have had such experience and spoken about it.
Quote:
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.....
There was no bullying and no "intellectual bullying." I don't recall seeing anyone making comments about his grammar or spelling (I certainly did not). He's not the only one on this forum in a moderate area of symptoms, but one of several.
Plus you again assume that anyone you do not agree with is "higher functioning." It's interesting how you keep using that as an accusation and an attempt to define people out of impairments, making it seem like that anyone you disagree with is barely impaired and has no real stake in this discussion.
Do you want intellectual bullying? Every single time someone has posted anything critical of Autism Speaks, you've stepped forward to shower them with endless walls of text about how Autism Speaks is really the best Autism organization ever and if they disagree then they are lying, spreading internet myths, creating an external enemy to maintain a cohesive community, etc. etc. etc. Your accusations, groundless as they may be, are endless until people finally get tired of engaging you and simply stop interacting because you never ever stop. And how about the way you look down your nose at those of us whom you perceive as not doing enough activism? Like lecturing us that at least Autism Speaks is out there raising money and doing stuff. All we're doing is complaining on the internet. And I am so damned sorry, Aghogday, that my autistic, in chronic pain, majorly depressed self is just not productive enough for your standards that I cannot overcome my disabilities sufficiently to do more than the grassroots activism that has been a major part of my life for the past several years. How is what you do in that regard not a form of bullying? You attack from every angle and then accuse others of being the bully.
Also it is hilarious for you to be lecturing people who might be living in poverty and have had very difficult times finding work that lasted more than a few days to a few months after having had to retire from a lifetime career that left you with a fairly lucrative disability benefit once you did hit your burnout. Please keep telling those of us arguing with you how we're the ones who are the "highest functioning" who "did well in life." I'll laugh all the way to DSHS as I go back there this month to make sure my SNAP benefits don't stop - I already had my extremely meager disability benefit (ooh $197/month) reapproved last month while I wait for approval for SSI. On what planet does it make sense for an affluent middle class dude who was only recently too disabled to work to lecture a disabled woman who has never been able to work or earn an education due to burnout coming after three months instead of three decades on how much harder other people have it?
I'm not saying I have had it worse than everyone else. By no means is that true. But that generalization you made is not accurate. You're just not going to stop with the "You're too high functioning to have a voice in these conversations" comments, are you?
16 Nov 2013, 4:53 pm
Verdandi, you have no idea how hard it is to work for a living every day all day when you are on the spectrum. You say "burnout" like it's something he made up to get money. You have NO idea! Just because we force ourselves to do it, in no way means it's easy for us. I have to be careful with my brain not to get PTSD from my job sometimes. You're ranting gets tiring.
Verdandi
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16 Nov 2013, 5:01 pm
vermontsavant wrote:
^
i think what he means is that i am picked on sometimes because my writing and grammer are poor
i think what he means is that i am picked on sometimes because my writing and grammer are poor
I don't pick on people because of their writing and grammar. I don't really pay attention to those things, and they had nothing to do with my responses to your statements about JRC's methods, I wasn't trying to pick on you. I saw you describe JRC's methods as "summer camp" and how that hellhole is the last hope for these kids, and I was angry about that and just that.
aghogday tends to divert discussion into things that didn't actually happen and mischaracterize people as doing or being things other than they really do and are. At least, this is what happens in Autism Speaks threads where he acts like a PR person in damage control mode to shut everyone down so his version of events/reality gets to be the most loudly stated.
wozeree wrote:
I can answer that - telling him he's not worth speaking to because he has a view different from the person saying it. It curdled my stomach. There is a lot of bullying going on this site, some people are just intolerant of the idea that they and only they know what is right about any subject they discuss and woe to anyone who adds something else to the discussion. There are a few people, you see it in every thread they go into, can't have a respectful conversation.
Well, let's not erase what exactly the expressed view appeared to be? He seemed to be defending JRC's use of torture. Is there really any point to talking to someone who is defending torture? Are all ideas equal in the so-called marketplace of ideas? Is saying that torture is okay really a respectful conversation? I have no desire to debate the merits of torture with anyone, and if it curdles your stomach to hear "I see no reason to talk to you if you're going to debate torture" then I'm sorry but not really sorry. I did apologize to vermontsavant because his statements made me quite upset and I didn't give him as much benefit of the doubt as I would normally (although at this point on this forum, my capacity for benefit of the doubt is worn down to a nub).
As far as this forum goes, it's not really the place it was even a year ago. It's certainly not a place I enjoy coming to. I mean, it's great if you want to read a lot of negativity about disability and about the idea that people might have impairments they can't just overcome with more effort. If you want to be lectured on how you're overly entitled because you can't work and need benefits so you don't starve to death or end up homeless. If you want to read discussions about how buying food with SNAP benefits is somehow cheating the system because it's the wrong kind of food. If you want to be accused of drama by people who post provocative things and then act like the problem is that the response was not positive enough and not what they wrote in the first place.
I can have a respectful conversation, but I am not likely to have one when dealing with any of those things, as those things are inherently disrespectful. The disrespect doesn't begin with "what you just said there was horrible." It starts with the fact that those things were said in the first place.
But what do I know? I'm just an overly entitled super high functioning successful person who is so unreasonable as to suggest that a quiet room for me to work in might actually make it possible for me to last for more than a few months before I can't function at all on the job and lose it due to overload, burnout, shutdown, and meltdowns. /sarcasm
Verdandi
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16 Nov 2013, 5:03 pm
Adamantium wrote:
"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.
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.
^^^^^
This.
Verdandi
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16 Nov 2013, 5:11 pm
wozeree wrote:
Verdandi, you have no idea how hard it is to work for a living every day all day when you are on the spectrum. You say "burnout" like it's something he made up to get money. You have NO idea! Just because we force ourselves to do it, in no way means it's easy for us. I have to be careful with my brain not to get PTSD from my job sometimes. You're ranting gets tiring.
No, I absolutely believe he burned out. My point is that he's pointing fingers about who has it better and he had it really good for a very long time and when he finally burned out he ended up with significant amounts of support and benefits. He doesn't have it great, but he has no idea what things are like for me, and trying to characterize myself and others the way he does purely on the basis of disagreement is BS.
I have burned out multiple times - every time I've tried to work a job or attend college it ended in burnout. I know what it's like to work for a living every day all day on the spectrum because:
* I am on the spectrum
* I have worked for a living
* Doing so has led to burnout, lost skills, reduced functioning, reduced capacity for ADLs, long periods of time where I couldn't do much of anything. Over and over and over again.
* I already have PTSD.
16 Nov 2013, 5:17 pm
Quote:
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...
What do you define as "experience in an institutional environment"? Does more than 6 months in a mental hospital for residential treatment count?
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