"I resign my roles at Autism Speaks" John Robison

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^^^^^
Eminem Aspie...

Your writing style is effective, just odd...

But on this site, is anyone really normal?

Well..thank you.. you got ahead of me..while I was editing my last response...

That is an effective way to verify and validate communication...

As your comment sounded like criticism..but it was just not fully explained...

I love being odd..

I am odd..

In fact I am the only one that walks in major malls in reverse..in a dancing type of style..especially at 53...

But as Miley Cyrus says...

I don't give a f**k about what people think or say about it ....

Cause it feels good..

And I can actually prove It...

That it is beneficial to health...

As I have a body of a 21 year old college athlete...still a 53...

It's in my flickr pictures...

lt's like Steve Jobs said..

It's the ones who think differently...the 'crazy one's' that really change the world..

People in my local community are starting to walk in reverse on public sidewalks...

They watched me enough in Super Walmart ..likely tried it out for themselves..

And determined..hey..this guy is on to something..

'My frigging knees and back no longer hurt'....

Oh my GOD..some Autistic folks can do amazing things...as they simply don't see the same limitations..that other people do....

I don't just talk about neurodiversity...

I do IT in real life..and set the example for the herd....

I wish people thought of my quirks as trendy

Thanks for the clarification...

But at least..in some cases I'm not sure he misrepresented it...

As I am unfortunately still..unwittingly putting my wife in some unusually uncomfortable places...

As my experience of the environment and world are so..so..so..different than hers..

I do not usually feel heat or cold...and I would be the one blaring my sound system with the windows up on an 80 degree day with no air-conditioning...

Regardless of if it was making my wife have a horrible bad hair day...that was making her miserable...that would really make no sense to me...as I usually have good hair days..anyway..for what is left of it..haha...

I don't have a problem admitting the challenges of what is an actual disorder..of empathy..in effect..of how it affects others in real life..situations...

My wife of 23 years..is actually saint material..to have made it that far with someone like me...

I'm not too egotistical to understand that reality is true....

But it took me decades of careful analytical analysis..to come to these truer insights..

That i see now..It ain't easy...

That is all...

Last edited by aghogday on 18 Nov 2013, 9:51 am, edited 1 time in total.

Well...I get a lot of comments that I am crazy..a weirdo..and all that stuff too...

But I am actually permanently disabled with 17 different diagnosed disorders....

Many of them in remission..thank GOD..NOW...

Including Stenosis of the Neural Canals of my spine...

So whenever a security guard at Super Walmart or Bells tells me that Reverse walking is too weird for the herd..

I simply call the Store Manager..and have a little talk with them about the ADA and accommodations for invisible disabilities...

And i get really good treatment from the store officials from that point on...

That's the other thing..that's great about the US..we have some rights to be 'weird'...

It's horrible in some other countries..

I would have probably been killed by now..for some of the ODD things I have done in my life ..here.. there...

I am proud more than anything to be an American Citizen...

It ain't perfect...

But hey..I can walk in major Malls in reverse in a dancing style..and retain protection from the powers that BE...

This is proof enough to me...that I live in a great country...

Yeah..I am kinda patriotic too....

I kinda like you..

Your kool...

Good luck to you..

2..

Yeah free verse poetry is another odd thing I do....

Even in the most unlikely of places....

Graham, that material is symbolic...something about brain function....Some people do not have the propensity and/or interest to understand that kind of material...or a person could learn to....Anyway, in my mind what I wrote must have had something to do with the subject of this thread as I am not one to go off topic...maybe I will explain it.... later...

Thanks for the original post of Robison's letter.

When I was first diagnosed I looked around for support. I came across Autism Speaks. I could not figure out what that organization's purpose was/is, other than it certainly had/has nothing that I found helpful to me.

Rather sad that the name "Autism Speaks" implies that it is the voice of those on the spectrum. It seems instead it is the voice of NT's for NT's.

Autism Speaks
Autistics Silenced

IN my opinion..if anyone silenced me..it would be my fault..and no one else's..as this is a free country..and we have a right to speak our opinions..

In public..that is all..

Autism Speaks does not even exist anywhere..but on this website for me...

At least...

No one rules my life but me....

We want to keep it that way, we don't want anyone taking our freedoms away

Well..that is an issue for politics and voting...

Not a charitable private organization..that has absolutely no control over that...

As long as the basic civil rights of United States citizens stays the same we are protected and will be protected...

It is not a rational fear to think that the relatively small organization of Autism Speaks could have any significant effect at all on this..in my opinion...

Illusory Fears are perhaps the worst enemy of any Autistic Person...

Illusory Fears in general are actually the worst enemy of any human animal..as these illusory fears are the source of most stress among modern human animals..

And yes..Stress definitely kills...

Any illusory fears generated..are actually dangerous in this total effect...

And this thread that provides unsubstantiated fears about a relatively small organization like Autism Speaks..

Overall..is not a very healthy thing for people who really take the unsubstantiated fears to heart..and really get scared over something..

That is simply an illusory fear..in my opinion...

But again..my experience and education in life is objectively vast..that's not an egotistical statement..it is just an analytical truth.....

I cannot expect anyone in particular to have my same insights..nor can i expect myself to have the same insights of others..whether they are what I understand as true or not..

As we all have unique visions of the Universe we live in...

Based on our experiences..inherent strengths and challenges....

IT IS WHAT IT IS....

This relates to what I said in my first post on this thread. It is about grading and sorting. The way that Autism Speaks is set up so that it sounds like they are speaking for all people on the spectrum, and it gives that idea to the public and creates many misconceptions, plus leaves helping of certain people out of their agenda.. Once it is set up that way and has gained a lot of stream and is rolling like a big locomotive, there is probably no way to stop it, and a couple of people on this thread have already made this point.

But one question I have is why higher functioning autistics would want to be included in this very broad category they are making? Also they expect unrealistic things from this organization. As far as this organization supporting so called torture (if it even is---yes, it sure sounds like it is but that is a loaded phrase)...I can see why someone would mention that, and think it is good that they did stick it in, but imo the way people responded deflected the participants on this thread from sorting things out.

Here is a key point: Sorting and grading, the way material is categorized is one of the most important things. When things get mixed up together in the wrong way it can become very confusing and prevent people from sorting things out. A clear mind has a place for everything yet does not try to include everything under one category. There is an arrea of the brain where new information is integrated. In what I wrote that (some?) people didn't understand I symbolized this integration as poetry. .It is where the inner heart that has a natural altruistic mitivation toward ones brother connects with the hand. This leads to conscious rather than mechanical action.

Of course a person would want to stop torture. There are all kinds of torture and suffering in this world, and a person who is sensitive naturally wants to try to stop it. Some people may have an interest (for whatever reason) to devote themselves to stopping one kind of torture and will devote themselves to that, and this makes good sense, but the ultimate sense is to amplify the altruistic motivation in oneself to such a degree that it spontaneously amplifies this motivation in others. In order to amplify this motivation it is necessary to understand in ones heart, in ones mind and in ones body that oneself is interconnected with ones brother. People do understand this intellectually but to feel it and deeply live it is something else.

Unfortunately talking about torture can actually deflect from doing anything about torture. This is an easily verified fact. But also talking about torture is surely an integral element in stopping torture. So there are two different ways to use speech, and in both of these ways emotional responses are invovled, but one way does not part the water so a person can go across to the other side.

If people do not understand what I am saying, I hope they will read it again and try to understand it..

I don't see one shred of evidence that Autism Speaks has my best interests at heart, or that they have any positive effect on my welfare

I agree with you..but the truth is they do not have to...

Their target audience is not you or anyone in this discussion...

More than anything..Ms. Wright's statement proves this..in my opinion...

And it is likely why John Elder Robison..said enough..my time here is wasted..per effect on this so called end of the spectrum..and what he can do in reality for IT..per his efforts to help make things better...

It is the kids that are truly suffering..not the one's that have some real opportunity in surviving through similar interdependent methods as most human social animals..where Autism Speaks true focus lies...

A mention of what IT is like to be on the so called higher functioning end of the spectrum on their website...pays an objective respect to this so called end of the spectrum...

But reasonably there is no way that the organization can effect the type of political change that would insure that people on this end of the spectrum find the educational, job..and acceptance support in general..from the rest of the general public..

It would be like a grain of sand..attempting to stop a tsunami.....

The only answer is to adapt the best we can friend..

That is reality the way I see it..

And so does John Elder Robison..and so does Temple Grandhin...we have something in common..over 5 decades of experience to come to this decision..as well as vast amounts of education...

From decades of this personal experience..and education... and careful analysis of this entire issue from bottom to top...

One comes to see the reality..the way reality is....at least for one.........

But as far as Ms. Wright's personal intentions..although it is only my intuition..I feel pretty sure that..

In a way..Ms. Wright may have been shooting everyone here..a bird..per her statement..actually on this site..places like ASAN..and other militant sites..that have tried to impede the progress of Autism Speaks..

As the change in the DSM5 to eliminate Asperger's syndrome..gives her a clear path to ignore the folks with Autism..per her true focus of attention on what she views for those who truly suffer on the spectrum..

And yeah..as a parent of a child who suffered and died from a co-morbid condition that is directly related to the reciprocal social communication difficulties of Autism..

I can see where she may be coming from...

It is an issue where those who are harmed the most in her eyes likely come first...

That is a common human social animal tendency..

Per the natural attribute of altruism....

And people that impede that...

Simply piss altruistic human beings off..

And when they do..whether it is financial..political..or physical power..

You do not want to be in their way...

When they do it...

Generally speaking..as the human social animal...

Can be a vicious social animal..when it comes to protecting others it is altruistically connected to....

She has that gleam in her eyes at times...

I know It..

As I have IT too...

It is the warrior gene..thingy...

It is deadly on the field of combat...

And a force not easily defeated..

in words..
2.

Autism Speaks does focus on severe autism in children, but I don't think that excuses their behavior. If anything, people with severe autism are even more vulnerable to the kind of stereotyping and fear/pity campaigns they use, and even more hurt by it than speaking adults. Seeing autism as a horror, as a hindrance to the family, as a burden--that's bad enough when you can speak up and say, "Hey, I'm not a burden. I deserve the same rights as anyone else." But if you're a child, if you can't speak, or if you've been so cowed by mistreatment that you don't know that speaking up for yourself is possible, you can't even do that much. Autism Speaks, by focusing on the most vulnerable autistics, is targeting the worst sort of hateful rhetoric at the people who are most hurt by it.

Talking about the reality of dealing with a severe disability is okay, just like it's okay for an Aspie to talk about how much it bugs them when they can't figure out what someone's feeling or how much it hurts to go into sensory overload. That's not what I have a problem with. It's that Autism Speaks assumes that the severe disability is self-evidently a horrible thing, blames the disability for the stigma and mistreatment that people with autism suffer, and makes that stigma even worse.

There's a difference between--
"Thirteen-year-old Joseph has severe autism, isn't potty-trained and can't talk, and his parents are really stressed. Isn't that horrible? We have to get rid of autism!"
and
"Thirteen-year-old Joseph has severe autism, and his parents will need some respite care and money for the adult diapers he wears. Also, since Joseph doesn't speak, we need to be sure he has a good speech therapist and some way of communicating."

Autism Speaks uses the first approach. And all the Josephs of the world are suffering for it.

Sorry Callista..when someone is truly suffering..there is no time for these social niceties..

The resources of government are more limited than ever..

And hard times require extreme actions to make things happen...

Ms. Wright simply understands that in the bigger world that is reality...

That is all..

And yeah..she makes an impact at the higher levels of government..

With this emotional method of getting folks attention...

It is absolutely what is required in politics..

It runs almost purely by emotions...

Facts are always secondary....

What she did is a mistake..to get any support from most anyone in this discussion...

But in the larger world it is extremely effective...

And in her view that is likely all that counts..

She's smart..street smart..

That is all..

In my opinion..life does not play by any one person's rules....

And obviously she knows that..
2.

And yes I was severely disabled...

A documented fact..

And yes it is the most horrible thing in the world....

Another documented fact...

By anyone who viewed the torture of my disability..by any objective or subjective analysis...

That was anywhere close to human...

It depends on whose shoes you walk in...

My friend...

And yeah my child was even more than disabled..

And the only thing he knew in his life was grimaces of the most unimaginable pain imaginable....

If that gives you a clue..

To what I am speaking of here..

And more fully

where my opinions come from..

again..my friend....