"I resign my roles at Autism Speaks" John Robison

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Actually, Schizoid, I don't mind having autism, and I bet there are some people who DO like it. Just because you don't, doesn't mean you can assume that everyone doesn't. There are certainly joys in it--the sensitivity to small details, the love of a special interest, or the pleasure of just the right stim. For some people, those joys may very well mean that they like being autistic--even if they do not have any special skills at all. And anyone, even someone with a severe and even painful disability, can be of the opinion that they would rather be themselves than someone else, even if that sometimes involves unpleasant experiences.

But even if you hate having autism, Autism Speaks still doesn't help you. They don't help real, living people with autism much at all. Very little is spent on community services. Most of the research is aimed at finding a prenatal test, and unless you're a fetus, that won't affect you at all. And even if you absolutely positively hate having autism, that still doesn't mean you need to agree with "awareness" campaigns that paint you as an empty shell, a burden on your family and community, a disease, or a frightening threat. Say that you believe autism is a horrible thing to happen to anybody, and that you would risk anything, even your very identity, to be rid of it. Even then, with that extremely negative viewpoint of autism, you can still argue that you deserve acceptance, equality, understanding, and assistance. But Autism Speaks doesn't support that. They just use fear-and-pity rhetoric to make it even worse for autistic people, whether they like being autistic or not.

Our major beef with Autism speaks has very little to do with "I love having autism; how dare they say it's anything less than perfect." It's a good deal more of, "Stop treating us like a frightening, tragic crisis. We're people, not problems." Don't believe me? Try inserting "HIV-positive" or "elderly" into some of those ads. Being old or managing HIV are both things that cost money and can create problems for people, but if they used the same fear-and-pity rhetoric against your grandma or the HIV+ guy down the street, people would be up in arms about it!

People having pride instead of shame for who they are does not cause division.

As far as curing autism, we don't know if "getting rid of the bad symptoms will not equate to also losing the benefits."

I saw something earlier - a statement in which someone pointed out that a major trope in some kinds of horror is having one's mind replaced with something that isn't you - this was to point out how that person feels about a cure.

Also, I can't add much to what Callista wrote, but I also do not mind having autism. I don't [i]hate[i] having autism. What I hate is dealing with a lack of accommodation and world largely set up to accommodate people with different cognitive abilities than I have. Claiming that no one likes having autism is a no true Scotsman fallacy. You just can't speak for other people that way and expected to be heralded as a bringer of great truth.

Also, this:

Eleventy million karma points to John!

Alex, I hope you follow his example. If he can't make any changes to the views of Autism Speaks whilst being in a top level management position there, your involvement with them and your Autism Talk videos certainly won't. They've just been using John as a token all along. Don't be their new one.

NO I DONT SUPPORT TORCHER.

its the fault of autism speaks that they spend to much money for finding a cure and not enough to find special homes to help these kids who fall through the cracks.and to find more better humane treatments for highly distured children with developmental disabilities.

the ASAN also fails to advocate for what i just said AS should be working on.instead of ASAN putting so much emphysis on getting more accetence in society for the highest functioning.

its sad and its sick what the JRC does but as a person was in the mass dept of social services institutions as kid.the alternatives to the JRC are worse.

some hospitals strap kids to a bed for in humane periods of time while they sit in there piss and s**t

Lack of support for TORTURE does not equal being against it. That video made me f*****g sick. Imagining that being my child literally made me lose it.

Anything other than pure disgust for the people involved in the actions seen in that video I cannot tolerate.

I want to know one thing, one factual thing:

Is Autism Speaks still involved with the JRC? If not, when did their involvement cease to exist?

i dont know if autism speaks supports torcher or the JRC i wouldnt put it passed them.

shock therepy discusts me too.but the reallity is that the mentaly ill and mentaly disabled are so neglected by our society.that there is nowhere but the JRC and institutions like that to put them.

I do not mind being autistic. I mind that it is difficult, if not impossible,for many of us to achieve and contribute to the extent that we would like to and are capable of because of the truly horrendous restriction on us and prejudice against us. I grew up in a family that I can only call evil.I have never been like my family members. I used to believe that I had, by myself, chosen to be "above"their sadistic behavior. I now realize that I did not participate in their cruelty [ was even opposed to it, which caused me to pay a huge price as the family traitor] because, THANKFULLY, I am not wired to follow the group. I am not wired to crave power. Nor am I wired to look at people as "less than" because of appearance, socio-economic status,etc.

I now know it was because I am inherrantly wired in such a way that I could never rationalize such monstrous behavior. Because I am autistic. Since as long as I remember, other than planning that I was going to treat my children totally differently, has been to relieve suffering in others. I would not be this way if I had been NT like the rest of my family.

Okay. You also said that no one likes autism just like no one likes cancer. Well, I am obviously no one then. I am a PROUD autistic [constamtly fighting against feelings of autistic supremacy] who is fighting cancer. I HATE cancer. PLEASE never compare the 2. Because of being autistic, I believe I have helped many people. Cancer is my enemy that has negatively affected my life and my ability to help others. It does not give me a renewed appreciation of life, I already appreciated it, thank you very much.

Perhaps if you would take the time to appreciate life, you would not make such absurd comparisons.

+1

Well, that's good to know.
In a previous post, though, you kind of did support torture and make excuses for it: it's better than the altenatives, it's the only way to help these cases, etc.

So I'm glad to read that you don't mean to support it, but wonder why you did give the JRC some support.


They gave space to the JRC as recommended resource in their run in DC earlier this year. That's not just not supporting the right thing but actively supporting the wrong things.
They spend most of their money on their own salaries and lavish fundraising events.


I don't think that's an accurate portrayal of ASAN, but it's also sort of a non-point in a discussion of Autism Speaks.
What does the one have to do with the other? There is no binary choice here. There is no equation in which support for one = rejection of the other or vice versa.

We can denounce Autism Speaks for the hate, fear and hopelessness they promote while also encouraging ASAN to pursue a broader agenda (or perhaps learning more about what they really do advocate). But it really isn't some binary choice here. If you don't like ASAN for some reason, you do have other options than to embrace the hateful Autism Speaks. There are many other organizations such as the Autism Society with a broad variety of programs that may be helpful. It saddens me that Autism Speaks is taking money that might otherwise have been donated to one of those organizations.



I believe that some of the victims of the JRC have voided their bowels while being restrained so that pain could be delivered through electricity in multi hour "procedures." They also spend almost all their time in solitary confinement. Every good thing is denied them, with the rationale that they will then be motivated to earn them through compliant behavior. Every imaginable way to make them feel pain is used against them: chemicals, temperature, restraint, physical assault, electric shock, verbal abuse--all these "aversives" are designed to cause the maximum imaginable sensory distress, the better to encourage compliant behavior. The genius behind these approaches to behavior control has repeatedly taken these techniques up to and beyond the point of killing the victim his institutions claimed to be treating.

I don't know how many people were killed in the Massachusetts institutions you remember, but I don't really think they can have been worse than this.

But again, it's not as if the existence of things that are worse somehow makes this OK. You could always point to the killing fields of Cambodia, or the industrial death camps of Europe as examples of something worse--but those atrocities don't make these atrocities better or tolerable.

I hope we can all agree that the JRC should be shut down and not replaced with something worse, but rather something better. I hope we can all agree that Autism-focused organizations and charities should be primarily geared toward improving the quality of life of autistic people and their families. And I hope we can all agree with the basic principle of ASAN that autistic people should be represented in every governmental and non-governmental organization that makes plans for them or speaks for them, embodied in the slogan "Nothing about us without us."

I hope that we can avoid dividing our community into high functioning and low functioning camps and using the needs of one group to silence the other. We are stronger together than we are apart. We can all benefit from one another's strengths and help one another's weaknesses and NTs who are interested in helping will do better working with us than alone.

At least, that's how it seems to me.

okay, yesterday when I posted my feelings on the Judge Rottenberg Torture Center, I was in the midst of melting down. Seeing what was being done to that child triggered all the emotions I feel when my son has, as he calls them, "the burns" [caused by a pre-birth stroke that damaged BOTH sides of his thalamus] and I was so incredulous that anyone would deliberately cause a child to endure that.

I imagine it does make the child more docile. It was a docile little boy , my youngest son, LJ, who, every day, many times a day, would say "Mommy, i know you love me, so please help me die". A little boy, who, before something [they assume puberty] triggered the "burns" was at 11 years old a whiz at calculus and trigonometry who now has difficulty with simple addition and subtraction. A little hyper-happy boy with ADHD
who no longer speaks fast because he needs time now to find and process every single word that he wants to say, and at least half of his sentences never are completed because he usually forgets what he was talking about.

One thing my son remembers is how incredibly intelligent he used to be. Despite bring differrent, many of his classmates respected him because he was so intelligent and could explain things to them in a way the teacher couldn't. He was proud of that and it helped him with his self-esteem.

i certainly hope that the monsters who run the torture chamber do not try to claim that they are not causing brain damage, because they are.

My son gave me permission to share this [ I told him about the video, but convinced him not to view it] and he said that he is willing to share his own experience if it will help to stop this torture.

Doesn't Alex still get funding from Autism Speaks? I thought Alex became a supporter of Autism Speaks.

I think Alex, pretty much at the same times as Robison, became somewhat involved with Autism Speaks to get funding for Autism TV, and, I assume, like Robison, was hoping he could affect positive changes in Autism Speaks.

In case you did not notice, it was Alex who posted the thread, and he has also been more active on WP lately than he has been since I joined as a member.

I noticed he posted this, just thought it was odd given he seemed like a support of Autism Speaks.

The worst damage can be done by people who started out with good intentions. They were lost or whatever. Something life altering happens a revelation or in this case having and autistic grandchild. They now have cause that that they peruse with missionary zeal. Anybody that disagrees with them are deniers. That word is meant to evoke and compare to whomever disagrees them to holocaust deniers. Anybody that disagrees with them are enablers of death destruction whatever. You see the mentality in the campaign literature that caused the resignation. NOW, NOW, NOW , NOW no time to think, no time for disagreeing. DO IT NOW!! !! !! !! !. And we are the ones who are ridged and think only in black and white terms?

This particular phenomenon is rampant in the baby boom generation, my generation. They wanted to change the world, they protested, they took drugs to pursue alternative lifestyles. It did not happen. They folded like a cheap suit after Kent State and sold their soul to the corporations they used to protest. The money came in, families were started, but their was still this hole, inside their was still this guilt for selling out. When a cause comes around especially when it involves children who reminds them of their former innocent selves they are all in. That is why this seemingly contradictory approach of idealistic do goodism and fear works so well for this organization. They are preaching to their peers.

Because I am an aspie and I thought and think differently for my whole life I have unintentionally been a thorn in their side , I shocked them, I puzzled them they just could not begin to understand where I was coming from. The sadistic bullying was right in front of me and in a way easier to deal with then the idealistic do gooders who have smothered me with "love" and tried to correct me for what they truly believed was my own good.

Hi Alex: I do not know anything about Autism Speaks, but read the material given here and went to the links. It seems to me that there is this problem of sorting and grading, which is the same problem I have have been trying in my various writings on WP to address. When I first came here I did not realize such a problem even existed as I did not understand how large in variance were the gradations of autism and was just thinking about autism from my own perspective and the perspective of people pretty much like myself in functional abilities and communication and socialization skills I met at various activities for aspies I attended in my city. I never watched any online videos and knew next to nothing about other kinds of autism.. After I was on WP for a few months I gradually became more and more aware of the variance and (with great difficulty) was eventually able to begin to see there is a big problem with sorting and grading, meaning, because of certain similarities, placing greatly differing kinds of people on a very large spectrum under one very broad general category. There could be some benefits to approaching from this angle, but I think there are probably many more detriments. This is why I started the thread about playing the autism card. Some .people assumed I was saying that people should not apply for benefits because they are autistic, but this is not what I meant. What I was and am more talking about is having an irrational emotional attachment to whoever one thinks/feels one is, and it was and is my intent to look at how this works, how the brain sorts out data and categorizes oneself and fits oneself into various kinds of frameworks..

Many people get emotionally aroused by this or that pretty easily, and this includes me, though I am pretty old now and have worked though a lot of it. What I have recently read here about the approach of Autism Speaks and also some of the responses on this thread easily demonstrate this kind of emotional response, and it all relates back to the subject of sorting and grading and who and what one thinks and feels oneself to be, and also to how this kind of thinking connects with and/or separates oneself from this or that group of people. That he resigned from this organization does make sense, but some of the messages on this thread do not make that much sense to me. Though it is understandable that people could feel the way they do, the part I am having difficulty in processing is the implied belief that having an emotional reaction will help to sort things out. I see it in the same category as the one sided and obviously slanted approach of Autism Speaks.


Re the responses on this blog, I would like to comment further when I have time, as some of it is quite interesting. No, I do not think autistic people should be given electric shock treatments, and I would encourage people to try to stop that. However what some people do not seem to understand is that unfathomable cruelty and insensitivity to the suffering of human beings and other sentient creatures is a universal problem in that it is a facet of ignorant human behavior, and in order to do the most possible to change this it is necessary to not just work to make changes in the external world, but to also work to change ones own consciousness, ones own way of processing data. This is what I would encourage people here to focus on. Just changing these cruel practices, though beneficial, is not enough in that it is too slow. We do see society changing gradually over the centuries, and it is very wonderful and was all accomplished by individual effort applied in individual circumstances, but I suggest there needs to be some kind of study of and enquiry into how to consciously accelerate this process by changing our own way of thinking..

Last edited by littlebee on 17 Nov 2013, 1:35 am, edited 1 time in total.

i have never made any donations to JRC,A.S,ASAN i am mostly distrusting of political organizations.