"I resign my roles at Autism Speaks" John Robison
John Robison wrote the following on his blog (original link: http://jerobison.blogspot.com/2013/11/i ... peaks.html ) Thoughts?
I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches. It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way.
Many autistic people are aware of this dichotomy. Some of us feel “totally disabled” and others feel “totally gifted.” Most of us – I’d venture to say – feel both ways, at different times, depending on what we’re doing at that particular moment.
Consequently, I support the idea of changing society to make it more accommodating for people who are different. I also support the idea of developing therapies, treatments, and tools to relieve suffering and disability from both autism and the conditions that accompany it for some people.
If I act a bit different because I’m autistic, I think it’s my right to do so without being mocked, bullied, or discriminated against. At the same time I realize people are people, and if I act like a jerk, I will be treated as one. I understand I have a responsibility to learn how to behave in ways others will find acceptable or even appealing.
If I can’t do something, and I want to be able to do it, I feel it’s my right to ask for help. At the same time, I recognize that society must be there with the tools to fulfill its part of the bargain.
Not everyone wants help with disability and suffering, and I support their right to exist and be accepted just as they are.
The point here is that there are many ways autistic people can choose to live their (our) lives and all are valid and deserving of respect. Some people want a little help, while others face major challenges. They (and their families) feel great anger and frustration over society’s weak response to their cries for help. As a progressive society I argue that it is our duty to develop ways to meet the very diverse range of needs our community has.
Mrs. Wright’s op-ed articulates a view of the “autism situation” that is very different from my own. She says things I would never say to people with autism and cannot in good conscience stand by. Given her role as leader of the organization, I am afraid it is my signal to exit the Autism Speaks stage.
I share with you the following letter, just delivered to Liz Feld, president of Autism Speaks.
For the past four years I have worked very hard to defend Autism Speak after a series of public relations missteps; beginning with the I Am Autism video. The most recent “Autism Speaks Point of View” http://www.autismspeaks.org/news/news-i ... all-action shows me that my words and efforts have had no real impact on the beliefs of the actual leadership of the organization.
I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.
We do have problems, and we need help. Some of us need counseling or training, while others have significant medical challenges. We also need acceptance, and support. There is a great diversity in our community, which means we have a very broad range of needs. Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful. We have delivered very little value to autistic people, for the many millions raised.
I stayed on board because I felt the fundraising power of Autism Speaks could be directed toward research and services that would be truly beneficial to people living with autism today. I felt the occasional public relations gaffe was tolerable if we began delivering therapies that would really help our community. I expressed my views to that effect in public, at science reviews, and to Autism Speaks staff.
One of the things I’ve said all along is that I believe change is best accomplished from inside, through reasoned discussion. Recent public statements from Autism Speaks have shown that my ideas have not taken hold among top leaders, despite my best efforts.
This latest op-ed piece is simply not defensible for someone who feels as I do, and I cannot continue to stand up for the public actions of an organization that makes the same mistakes over and over again by failing to connect to the community it purports to represent.
Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.
The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community. Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions. The priority cannot be autism parents, or autism grandparents. It’s got to be actual people with autism.
No one says the Cancer Society does not speak for them. No one describes the Cystic Fibrosis Foundation as an evil organization. All that and more is said of Autism Speaks every day. I’ve tried to be a voice of moderation but it hasn’t worked. Too many of the views expressed by the organization are not my own; indeed I hold very different points of view.
Autism Speaks still has a base of support among families of young children, but it has very little support from parents of older kids, or autistic adults. And the fact is, that is the majority of the autistic population. I’ve made that point in the past; apparently to no avail. I’ve suggested things the organization could do to garner support from those groups, but those suggestions have been ignored.
Consequently, I have decided to resign from the Science and Treatment Boards, which are my only formal connections to Autism Speaks. I’m sorry to take this step but I feel I’m left with no choice.
Autism Speaks has a lot of potential with its media presence, public name recognition, celebrity connections and fundraising power. It could do a lot of good, if directed differently. I hope that happens one day.
If you want to talk about making meaningful changes within the organization, giving people with autism a substantial voice in your governance, and shifting your focus to one that would truly deliver on the promise of the funds raised, I would be open to the discussion. Until then, it’s time for me to bow out.
Best wishes
John Elder Robison
November 13, 2013
_________________
I'm Alex Plank, the founder of Wrong Planet. Follow me (Alex Plank) on Blue Sky: https://bsky.app/profile/alexplank.bsky.social
Last edited by alex on 13 Nov 2013, 11:57 pm, edited 2 times in total.
I saw a link to this on another thread here, and I read the blog post.
It's unfortunate that he wasn't able to positively influence the organization in the way he intended, and he's probably doing the right thing by leaving, but at the same time I can't help but think that this might be a valuable lesson for all of us in that he made the effort even though it turned out to be ultimately futile.
I can't help but wonder if he'd had more support internally, i.e., more ASD folks on the inside with him, if he might have been more effective.
Given the massive amount of funding and media attention this organization receives, it seems like a powerful tool for us, if we could only harness its size and visibility for ourselves, a point he makes well in his blog post.
Maybe it's time for a campaign to get a bunch of prominent autistic folks to pettition to be put into positions of influence within it, so that they would not be alone and might actually have a chance to use this behemoth's resources to do some good for autists for a change.
Just a thought.
I don't know about the UK, but here in the States that's being explored. It's been studied that autistics, at all levels of functioning, are more docile and compliant for a few weeks after receiving the new "more humane" ECT treatments (by "more humane," they mean that they at least have the decency to anesthetize you before they fry your brain).
Yeah-- I'll bet if someone did that to me, I'd be docile and compliant too. Just to keep them from doing it again.
_________________
"Alas, our dried voices when we whisper together are quiet and meaningless, as wind in dry grass, or rats' feet over broken glass in our dry cellar." --TS Eliot, "The Hollow Men"
So much for any hope I might have had.
Back to the plan to drop out of society and disappear.
I reiterate-- When did the astute Jews start leaving Germany?? And when did they start leaving Europe??
This is not a rhetorical question. I'm seriously trying to decide whether I need to start talking to my husband about becoming expatriates, before Mister Edison and I are running for our lives.
_________________
"Alas, our dried voices when we whisper together are quiet and meaningless, as wind in dry grass, or rats' feet over broken glass in our dry cellar." --TS Eliot, "The Hollow Men"
Last edited by BuyerBeware on 14 Nov 2013, 8:14 am, edited 1 time in total.
Back to the plan to drop out of society and disappear.
I reiterate-- When did the astute Jews start leaving Germany?? And when did they start leaving Europe??
I think this might possibly be a slight overreaction.
Perhaps this is rather the beginning of the end for autism speaks and the "scare the cash out of them" approach to raising funds for an organization primarily dedicated to supporting the lavish lifestyle of its officers and fundraisers.
One thing that makes me particularly happy about the way JER did this is that his sincerity is so obvious and thinking so clear, I can use him and his argument to make my point with almost no effort! That is, I can with confidence share his thoughts with anyone who supports autism speaks and then continue the discussion.
I seem to remember John having some sort of device put on his head that did something to his brain...enough that his hand twitched. Afterwards he was saying he could "connect" with people and could better feel empathy. Is this what you guys are referring to with shock therapy?
I think where Autism Speaks fails is in representing all autistics as if we are all the "severe case". I can see why parents of children with severe autism want a cure. When my daughter was 2 and had not said one word, did not acknowledge my existance, did not show any emotion, and would smack her head against the ground I wanted a cure too. Luckily through therapy, and only one hellacious year later, she now speaks in sentences, she greets me when I come home, she accepts, shows, and wants affection; she looks at my face and she rarely smacks her head on things. She is still very much autistic, but she is on her way to no longer appearing so.
I personally feel that awareness needs to be done in a "boots on the ground" manner. If you are functional enough, speak to people about your autism story; hell, make it a special interest so that talking about in detail is easy. Most NT that do not have an autistic family member will never come to this site and may only vaguely know of autism. Teach them!
Lastly, I feel if we want a group to represent us properly than we need to form a group that is made up of our people-people that live autistic and can better represent what autism is. Given the proper advice and funding I would love to form a better Autism advocacy group.
I agree that Autism Speaks no longer has our voice in their ears, if they ever did, so John I applaud you for what you did.
I seem to remember John having some sort of device put on his head that did something to his brain...enough that his hand twitched. Afterwards he was saying he could "connect" with people and could better feel empathy. Is this what you guys are referring to with shock therapy?
I think where Autism Speaks fails is in representing all autistics as if we are all the "severe case". I can see why parents of children with severe autism want a cure. When my daughter was 2 and had not said one word, did not acknowledge my existance, did not show any emotion, and would smack her head against the ground I wanted a cure too. Luckily through therapy, and only one hellacious year later, she now speaks in sentences, she greets me when I come home, she accepts, shows, and wants affection; she looks at my face and she rarely smacks her head on things. She is still very much autistic, but she is on her way to no longer appearing so.
I personally feel that awareness needs to be done in a "boots on the ground" manner. If you are functional enough, speak to people about your autism story; hell, make it a special interest so that talking about in detail is easy. Most NT that do not have an autistic family member will never come to this site and may only vaguely know of autism. Teach them!
Lastly, I feel if we want a group to represent us properly than we need to form a group that is made up of our people-people that live autistic and can better represent what autism is. Given the proper advice and funding I would love to form a better Autism advocacy group.
I agree that Autism Speaks no longer has our voice in their ears, if they ever did, so John I applaud you for what you did.
As long as Autism Speaks sees us as damaged sub-humans, they will continue to damage us and diminish our worth.
Autism Speaks does not speak for me.
_________________
No, that was an experiment in electromagnetic therapy.
When they talk about electroshock therapy, they're talking about the horror-scene stuff from One Flew Over The Cuckoo's Nest, with literally the only difference being that they now put the "patient" to sleep first instead of strapping them down and allowing them to experience excruciating pain before being knocked unconscious.
I think I'll pass.
_________________
"Alas, our dried voices when we whisper together are quiet and meaningless, as wind in dry grass, or rats' feet over broken glass in our dry cellar." --TS Eliot, "The Hollow Men"
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