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theimperiousdork
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11 Aug 2010, 5:58 am

I still don't understand this. Someone explain this to me in a nutshell.

Et tu, Alex? Are you with us or against us?


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NobelCynic
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11 Aug 2010, 11:30 am

alex wrote:
Vector wrote:
Reaching out to Alex and John Elder Robison represents a huge change from where they used to be. It is a victory for our civil rights movement. The biggest organization that claims to speak for us is actually listening to us. A little. The awful woman whose lack of compassion for us let her go on camera and suggest that we might all be better off dead actually sat down with a smart guy who has autism and was confronted with our humanity.

This is how progress happens. Enjoy it.
agreed.

That's one way of looking at it; others have been suggested.

Johnrobison has explained his reasons for associating with Autism Speaks, Alex has not. This is rather disturbing.

I am willing to give Autism Speaks a chance and consider the possibility that they have heard the criticism against them and are trying to address our concerns. If Alex has reasons for holding that opinion, shouldn't he share them with the rest of the membership.


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11 Aug 2010, 11:48 am

NobelCynic wrote:
I am willing to give Autism Speaks a chance and consider the possibility that they have heard the criticism against them and are trying to address our concerns. If Alex has reasons for holding that opinion, shouldn't he share them with the rest of the membership.


Who is to say Alex must have any opinion at all?


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Vector
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11 Aug 2010, 11:53 am

Quote:
I am willing to give Autism Speaks a chance and consider the possibility that they have heard the criticism against them and are trying to address our concerns. If Alex has reasons for holding that opinion, shouldn't he share them with the rest of the membership.


I think he should. I hope he will. But I also hope that we will remember that, like most of us here, Alex has autism. Communicating about emotionally charged issues may be difficult for him, and I think we allow him some time and space. And maybe I'm being condescending in making the suggestion that Alex's failure to communicate more directly about this may be related to his autism-- that may not be the case at all. I don't know Alex, although I am grateful for his work.

But it an interesting problem for those of us who have ASD and recognize that we need the support of people like us: we have problems communicating. We have problems giving and noticing emotional cues. Those problems are different when we are dealing with each other rather than with NT people, but they don't go away.

So I feel okay about trying to make the point that we should not expect each other to always do a great job in communicating about things like our motives and our feelings. We tend to be worse at those things than most people are, just as we tend to be better at factual recall and attention to detail.


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11 Aug 2010, 2:03 pm

Vector wrote:
Quote:
I am willing to give Autism Speaks a chance and consider the possibility that they have heard the criticism against them and are trying to address our concerns. If Alex has reasons for holding that opinion, shouldn't he share them with the rest of the membership.


I think he should. I hope he will. But I also hope that we will remember that, like most of us here, Alex has autism. Communicating about emotionally charged issues may be difficult for him, and I think we allow him some time and space. And maybe I'm being condescending in making the suggestion that Alex's failure to communicate more directly about this may be related to his autism-- that may not be the case at all. I don't know Alex, although I am grateful for his work.

But it an interesting problem for those of us who have ASD and recognize that we need the support of people like us: we have problems communicating. We have problems giving and noticing emotional cues. Those problems are different when we are dealing with each other rather than with NT people, but they don't go away.

So I feel okay about trying to make the point that we should not expect each other to always do a great job in communicating about things like our motives and our feelings. We tend to be worse at those things than most people are, just as we tend to be better at factual recall and attention to detail.


Well said. I think the reason some of us are upset about this may be due to a breakdown in communication.

Personally, I don’t think dialoguing with Autism Speaks is a bad thing (at all) and I also don’t believe the average parent who becomes involved with Autism Speaks does so because they support eugenics. People on both sides of the fence want what’s best for people with ASD, although we may disagree strongly on what that means.

I’m a social worker who serves people with various forms of disability and, in looking at the civil rights struggles of other populations within the disability community, I think we are light years behind in some ways, partly because we bicker and fight so much amongst ourselves. So, although the idea of Alex accepting their money makes me nervous, I think it’s about time for dialogue.

To me, the most damaging thing Autism Speaks has done is trying to ‘advocate’ for the needs of people with ASD without involving autistic adults nearly enough in decisions they make that can have a tangible effect on our lives. It’s gotten to the point many of us are distrustful of anyone who tries to advocate for our interests without keeping us in the loop on what they are doing. Collectively, many of us tend to be pretty sensitive to that.

So, when Alex, who has been outspokenly critical of Autism Speaks in the past, suddenly and without any prior explanation, shifts his views and posts interviews that cast senior leadership of Autism Speaks in a favorable light, people are going to have a hard time understanding his intentions. When rumors about him receiving financial support from them start circulating before he tells us about it himself, that’s just going to make things worse.

This blog post on the Autism Speaks site makes his intentions sound great, though:

http://blog.autismspeaks.org/2010/07/27 ... m-talk-tv/

I agree with some folks that it would be helpful for Alex to make a more formal announcement to members of his own website, too, to provide some clearer and direct info about his intentions, but, in the meantime, maybe reading that blog post is the next best thing?

Something else that could help us view this new partnership in a better light is seeing interviews with self-advocates in the future. The back-to-back interviews with the Autism Speaks exec’s seemed to serve the purpose of educating us about them, much more than educating them about us. It makes sense this struck a chord, not simply because they are providing some underwriting support to the project, but because we already have a history of one-sided communications with this organization.

As I said, I think it’s a good thing (maybe even a brave thing) to start dialoguing with Autism Speaks, but it’s also important not to leave the rest of us out of that conversation and feeling in the dark.



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11 Aug 2010, 2:30 pm

I agree that Cubby and Alex should interview some self-advocates. They are also interviewing scientists who will talk about their ongoing research. Maybe we should have a sticky or even a forum where people could talk about their ideas for Autism Talk TV


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12 Aug 2010, 9:19 am

johnrobison wrote:
Maybe we should have a sticky or even a forum where people could talk about their ideas for Autism Talk TV

I would rather you had a sticky, as our inside man with Autism Speaks, so that members could ask questions about possible future projects, such as, is Autism Speaks considering supporting additional research of this:

http://www.bbc.co.uk/news/health-10929032


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15 Aug 2010, 2:54 am

It is not about what one parent said. Autism Speaks is not what the groups who try to slander them to get attention say. They are a non profit chartered to raise funds for scientific research.

While it is true they are only allowed to exist by the IRS, the second most evil group on Earth, who funds the first, Congress, I still blame the public for getting what they deserve.

Along this Axis of Evil, Congress, IRS, Autism Speaks, Alex, there is a zero point somewhere where where acts cease being evil, and start to counterbalance the Evil Overlords of Darkness.

I would place Alex and John Robison on the plus side.

It is point of view, and I remember the Dark Ages of long ago, up to 1974 autistics could be locked up for life without cause or trial. Compared, Autism Speaks is a shining beacon of hope. What existed in the last century, the Dark Ninties, was a call for medical supervised distruction through mass drugging for autistics, and reprocessing them to recover the metals.

Autism Speaks did consolidate the industry, and found the metal extraction part not profitable. Where drug companies would give large cash kickbacks to Professionals for pushing their pills, they wanted to control research, and refused to fund Autism Speaks, who asked too many questions.

Doing a Who's Who in Autism, which is what I see Alex doing, we know who the big players are. The Media does do some lightweight autism stories, but ignores what is going on because it is boring science, done by a bunch of eggheads who their audience would not relate to.

The other news source, all too common, comes from those who wish to stir up mobs to run the blood of grandmothers in the streets for walking for support of continued research, and Death Camps.

Some people can give blood thirsty mobs a bad name.

So along comes Alex, with camera, offering a no spin documentry style, who has a real interest in autism, and a social blindness that keeps him from seeing egghead do gooders as being strange, everyone is strange to an autistic. This applied Mind Blindness works, Alex is focused on the camera, the interview proceeds showing the real person and intent, just as they see themselves in the mirror.

They see themselves as being fairly portraied, Alex gets to interview some of the top people in a field of his interest, which is much better than most student films. I think we have been moving out of The Dark Ages of Autism, but looking back at these interviews in ten years might show just how dim witted humans are, all of us. So recording a point in time in a rapidly changing field is a worthy cause.

As for the call for the democratic social control of other people's obsessions, obsessions do not work like that. They do not even ask the permission of the obsessed.

It is a gift from the gods, who are easily offended, and often bored,

That John Robison is on the inside, it is about time. Humans can have, wealth, education, power, but they all still have to turn to a mechanic to make things run. Mechanics are born, rare, and needed.

Mechanics are not like humans, even the best trained only replaces parts in hope the problem will go away, an expensive method. Mechanics have the gift of spotting the one thing that is not working out of hundreds, that causes all to fail. Be it a motorcycle, a top of the line car, an aircraft, or a major non profit, they all have the same problem, designed and maintained by humans who lack a view of the whole in function.

When they try to explain what is, they say things like my corporation is going clunk wirr, clunk wirr, but only when I try to speed up and change lanes. They are not good at troubleshooting, or even using english and thought at the same time. The world needs mechanics.

I have been following the Max Planck Institute Neanderthal Genome study. They have proven that about a fifth of Earth is a Neanderthal breed. Other Science has not caught up, to them all humans are identical. Neanderthal is only one mix, there could be more than twenty, there are no humans. What is normal for one sub species is alien to another.

In another decade we will have a very different view of the mental landscape. While everything up to now has beeen based on different from the norm, we now know norm does not exist. The modified Jungian personality profile sorter may just be measuring sub species traits.

All historic periods are misguided and delusional, it does correct, but only to a new era. For now, Autism Speaks is funding the research that show the interface of genetics and brain function, for the wrong reasons and in total blindness. That is always the case, but we do keep the good stuff.

Like Max Planck, they are doing the work I want done, and I do not have to pay for it. No one else even comes close to the broad studies they fund. I will support curing autism, I do not think it possible, but it does bring in the money to continue much more important research.

History shows that all progress was caused by misguided people doing the wrong things for the wrong reasons, and accidently coming up with good stuff. It helps if they are well funded.

Babbage's Differential Engine never got finished, but as a side issue, it advanced Metalurgy and Machine Tools, which made the industrial revolution possible.



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15 Aug 2010, 4:07 pm

Marc Sirkin with Autism Speaks posted this about Autism Talk TV on his organization's blog, discussing how the relationship came about and how supporting the project fits into some of Autism Speaks' larger goals. For what it is worth, the comments from Jessica he mentions towards the end were mine. I really would have liked him to have used more of what I'd said than that little snippet, but, oh well!


Autism Talk TV and Autism Speaks

August 13, 2010 Autism Speaks
This is a guest post by Marc Sirkin, Autism Speaks Chief Community Officer. Marc manages Autism Speaks social media, marketing, websites and online fundraising.

Since joining Autism Speaks it’s been one of my missions to start to bring the community together through the use of social media. We’ve invested in our Facebook and Twitter presence, our Ning community, our e-mail newsletters and two rapidly expanding and successful blogs – one for Autism Speaks and one for Walk Now for Autism Speaks. I am seeing some terrific conversations developing and platforms that enable the community to come together in a global conversation about autism.

At Autism Speaks, a big piece of our mission is to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. Through social media, I am hoping to help move this along. You can read our entire mission here: http://www.autismspeaks.org/mission.php

A few months ago, John Robison and I started talking about how we can continue to drive a dialogue and to bring the different and disparate pieces of the autism community together. Right before the IMFAR conference, John called me to tell me about a young man named Alex Plank, who is the founder of Wrongplanet.net. John had spent some time with him and thought that Alex, despite his public criticisms of Autism Speaks, would be a terrific person to involve in this ever expanding conversation. After attending the GRASP benefit event and meeting Alex, I invited him and John to a meeting to discuss some ideas on how we might work together. I eventually spent an entire day with Alex, hashing through a bunch of very cool, social media ideas, including one terrific nugget that has now become “Autism Talk TV.”

The idea is simple really, Alex was already producing a show that would feature a variety of perspectives from the autism community and we wanted to help. Not only did we want to give Alex a chance at creating a successful web show, we thought he was terrific on camera and with a promotional boost, more people might enjoy tuning into his show. Alex’s lively and engaging style as a host felt right to us and we committed to doing some test shows and to act as a show sponsor to help promote the show. As a sponsor, we have no creative or content control; we do not drive Alex’s content agenda, but will provide assistance where we can for access to guests and additional information as well as show promotion where we can.

Our expectations are simple: we hope Alex will produce great content in an enjoyable, web-based format and that he will build “Autism Talk TV” into a widely viewed, successful venture. At Autism Speaks, we continue to invest in the entire community and to continue to “listen” and engage the community from all corners. It is my hope that this show will drive forward the conversation and help the entire autism community come just a little closer to each other.

I think it’s already working… on our blog, Jessica wrote “Although it may be surprising to see WP partnering with Autism Speaks, if it’s for a project that’s creating greater understanding about ASD, it’s a good thing,” and Dadvocate wrote “I’m honestly delighted that Alex Plank’s WP is partnering with AS.” I know some may find this partnership confusing or concerning and I’d ask you to allow us to explore this new partnership and see how far we can take it together. Stay tuned for more Autism Talk TV!



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16 Aug 2010, 3:13 am

Vector wrote:
There are many awful things about Autism Speaks:

1) It focuses on curing autism rather than helping people with autism
2) It popularizes the belief that people with autism are incapable of emotions
3) It has often been hostile to people on the spectrum who are able to advocate for ourselves
4) It has failed to include people with autism on its boards or in its activities.

Reaching out to Alex and John Elder Robison represents a huge change from where they used to be. It is a victory for our civil rights movement. The biggest organization that claims to speak for us is actually listening to us. A little. The awful woman whose lack of compassion for us let her go on camera and suggest that we might all be better off dead actually sat down with a smart guy who has autism and was confronted with our humanity.

This is how progress happens. Enjoy it.


Here's to hoping this is what's actually happening.



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16 Aug 2010, 5:29 am

Marc Sirkin wrote:
Right before the IMFAR conference, John called me to tell me about a young man named Alex Plank, who is the founder of Wrongplanet.net. ...
"Autism Speaks Chief Community Officer" being surprised to find that WP exists - but eager to absorb it into Autism Speaks.

http://www.autismspeaksorg/mission.php indeed makes their aims clear. Not a word about support for autistics - just pure cure of "this urgent global health crisis".


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Asp-Z
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16 Aug 2010, 5:33 am

Hey, here's something. Now that Autism Speaks help fund Alex's stupid videos, couldn't they claim to be supporting the autistic community, because of WP? A scary thought.



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16 Aug 2010, 8:00 am

As of now, I don't think Alex has released any statement to all members of WP. Still, I think this question deserves an answer:

Is Mr. Plank with us or against us?

This community needs your response, Alex. I don't want to be left with questions unanswered, and so are the rest of us.


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leejosepho
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16 Aug 2010, 8:10 am

Quote:
Autism Talk TV and Autism Speaks

August 13, 2010 Autism Speaks
This is a guest post by Marc Sirkin, Autism Speaks Chief Community Officer. Marc manages Autism Speaks social media, marketing, websites and online fundraising.

Since joining Autism Speaks it’s been one of my missions to start to bring the community together through the use of social media ...

At Autism Speaks, a big piece of our mission is to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis ...

A few months ago, John Robison ... called me to tell me about a young man named Alex Plank, who is the founder of Wrongplanet.net ... a terrific person to involve in this ever expanding conversation.

Alex was already producing a show ... and we committed to doing some test shows and to act as a show sponsor to help promote the show. As a sponsor, we have no creative or content control; we do not drive Alex’s content agenda, but will provide assistance where we can for access to guests and additional information as well as show promotion where we can.

... It is my hope that this show will drive forward the conversation [as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis] and help the entire autism community come just a little closer to each other.

I think it’s already working… on our blog, Jessica wrote “Although it may be surprising to see WP partnering with Autism Speaks, if it’s for a project that’s creating greater understanding about ASD, it’s a good thing,” and Dadvocate wrote “I’m honestly delighted that Alex Plank’s WP is partnering with AS.” I know some may find this partnership confusing or concerning and I’d ask you to allow us to explore this new partnership and see how far we can take it together. Stay tuned for more Autism Talk TV!


Ah, now that concerns *me*. I staunchly defend Alex' right and freedom to do anything he wishes, but somebody needs to clarify this statement before the entire world:

"Alex Plank’s WP is partnering with [Autism Speaks]."

No, not even close!


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leejosepho
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16 Aug 2010, 8:18 am

Asp-Z wrote:
Hey, here's something. Now that Autism Speaks help fund Alex's ... videos, couldn't they claim to be supporting the autistic community, because of WP? A scary thought.


Whatever their claim might be, it does seem we now have a bit of sewage seeping into the soup ...


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blueroses
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16 Aug 2010, 8:45 am

leejosepho wrote:
Quote:
Autism Talk TV and Autism Speaks

August 13, 2010 Autism Speaks
This is a guest post by Marc Sirkin, Autism Speaks Chief Community Officer. Marc manages Autism Speaks social media, marketing, websites and online fundraising.

Since joining Autism Speaks it’s been one of my missions to start to bring the community together through the use of social media ...

At Autism Speaks, a big piece of our mission is to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis ...

A few months ago, John Robison ... called me to tell me about a young man named Alex Plank, who is the founder of Wrongplanet.net ... a terrific person to involve in this ever expanding conversation.

Alex was already producing a show ... and we committed to doing some test shows and to act as a show sponsor to help promote the show. As a sponsor, we have no creative or content control; we do not drive Alex’s content agenda, but will provide assistance where we can for access to guests and additional information as well as show promotion where we can.

... It is my hope that this show will drive forward the conversation [as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis] and help the entire autism community come just a little closer to each other.

I think it’s already working… on our blog, Jessica wrote “Although it may be surprising to see WP partnering with Autism Speaks, if it’s for a project that’s creating greater understanding about ASD, it’s a good thing,” and Dadvocate wrote “I’m honestly delighted that Alex Plank’s WP is partnering with AS.” I know some may find this partnership confusing or concerning and I’d ask you to allow us to explore this new partnership and see how far we can take it together. Stay tuned for more Autism Talk TV!


Ah, now that concerns *me*. I staunchly defend Alex' right and freedom to do anything he wishes, but somebody needs to clarify this statement before the entire world:

"Alex Plank’s WP is partnering with [Autism Speaks]."

No, not even close!



Hi leejosepho,

That was an excerpt from a comment left by someone who had read Alex's blog post on the Autism Speaks website. It was not an official statement from Autism Speaks' staff or anything like that.

I am cut-and-pasting the individual's comment in its entirety below because every time I try to post a comment with a URL, I'm getting an error message. But, there is a link to the page in a post of mine on page 4 of this thread, if you prefer to visit the actual page instead.

July 28, 2010 at 9:45 am | #7 Reply | Quote I’m honestly delighted that Alex Plank’s WP is partnering with AS. It’s about time that both parties sat down to hash things out. I am hopeful this initiative will enlighten others in the ND movement (Are you listening Ari? Really listening?). AS is not the great Satan that they have excoriated these many years. There is tremendous agreement in the autism community, especially on adult and civil rights issues. Peter Bell, Autism Votes, and AFAA are leading the charge on these important fronts and can use all the support they can get. The ND community would do themselves a service by getting on board.

I am hopeful that Alex will also see fit to “clean up” some of the more inflammatory posts on his site to reflect this partnership with AS and demonstrate his apparently new found sensitivity to those on the spectrum who are unable to function at his level and those who strive and hope for a cure for this often (but not always) calamitous and high risk disorder.