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Autism TV and Autism Speaks

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NobelCynic
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16 Aug 2010, 9:00 am

blueroses wrote:
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.

The part I bolded could be what is troubling some of us. I know this is not an official of Autism Speaks but it would still be reassuring to have a statement from Alex that that is not going to happen.


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16 Aug 2010, 9:03 am

blueroses wrote:
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.


Hi, and I thank you for posting that:

Quote:
July 28, 2010 at 9:45 am | #7 Reply |

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.


Whoever wrote that *really* needs to be straightened out about certain things, but that other stuff spoken by Marc Sirkin, Autism Speaks Chief Community Officer, is the clear evidence suggesting Alex is now being used by Autism Speaks in order to help promote its misleading and detrimental "urgent global health crisis" agenda.

I would be shocked to ever find out he sold out knowingly, but let us all hope he does not now resist extraction.


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16 Aug 2010, 11:53 am

I am of two minds about this.

On the one hand, there is rarely any value in deliberately shutting down lines of communication with anyone. Social advancement is about making alliances. One of the inhibitors of any movement for social justice is the inability of 'radicals' to partner with 'reformists' - the radicals maintain a self-image of ideological integrity while hampering the overall progress of the movement by shunning possible allies. In addition, large organisations such as Autism (mis-)Speaks have a significant amount of institutional capacity which, it could be argued, could be redirected and harnessed for the good with constructive engagement. This is a reasonable point of view which a reasonable person could hold. One could say 'they are a large organization that is moving anyway; if the direction of movement can be shifted, it should'.

On the other, the actions of Autism Speaks have caused significant harm to autistic individuals, and to the community in general - some of which are totally inexcusable, such as suing a 14 year-old girl, or using derogatory and dehumanizing language. In my assessment, these actions have tainted Autism Speaks to such a degree that the organization is not fit for purpose, and engaging with them is ultimately counterproductive. However, I can see how a rational individual could hold the previous view.

In conclusion, I will not say that I am 'outraged/angry/distraught' or any other hyperbolic reaction, at the presence of Autism Speaks on this board.

I will say, however that I am sad, and disappointed.



Last edited by Kjartan on 16 Aug 2010, 11:57 am, edited 1 time in total.

TheNewRepublic
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16 Aug 2010, 11:56 am

The Autistic Self Advocacy Network is quite capable of operating at the highest levels of the US administration, and it is they that should've partnered with Alex.

And we, if we're so outraged about the situation, should've stumped-up the cash to pay for it.



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16 Aug 2010, 12:34 pm

I've been helping Jack and Alex with the show, and I can definitely see why people are upset about all this.

First off, I'm sure Alex didn't post anything about it because he simply didn't consider it, and forgot about it. We've all been there, and Alex is just another aspie with ADHD. I'll tell him about this, though. Perhaps it's not too late to make an announcement? And I totally agree that Alex needs to include members a little more in the politics of this site (perhaps just news, but something is better than nothing).

As for this whole "pairing up with Autism Speaks" thing, that's not really the case. Autism Speaks is sponsoring the show. Think of a TV show thanking it's sponsors, Coke and suchandsuch foundation, during commercials and after credits. Autism Speaks is providing funding in exchange for slapping its logo in the background.

And think about it; Autism TV by and for autistic individuals is exactly the type of stuff you guys WISH Autism Speaks were funding. And now that they are trying to change their ways and their reputation, no one will trust it, and just condemns their attempts at making things right.

I'm actually really happy with what's happening, because Autism Speaks is such a huge organization with massive resources, it's great that the autistic community can start to harness those resources for its own work.


I'll talk with Alex and see if I can get him to make some sort of announcement. Also, I'd like to see the members of Wrong Planet getting involved with the show. Perhaps there should be an Autism Talk TV board, where members can make suggestions for the show and add their own input.


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wendigopsychosis
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16 Aug 2010, 12:43 pm

Ah, I just saw this.

leejosepho wrote:
Whoever wrote that *really* needs to be straightened out about certain things, but that other stuff spoken by Marc Sirkin, Autism Speaks Chief Community Officer, is the clear evidence suggesting Alex is now being used by Autism Speaks in order to help promote its misleading and detrimental "urgent global health crisis" agenda.

I would be shocked to ever find out he sold out knowingly, but let us all hope he does not now resist extraction.


Autism Speaks has yet to try to control what the show does and talks about, and no one's going to let them dictate anything whatsoever. Alex and Jack are pretty adamant that this is their show, and Autism Speaks isn't going to provide anything except for funding. (And, if all goes well, this is the kind of stuff they should be funding, if you think about it.)


Also, about the "cleaning up inflammatory posts" and whatnot, I at least haven't heard anything at all about this. If Autism Speaks has said anything (and I don't think they have), I doubt Alex would want to do it (or be capable). Autism Speaks has little authority over what Alex does.


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16 Aug 2010, 12:56 pm

The truth is Alex is on holiday with John and Alex Robison, spending his days cruising in buff cars

Image

My suggestions for series II are:

Episode 1: Alex Visits a Long Term Care home for Severe Autistics
2: Special Needs School
3: Aspies on Death Row... Alex looks at Autistics in the Criminal Justice system.
4: T4 - Lessons from Nazi Germany and the elimination of disabled people.
5: The lessons of prenatal Down's Syndrome testing...



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16 Aug 2010, 12:58 pm

Oh, yeah his sister's pretty buff, too ;)



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16 Aug 2010, 4:00 pm

wendigopsychosis wrote:
I totally agree that Alex needs to include members a little more in the politics of this site (perhaps just news, but something is better than nothing).


You would likely have difficulty getting Alex to agree with that, but you would first have to define what you even mean by “the politics of this site”. As far as I know, things here run on simple civility.

wendigopsychosis wrote:
As for this whole "pairing up with Autism Speaks" thing, that's not really the case.


Then you need to be over explaining that to Marc Sirkin, Autism Speaks Chief Community Officer, and others who are seeing things quite differently:

Quote:
Since joining Autism Speaks it’s been one of my missions to start to bring the community 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.
...
A few months ago, John Robison and I started talking about how we can continue to drive a dialogue ...
John ... thought Alex ... would be a terrific person to involve in this ever expanding conversation ...
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.

http://blog.autismspeaks.org/2010/08/13/autismtalktv/


Earlier, I had misunderstood a bit when mentioning Sirkin's use of the word “conversation”, but Sirkin and “Jessica” and “Dadvocate” and possibly others seem to need to have it explained to them that any relationship between Autism Speaks and Alex does *not* also indicate any kind of partnership between Autism Speaks and WP ... and I suspect even Alex would say he had never even anticipated that kind of wrong assumption.
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16 Aug 2010, 7:44 pm

TheNewRepublic wrote:
My suggestions for series II are:

Episode 1: Alex Visits a Long Term Care home for Severe Autistics
2: Special Needs School
3: Aspies on Death Row... Alex looks at Autistics in the Criminal Justice system.
4: T4 - Lessons from Nazi Germany and the elimination of disabled people.
5: The lessons of prenatal Down's Syndrome testing...

I don't think that is something that just Alex should do. I think everybody in the neurodiversity movement should see what the lower functioning end of the spectrum looks like. Most of the neuodiversity movement is geographically isolated and has never met another ASD person close to their age. I just met one finally about 3 weeks ago. I work with kids on the spectrum and half of the people on the spectrum do not have any talent that they get from their autism, they are rarely happy being outside of an extremely small niche in their environment, and their prospects for the future are not pleasant to think about. Since there are lots of autistics that would live a better quality of life through medical intervention, the question is not so much about whether or not to pursue a cure, but how to use it ethically so that it is not used on the higher functioning end of the spectrum against their will. I hope to talk to Autism Speaks about this more in the future.


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TheNewRepublic
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16 Aug 2010, 7:54 pm

I'm up for it - esp. with a right-wing gun nut as a co-presenter.

You must drop by mine: http://the-newrepublic.blogspot.com/

We have three regular armed commentators and a forth would be just peachy. (Unfortunately I live in the UK and only the criminals can have guns here. I compensated with Invective and bull-terriers).

;)



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17 Aug 2010, 5:39 am

TheNewRepublic wrote:
The truth is Alex is on holiday with John and Alex Robison, spending his days cruising in buff cars

Image

My suggestions for series II are:

Episode 1: Alex Visits a Long Term Care home for Severe Autistics
2: Special Needs School
3: Aspies on Death Row... Alex looks at Autistics in the Criminal Justice system.
4: T4 - Lessons from Nazi Germany and the elimination of disabled people.
5: The lessons of prenatal Down's Syndrome testing...


Is that screenshot legit, or another joke? If it's real, it's a nice look into where Autism Speaks's money really goes, isn't it?



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17 Aug 2010, 6:08 am

No it's not a joke

http://twitter.com/alexplank/status/21096412107



lau
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17 Aug 2010, 6:10 am

http://twitter.com/alexplank/status/21096412107


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Asp-Z
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17 Aug 2010, 6:14 am

Good to know Autism Speaks is spending their donations on Rolls-Royces then... :roll:



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17 Aug 2010, 8:08 am

Asp-Z wrote:
Good to know Autism Speaks is spending their donations on Rolls-Royces then... :roll:


I'm pretty sure that's not the case. My guess is that the reason Alex got the opportunity to ride in one just has something to do with John Robison's business he owns, dealing with high-end autos.

Although, if Autism Speaks were shelling out money for Alex to buy Rolls-Royces, it wouldn't be the worst thing they've ever spent their money on. :)



Last edited by blueroses on 17 Aug 2010, 8:33 am, edited 1 time in total.