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Should WrongPlanet sever all ties with Autism Speaks?
Yes WP should sever all ties with Autism Speaks 92%  92%  [ 72 ]
No WP should continue to work with Autism Speaks 8%  8%  [ 6 ]
Total votes : 78

o0iella
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15 Sep 2014, 6:11 pm

I went to a retreat for people on the Autism Spectrum recently and said that one of the Autistic forums I frequented was WrongPlanet. That was met with derision by several people, one person said "I want nothing to do with because it's in bed with Autism Speaks".

I said that most people on that forum hated the organisation, but thinking about it, I don't actually know for sure.

So I thought I'd commission a poll to find out. Perhaps if enough people vote then Alex may pay attention!



ReticentJaeger
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15 Sep 2014, 6:20 pm

...Since when has this forum had anything to do with A$?



PlainsAspie
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15 Sep 2014, 6:55 pm

Do they have any ties now? I know that Alex got funding from them for Autism Talk TV, but I don't think that's going on any more. He's written some things critical of A$



AspieUtah
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15 Sep 2014, 8:34 pm

PlainsAspie wrote:
...I know that Alex got funding from them for Autism Talk TV, but I don't think that's going on any more. He's written some things critical of A$

It appears to be a little more involved than that. The Wikipedia.org article about Alex Plank https://en.wikipedia.org/wiki/Alex_Plank described the Autism Talk TV series as being ?sponsored by Autism Speaks.? The series recently renewed its URL (autismtalk.tv) for another year, according to WhoIs. Of course, that doesn?t imply anything more certain than there is a hope to continue the series.

Autism Speaks didn?t just sponsor the series, its own leaders, including Vice President Peter Bell and Science Advisory Board Member John Elder Robison (before he resigned from his AS duties) were invited guests on two programs. While the group stated at the onset of the series that it wouldn?t control the content of the programs, the content for those two episodes, at least, observed no such disclaimer.

Yes, Plank has published critical statements about Autism Speaks, but, in my opinion, his actions speak louder than his words. I have several concerns about the policies of both AS and WrongPlanet. Neither seems to me to appreciate and support fully the autism spectrum as a real spectrum of people with diverse ideas and opinions. But, that is for another topic.


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FireyInspiration
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15 Sep 2014, 9:07 pm

I think the poll speaks for itself



ASPartOfMe
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16 Sep 2014, 12:21 am

Alex doesn't pay attention. He completely ignored a large campaign to get him to change a WP policy on another matter.

I saw him speak at a conference earlier this year. Speech was all about the techniques he used to act "NT", his TV show etc.


We stay here because what we get from other members outweighs the bad parts . But we have to acknowledge that it has gotten to the point that we sell a little bit of our soul by coming here and enabling this .


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AspieUtah
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16 Sep 2014, 9:01 am

ASPartOfMe wrote:
Alex doesn't pay attention. He completely ignored a large campaign to get him to change a WP policy on another matter.

I saw him speak at a conference earlier this year. Speech was all about the techniques he used to act 'NT', his TV show etc....

So, in addition to his acceptance (request?) of an Autism Speaks sponsorship to produce an online television broadcast wherein he invites AS leaders to speak directly to his audience, he failed to respond to a coordinated request from his web-site users to change its policy, and his public speeches are about: 1) him and his ability to mask in public, and 2) him and his work as a Hollywood celebrity? Hm....

Quote:
...We stay here because what we get from other members outweighs the bad parts. But we have to acknowledge that it has gotten to the point that we sell a little bit of our soul by coming here and enabling this.

Even that appears tenuous, in my opinion. The forum boasts 80,000 members. But, anyone with a passing familiarity with phpBB-style forums knows that, once a member signs up, the membership never goes away and can't be deleted. So, members who publish one post or thousands who then get disinterested in the forum, or banned, are forever counted as active members. This fact can be a little misleading; since I joined, I have read the new posts of about 100-200 members, not 80,000. Combined with what I consider the forum moderators ignoring the published forum rules, or, worse, engaging in their violations themselves, I believe that this is a hobbled forum with little or no active leadership by its owner. Among the forums that I have published or frequented online, that opinion is a first for me.


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DW_a_mom
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16 Sep 2014, 3:29 pm

Alex is a young guy who has his own priorities, which is his right and pretty much suitable for someone in his age group. He does work to keep the site from falling part technically, and to that end does still invest substantial time on occasion. But the vast majority of the time he has nothing at all to do with anything day to day here. Looking to him for active leadership here, or to represent the thought process of the membership, is futile. That just is not his strength or interest.

I have mixed feelings about Autism Speaks, myself. Since it is the biggest beast out there, I think it would be foolish to not at least try to work with them and try to make progress against the more negative aspects. That is just pragmatic. But I also know it is a frustrating experience.


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Last edited by DW_a_mom on 17 Sep 2014, 3:52 pm, edited 1 time in total.

PlainsAspie
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16 Sep 2014, 4:31 pm

DW_a_mom wrote:
Alex is a young guy who has his own priorities, which is his right and pretty much suitable for someone in his age group. He does work to keep the site from falling part technically, and to that end does still invest substantial time on occasion. But the vast majority of the time he has nothing at all to do with anything day to day here. Looking to him for active leadership here, or to represent the thought process of the membership, is futile. That just is not his strength or interest.

I have mixed feelings about Autism Speaks, myself. Since it is the biggest beast out there, I think it would be foolish to not at least try to work with them and try to make progress against the more negative aspects. That is just pragmatic. But I also now it is a frustrating experience.


I agree with your first paragraph. While Alex isn't exactly a fierce critic of A$, he hasn't made his site into a lovefest for them. I don't resent him for it. Anyone who thinks they are sticking it to Autism Speaks by leaving the forum, they should think again.

I don't think A$ can be changed from within though. Autism Society of America was, but that's because individual chapters have more power. By contrast, A$ is very to-down. JER tried to change it from.within.http://jerobison.blogspot.com/2013/11/i ... peaks.html



DW_a_mom
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17 Sep 2014, 3:54 pm

PlainsAspie wrote:
DW_a_mom wrote:
Alex is a young guy who has his own priorities, which is his right and pretty much suitable for someone in his age group. He does work to keep the site from falling part technically, and to that end does still invest substantial time on occasion. But the vast majority of the time he has nothing at all to do with anything day to day here. Looking to him for active leadership here, or to represent the thought process of the membership, is futile. That just is not his strength or interest.

I have mixed feelings about Autism Speaks, myself. Since it is the biggest beast out there, I think it would be foolish to not at least try to work with them and try to make progress against the more negative aspects. That is just pragmatic. But I also now it is a frustrating experience.


I agree with your first paragraph. While Alex isn't exactly a fierce critic of A$, he hasn't made his site into a lovefest for them. I don't resent him for it. Anyone who thinks they are sticking it to Autism Speaks by leaving the forum, they should think again.

I don't think A$ can be changed from within though. Autism Society of America was, but that's because individual chapters have more power. By contrast, A$ is very to-down. JER tried to change it from.within.http://jerobison.blogspot.com/2013/11/i ... peaks.html


Right, JER's experience is what I was thinking of when I wrote I knew the attempts would be frustrating.

I'm not sure it can be done, either, but it isn't like we can get rid of them. They are way too good at everything most of us are bad at, and they are firmly entrenched as "the" autism organization in the eyes of the general public.


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o0iella
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17 Sep 2014, 4:59 pm

If Alex relies on AS to provide money for Autism Talk TV, we should try crowdfunding his costs.

DW_a_mom. I'd rather see AS eclipsed and marginalised by more representative organisations. I agree that it will be difficult to achieve this, but just because it's difficult doesn't mean we should give up on that goal.



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17 Sep 2014, 5:02 pm

And autism speaks is really so evil,we really need to severe all ties.flawed at times like many organizations but not evil


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Charloz
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17 Sep 2014, 5:03 pm

Should the site sever all ties with Autism Speaks?

All votes but one say: yes.

I wonder... is the single vote that says no from Alex? :lol:



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17 Sep 2014, 5:21 pm

Am I correct in inferring that there is an implication on this thread that it is somehow objectionable for Alex to take money from Autism Speaks to fund his projects?

I don't understand what's wrong with that. Is it an issue of public perception?



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17 Sep 2014, 6:23 pm

Charloz wrote:
Should the site sever all ties with Autism Speaks?

All votes but one say: yes.

I wonder... is the single vote that says no from Alex? :lol:
there would be more than 1 vote.20% supports autism speaks,they just don't post much.me personaly. i dont care one way or another


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johnrobison
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17 Sep 2014, 8:22 pm

The suggestion that Alex had me or my son as part of the Autism Talk TV because of Autism Speaks is backwards. We were part of Autism Talk TV because Alex lived with us off and on for a few years before settling in California.

Autism Speaks gave him some sponsorship money for that project, but they didn't renew and his connection was largely lost when Marc Sirkin quit the organization. Peter Bell was interviewed along with a number of other autism figures at IMFAR, not because he was a sponsor.

Alex's efforts to connect with Autism Speaks and effect change were based on the same ideal I had, when I joined their science board. We spoke to progressive thinkers like Marc and we thought the organization might change and become more accepting toward us. Both Alex and I saw that wasn't the case at the top level, even though we did see change among some rank and file. I think it's sad that our efforts were ultimately unsuccessful, and I don't think he deserves to be attacked for trying to effect change.

I can't speak for Alex but to the best of my knowledge there is no connection between Autism Speaks and Wrong Planet today. All there ever was, was the TV sponsorship, and that ended several years ago.


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