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ylevental
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08 Dec 2015, 7:59 am

https://www.autismspeaks.org/news/news- ... rd-members

His name is Stephen Shore and he is a professor of special education at Adelphi University. Hopefully, this will be encourage autistic representation in Autism Speaks. He seeks to provide more community services

Proof that he is autistic from his homepage: http://www.autismasperger.net/bio.htm



donaar
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08 Dec 2015, 8:17 am

Too bad that its only one cause if he proposes something they don't like they will all just vote against him

He is there to make it look like they listen and care


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vermontsavant
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08 Dec 2015, 8:28 am

i just read that on facebook


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08 Dec 2015, 8:54 am

There are two autistic members on the board. Valarie Paradiz is autistic
Autism Speaks announcement
ASAN Statement on Autism Speaks Board Appointments
Boycott Autism Speaks statement
John Elder Robinson statement
Jonathan Mitchell blog post

All cynicism is warrented and don't trust and verify and follow the money applies here. But that is for a few days from now.

Let's look at what has happened over there over the past year. Bob Wright and Rob Ring have resigned. Liz Feld is leaving and now they are starting to fulfill a key demand from Autism Rights advocates. Taking these all into account cynicism is not the only reasonable conclusion.

The autism rights movement did this. Those that started the boycott movement did this. John Robison by resigning from Autism Speaks galvanized our community played a role. Autistic Autism Speaks employees whom I was very cynical of might have played a role from the inside. ASAN played a role. Those that bombarded thier #MSSNG hashtags on Twitter and thier comments section to the point that they took the comments away did this. We had neurotypical allies and that was important and they deserve our thanks, but it must be remembered the ally NT's would not have listened to us if Autistics did not speak first.

Many of us thought Autism Speaks was too powerful and the cause was hopeless. We were derided on these very pages as powerless online trolls who were bieng ignored and laughed at. Let's keep up the pressure and let's see what happens.


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10 Dec 2015, 6:01 am

ylevental wrote:
https://www.autismspeaks.org/news/news-item/autism-speaks-welcomes-three-new-board-members

His name is Stephen Shore and he is a professor of special education at Adelphi University. Hopefully, this will be encourage autistic representation in Autism Speaks. He seeks to provide more community services

Proof that he is autistic from his homepage: http://www.autismasperger.net/bio.htm


I give him one year before he resigns in disgust. Autism $peaks can't be fixed. It needs to me nuked. It's a terrible organization.


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Butterfly88
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10 Dec 2015, 10:57 am

Happy to hear it. It's about time!



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10 Dec 2015, 1:45 pm

...again.
Don't forget that John Elder Robison was previously on the board and resigned because of Suzanne Wright's nonsense.

Hopefully this time they actually listen to the Autistics on the board. I'm not holding my breath, though.


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10 Dec 2015, 2:10 pm

In another aspect of my life there is also a national level organization that sells itself as representing people it does not. They are actually quite similar to Autism Speaks, in fact. Strongly built out PR machine, lots of fundraising, nice salaries and a bit of a problem at the core. Over the last 10-15 years they've garnered a solid reputation for bringing on board one or two people from the "problem" group (those complaining they are being harmed not helped), with much fanfare. Usually within two years those people realize they were nothing but a PR move as they are granted no power and no voice. They move on and eventually are replaced by a new one, bright eyed with optimism that *this* time the organization really wants to be fully inclusive. Charlie Brown, Lucy & the Football.

Autism Speaks will need to do two things before one or two token autistic board members matter.
1.) Enact sweeping changes & use their PR machine to promote them
2.) Apologize once those changes have made a difference.


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11 Dec 2015, 12:59 am

A short posted interview and a 30+ minute podcast interview with Dr. Steven Shore regarding his appointment,

http://the-art-of-autism.com/stephen-shore-talks-about-his-appointment-to-the-autism-speaks-board-of-directors/


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vermontsavant
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11 Dec 2015, 7:06 am

Edenthiel wrote:
In another aspect of my life there is also a national level organization that sells itself as representing people it does not. They are actually quite similar to Autism Speaks, in fact. Strongly built out PR machine, lots of fundraising, nice salaries and a bit of a problem at the core. Over the last 10-15 years they've garnered a solid reputation for bringing on board one or two people from the "problem" group (those complaining they are being harmed not helped), with much fanfare. Usually within two years those people realize they were nothing but a PR move as they are granted no power and no voice. They move on and eventually are replaced by a new one, bright eyed with optimism that *this* time the organization really wants to be fully inclusive. Charlie Brown, Lucy & the Football.

Autism Speaks will need to do two things before one or two token autistic board members matter.
1.) Enact sweeping changes & use their PR machine to promote them
2.) Apologize once those changes have made a difference.
whats the other organization your eluding to


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ASPartOfMe
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11 Dec 2015, 9:01 am

Edenthiel wrote:
In another aspect of my life there is also a national level organization that sells itself as representing people it does not. They are actually quite similar to Autism Speaks, in fact. Strongly built out PR machine, lots of fundraising, nice salaries and a bit of a problem at the core. Over the last 10-15 years they've garnered a solid reputation for bringing on board one or two people from the "problem" group (those complaining they are being harmed not helped), with much fanfare. Usually within two years those people realize they were nothing but a PR move as they are granted no power and no voice. They move on and eventually are replaced by a new one, bright eyed with optimism that *this* time the organization really wants to be fully inclusive. Charlie Brown, Lucy & the Football.

Autism Speaks will need to do two things before one or two token autistic board members matter.
1.) Enact sweeping changes & use their PR machine to promote them
2.) Apologize once those changes have made a difference.


They need to apologize and pay damages as soon as possible.
A lot more then 4 percent of their spending needs to go helping autistics. Helping autistic families needs to be a means to the goal of helping autistics not the goal.
Instead of allowing them at thier fairs they should be trying to close the Judge Rotenberg Center.
Stop supporting ABA as the "gold standard" of treatments.
Rename the #MSSNG campaign
Better yet forget about the genetics research "rabbit hole".


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o0iella
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28 Dec 2015, 4:26 pm

Until the majority of board members are autistic, and until is stops focusing on a cure and starts focusing on increasing quality of life for autistic people, Autism Speaks will continue to be a bad organisation that should be fought against.



Jaden
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30 Dec 2015, 8:55 am

donaar wrote:
Too bad that its only one cause if he proposes something they don't like they will all just vote against him

He is there to make it look like they listen and care

Exactly.

John Elder Robison was once a part of Autism Speaks, but he quit after they repeatedly ignored him trying to tell them that their message was a hurtful one.


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30 Dec 2015, 9:49 am

Just to repeat the information from way above there are TWO Autistic board members at autism speaks, four new members on the board who were not there last year at this time and the CEO Bob Wright resigned from that position in May

Since people keep on bringing up John Elder Robison this is how he reacted to the news
https://www.facebook.com/JohnElderRobison/posts/10155576483669619


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31 Dec 2015, 1:15 pm

ASPartOfMe wrote:
Just to repeat the information from way above there are TWO Autistic board members at autism speaks, four new members on the board who were not there last year at this time and the CEO Bob Wright resigned from that position in May

Since people keep on bringing up John Elder Robison this is how he reacted to the news
https://www.facebook.com/JohnElderRobison/posts/10155576483669619

That's fine, and I'd be the first to celebrate if the change turned the organization around, but this is one thing where I'll have to see it to believe it. If they prove they can change, by actually making that change, then I'll consider supporting the org. Until then, I'm not holding my breath.


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