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adoylelb90815
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29 Jul 2016, 11:57 pm

I just saw this on my Facebook news feed, and thought I'd share this here.
http://www.nbcnews.com/news/us-news/aut ... ?cid=sm_fb



SpaceAgeBushRanger
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30 Jul 2016, 5:27 am

[removed by moderator]



ASPartOfMe
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30 Jul 2016, 10:37 am

This Autistic speaks as a cancer sufferer and as a nephew whose aunt died from pancreatic cancer the same cancer she succommed to. I have mixed feelings about this. The cliche "I would not wish this on my worst enemy" certainly applies here, horrific way to go. But IMHO intended or not by her actions and she was a powerful enemy of the Autistic people and all who care for us.

I do not pretend to know what she was like in private so condolences to those who were close to her and mourn her are in order. My wish is that I live long enough to see a lot of the damage she did undone.


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My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person. - Sara Luterman


Last edited by ASPartOfMe on 30 Jul 2016, 11:55 am, edited 1 time in total.

alex
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30 Jul 2016, 11:00 am

I am very sad to hear this news and would like to express my condolences to her family.

I met Suzanne on a few occasions, and she was certainly a very loving woman who had very good intentions and worked hard to help people.

The last time I saw her, she gave a beautiful speech about the unique gifts that individuals with autism have.


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ASPartOfMe
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31 Jul 2016, 12:25 am

Some Reactions

Jim Palmer former baseball superstar and Autism parent
Sadly, @autismspeaks cofounder Suzanne Wright died. Tireless champion for autism research & awareness. #hero @Orioles @masnOrioles

Ed Asner
A beautiful soul was lost today. RIP @SuzanneWrightAS. You started something that will live on forever. Thank you from the Asner familyA beautiful soul was lost today. RIP @SuzanneWrightAS.

Marco Rubio
Saddened by death of @autismspeaks founder Suzanne Wright, a great American & friend.

Tom Brokow - Former NBC Nightly News Anchor
god bless suzanne wright who died today of cancer.
founder of autism speaks and den mother at nbc where husband bob was ceo


Mutant Princess was similar to the few other non celebrity autistics that reacted in twitterverse
Honestly, there's no point in taking joy from #SuzanneWright's death. The harm she caused outlives her. Her death brings us no reprieve

Jonathan Mitchell Prominent Autistic Nuerodiversity movement critic
Though I've had my differences with ‪#autism‬ speaks, was saddened to hear of the passing of cofounder Suzanne Wright.


I have yet to find a reaction from a prominent Nuerodiversity advocate. This happened late on a Friday night in the summertime, they may be pursuing special interests etc. I will post if I find one.


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My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person. - Sara Luterman


BuyerBeware
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31 Jul 2016, 8:22 pm

She might have helped put a nice paving on my personal road to Hell with her good intentions, but I try very hard not to wish harm on anyone or overindulge in schadenfreude.

We're all doing the best we can down here, and my slate isn't clean either.

RIP, Suzanne Wright. Pancreatic cancer is a nasty way to go.


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Tawaki
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02 Aug 2016, 10:38 am

Having two friends who died from pancreatic cancer, I wouldn't wish that on anyone. Money, connections and status can't even make that better.

I'm sure Mrs.Wright was a wonderful person, who did what she did out of love.

But good intentions doesn't always hack it. Mrs. Wright took a disorder, which affects all ages and made it child centered. The puzzle piece logo might be a comfort for the caretakers, but people with autism are not usually developmentally disabled. The people with autism I know, know that the puzzle piece means lacking, fixing what is missing and a cure. My husband hates that people believe he is "less", and "needs fixing". Someone on this board has an avatar with the message "Autism Acceptance. " For me, that represents a better message.

I also don't care for how Autism Speaks, instead of being inclusive of all in the spectrum made it into two camps. Parents of very low children and everyone else. Now it's a dog fight who is more deserving, your really low child who is a level III or the other who is level 1? And does level 1 truly mean *mild* and deserving of less help?

I hope Autism Speaks decides which it wants to be, either totally child centered or be more inclusive to all ages and abilities on the spectrum. I'm pretty vocal about how I despise Autism Speaks fund raising. Who knows how much Mrs. Wright had a hand in that. You start a founation, then 80 people are throwing opinions into the pot.

While I am very sorry for the Wright family's loss of a spouse, mother, grandmother and excellent activitist, I believe her death shouldn't be a reason to gloss over Autism Speaks issues in the bigger autism community.



lostonearth35
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02 Aug 2016, 10:50 am

I am unmoved by her death and I don't care what anyone else says. I hope A$ falls apart completely without her but too many people have been brainwashed by its lies and evil.



adoylelb90815
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02 Aug 2016, 2:04 pm

I'd say that the phrase "the road to hell is paved with good intentions" describes her as she thought she was trying to help her grandson, but the organization became evil in my opinion, especially as they won't let adults with autism have any input at all.



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03 Aug 2016, 1:58 am

Appointing two autistic adults to the thier board and having Adult Autistic bloggers is not no adult input

The Great Leap Backward: Autism, Adulthood, and Bullying by Amy Gravino

My experiences in the workplace as someone on the autism spectrum by Phil Martin

They have done a lot of really really bad things in the past and I really hate a lot of things they do today but that does not excuse a lot of our community repeating over and over things that are not true or dated. Lets put our energies on stuff like such a small percetage of thier money going to help autistics and thier families, support of ABA, that invalidating puzzle piece and #MSSNG genome project and more importantly what exactly are they doing or plan to do with the genetic information gained from #MSSNG?. Besides I really really do not like having to defend them.


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My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person. - Sara Luterman


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03 Aug 2016, 2:39 pm

I have read a number of obituaries in the mainstream media, all have been fawning not acknowledging any controversy. The one exception has been the British Newspaper "The Telegraph"

Suzanne Wright, autism campaigner – obituary


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DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person. - Sara Luterman


cecilfienkelstien
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03 Aug 2016, 8:44 pm

My grandpa died of pancreatic cancer and it is awful. I have my differences with AS. I hope she did and said all these things out of her love of her grandson. I believe we have work to do to change as for the better


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03 Aug 2016, 11:15 pm

A couple of more reactions

Singer Toni Braxton claims Suzanne Wright helped her "conquer" her sons autism
Toni Braxton: ‘My Son Is No Longer Autistic

Geraldo Rivera
RiP #SuzanneWright who pioneered the crusade to bring dignity compassion & science to the battle vs autism-A wonderful person sorely missed.


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My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person. - Sara Luterman


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07 Aug 2016, 1:56 pm

Tawaki wrote:
Having two friends who died from pancreatic cancer, I wouldn't wish that on anyone. Money, connections and status can't even make that better.

I'm sure Mrs.Wright was a wonderful person, who did what she did out of love.

But good intentions doesn't always hack it. Mrs. Wright took a disorder, which affects all ages and made it child centered. The puzzle piece logo might be a comfort for the caretakers, but people with autism are not usually developmentally disabled. The people with autism I know, know that the puzzle piece means lacking, fixing what is missing and a cure. My husband hates that people believe he is "less", and "needs fixing". Someone on this board has an avatar with the message "Autism Acceptance. " For me, that represents a better message.

I also don't care for how Autism Speaks, instead of being inclusive of all in the spectrum made it into two camps. Parents of very low children and everyone else. Now it's a dog fight who is more deserving, your really low child who is a level III or the other who is level 1? And does level 1 truly mean *mild* and deserving of less help?

I hope Autism Speaks decides which it wants to be, either totally child centered or be more inclusive to all ages and abilities on the spectrum. I'm pretty vocal about how I despise Autism Speaks fund raising. Who knows how much Mrs. Wright had a hand in that. You start a founation, then 80 people are throwing opinions into the pot.

While I am very sorry for the Wright family's loss of a spouse, mother, grandmother and excellent activitist, I believe her death shouldn't be a reason to gloss over Autism Speaks issues in the bigger autism community.
You also can't really fix what isn't broken in the first place. I think the problem that Neurotypical Parents of most autistic children is that they don't understand it is just as hard on the child as it is on them. They think it is a Great time for us, but horrible for them. :roll:


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10 Aug 2016, 5:36 pm

Column from Michael Carley founder of GRASP and author of the the book "Autism From the Inside Out"

Autism Without Fear: On The Passing Of Autism Speaks' Suzanne Wright - For Fellow Spectrumites


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My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person. - Sara Luterman


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20 Aug 2016, 2:23 am

I wouldn't wish that type of death on anyone. You know what they say, though. What goes around comes around.


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