Page 1 of 1 [ 3 posts ] 

Grammar Geek
Veteran
Veteran

User avatar

Joined: 22 Oct 2015
Age: 28
Posts: 889
Location: Missouri

25 Oct 2018, 11:43 am

Niantic of Pokémon Go fame voiced its support of Autism Speaks in a tweet the other day.

https://twitter.com/nianticlabs/status/ ... 24933?s=21



Mona Pereth
Veteran
Veteran

Joined: 11 Sep 2018
Gender: Female
Posts: 8,356
Location: New York City (Queens)

01 Nov 2018, 3:21 pm

Grammar Geek wrote:
Niantic of Pokémon Go fame voiced its support of Autism Speaks in a tweet the other day.

https://twitter.com/nianticlabs/status/ ... 24933?s=21


It would be very helpful to newcomers (like me) if someone could post a good, concise yet reasonably comprehensive, annotated, UP-TO-DATE summary of the objections to Autism Speaks.

I've been exploring the online autistic community for about half a year now. As far as I can tell, the main issues people have with Autism Speaks are the following:

1) For a long time, they didn't have any autistic (or, at least, openly autistic) people on their board of directors. Then they appointed John Elder Robison, who served for a while but resigned in 2013. More recently, they apparently now have two autistic people on their board, Dr. Stephen Shore and Dr. Valerie Paradiz. (I'm not sure if this information is up-to-date.) ASAN's commentary on this development is here.

2) It is often said that a disproportionate share of the money they raise goes to administrative and fund-raising expenses, and that the remaining money goes almost entirely to research aimed at trying to eradicate autism rather than helping autistic people. Does anyone here have up-to-date documentation of this issue?

3) Their fund-raising appeals, at least in the past, have tended to feature sensationalistic portrayals of how awful it is for a parent to have an autistic child. In one video, a woman spoke in the presence of her child about how she had considered committing murder-suicide by driving off a bridge with said child. Another video, "I Am Autism", portrayed autism as a child-stealing demon with a spooky voice narrating the first half of the video. However, the current tone of their website seems more supportive, so I'm not sure to what extent they still produce problematic portrayals of autism.

4) Donations to Autism Speaks have resulted in less money being donated to other, older autism-parent-oriented organizations that were providing more services.

It would be helpful if others here could fill in any gaps in what I've said above.


_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.


ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 36,231
Location: Long Island, New York

01 Nov 2018, 6:12 pm

Mona Pereth wrote:
Grammar Geek wrote:
Niantic of Pokémon Go fame voiced its support of Autism Speaks in a tweet the other day.

https://twitter.com/nianticlabs/status/ ... 24933?s=21


It would be very helpful to newcomers (like me) if someone could post a good, concise yet reasonably comprehensive, annotated, UP-TO-DATE summary of the objections to Autism Speaks.

I've been exploring the online autistic community for about half a year now. As far as I can tell, the main issues people have with Autism Speaks are the following:

1) For a long time, they didn't have any autistic (or, at least, openly autistic) people on their board of directors. Then they appointed John Elder Robison, who served for a while but resigned in 2013. More recently, they apparently now have two autistic people on their board, Dr. Stephen Shore and Dr. Valerie Paradiz. (I'm not sure if this information is up-to-date.) ASAN's commentary on this development is here.

2) It is often said that a disproportionate share of the money they raise goes to administrative and fund-raising expenses, and that the remaining money goes almost entirely to research aimed at trying to eradicate autism rather than helping autistic people. Does anyone here have up-to-date documentation of this issue?

3) Their fund-raising appeals, at least in the past, have tended to feature sensationalistic portrayals of how awful it is for a parent to have an autistic child. In one video, a woman spoke in the presence of her child about how she had considered committing murder-suicide by driving off a bridge with said child. Another video, "I Am Autism", portrayed autism as a child-stealing demon with a spooky voice narrating the first half of the video. However, the current tone of their website seems more supportive, so I'm not sure to what extent they still produce problematic portrayals of autism.

4) Donations to Autism Speaks have resulted in less money being donated to other, older autism-parent-oriented organizations that were providing more services.

It would be helpful if others here could fill in any gaps in what I've said above.


Third Autistic Person On Autism Speaks Board - Robyn Silber

Bob and Suzanne Wright founded Autism Speaks. Suzanne died of Pancreatic cancer and Bob resigned as CEO shortly thereafter although he is still on the board of directors, this was a few years ago.

At around this time, their mission statement was significantly changed.
Autism Speaks Drops Cure/Prevention From Mission Statement

Before these changes, it was widely believed that the true mission was to eliminate Autistic people from the earth via eugenics. Find the Autism causing genes then parents would abort their autistic fetuses.

Many neurodiversity advcates believed these changes are designed to fool people into thinking they have changed. They point to the #MSSNG project. #MSSNG is an Autism Speaks and Google collaboration to sequence the DNA of 10,000 families. Others find the #MSSNG label offensive (Autistic people are not missing).

Autism Speaks lobbying has been the prime factor making Applied Behavioral Analysis(ABA) therapies insured and the gold standard Autism therapy in the United States. Autism Speaks still heavily lobbies for these therapies. ABA is the subject of bitter debate. too complicated for this thread. In brief, objectors believe even reward based ABA is designed to force Autistic people to behave unnaturally as neurotypicals leading to mental illness and that it teaches Autistic people to become too dependent on others.

Boycott Autism Speaks Facebook page


_________________
Professionally Identified and joined WP August 26, 2013
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