Autism Speaks

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Content warning: Autism Speaks

[Image description: six people standing in a line holding signs in protest of Autism Speaks]

Image retrieved from here

Autism Speaks is an autism charity. They are the largest autism charity in the world. A charity raises money and then gives it back to a cause. Autism Speaks raises money and gives it back to autism related causes. They started in 2005. Many people do not like Autism Speaks. Many of these people are autistic and with the Neurodiversity Movement. They have protested Autism Speaks for years.  This article by Cassie Crosman lists some reasons why many people do not like them.

Autism Speaks was not the first autism organization to be controversial. Many people did not like the Autism Society of America before Autism Speaks started. These people were autistic too and with the Neurodiversity Movement. The same happened with Cure Autism Now. Cure Autism Now merged with Autism Speaks. Not every autistic person is against Autism Speaks, but many are. They continue to be controversial. They changed their leadership and how they talk about autism. This did not make them less controversial. There is a lot to discuss when it comes to Autism Speaks. The Neurodiversity Movement has a long history of being against Autism Speaks. 

Autism Everyday

Autism Everyday is a documentary Autism Speaks made in their early days. It features tired and frustrated autistic children, with their parents talking about how hard it is to raise them. The most infamous scene involves Alison Tepper Singer saying she contemplated driving her autistic daughter off the Washington Bridge, and only didn't do it because of her non-autistic daughter. She said this while her daughter was in the room next to her. This drew much outrage from autistic spaces online. Singer released a follow-up statement a few years later, though she still continues to take positions against the Neurodiversity Movement. 

Autism Everyday is a documentary Autism Speaks made in their early days. It features tired and frustrated autistic children. Their parents talking about how hard it is to raise them. The most infamous scene involves Alison Tepper Singer. She said she wanted to drive her autistic daughter off of a bridge. The only reason she didn't do it was because she had a non-autistic daughter. Her daughter was in the room with her when she said this. This drew much outrage from autistic spaces online. Singer released a follow-up statement a few years later. She still continues to take positions against the Neurodiversity Movement. 

Below are some blog posts from around the time Autism Everyday was first released

Alison Tepper Singer and the Rett Girls by Autism Diva

That Autism Film by Aspie Dad

Mel Baggs calls Autism Speaks

In the Yahoo Group AutAdvo, Mel talked about how sie called Autism Speaks on the phone, criticizing their organization's mission. This was shortly after the organization started. Credit goes to the ArchiveTeam and Yahoo Groups Fandom Rescue Project for retrieving this content. 

An email that reads " http://www.autismspeaks.org/ They appear to list the Schafer Autism Report as their main weblink, so I don't know if they'll just dismiss what I said. Especially since they asked for my zip code and I just went on with my prepared message. Their number is 1-888-AUTISM-5 You get a real person answering. I just told her: "Hello, I'm an autistic adult, diagnosed in childhood, and I can't talk so I've prepared this message on my Liberator. I saw your website that you call 'autism speaks', but it seems more like non-autistic people speaking about what they think autism is. I find television overloading but you've just given me one more reason not to turn on my set. I was not attacked by a destructive and puzzling monster, unless you mean some of my doctors, and I don't want any more children to experience being a guinea pig like I did. Thank you. Goodbye." Amanda -- "Vast differences exist between perspectives in the ivory tower of mental health reform and the actual realities faced every day by psychiatric survivors." -Angela Browne"

"From: Amanda <amanda@autistics.us>

To: autadvo@yahoogroups.com

Subject: "Autism Speaks"

Date: Sat, 19 Feb 2005 10:55:42 -0800

Organization: autistics.org

User-Agent: KMail/1.7.2

http://www.autismspeaks.org/


They appear to list the Schafer Autism Report as their main weblink, so I 

don't know if they'll just dismiss what I said.  Especially since they asked 

for my zip code and I just went on with my prepared message.


Their number is 1-888-AUTISM-5


You get a real person answering.  I just told her:


"Hello, I'm an autistic adult, diagnosed in childhood, and I can't talk so 

I've prepared this message on my Liberator.  I saw your website that you call 

'autism speaks', but it seems more like non-autistic people speaking about 

what they think autism is.  I find television overloading but you've just 

given me one more reason not to turn on my set.  I was not attacked by a 

destructive and puzzling monster, unless you mean some of my doctors, and I 

don't want any more children to experience being a guinea pig like I did.  

Thank you.  Goodbye."


Amanda


-- 

"Vast differences exist between perspectives in the ivory tower of mental 

health reform and the actual realities faced every day by psychiatric 

survivors." -Angela Browne"


GRASP and Autism Speaks Articles of Understanding

An autistic led organization called Global and Regional Aspergers Syndrome Partnership (GRASP) decided to partner with Autism Speaks to create a dialogue. This upset many autistic people who were active online. GRASP did other things that people didn't like before this. This was partially why Autistic Self-Advocacy Network was formed. The articles can be found here

Messages about this conflict from the Yahoo Group AutAdvo and AutisticSpectrumTreehouse can be found here

Mel Baggs made a video response to the articles of understanding

Toys R Us Protest Graphic

Toys R Us was one of Autism Speaks's biggest sponsors when they were still in business. They are still sponsors of the Canadian chapter of Autism Speaks. Bev Harp made this graphic to protest Toys R Us's sponsorship.

A flyer with a black background, a pink teddy bear riding a blue dragon, and a stack of rectangular blocks that resembles a cheetah-like animal that reads "Toys are for everyone. Some toy stores are not! Toys R Us promotes a view of autistic children as damaged. Like your kid fine the way he is? Don't support businesses sponsoring "Cure" walks. Toys E Everywhere!"

Boycott Autism Speaks (BAS) is a blog started by a group of autistic people, some of those autistic people including Lei Wiley-Mydske, Kimberly Faith, and Kasianne Asasumasu, that regularly posted about the issues with Autism Speaks and similar organizations. They are a grassroots civil rights movement led by autistic people and their allies. They are not as active as they were in the early-mid 2010s, but their blog is still up for viewing.


Protests against Autism Speaks

Many people have protested Autism Speaks over the years, mainly when the organization was in its early days. 

An autistic fourteen year-old made a parody of Autism Speaks's website called "NT Speaks", which edited the text of the website's front page. 

The fourteen year-old was sued by Autism Speaks. The creator had the right to parody, but Autism Speaks still decided to sue. 

Blog posts about NT Speaks

 Autism Speaks Silences Autistic Child- Autistic BFH

Autism Speaks attempts to sue autistic child

Collaboration with the Judge Rotenberg Center

Content warning: Mentions of torture

Autism Speaks held a walk in Washington DC in November of 2013. At this walk, the Judge Rotenberg Center was a sponsor. They had a table to themselves where they could advertise their center. The JRC has a well documented history of torturing its inmates. It was known by then that the JRC had a history of torture. Autism Speaks still decided to host them. In early 2012, Autism Speaks condemned the torture at JRC after a video of Andre McCollins being shocked multiple times. This was nearly two years before hosting them. 

Autism Speaks recently condemned the torture at JRC after the ban of the shock devices was overturned in July of 2021. However, they never publicly apologized for hosting them at the 2013 walk. 

Below are articles that critique Autism Speaks for their partnership with JRC:

An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center by Lydia Brown

Autism Speaks Partners with Abusive "Therapy" Center

Sesame Street

The team at Sesame Street decided to make an autistic muppet named Julia. They consulted a number of autism organizations in creating the character. Among those was Autism Speaks. They also consulted ASAN. This is a rare example of both Autism Speaks and ASAN both being used for a particular cause. After Autism Speaks started using Julia to promote their 100 Day Kit for newly diagnosed children, ASAN decided to end their partnership. This was after their change in leadership and mission statement. Below are articles and videos about the incident.

You Don't Speak For Us

"You Don't Speak For Us" is a protest song by Cassie Crosman made in opposition to Autism Speaks. The video below features the song with several pictures of autistic activists.

Miscellaneous writings and videos about Autism Speaks

I Am Autism

I Am Autism is a PSA Autism Speaks produced in 2009. It featured videos of autistic people with scary music and a deep voice that was supposed to represent autism and how terrifying it is. The transcript to I Am Autism can be found here

The script to I Am Autism is very similar in structure to a poem written in 2004 called "My Name is Autism", which can be viewed here. Kathleen Seidel made a response to the poem. There is also an essay of the same name written in 1978 that can be viewed here.

Autistic people have made several parodies of I Am Autism over the years that you can view below

The person who wrote the script to I Am Autism, Billy Mann, wrote an apology on his Facebook in 2019. Many people did not think this apology was good enough. The post was deleted by Billy, but the screenshots of it and the comments can be found here


Blog Posts about "I Am Autism"