45, Autism Speaks & The Future of Our Activism

We want to take a moment to acknowledge all the progress we have made since our grassroots efforts began. As one of our founding organizers has said:

“This is not just a boycott, this is a civil rights movement.”

It is important to see our progress but we must remember that it’s equally important to keep the pressure on Autism Speaks and their financial sponsors. We must continue to speak out against hate, ableism and fear. For over a decade, Autism Speaks has dominated the conversations about autism while ignoring the needs and wishes of the autistic community.  They have created an environment where we are feared, where our civil rights and autonomy are ignored, where we are told that we are unable to speak for ourselves as Autistic people. They have made this common place. Is it any surprise that our current president has adopted so much of their hateful rhetoric?

The disability community is facing threats like never before under the current administration. The US now has a president endorsed by the founder of Autism Speaks and who has already made attacks on the rights that disabled people have fought so hard for. We are facing the next four years of an administration that is anti science, that champions the widely discredited belief that autism is a vaccine injury, that has proposed eliminating services that help autistic and other disabled people live, work and participate in our communities. This is an administration that seeks to repeal the Affordable Care Act, which enables so many in our community to have access to health care. We now have a secretary of education who does not know what IDEA is and thinks that our federally protected civil rights should be “left to the states”.

This is a frightening time, but we are not powerless.

We must continue to challenge any organization that wants to speak for us, without us. We will challenge any administration that does the same. And it is vitally important to remember that the threats to those of us in multiply marginalized communities are ever present and cannot be underestimated. All of our movements are interconnected and we must keep working not just for disability rights, but for disability justice.

#BoycottAutismSpeaks is an autistic civil rights issue. #BlackLivesMatter is an autistic civil rights issue. #Resist is an autistic civil rights issue.

 

-Organizers of Boycott Autism Speaks

#ActuallyAutistic People React to Autism Speaks “Change” in Mission Statement

Recently, Autism Speaks announced a change in its mission statement.  They have removed the word “cure” while keeping words like “interventions”, “solutions” and talk about research into the causes of autism, which still implies that they have not distanced themselves completely from eugenics and “prevention” of autism.   

Autism Speaks claims to want to increase “understanding and acceptance” after over a decade of working against those very things.  This is not the language or intentions of autism acceptance. While this has been portrayed as a move forward, we at Boycott Autism Speaks are more than skeptical.  

 

What do #actuallyautistic people think?



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Image: Screen shot of a Facebook comment from Kassiane Alexandra S. that reads

 

They haven’t apologized to autistics specifically or generally.

Therefore, they are still flagrant trash.”
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Image: Screen shot of a Facebook comment by Lei Wiley-Mydske that reads:

 

“Autism Speaks saying they are done searching for a cure reminds me of how they claimed to distance themselves from the shit science linking autism and vaccines while still funding studies into supposed links between autism and vaccines. So, forgive me for my pattern recognition. And they still have over a decades worth of apologies to make to autistic people and our families.#stillboycottingautismspeaks #boycottautismspeaks
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Image: Screen shot of a Facebook comment by Nick Walker that reads:


The anti-autistic hate group Autism $peaks has updated its mission statement to remove references to “curing” autism. Some folks are talking about this as if it’s a huge step forward. Don’t be fooled. The new version of the mission statement has replaced the now-unfashionable word “cure” with repeated use of the word “solutions.” From a group that has consistently used the same sort of pro-eugenics rhetoric that the Nazis used (e.g., calling disabled people “burdens”), and continues to fund eugenics research, the use of the word “solution” is far more chilling than “cure.” It’s a code word that we Jews have heard before.”


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Image: Screen shot of a Facebook comment by Amy Sequenzia that reads:

“So, Autism $peaks dropped the “cure” from its mission statement.

If you think I will praise the organization, you don’t know me.

The words A$ released look pretty at first sight, but I have learnt that when it comes to parent-led organizations, we need to pay attention to every word.

“Causes” and “interventions” are still there.

If you want to know the “causes”, the objective is prevention (eugenics)

“Interventions” = ABA. It means change who we are by torturous methods

Besides, where are the apologies for the years of hate, dismissal, silencing, and marketing against our existence?

I haven’t seen that statement yet

Still #BoycottAutismSpeaks”

 

Autistic adult Corina Becker reacted to the change on their blog, No Stereotypes Here:

 

“You want to change? Show us you can actually change.  Until then, we’re not falling for your superficial gloss over, your charade.  You’re not actually supporting us, you’re not actually listening to us, and until there is fundamental changes, you never will.”

 

 

#BoycottAutismSpeaks Statement on 50 Cent’s “Apology Donation” to Autism Speaks

Earlier this week, 50 Cent posted a video to his Instagram account mocking and  bullying a young autistic man, Andrew Farrell.   He later apologized and attempted to make amends by making a large donation to Autism Speaks.  As expected, the media surrounding this event has centered the experiences of the victim’s family while completely ignoring what, if anything the actually autistic person has to say.  A hastily made donation to an organization that works against autistic people is not an apology, even with the best of intentions.

Many in the Autistic Community share our frustration.

As The Black Autist said on their Facebook page:

“As a black autistic person, I accept your apology for mocking a young autistic employee live on Instagram.

However, you screwed things up when you hastily donated to Autism Speaks with little to no research on the company. I understand you want to contribute to a good cause as a sign that you want to spread autism awareness. But donating to Autism $peaks is not the way to do it. They do not stand for autism acceptance and empowering the autistic community. A$ seeks to cure autism and only make money to advertise how tragic autism is.”

Activist and BAS Organizer Amy Sequenzia responded as well:

How is this helping if he is “apologizing” for mocking an Autistic person by donating money to an organization that will not only mock, but dehumanize Autistics?”

In making a donation to a group that is largely considered a hate group by many in the autistic community, 50 Cent is now financially supporting the silencing, bullying and erasure of actually autistic voices.  We realize that it was very likely not his intent to do more harm.  However, harm has been done.  We encourage everyone to please research BEFORE you donate to make sure that you are actually helping the people that your organization purports to serve.  We encourage 50 Cent to reach out to actually autistic voices to learn about the harm that Autism Speaks does to our community.   Please support organizations such as Autism Women’s Network and The Autistic Self Advocacy Network that are by and for autistic people and that work toward autistic civil rights instead of against them.

#BoycottAutismSpeaks

Why Boycott Autism Speaks?

Why do we boycott?

This is a Civil Rights Movement.

Our intentions with the boycott are to bring the experiences of the REAL authority on Autism, Autistic people, as central to the conversation about Autism.

We seek for Autistic Voices to lead.

We seek to empower Autistic people by showing the world that Autistic lives are valuable, no matter the amount of support or interdependence is needed to live our lives.

We embrace the values of Neurodiversity, Disability Rights and Disability Justice.

We seek for the elimination of hateful and dehumanizing rhetoric when talking about our lives.

We acknowledge and honor the fact that Disability is a natural part of the human experience, just as the ADA stated almost 25 years ago. Disability is never shameful and we are proud of our identities as Disabled & Autistic!

We seek Acceptance, Inclusion, and Respect.

WE DO NOT SEEK A CURE. A cure is not only unlikely, as Autism is our neurological wiring and essential to who we are as human beings, but it also directly contradicts our stated goals.

We seek unity among all Autistics through the elimination of ridiculous, arbitrary and ableist functioning labels. We acknowledge that the use of those labels is something that groups like Autism Speaks use to silence us and discount us.

We boycott because we want a better future for Autistic people. The future we envision is fundamentally shaped by these ideals. We don’t just imagine a better world for Autistic people and our families, friends and loved ones, we are creating it.

The following joint letter explains why Autism Speaks is not an organization that ethical businesses should sponsor, fundraise for, or otherwise offer support. If Sponsors are interested in supporting Autistic people, we urge them to support one of the worthy organizations represented on this statement.

http://autisticadvocacy.org/2014/01/2013-joint-letter-to-the-sponsors-of-autism-speaks/

For more info on why Autism Speaks is not an organization you should support you can google “Why is Autism Speaks bad?” you can also find valuable information within the post linked below:

http://thecaffeinatedautistic.wordpress.com/new-autism-speaks-masterpost-updated-62014/

If you are looking for other organizations to support, we suggest these two:

Autism Women’s Network

BAS Statement about Autism Speaks Board Appointments

 

Recently, Autism Speaks announced the appointment of three new individuals to their Board of Directors. Two of these individuals, Valerie Paradiz and Stephen Shore, are Autistic adults. While bringing Autistic people onto the board is a step in the right direction the politics of the organization remain unchanged and therefore our opposition to it will not waver. Until they stop researching cure, and spreading fear and hatred of Autistic people they are still everything that we stand against.
Boycottautismspeaksinfo@gmail.com

BAS statement re: ASA

Original Post here.

Boycott Autism Speaks is extremely disappointed in the decision of the Autism Society of America to give a prominent platform to Caren Zucker & John Donvan authors of “In A Different Key” at their annual conference.

This book presents many falsehoods and inaccuracies about the neurodiversity & autistic rights movements and about prominent disability activists. The book even sympathizes with parents who commit filicide against their disabled children.

An organization that claims to work for the autistic community cannot condone or endorse such dangerous misinformation. An organization that claims to work for us cannot pretend that this is an attempt to promote “both sides” when one side is literally fighting for our own humanity and civil rights.

We at BAS want to reiterate that we are more than just a boycott of Autism Speaks. We are a civil rights movement. One cannot claim to stand with us in the boycott when they embrace the same ideas that we are fighting against. If an organization supports the same principles as Autism Speaks, they do just as much harm to our communities.

If you support BAS, you support the neurodiversity movement. You support Autistic rights, autistic self determination and authentic inclusion. We do not just boycott one organization, but the ideas behind it that have held us back and caused our communities so much harm.

For more information, please read Amy Sequenzia’s article on the PACLA blog:

https://autloveaccept.wordpress.com/2016/03/02/about-the-autism-society-of-america-on-ddom2016/

If you are looking for organizations to support, look locally. Who is actually helping Autistic people in your area? Who is working to ensure that our rights and interests are centered? If there is no such organization, ask yourself what you can do to support Autistic people in your individual communities.

Boycott Autism Speaks officially supports these organizations:

Autism Women’s Network,
Tone it Down Taupe
Ed Wiley Autism Acceptance Lending Library.

#BoycottAutismSpeaks

Testimonial about JRC–which Autism Speaks Supports

  • About 12 years ago, fresh out of college, I moved from Arizona to Boston with my psychiatrist partner, who was accepted into fellowship at Cambridge Hospital. This time is so vivid in my memory as a person with autism because it was my first time living in a big city and it was 9/11. People were everywhere and jobs were scarce. I read about a job working with kids at The judge Rotenburg Center in Canton, Mass. As an abused child, it seemed like a natural fit for me.

    I arrived early for my interview and was seated in a cheerful waiting room, decorated In Disney theme. My interviewer called me and escorted me past a game room where some kids were playing very quietly.

    After a brief exchange about how kids earn the privilege of using the game room as a reward for good behavior, I was ushered into a classroom.

    I had already begun to feel uneasy when I saw children, some in wheelchairs hooked up to a battery pack. At some point I was asked, “Would you have a problem delivering an electrical shock to a child displaying behaviors not in their behavior plan?”

    I rarely lie, but I said I wouldn’t because I wanted to know more so I could notify my partner that this was going on. I vaguely remember something being said about isolation being used.

    I left horrified and confused. It’s one of the worst memories I carry with me and I feel dirty having been there.

Anonymous Testimonial

Imagine your worst days being put on display for the world to see, while being described as the destroyer of all hopes and dreams.  This is the nature of the message Autism Speaks spreads about my twin sister, Jessica.
 
Jessica is my other half.  She does not deserve to be spoken about this way.  She deserves the same respect as any other human being.
 
I am willing to bet the messengers on Autism Speaks would not want to be portrayed in this manner, why not affords the same courtesy to those you supposedly love?
 
The answer is simple-they do not love autistic personhood.  They do not speak for me, my sister or my family.

Why I don’t Support Autism Speaks

By Sandy Kinnamon

I thought it might be helpful to give some personal context as to why I don’t support Autism Speaks and am participating in efforts to boycott them.

My daughter was diagnosed as Autistic May 2012. I was scared and knew nothing about Autism, nothing positive; anyway, of the little I did know.

I was given Autism Speaks 100 days kit, which did have some helpful information. So, I decided to view their website, since I‘d heard of them, but knew nothing about them. As I began to look around their site, I became increasingly uncomfortable with what I was reading. What they were saying didn’t appear to describe my daughter at all. And it only further terrified me and I began to feel my despair deep. By the time I saw the video of called “Autism Everyday”, here ,where Judith Singer spoke of driving off a bridge with her Autistic child, but remembered she had a much more valuable, “normal” child to be there for, I was completely horrified and wondered if one day I would feel this way. If Autism was THAT bad?

It briefly led me to groups that weren’t at all helpful or accepting of their Autistic children and even more desperation and depression engulfed me as I tried to figure out how to save her from this cursed affliction.  But one day she looked into my eyes with so much love and affection and I snapped out of my haze and again SAW my child. This child I worked years through secondary infertility to get. And the more other Autistic children and adults I met, the more I knew these were dreaded lies, awful mischaracterizations of every person on the spectrum. These people were loving, affectionate, bright, intelligent, funny…challenges, to be sure, but in direct opposition to Suzanne Wright’s “Call to Action” here stating emphatically they are burdens, with families that aren’t living, but barely existing, they are lost, missing, diseased and gravely ill. None of the people I know are ANY of those things, including my daughter.   

You want to know the cost of this kind of misleading, manipulative rhetoric for dollars, of which only 4% is used to help actual families? Here is an account of a Mother, Author and blogger, Sharon (Mama’s Turn Now) whose 12 year old son Jay, happened to be reading over her shoulder as she was reading these despicable words.  I literally cried at the pain caused to this innocent child. No child should ever read how they are a destroyer of their family.  That price is TOO high!

I cannot support the silencing of Autistic voices by Autism Speaks. The bullying of a 14 year old Autistic girl, who dared to parody them, here.  How  absolutely disgusting is that? We must join together Autistic advocates and Parents to come up with real tangible ways, like mentorship programs, to help our loved ones. There is a better way than Autism Speaks. Our people deserve better.

 

Sandy

Sign the Petition

 

Why I’m Against Autism Speaks

Why am I anti Autism Speaks?
You are probably thinking  “Isn’t all the exposure they give to autism a GOOD thing?” Well no.. not the way they do it and not for the reasons they do it.
I often hear from many people that any awareness is good awareness, I’m sorry but that is WRONG. Autism Speaks does not promote awareness, acceptance or even better lives for people living on the autism spectrum. They promote pity and fear of autism so you will donate money to their organization. Autism Speaks refers to autism as a crisis and epidemic. They constantly and consistently talk about autistic people being burdens and diseases.
Autism Speaks talks about how autistic people cause broken homes, divorces and how autism families are not living.They claim people with autism are lost. They promote obliteration and extinction of a type of people with their research for a “cure”.
They refuse to listen to and include the voices of autistic people.
If you don’t believe any of what I have said, read the following article and don’t just stop at the article, read the comments that go along with it.
They often use inflated stats to scare parents into joining in on their fundraisers; fundraisers where only 3 to 4 cents on every dollar earned actually goes towards helping the community in the form of grants which are not as accessible as the organization makes it out to be.  The rest of the money they collect through fundraising and donations is used to pay cushy salaries and research for cause and cure.
Autism Speaks does not speak or even care for your child, my child, myself or my autistic friends. Autism Speaks wants to eradicate us. Autism speaks wants to use our situations to line their pockets and they want to do it without the voices of the people they claim to want to help.
Myself, my son and all autistic people DESERVE better representation. Autism Speaks should NOT have the monopoly on speaking out on what autistic people need… we damn well know what we need, let us speak for our self.
Nothing About Us Without Us!