Why I #BoycottAutismSpeaks by Mina K

People are still sending in submissions to the flashblog!

This is a great piece from a 13 year old young woman, Mina K, who is a sibling and the daughter of an Autistic mother.  She wants the world to know why she and her family boycott:

Crusading against Hate: Why I boycott autism speaks flashblog
Crusading against Hate: Why I boycott autism speaks flashblog on a bright yellow background

I want to tell you why I boycott autism speaks. Two years ago my mom came to talk to me and my brothers to tell us that we were going to stop shopping at some stores. She told us what the stores were, and then told us the names of other stores we were going to shop at instead. We asked her why we couldn’t go to those stores anymore. She said we were boycotting them. She then asked us if we knew what a boycott was. My brother said it was like when black people in the sixties did the bus boycott because they were forced to ride in the back of the bus. My mom said yes. Then she told us that even though people think autism speaks is good it really isn’t. She opened up her phone and showed us 2 videos. One was called I am autism and one was called Autism every day. When we finished watching the videos, we wrote down what they made us think after each one. My brothers said it was ok for me to tell you what they said. Here is what my brothers wrote after the first one:

“My name is D.W. and I am 12 years old. Autism Speaks really hurts people. I watched “I Am Autism.” That’s not the whole thing about autism. We have a sister and brother who have autism. What you say is not true. It’s not true about how autism people do and feel.”

“My name is A.W. and I am 9 years old. Watching “I Am Autism” made me feel scared. Like my autistic brother and sister will affect me or infect me or something, like they said, or they will do something bad. People who think about autism like that will make everybody scared of people who have autism. It made me think maybe I should feel scared of my little brother and sister. If I could talk to Autism Speaks about this, I would say you are sick.”

Here is what my brothers wrote after they watched the 2nd one:

“My name is D.W. and I am 12 years old. I watched “Autism Every Day.” I thought it was rude what the people said about the kids in front of them. The kids can hear! That was mean. And you don’t know—that lady said her son will never get married. You don’t know what that little boy is going to be when he grows up. People change. I bet the reason that girl said she wished her sister didn’t have autism is because she heard her mom say that before. This is making me mad. I don’t want to talk about it anymore.”

“My name is A.W. and I am 9 years old. I watched “Autism Every Day” and I hated it. I don’t even know if I want to talk about it either. It made me really sad when the lady said she wanted to drive her kid off the bridge. You’re not supposed to kill your kid just for no reason, just ‘cause of autism. And they weren’t teaching the kids right. Why did that person grab the boy’s hand? When he was stimming he was happy. When they grabbed his hand, he felt trapped and started crying.

Why were there so many white people in the video? Does Autism Speaks think Asians and Hispanics and Blacks don’t have autism? Why weren’t there any dads? Maybe the people were mad because they got divorces and decided to blame their kid and blame autism. Who cares if you can’t have a bagel? Take it to go. At least you have a kid. Lots of people have something different about them. At least they’re alive.

Those people made me sad. They need to try harder to like their kid.

Autism Speaks is really bad for people who don’t know anything about autism. And for people who know about autism.

If my little brother and sister saw that video, I bet it would make them feel really sad. I bet it would make them want to kill themselves.”

I couldn’t show my mom what I wrote after watching the video because the video made me mad and I wrote a lot of bad words and curse words about autism speaks. I’m not going to write them here either, but I am going to say why I am proud of my family for boycotting. I am proud because my mom and my little brother and sister are autistic. They don’t need to be cured and people who are pregnant who find out the baby might be autistic don’t need to kill their kid because the kid is autistic. Autistic people are not some monsters. They are really smart and they have their ways of doing things just like we have our own ways of doing things. I would never want someone to try to cure my family because they don’t need to be cured. Autistic people need help but so do other people with disabilities and people with no disabilities. We all need help with stuff. A lot of people know about autism speaks and they could help people understand autism better but instead they make people scared of if. I have a disability too and it makes me sad to think maybe someone could have though I shouldn’t be born.

I think the world is better because of autistic people. When my little sister was small she didn’t talk a lot. We had to figure out how to understand her without words. It takes longer but it isn’t bad. Just cos something is harder doesn’t mean it’s bad. It’s harder to comb long hair than it is to comb short hair but no one says all long hair is bad and we should get rid of it. Different hair works for different people.

When i tell people I have autistic people in my family they say they’re sorry. They think it’s a sad thing. I don’t want people to think that. No one says they’re sorry if you say your favorite color is red or your favorite color is blue. They just say ok. I have to keep boycotting until autism speaks decides to change because i don’t want any other kids to think they should have to be ashamed of autistic people. I love my mom and my little brother or sister just the way they are. I don’t care that they are autistic and you shouldn’t care either.

-Mina K

Crusading against hate! autism speaks founders are NOT heroes!

Our last flashblog entry.  This came in late, but we thought it was important to share…..

This post originally published here

Crusading against hate! autism speaks founders are NOT heroes!

by Autism Dog Girl

  hello,Recently People magazine featured bob and sussan wright as “heros among us”  They got a huge cover page and a story of coarse but here is the thing People if you had done a little research first on your subject matter you would have learned very quicklyBobs and Susan wright are NOT heros!

  • there is nothing heroic about dehumanizing Autistics!
  • there is nothing heroic in spread fear and stigma for your personal gain!
  • There is nothing heroic about fighting to keep autistic advocates out of the discussion of autism
  • there is nothing heroic about make an entire group of people feel like burdens and curses to their family!
  • there is nothing heroic about SHUT OUT the people you claim to speak for and silencing their voices!
  • there is nothing Heroic of parading parents in front of a screen to cry and say how much their child has ruined their lives!
  • There is nothing heroic about painting parents and caregivers who murder autistics in their care as victims faced with a horrible burden and turning the murder victims into the villains!  There is nothing ok about demonizing the person who’s life was taken from them and turning the killer into a matter in a cry for more help!
  • their is nothing heroic about demonizing Autism and fighting against autistics that want acceptance, and understanding
  • There is nothing heroic about promoting organizations known for severe violations of human rights like JRC
  • Bob and Susan wright are NOT HEROS!!! Autism speaks hurts #actuallyAutistic people! the little good they have done pales in comparrison to the pain suffering, tears and harm they have caused building barriers of fear between Autistics and the community! Period!
                       white German Shepherd behind “boycott Autism Speaks” written in chalk

People magazine you may ot have realized this but by featuring them as heros and battling autism as a good thing you too have contributed to the steriotyping, dehumanizing, demonizing and spreading of hate and fear towards Autistics

people magazine the very title og your article was steeped in ablism, in ignorance and clearly designed to creat fear, fear of autim, T
My mom recently passed and I miss her more then anything one of her biggest fears was that my disability would mean my life would be valued less, she feared what societies view of my value as a person, or more appropriately lack of value in the eyes of a society that sees me as nothing more then a burden, would permit others to do to me, what rights would be allowed to be stripped from me because I was seen as worth less and a burden due to my autism, and most of all she feared if politics went really messed up I would be on a list of burdens to cull from humanity due to my disability, and while that last sentences sounds pretty extreme and unlikely  the rest of her fears were valid. And they are valid because of how autism speaks spreads awareness, because of how you portrayed autism in your Article,
Painting autism as something to be feared, to be battled paints autistic as less, so often you hear parents of autistic kids fearing what will happen to their kids when they die, well how you speak of autism will effect the answer to that directly, The message you send to the world is about autism and autistic is how autistics will be viewed.
If the message is that we are drains, burdens and that we destroy the marriages and live of our families then people we see us a such and they will view us as less then human.  And in the words of a friend of mine
“Here is the problem with the fear rhetoric, it makes people afraid it dehumanizes those living with this disorder, it enables people to see them as less and that is very dangerous!!, extremely dangerous! When you view someone is less it is easier for people to do all sorts of awful things to them, use them as experiments, rape, kill or lock away in some institution where not even their basic needs are met left to sit in their fecal matter. If we present our children and loved ones as burdens then that’s how they will be treated! No on will want to help them, they will be seen as drains and their value will be lost to others. And al the things I listed above will continue to happen as they do today! How can we expect society to help and stand up for our loved ones when we are telling them our children are nothing but a problem, a burden and saps on the economy! ” (S,D)
No one with autism no matter how mild or severe is less than human because of their challenges, challenges don’t take away from your humanity!
Everyday autistics around the world hear how they are burdens, drains, need fixing, our murders are excused, we are told everyday our lives are worth less and burdens to our non autistic loved ones, at the same time our voices are silenced by organization like autism speaks when we try to speak up and say we are here we matter,
Bob and Susan wright are not heros their organization shuts out and fights to silence autistics and silence our voices, they spread stigma and fear and excuse murder that is not heroic!
if you want to feature real heros look at the Autistics and our families who are fighting for acceptances, understanding and supports that actually benifit autistic people.look at people fighting the stigma and demonetization of Autism because in a world the tells you we ar lost, broken and burdens the true heros are the ones who stand with us in love support and acceptances who lift up our voices, We are not broken, we are not lost we are here we matter and we deserve to be heard! So if you want to highlight heros highlight Autistics, high the parents and allies in autism acceptance who support neurodiveristy and acceptance those are the real heros!!

why i #boycottautismspeaks by Diary of a Mom

This post originally published at Diary of a Mom

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{image is a photo of me at a lectern, addressing the crowd at an Autism Speaks dinner in Hartford, CT. I believe it was 2009.}

I thought that I was doing right by my child.

(I didn’t know yet how radically I wasn’t.)

I thought that I was fighting for her.

(I was fighting HER.)

I raised money.

(A lot of it.)

I gave speeches.

(To get other people to give money too.)

I thought that helping my daughter meant finding a cure for who she is.

(Think about that.)

I brought my daughter to places in which she — in all of her beautiful, glorious, tangled Brookeness — was being called a tragedy, a scourge, a casualty of a brutal epidemic.

(I am so sorry, baby. So, so sorry.)

And then I started to get it.

To understand the damage being done to autistic people in the name of helping them.

(I listened to autistic adults.)

And I asked Autism Speaks to listen too.

Again.

And again.

And again.

They refused.

Again.

And again.

And again.

And again still.

I wanted so badly to believe that they had the capacity to evolve. To listen. To recognize the travesty (and danger) of demonizing autism and, in so doing, dehumanizing and further marginalizing autistic people. I wanted to believe that no one could really be so callous as to dismiss (and, at times purposefully silence) the voices of those for whom they claim to speak.

I tried hard. I hung on for far longer than I should have. I wanted to believe. But misplaced optimism isn’t going to help my girl to fight the stigma that Autism Speaks fortifies every time they describe her and her brethren as missing, lost, gone, bankrupt, broken, part of a tragic epidemic which is stealing our children.

My daughter is autistic. Autism is not an accessory for her nor something that can be excised from her being. It informs and affects and creates her perceptions of the world. It is the filter through which she tastes and smells and hears and sees and feels EVERYTHING. She is not only autism, certainly, but autism is as big a part of her identity as my gender is part of mine.

You don’t mitigate saying to an Autistic person, “It’s not YOU that are a burden,” by clarifying, “it’s just your Autism that makes you a burden” any more than you would lessen the blow of saying that women are a burden by saying, “Oh, but not YOU, just your femaleness.” You can’t separate with words what is not separable in reality.

I often tell a a story that I heard at a conference many years ago about a young man who had been told that Autism was a “bad guy” in his head, making it hard for the “good guy” (presumably his non-existent “non-autistic” brain) to do its work. The young man, quite logically, put a gun to his head to kill the bad guy.

The destruction of Autism is the destruction of human beings. Autism Speaks’ goal of eradicating autism says to my child, “If we could have helped it, you would not have been born.” As her mother, I cannot let that stand.

I continued to work with AS for a long time. They were too big, I reasoned, too powerful, to walk away from. I believed that I could make an impact in their messaging. In some ways, I’d still like to believe that I did. I stuck around because I had to do everything in my power to help to save my daughter and a generation of others from growing up believing that it’s okay to say that they never should have existed, that eradication of people like them is an acceptable goal, that, in many cases, they’d be better off dead. I believed that I could make Autism Speaks understand the irrevocable damage that they were doing to the people whom they purport to represent.

I couldn’t.

And that is why, despite my best efforts, I #BoycottAutismSpeaks.

Because my child is not lost. She is not gone. And she sure as hell is not a burden.

Crusade Against Hate

Crusade against hate

by Tuttleturtle

Post originally published here.

Image is framed in green and in the lower left corner is green/blue diagonal box with blue
Image is framed in green and in the lower left corner is green/blue diagonal box with blue “unequal” sign and green text that reads Boycott Autism Speaks

On the bus I am screamed at for trying to cope. For doing the things that I need to do. People, all around me, grouping together, in a mob against me, for being different.

This is the autism awareness we have.

I am told, time after time “you are not autistic”, because I don’t match there stereotypes. Because I can speak, or type (because it might be online). Because my communication is clear, or because they can relate to things which I say. I cannot be the kid rocking in a corner, hands on their ears, humming, to keep out the horrors of the surroundings, no matter if that is something I will do.

This is the autism awareness we have.

“Autistic adults don’t matter” I hear, in those words. I am told my words don’t matter, that people like me do not deserve help. I am told it only matters if we do things for the children, and those who are over 18 can be on their own. We are not part of the picture.

This is the autism awareness we have
This is the reality of our lives as it is. The hatred thrown at us. The denials of our lives. This is the reality of the fighting for acceptance – that every day, its meeting more people who’ve been misinformed and cannot believe that our words about ourselves are the truth.

Asking for help, is a quest to find acceptance. Traveling in public, a question of whether or not challenges will come up. Our words are not valued, our stories not told. We share, but we are overwhelmed, denied, and pushed out, by those who want autism to mean other things.
And still, we go out there, we face the world. Still we tell our stories. Still we go and do what we need to do, to make things better for ourselves. Still, we work to make things better for those who are like us. Because that’s what needs to be done.

Even when it makes it harder right now, we work for understanding. Even when it is painful, we work for acceptance. Even when it is a struggle, we work against the hatred that right now, is the primary message available about autism.

A Moment of Crusading Faux Pas: Watching Autism Speaks Destroy Its Brand

A Moment of Crusading Faux Pas: Watching Autism Speaks Destroy Its Brand

by Kerima Cevik

 

Once you see a thing you can’t forget it. Unfortunately I am being made to witness this again and it saddens me. The professionally crafted photograph of Bob and Suzanne Wright that must have taken an entire photo shoot to achieve, yet again using their grandson as scenery to promote their brand as “crusading heroes” against autism.  In ten years they have never grasped that using a disabled person as scenery to justify your speaking in their place is going to make a great many disabled people and the families who love those people sad at extreme lack of understanding of what ableism is and how their behavior exemplifies and perpetuates ugly stereotypes about disabled people.  But I need to say here that People Magazine got it right. Bob and Suzanne Wright are crusading against autism, autistic people, and everything that being born with a brain that is divergent from the norm stands for. I am not certain that merits a title of heroes. It does concern me though, because that particular two word combination reminds me of another couple I grew up seeing back in the 70s.  (Continue Reading at The Autism Wars….)

 

Image is framed in green and in the lower left corner is green/blue diagonal box with blue "unequal" sign and green text that reads Boycott Autism Speaks
Image is framed in green and in the lower left corner is green/blue diagonal box with blue “unequal” sign and green text that reads Boycott Autism Speaks

Why I #BoycottAutismSpeaks by Jane Strauss

Originally published as a Facebook Note here.

 

Two words:  Hate Speech.

Whenever an organization engages in eugenics-oriented research funding and rhetoric, they spew hate.

Whenever an organization makes excuses for people who murder or attempt to murder a person based on their disability, they spew hate.

Whenever an organization supports “treatment methods and organizations” that torture people, resulting in bodily harm, PTSD, or both, they spew hate.

Whenever an organization focuses the majority of their efforts on eliminating people or attributing blame for a disability rather than improving quality of life, they spew hate.

Whenever an organization purports to speak for disabled people without including us in a meaningful way, while using war rhetoric that strikes at the core of our very way of being, they spew hate.

Whenever an organization espouses “awareness” that engenders hatred instead of understanding and compassion, they spew hate.

Autism Speaks and its founders do all of these.  There is already too much hatred in the world.  There is no need to add more.

 

Image is framed in green and in the lower left corner is green/blue diagonal box with blue "unequal" sign and green text that reads Boycott Autism Speaks
Image is framed in green and in the lower left corner is green/blue diagonal box with blue “unequal” sign and green text that reads Boycott Autism Speaks

These Are The Words Autism Speaks Uses to Talk About Us #BoycottAutismSpeaks

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Image:  Dark magenta textured background.  White text reads:
These are the words that Autism Speaks uses to talk about Autistic people and our families.

Crisis.  Burden.  Barely Living.  Despair.  Fear.  Missing.  Crusade.  Battle.  Desperate.

Our lives are beautiful, complex and valuable.  But Autism Speaks is telling the world to hate us.  This is why I boycott Autism Speaks.

Autism Speaks Celebrates Ten Years of Stigma & Working Against The Autistic Community #BoycottAutismSpeaks

Autism Speaks Celebrates Ten Years of Stigma & Working Against The Autistic Community

TW/CW: Autism Speaks rhetoric, talk of eugenics, hate speech against Disabled/Autistic people

picasso (1)

Image:  Light colored text reads: “Nearly two-thirds of children with autism have been bullied.” -from Autism Speaks website When the biggest autism advocacy organizations are still using the rhetoric of hate and fear in regards to our lives, is this shocking?  Autism Speaks, you are supposed to be on our side, but you work against us.  You call us burdens and talk about how much we cost to society.  If that’s not bullying, I don’t know what is.  Text is on multicolored faded vertical stripes.  

Apparently, Autism Speaks is celebrating ten years of speaking for Autistics while actively silencing and stigmatizing us.   Recently, they posted a list of things they have accomplished in the last ten years on their website.   As you might expect, it was extremely problematic, disrespectful, inaccurate, even full of some outright lies, and most importantly and predictably, without the input or wisdom of any Autistic people. Here, I do my best to pick apart what they have said and offer my own suggestions and input.  

Will they listen?  

Probably not.  

I’m Autistic after all.  

Autism Speaks speaks for us, and my response follows.

“1. Autism’s prevalence has skyrocketed.

Ten years ago, autism’s estimated prevalence was 1 in 166. Today it’s 1 in 68 – an increase of more than 100%  in one decade.”


  1. More informed professionals are better able to identify Autistic people than in the past.  Autistic people have always been here, but with different labels, institutionalized, segregated from society or living their lives without appropriate supports.


http://aquietweek.com/2014/02/23/autistic-history-my-grandfathers-story/


“2. Direct screening suggests that autism’s prevalence may be even higher.

In a landmark study funded by Autism Speaks, screeners went into schools in South Korea and found 1 in 38 children affected by autism, most of them previously undiagnosed. Autism Speaks is now working with  the CDC to conduct a similar direct-screening study in the United States. “


  1.  The Korean study was based on parent reports.   Only 63% of parents out of 55,000 responded to the survey.  Researchers also pointed out that parents of Autistic children were more likely to fill out the survey.  In addition to that, the survey identified Autistic characteristics in children.  Those children may or may not fit the criteria for an autism diagnosis.


“It doesn’t mean all of a sudden there are more new children with (autism spectrum disorders),” said co-author Dr. Young-Shin Kim of the Yale Child Study Center. “They have been there all along, but were not counted in previous prevalence studies.”


Do you even know what autism is?


http://neurocosmopolitanism.com/what-is-autism/


“3. Autism can be reliably diagnosed by age two.

Because earlier intervention improves outcomes, Autism Speaks is redoubling our efforts to increase early screening, especially in underserved communities.”


  1.  Autism Speaks needs to stop perpetuating the myth of a “developmental window” and pushing parents to put their toddlers into therapies that are the equivalent of a full time job.  We do need more resources and supports in under-served and marginalized communities.  Autism Speaks could do that if they were more responsible with their budget.  They need to prioritize the needs of individuals and families instead of trying to cure or fix what is not broken.


       So, where is the money going?  How much is spent in our communities,            especially our most vulnerable and marginalized communities versus                how much is spent investing in “research” that is basically eugenics?


http://autisticadvocacy.org/wp-content/uploads/2014/09/AutismSpeaksFlyer2014.pdf

“4. High-quality early intervention does more than develop skills.

Early intervention can  change underlying brain development and activity. It’s also cost effective as it reduces the need for educational and behavioral support in grade school and beyond.”


  1.  You can’t change my neurology.  I am Autistic and training us to “act normal” does not work.   Listen to Autistic people instead of trying to speak for us and fix us!  Stop talking about how much we “cost” for needing support.  I need a lot of support, as do many of my Autistic peers.  Some days I need more support than others, but my life is always worth living.   Being Autistic is not a problem, but ableism and the fact that the biggest autism advocacy organization consistently refers to us as burdens and drains on society, sure as hell is a problem!  


http://ollibean.com/2014/09/14/attitudes-grading-people/

http://yesthattoo.blogspot.com/2013/02/ableism-is-to-blame.html

“5. Behavioral therapy for autism can transform lives.

Though children with  autism vary in how far they progress with  behavioral therapy, we now have solid evidence of its benefits. This has enabled Autism Speaks to successfully advocate for health coverage of behavioral health treatment, now the law in 38 states and counting. Now many families are getting desperately needed therapy that was once denied.”


  1.  Behavior is communication.  Stop trying to force us into “behavioral therapies” that deny our dignity, autonomy and humanity.  ABA and compliance based therapy is NOT the answer.  Love, acceptance and respect for ALL  human diversity is.  


http://timetolisten.blogspot.com/2013/09/the-cost-of-indistinguishability-is.html

https://unstrangemind.wordpress.com/2013/01/27/no-you-dont/

http://loveexplosions.net/2013/01/30/the-cost-of-compliance-is-unreasonable/

“6.One third of children and adults with autism are nonverbal.

Autism Speaks continues to support research on  the best uses of assistive communication devices and has donated thousands of the devices to individuals and families who could not otherwise afford them.”


  1.  Some of the best people I know are non-speaking.  I don’t understand why ⅓ of all Autistic people being non speaking is a problem for you, Autism Speaks.   Because it is not.  Lack of support and resources, that is the problem.  

You can do more, Autism Speaks.  You can stop trying to fix Autistics, start respecting that all communication is valid, and start supporting more non speaking Autistics with access to AAC instead of spending millions to try to prevent us from being born.  How many  more Autistic people could you help if your focus was on support instead of prevention?


http://www.everyonecommunicates.org/aacintro.html

http://autismwomensnetwork.org/not-good-enough-autism-speaks/

“7. Assistive communication devices encourage speech in some nonverbal children.

An Autism Speaks-funded study dispelled the belief that nonverbal children with autism who don’t speak by age 5 will remain nonverbal for life.”


  1.  Autism Speaks needs to recognize that ALL communication is valid. Autistics who do not speak, who have difficulty at times with verbal speech, or who prefer to communicate in non traditional ways need to be supported, not forced to talk.  For many Autistic people, spoken language is difficult and uses too many of our resources.  Put the focus on respecting and supporting all forms of communication, not on talking.

http://timetolisten.blogspot.com/2013/10/if-you-dont-use-your-words-you-wont-be.html

http://www.huffingtonpost.com/ariane-zurcher/life-with-autism_b_2005489.html

“8. Autism-related GI disorders are real.

Research by the Autism Speaks ATN revealed that half of children with autism have GI disorders and the pain can  worsen behavioral symptoms. The Autism Speaks Autism Treatment Network has developed effective treatment guidelines for pediatricians and tool  kits for parents.

9. Autism-related sleep disturbance is common and treatable.

Thanks to research funded by Autism Speaks, we now have evidence-based medical guidelines and tool kits to help parents improve the sleep of those with  autism.

10. As many as one third of individuals with autism have epilepsy.

The potentially dangerous seizures are not always obvious without specialized testing.

11. Autism can affect the whole body.

Seizures, disturbed sleep and painful GI disorders are just  some of the medical conditions commonly associated with autism. The Autism Speaks Autism Treatment Network is dedicated to advancing a “whole person” approach to autism healthcare.”


8-11.  Co-occuring conditions are NOT Autism.  Yes, it is important to address and acknowledge the medical needs of Autistic people, but do not confuse separate diagnoses with autism.  

“12. Whole genome sequencing can guide personalized treatment.

Autism Speaks’ MSSNG program is changing the future of autism through the genome sequencing of thousands of affected families. Already, this  work, which is being stored on  the Google Cloud Platform, is producing medically valuable information and identifying targets for the development of new autism medicines.”


  1.  As Autistic people have stated many times, we are NOT MISSING!  From the name of the program to the eugenicist implications of this research, you are not helping Autistic people.  In fact, you are ignoring the very real needs of Autistics right now in a quest to prevent more of us from ever being born.


http://autisticadvocacy.tumblr.com/post/104787330327/we-are-notmssng

“13. Environmental factors can play a significant role.

Experts once believed that autism was almost entirely hereditary. Then research with families participating in the Autism Speaks Autism Genetic Resource Exchange showed that non-inherited influences on early brain development account for nearly half  of a child’s risk for developing autism.”


  1.  Wow, too bad that is just not true:  


http://thechart.blogs.cnn.com/2014/07/22/genetics-play-a-bigger-role-than-environmental-causes-for-autism/

“14. We’ve begun to identify autism’s environmental risk factors.

These factors include maternal infection and high exposure to air pollution during pregnancy. And we now know that prenatal vitamins with  folic acid can  reduce the risk of autism if taken before conception and through pregnancy.”


  1.  Autism is a natural part of human diversity.   “Reducing the risk” means what exactly?  Preventing more Autistic people from being born?   The “links” between folic acid and exposure to air pollution are not proven.  They are hypothesized by various studies, but not proven.  


Bro Do You Even Science_ (1)

Image: White text outlined in black reads “Bro, do you even science?” Text is on photograph of Bill Nye and Neil deGrasse Tyson who both look incredibly annoyed as they sit in front of two microphones at a table.

“15. Nearly half of those with autism wander or bolt.

Autism Speaks has taken the lead in promoting wandering prevention and recovery through the funding of programs that increase awareness, train first responders and teach water safety.”


  1.  Typically developing children also wander and bolt.  

Resources should be focused on accepting all communication, and giving Autistic children access to AAC and the ability to develop self-advocacy skills instead of just being trained in compliance.   Many times Autistic children wander and bolt to avoid situations that are overwhelming or hostile.  

First responder training, while seemingly a worthwhile goal RARELY works.  If it did, Disabled people would not be disproportionately affected by police violence.  


http://theautismwars.blogspot.com/2014/08/why-autism-training-for-law-enforcement.html


Teaching water safety is definitely something that could benefit Autistic children. Autism Speaks, can you invest some of the money you are using to prevent people like me from being born and put it back into our communities so that more Autistic children will be safe now?  

“16. Nearly two-thirds of children with autism have been bullied.

Autism Speaks has partnered with  the National Center for Learning Disabilities and others to raise awareness and combat bullying of special-needs individuals.”


  1.  When the biggest autism advocacy organizations are still using the rhetoric of hate and fear in regards to our lives, is this shocking?  Autism Speaks, you are supposed to be on our side, but you work against us.  You call us burdens and talk about how much we cost to society.  If that’s not bullying, I don’t know what is.

“17. Most adults with autism (84%) remain living with their parents.

Autism Speaks is advocating for federal and state policies that will increase community living options for adults with autism.

18. Nearly half of 25-year-olds with autism have never held a paying job.

Autism Speaks is working to increase vocational and post-secondary educational support for young adults with  autism, and is working with employers to expand job opportunities.

19. Each year, an estimated 50,000 teens with autism age out of school-based autism services.

Autism Speaks continues to work with  public and private partners to provide the support that individuals with  autism need to successfully transition into adulthood and become valued and valuable members of their communities.”


17-19.  How are you doing this?  What programs are you developing to put in place to help us?  Are they led by Autistic people?  Are the things we want considered or are you talking about us, without us again?  


http://goldenheartedrose.tumblr.com/post/89338501188/autism-speaks-masterpost-new-updated-6-20-14

“20. The cost of autism across a lifetime averages $1.4 million to $2.4 million.

These costs, which increase with  intellectual disability, place a tremendous burden on  families and society, but can  be dramatically reduced with high-quality interventions and adult transition support.”


Tremendous burden.  


Wow.  


(I also think it’s important to point out that if you don’t over-therapy your kid to the point of not allowing them to enjoy their childhood, the cost of raising your Autistic child will go down a whole lot. )  


http://www.autistichoya.com/2012/05/you-are-not-burden.html

http://autismwomensnetwork.org/is-autism-speaks-a-hate-group/


We are more than burdens on our families and society.   You talk about Autistic people in such disrespectful and dehumanizing ways.   Your hateful rhetoric has real world consequences.  So much that The Autistic Self Advocacy Network has had to create an anti-filicide toolkit in the hopes of preventing more of our parents and caregivers from killing us!


http://autisticadvocacy.org/anti-filicide/


When you call us burdens, and reduce us to a dollar amount, tell us that we cost society too much money for existing, there is blood on your hands, Autism Speaks.  

https://sites.google.com/site/pwddayofmourning2014/the-list


People are listening to you, and what you have done with that great responsibility is to devalue our lives and tell the rest of the world that we don’t deserve to be in it as we are.
You have the power and the resources to change the way the world sees Autistic people.  We, along with our families are asking you to take that power and make the world a better, fairer, more accessible and friendly place for Autistic people.  Stop punishing us just for existing.  We are more than an inconvenience to you.  

Autism Speaks, the time for you to shut up and listen to Autistic people is long overdue.

Why Don’t We Support Autism Speaks? by PACLA #BoycottautismSpeaks

Why Don’t We Support Autism Speaks?

by Parenting Autistic Children With Love & Acceptance

AutismSpeaks2013chart

Autism Speaks is the largest autism non profit in the United States. In 2012, they raised over $58 million (source: Autism Speaks website). Unfortunately, very little of the funds raised by Autism Speaks actually go towards helping Autistic people and their families. Only 4% of the  money raised is directed towards family services and supports! Where does the rest go? Well, 5% goes towards “administrative costs and salaries”. That’s more than is spent on actually helping Autistic people. The bulk of the funds raised by individuals for Autism Speaks go toward awareness and advertising campaigns, fundraising, and research.

http://autisticadvocacy.org/wp-content/uploads/2014/09/AutismSpeaksFlyer2014.pdf 

http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=12720#.Up9eUNk7pkR

Awareness and advertising campaigns, like the recent “Autism Speaks to Washington” summit, consistently attempt to speak for Autistic people without our input. Other “awareness” campaigns by Autism Speaks have portrayed Autistic people as burdens, as hopeless, as ruining families and marriages, as tragic and voiceless.

On their “I Am Autism” campaign:

 http://www.disabled-world.com/health/neurology/autism/autism-speaks-video.php

On their “I Want to Say” video:

http://www.autismwomensnetwork.org/article/not-good-enough-autism-speaks

On their promotional documentary “Autism Every Day”:

http://thautcast.com/drupal5/content/autism-every-day-teaches-people-nonverbal-means-no-feelings

Their most recent “Autism Speaks to Washington” campaign called for a national policy on autism without a single Autistic voice at the table. Autism Speaks co-founder, Suzanne Wright wrote of autism as a “crisis”. She wrote that our children were “missing” (ignoring Autistic adults), she wrote that our families were “not living”. We were merely “existing”. She used words like “despair” and “fear” to describe Autistic people and our families. In response to this, Autistic people, parents and allies had this to say:

http://thisisautismflashblog.blogspot.com/

We are opposed to organizations that would attempt to speak for Autistic people without their input.  We are opposed to organizations that use fear-mongering to raise money at the expense of the dignity and personhood of Autistic people. We are opposed to organizations that ask families and individuals to raise money for their salaries, take money out of our communities and in turn give little back for appropriate supports and services. We are opposed to organizations that prioritize an unwanted and unneeded “cure” over acceptance, love, and respect for Autistic neurology.

For these and many other reasons, we at PACLA do not support Autism Speaks.

We support Autistic people. 

 We support acceptance.

For more on why Autism Speaks is NOT an organization that helps Autistic people, you can follow these links:

http://www.autistichoya.com/search/label/Autism%20Speaks

http://yesthattoo.blogspot.com/search/label/Problem%20with%20Autism%20Speaks

http://amazingadventuresautism.blogspot.com.au/2013/04/what-does-awareness-get-us.html

http://timetolisten.blogspot.com/search?q=autism+speaks

https://sites.google.com/site/notautismspeaks/home

http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

https://www.facebook.com/autisticpartygiraffe/

This is just a small sample of the problems that the Autistic community has with Autism Speaks. They do not help Autistic people. They actively do harm to our community. They tell us that it’s “time to listen” while refusing to hear Autistic people. Until Autism Speaks can begin to undo the damage they have caused and make genuine efforts to work collaboratively with Autistic people, we can not and will not support them.

This was originally published at autloveaccept.wordpress.com