Why I #BoycottAutismSpeaks @project1enigma

Written by:Project Enigma

Originally posted HERE
There’s currently an ongoing campaign on boycotting the infamous organization Autism Speaks (not linking by purpose).

The boycott is organized in part through the #BoycottAutismSpeaks Twitter hash tag, as well as a flash blog running yesterday and today (Jul 17, 2015). I understand Flash Blogging as specific posts from people in their own blogs, as well as other submissions, being collected on the Flash Blog site maintained by Boycott Autism Speaks organizers.

You‘ll find many posts there already explaining on the facts about Autism Speaks, so I‘ll not repeat what has been said there. Just check the other articles for that. Instead I‘ll try a personal take.

What helped me for discovering being autistic and how so was seeing diverse voices of actually autistic people, sharing information from an autistic perspective, as well as sharing personal experiences, views and so on. I learned that being autistic is a spectrum. That it is a disability, and at the same time it’s a neurological variant that „just is“, that has no different value from other neurological variants, including being neurotypical. On top, part of the disability that can be involved in being autistic is caused not just by per se impairments inherent by how someone is autistic. Rather it’s often a mismatch between neurotypical norms and expectations and autistic people and our needs. This can involve a need to meet us in-between in communication style, offering supports for the sensory needs autistic people often have, often some kinds of Augmentative and Alternative Communication (AAC), from informal (such as fully accepting social media, email etc. as valid road of communication rather than valuing face-to-face or phoning over written) to formal (which I can‘t explain in detail, as I don‘t use them; see this video by Amethyst Schaber/Ask an Autistic including more links in the description section) and many more such mismatches or sometimes unmatched needs for adjustments.

What helped me is that I saw being autistic being displayed in an accepting manner, not as something akin to the end of the world.

Now, Autism Speaks propagates just the latter. (Please see the Flash Blog for factual details.) They portrait having an autistic child as a catastrophy happening to neurotypical parents (or grandparents, as the founders are). They fund research on eliminating autism more than they fund supports for autistic people and families or other people supporting them. They rather have research on prevention and elimination of autism rather than genuine research on how to improve life of autistics.

They also use „functioning labels“, which are problematic and inappropriate on their own, in political ways against autistic people. Either you‘re too „high functioning“ in their view to be autistic „enough“ to speak about autistic issues, or you‘re too „low functioning“ and thus are denied agency, so they speak over you instead of with you, or just listening.

They currently include no autistic people in decision making structures at all. The only autistic who was involved resigned. (Again, see links in other Flash Blog entries for evidence.)

And no, Autism just cannot speak. Autistic people can, and should be listened to rather than talked over.

So this is a short, more personal rather than factual, account on why I myself boycott Autism Speaks and why I ask others to do so too. If you have money to give and want to support autistic people, surely don‘t give to Autism Speaks. You might rather consider autistic-led organizations like the Autistic Self Advocacy Network (ASAN) and other similarly orgs by and for autistics.

This post may be shared and copied verbatim or edited. In case of editing, please make clear what is original and what is by you. And please, of course, don‘t misrepresent authorship. A link to the original entry, this blog, or my Twitter handle (@project1enigma) is okay to represent authorship.

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
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Autistic and a message of love #BoycottAutismSpeaks

By Matthew Pountney.

Hi everyone. I don’t often make videos but this is an issue that is very close to my heart on so many levels. This is a message to the Autism and Neurodivergant community, to its fellow comrades to its supporters and even to it critics. I want to start off by giving a huge thank you! You have all touched the bottom of my heart and soul. You have all given me so much inspiration to want to advocate for myself and for my loved ones. After becoming an advocate last year they have been so many people to have guided me on this journey to become not only to help myself but to help others. They are a few autistic’s who I want to give a special shoot out and heads up to who have helped me on this journey

Adam- you and I have come together to create something very special. Despite our differences, in philisical and political belives we shared our similarities and have made our little group. Light it up Rainbow. It’s a small group but it’s our group. Our sign that we can fight the cure culture and spread the message of love and hope and neurodiversity. I thank you for this.
Emma- You are a fearious campaigner against the use of MMS and other harmful treatments given to autistic’s and have invited me to your wonderful group where everyone is accepted and anyone can give and offer advice. I think it’s amazing that you yourself being a busy parent and campaigner and still have the time to offer me and many others a whole rang of advice on so many topics. In around a months time of knowing you, you have felt like an auntie to me. And I really hope that one day I can come along to one of the groups meet ups.
Amythests- You don’t know me at all, and you’ll most likely never see this but I have watched your “Ask an autistic” series on Youtube and read some of your blogs and I just want to say how refreshing it is to hear a young intelligent woman speak so openly, so calming and passionate about autistics. In the darkest of times for me listening to you is like listening to a best friend. You have been a lifeline. True be told you have been the catalyst- if that’s the right word. You started that off for me heading down this wonderful rode of advocacy. I owe a lot to you.
Kay- My good Asipe friend, Kay. Ever since we were children we have been so close like brother and sister and that bond to this day is still there. Just for accepting me and being so awesome. You make me as a person. Make me feel wanted. You are brilliant and never ever change.
Laura- What can I say? You are my rock. My soul mate and my lover. I can be the most difficult person in the world at the best of times and I don’t say this often enough but I love you. I love you so so much. I love your imagination. Your skills as a writer, Your interest in history, the fact that your better at gaming than I am. You mean so much to me!

So Autism speaks, as you can see. I could have spoken about how much I hate you as an orginisation. But I wanted to show that autistics like myself are callable of love, compassion and humanity. I’m afraid I can’t say the same things about you. You use fear and ignorance to make our lives harder. This is why I boycott!

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

Crusade Against – Why I #BoycottAutismSpeaks

By Kelly Green – Autism HWY

Originally published HERE

Living in a constantly upgrading world, all families want to feel they are “covered.” Having all of our bases covered is what we are taught to do, on and off the fields of our lives. Covered by insurances, covered by the governments of our nations, the states and communities we live in, by the health and educational systems and hopefully by our families and friends. Our safety has become synonymous with being ”covered.” The healthcare system revolves around “covering us.” Police officers and soldiers ‘cover’ each other in the most dangerous situations. We have all hopefully had people help us cover a tab, or two! Artists cover other Artist’s work, books are designed to be judged by their covers as we adamantly deny doing that! An entire industry of politicians, celebrities and organizations seek media coverage for prosperity and power. So, with everyone seeking coverage and everyone else seeking to cover us, how can we trust all of this rampant coverage? What is good coverage and what is BAD COVERAGE?

In 2005 AUTISM SPEAKS decided on the latter. Bad coverage. Sure, in their minds they weredoing something noble by covering people they saw as needing coverage. Yet, did they look beyond their new sliver of Autism IQ, their erroneous belief system formulated by parents and grandparents with no innerstandings of Autism? No. Did they consider the existing population of Autistic adults living and raising their own Autistic children in the world? No. Did they mindfully consider what kind of coverage should be given to Autistic people and their families for health and well being? No. They focused on the family members of Autistics that misunderstand and often despise Autism, choosing to live in varied states of confusion, pain and distress.  Autism Speaks chose to listen to people that prefer their loved one be as un-Autistic as possible. They did not consider AUTISM as a natural human condition or the people understanding, accepting and thriving on this incredible spectrum. They immediately disassociated themselves from Autistic people by demonizing Autism as an enemy to be crusaded against. They campaigned AGAINST AUTISTIC PEOPLE in endless media blizzards. If people were not “Aware” of Autism, they now became aware that it was all “wrong” according to the Wright’s. Autism Speaks claimed to speak for a population of people they had never met. Let alone, understood, respected and engaged with. How arrogant of them to decide that Autism needs to be “Spoken for” and ”Crusaded against.”

A 10 yr. media campaign exploiting the difficulties Autistic people and their families endure when not in alignment with Autism is NOT awareness or respectful, loving ‘coverage’.  It’s HATE and fear mongering. It’s misinformation spun negatively to the population, used to gain footholds and dollars. It’s using misinformation and power to decide what coverage others need and will get. I saw many people unhappy when the U.S. government was deciding how citizens would be covered through the new health-care/insurance system, this is no different! Allowing 41 states to COVER outdated harmful methods of ABA therapy is frightening to many Autistic people. Reforming insurance coverage for Autistic children without the wisdom of Autistic elders is negligent at best. Why would a company “speaking for” a population crying out for inclusion, willfully exclude them? Since we receive no answers we must assume it’s the same reason they crusade against Autism. Misunderstanding and- HATE.

This is why there is a movement boycotting Autism Speaks.

HATE and misunderstanding  is what Autistic people and their allies “Crusade against.”  We crusade against a company and it’s supporters unwilling to update their idea of COVERAGE. Unwilling to learn from the scores of Autistic voices speaking out loudly with amazing insights for us ALL. Unwilling to acknowledge that AUTISM is a life-long condition we must embrace, respect and innerstand. We crusade against non-Autistic voices that COVER Autistic voices. We ask that professionals work with Autistic adults not against them by covering us with (what we now know) are harmful therapies. Therapies created by non-Autistic people with compliance and indiscrimination from non-Autistic peers as primary goals. Therapies that have hurt an entire generation of Autistic people. Time to re-examine the coverage Autistic people can use, not what non-Autistic people think they need. Time to re-examine the therapies given to Autistic people without their advice. Time to stop deciding it is okay to speak for people that are already speaking. It is time to listen to the voice of our Autistic elders in every instance, to enhance the futures of our Autistic generations to come.

People Magazine it would have been nice if you had uncovered the truth about heroes among us in 2015. Hear the truth that the Wright’s have been doing Autism wrong for 10 yrs. and counting…

crusading against hate: Why I #boycottAutismSpeaks flashblog july 16-17 2015 email submissions to boycottautismspeaksinfo@gmail.com whyiboycottautismspeaks@wordpress.com on a bright yellow back ground

#DescribeAutism by LetsSinTonight #boycottAutismSpeaks

Written by:
Originally posted HERE

#DescribeAutism

Autism, for me, is…

The euphoria of listening to the right songs,

The extreme anxiety of facing public bathrooms,

The frustration of struggling through social situations,

The headaches from using Bath and Body Works,

The excitement of seeing my favorite bands perform,

The stress of allism passing,

The fun of cuddling my stuffed animals,

The depression of not feeling accepted,

The feeling of playing with my hair,

And everything that I am, whether good or bad.

Autism, for me, was…

Repeating my favorite 7-11 commercial,

Watching The Lion King over and over again,

Thumb sucking with the tags of my favorite plushes wrapped on,

Watching Barney obsessively,

Having meltdowns in public bathrooms,

Crying if anyone else played with my prized ATV toy,

Moving my hair out of my face while I played,

Struggling with elementary school homework,

Refusing your offer to beat up my classmates,

And everything that I was, whether good or bad.

These do not describe autism…

Burden on our families,

A global health crisis,

The end of marriages,

A cause for alarm,

A hopeless diagnosis,

Something to “battle”,

A reason for us to be pitied,

“As if your child went missing”,

A Tragedy,

Or a subject better understood by allistic parents or grandparents.

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

Open Letter To the Daughter of Bob & Suzanne Wright #boycottautismspeaks

Written by: Michelle of  Life with Quirky Boys

The original can be found HERE

Dear Katie, daughter of Autism Speaks co-founders Bob and Suzanne Wright,

 

I have two young sons who are both autistic. I’m actually autistic myself, but I’m writing to you as the fellow mom of an autistic child.

 

When my oldest son was little, there was a behavior he exhibited that worried me. It continued as he grew older and the thought that he would never overcome it scared me to death.

 

In trying to get therapists to understand both my distress and the urgency of his need for help in this area, I would comment that I was afraid he would still be doing this in college and, because of that, wouldn’t be able to live with a roommate. He was usually not in earshot or, if he was, seemed not to be paying attention to the conversation. It never occurred to me that he heard, let alone understood, what I was saying. It was before I censored my words in his presence.

 

Not that I lie to him or keep things from him, just that I try not to burden him with my own fears. Shielding him from my fears is part of my job as a parent. I’m the grown up; I need to deal with my own issues. I believe it’s good for him to see that I struggle with some of the same things he struggles with, but I can do that without burdening him with problems outside his realm.

 

Not long ago, I heard him repeat my exact words to a therapist; relating them as a fear of his own. He said he was afraid he wouldn’t be able to go to college and have a roommate because he would never be able to overcome this obstacle. This time he was the one who didn’t realize I was listening. It had been well over a year since I had spoken them myself, but the words still hung around him like a noose. My words coming from his mouth ripped my heart in two. They had affected him in a way I never intended. Or anticipated. They had increased his anxiety and chipped away at his self-esteem, essentially making it more difficult to overcome his challenge when it’s my job to make it easier. I would never hurt him, yet here was proof that I had done just that.

 

There was a beautiful post over at A Diary of a Mom this week called A Love Letter. It’s about the damage done to an autistic person when he, in this case, is subjected to poor treatment by members of his extended family. Treatment in the form of words suggesting that he is less than valuable as a person. The post includes a moving letter by Morénike to the child. I was particularly struck by the editorial note from Jess at the end: “The overwhelming consensus from my adult Autistic friends was this: It is a parent’s responsibility to protect our children from people like this until (if ever) they’re ready to accept them. There is far, far more damage done to a child’s psyche from those who refuse to understand than could ever be caused by a lack of contact with the same.”

 

I’d like to add that good intentions of the person making the comments don’t lessen the pain for the autistic person. Even if Uncle Joe is trying to help or understand, it’s the parent’s responsibility to step in and stop it, not to defend Uncle Joe’s intentions. That’s a hard lesson to learn, even for parents who are autistic themselves.

 

It was hard for me to learn and I will forever regret that I learned it at the expense of my child.

 

Autism Speaks hurts autistic people with its rhetoric that frames them as less than human. Much of that rhetoric comes to the public through the voice of your mother, your son’s grandmother, Suzanne Wright.

 

When Grandma Suzanne steps up to the microphone and claims that autistic people are essentially missing from their own minds and bodies, it hurts autistic people.

 

When Grandma Suzanne tells the world that the existence of autistic people prevents their families from living, it hurts autistic people.

 

When Grandma Suzanne tells us that autistic children are breaking their parents, it hurts autistic people.

 

Those autistic people she’s hurting include her grandson; your son. She is saying that your son’s existence keeps you from living your life. Even if you are not telling him directly that he has broken you, his grandmother is saying exactly that.

 

You may choose not to see it, but your parents are hurting your son. If you choose to stand with them, you’re hurting him, too. I promise he hears you and he will remember, whether he speaks it or not.

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

#BoycottAutismSpeaks by Midorrian

By Midorrian

Originally published HERE

It’s been a long journey since I first discovered my son was autistic. Technically, he was only just diagnosed this year, but if you know anything about autism, you could see it in my son. Naturally, I want the best for him, so I did a lot of research. I assumed I could trust the biggest name in Autism, Autism Speaks. I was so very wrong.

Only 4% actually goes to help autistic people (Autism Speaks 990 Non-Profit Tax Exemption Form, 201). That means that if you donate $100, only $4 goes to the people who need it. This is LESS than they spend on their own salaries! According to charitynavigator.com(which just bumped them from a one star rating [out of four] up to a two), Autism Speaks actually overspent in 2012 – by $5,000,000. That’s right, five MILLION dollars.

Sadly, that’s not the worst of it, nor is it close. I further learned that Autism Speaks is the only organization that does not have anyone it claims to represent in any prominent position. The one person they did have quit over their practices (http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html)

This did nothing to alter the way Autism Speaks is run. This year, autistics took to social media in an attempt to be heard by the very organization that claims “It’s time to listen.” Autism Speaks chose to silence them. They deleted not just every negative review, but the review system altogether. (screenshots provided here: http://franklludwig.com/autismspeaks.html and people posting screenshots of their reviews and discussing it can be found here:https://www.facebook.com/groups/adultswithaspergerssyndrome/permalink/10155609240830094) They deleted every negative comment and blocked many of the posters. When autistics took over the Twitter hashtag  (#AutismSpeaks10 and also have used and are using #BoycottAutismSpeaks and #ActuallyAutistic ) for their ten-year anniversary, users there were silenced as well. MTV briefly covered the story, then quickly yanked it.http://raisingrebelsouls.blogspot.com/2015/03/why-mtv-stood-with-autismspeaks10.html

Now, about those things that caused the only autistic person to serve a major position to resign. One of those things was the horrible, fear-inducing ads that came out. Here is a transcript from one of them, comparing autistics to being kidnapped, dying of a natural disaster, and having a fatal disease: http://autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-autism-ad-transcript/ and the actual video:https://www.youtube.com/watch?v=8mycxSJ3-_Q  . In one of its most prominent fundraising videos, an Autism Speaks executive stated that she had considered placing her child in the car and driving off the George Washington Bridge, going on to say that she did not do so only because she had a normal child as well. She said this with her autistic daughter RIGHT THERE. Here’s the video. The Autism Speaks executive is roughly 6min in.https://www.youtube.com/watch?v=O0vCz2KWMM0

I saved the worst for last, especially since I need to preclude it with a TRIGGER WARNING. Autism Speaks supports the torture of autistic people, including: they were slapped, forced inhalation of ammonia, food deprivation, sleep deprivation, prolonged restraint, deep-muscle pinches intended to inflict maximum pain, long-term seclusion, and even death. http://www.autistichoya.com/2013/11/an-unholy-alliance-autism-speaks-and.html Investigations have been done by the United Nations (page 84)http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session22/A-HRC-22-53-Add4_EFS.pdf , The Department of Justice, http://www.justice.gov/crt/speeches/perez_disability_conf.php and the FDA http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2012/ucm331291.htm as well as Fox News *TRIGGER WARNING, video and epilepsy* https://www.youtube.com/watch?v=aAj9W0ntUMI (for those of you who are anti-Fox News, here is a liberal site as well: http://www.motherjones.com/politics/2007/08/school-shock) and ABC news (TRIGGER WARNING, pictures)http://abcnews.go.com/images/Nightline/HT_US_Report_4_30_10_100630.pdf . Here is a letter from someone detailing what it was like to be there (again, TRIGGER WARNING)http://www.autistichoya.com/2013/01/judge-rotenberg-center-survivors-letter.html

While support, awareness, and acceptance are great for people with autism, supporting Autism Speaks is not. I strongly urge you to consider another charity to support. If you wish to help take action, please contact the businesses still donating to Autism $peaks.https://www.autismspeaks.org/partners Thank you for your time and reading this far! ^^ v

 

Adventures in Zen: Buddhist reasons to #BoycottAutismSpeaks

Written By: Vlad Drăculea

Originally posted HERE

Ableism has been engrained in our society for so long that even many of us Disabled people have been unable to escape internalizing ableist attitudes at least at some time during our lives. Certainly this is true among many people with acquired disabilities: having once been abled, it can be very hard to learn to accept the new reality of disability, and this can result in plummeting self esteem if the ableist attitudes are not faced and overcome soon after the person has become Disabled. And for those of us born to disability, internalized ablism is something that we have been taught from a very early age, whether by family, school mates, or teachers and other authority figures. And as such it can be so deeply entrenched that some of us actually believe ourselves to be “less than”, of lesser value than an abled person despite the fact that disability is a fact of life for most people at some time in their lives.

And the fallout from ableism, whether held by (temporarily) abled people or the internalized kind I have suffered from nearly all my life till recently is manifold in everything from poor education and lack of work opportunities for Disabled people to the secondary depression and anxiety that frequently affect Disabled people who are isolated or have little emotional support for learning to accept their impairments. It can result even in suicide, particularly among people with acquired disabilities. And for some of us, such internalized ableism can result in being unable to speak out against the injustices done to us, or even result in us agreeing with our abusers that we “don’t deserve” to be treated like the human beings that we are.
Ableism is a societal delusion like unto racism, sexism, and other forms of bigotry and oppression. It is a form of hate and of intolerance, and is at the root of such crimes against humanity as those regularly committed at the Judge Rotenberg Center or the atrocity that was the lot of The Men of Atalissa. And as with other forms of bigotry, ableism costs our society in economic terms as well as in our overall health, especially in the United States where healthcare is not a right.
Ten years ago, into this atmosphere of general and casual ableism stepped Autism Speaks (sometimes hereafter referred to as “A$” for brevity’s sake) with its message of fear and “epidemic”, and the promise of finding a cure for the “terrible illness” that they claimed autism to be. Already there had been a few organizations whose aim was to eliminate autism by any means possible, but none had had the sheer economic power and access to media that Bob and Suzanne Wright had with their millions of personal wealth and Bob’s position at GE and NBC. When Autism Speaks began launching their annual fundraising walks, it was as if all the air — not to mention money — got sucked out of the proverbial room: other organizations whose mission was more accepting of autism and Autistics began to see a sharp decline in revenue as parents unwilling to accept the Autistic children they had and desperate to “fix” them soaked up A$’s message of validation for their unloving attitudes toward their neurodivergent kids.
Perhaps many of these parents could never have been persuaded to change their intolerant and unaccepting attitudes, to learn to accept their children as they were. But at least some of them and perhaps many more over time, might have been open to changing their ableist attitudes, had Autism Speaks been willing to learn from actually Autistic people and have Autistics central to the running of their organization. Alas, they chose to use their economic and media power to perpetuate and reinforce hateful attitudes toward and fear of autism, and in doing so, they have created an atmosphere of anti-Autisticism — the form of ableism specific to the bigotry against Autistics. Read More HERE

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