People Magazine’s “Crusading Against Autism” Article: The Same Archaic, Depressingly Consistent Rhetoric We Have Come to Expect From Autism Speaks – #BoycottAutismSpeaks

By rfreed

Let’s be honest; is anyone surprised at this article?

I mean, yes, it wasn’t expected, but was the content at all surprising to anyone who has autism or is one of our allies?

Bob & Suzanne Wright have, both personally and through their organization, pushed a narrative that posits a view of autism as some sort of debilitating, dehumanizing disease that not only destroys the individual, but also their family. We have witnessed this brutal message time and time again over the past 10 years; even when someone with autism joined one of their boards, the message stayed the same.

For example, Suzanne Wright wrote blog post a couple years ago (http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action) defining autism as not a neurological difference, but some sort of cold-blooded enemy after our nation’s children in some sort of war.

Turns out she not only ignored Autistic professionals, advocates and others not connected with her organization, but board members as well (as the resignation of John Elder Robison showed later that year). The ignorant, disturbingly out-of-touch message sparked a lot of anger and rage among those of us with autism – but two years later, it’s all but forgotten, especially by People Magazine.

Apparently, being a polarizing, dehumanizing force that doesn’t really help people with autism but claims to do so by trying to ‘rescue’ children seems to be the norm for Autism Speaks.

The issues brought up in both articles (lack of proper services, waiting lists, accessibility issues at schools and workplaces) are not caused by autism; they are caused by our society, which has been influenced by an organization bent on developing a cure so its founders can have a ‘normal’ grandchild.

Too harsh, too soon?

Therapies, treatments, specialists, insurance and school services are not under the control of autism – they are under the control of school districts, governments, private corporations and companies, and professional organizations. Aim your angst, sadness and despair at them, not at autism.

One of the more prominent fears described in both articles is a false future where apparently all autistic children will grow up and be non-functioning adults –  which if People magazine, Bob & Suzanne Wright took five minutes to look around, will find to absolutely not be the case. Yes, there will be some autistics who may need more accommodations than others; however, with the right technology and supports, all will be able to lead an individualized, quality life of their own choosing. But by pushing a narrative that causes many autistics to believe that something is seriously WRONG with them, Autism Speaks tears down and artificially limits any goals, ambitions and dreams they may hold for themselves.

How do we tell them that they’re NOT broken, and they can achieve their dreams? How do we fix the damage caused on a national level by Autism Speaks?

Most – if not all – questions asked by Bob & Suzanne should be discussed with Autistics. After all, we have the best perspective, experience and knowledge when it comes to questions about treatments and what works – and what doesn’t. Yet we’re continually ignored, and limited to playing a token role for an organization that has worked consistently to harm our path to independent living and a successful life.

Unfortunately, despite our constant and very loud voices collectively speaking about this harm over the past ten years, it hasn’t stopped Suzanne nor her husband from sending a clear message through Autism Speaks – a message we have all heard very loud and very clear.

Well, Bob, Suzanne, and everyone at Autism Speaks – we have a very profound, clear message for you:

Nothing About Us Without Us.

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

 

 

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The Hypocrisy of Autism Speaks – #BoycottAutismSpeaks Fashblog

By Alex Woody

The Hypocrisy of Autism Speaks

In any other case, if you had told me that there was an organization out there that helps people with Autism overcome their daily struggles and acts as an advocate for them, I’d be thrilled. A lot of my own struggles were worked out when others wanted to help, and what with the stigma that others put on us every day, it would be great to have a group of informed, powerful people who could vouch for us. Unfortunately, the people within Autism Speaks are anything but informed.

In spite of claiming that they want to help us be heard and give us a voice, they do not speak of desires for us to be looked at as equals or to be given the same chance to succeed as others. They speak of Autism as if it were a pox or a plague, some contagious disease that has the potential to destroy families and even communities. Such a message is not only shortsighted and bigoted, but it is also downright destructive given the amount of power and influence this organization has.

One of the worst parts, if you ask me, is that whenever they discuss Autism, they act as though it is the most present thing in the subject’s life, and this encourages people to start thinking that it is the case for everyone with Autism. However, given the amount of people with Autism who are able to live just as well as anyone else, this kind of thinking does far more harm than good. I don’t want people to think of me as “Alex, the guy with Autism”, or even as “Alex, the guy with Asperger’s Syndrome”. I want people to think of me as “Alex, the guy with the friendly, laid-back attitude”, or as “Alex, the guy who makes the funny videos on the internet”. To me, and to anyone else who knows their worth about Autism, it is merely a condition that exists. It does not make up who we are, and should not change how we are viewed.

Furthermore, the idea of Autism being the most prevalent thing in our lives is also harmful in the sense of how others think we should be “helped”. When my parents first found out about my Asperger’s Syndrome, they did learn that I would need help overcoming things like social awkwardness and lack of focus. But I wasn’t helped by people who wanted to “cure” me or “fix” me. I was helped by people who knew that I would never fully be rid of Autism, but that wasn’t a bad thing. They knew that the best course of action would be to help me learn how to manage the social awkwardness and lack of focus and allow me the freedom to enjoy my life seeing myself as just another kid at school. Autism Speaks would’ve only seen me as their lab rat. Rather than trying to help me with my actual problems, they would’ve tried to change who I was entirely, not knowing that doing so is not only impossible, but would’ve been getting rid of the parts of me that I like. It is true that Asperger’s Syndrome has caused me to get caught up in my own thoughts many times, but it has enabled me to think deeply about things I wasn’t sure about, and to create ideas for the videos I make and put online. I cannot imagine for a second that Autism Speaks would have cared about that if I had told them.

As dangerous as these consequences are, however, there is one danger that outweighs them all: Autism Speaks is not careful about whom it trusts. A month or two ago, I found out about one such organization it supports and actually featured at one of their resource fairs: the Judge Rotenberg Center. The JRC is essentially a reform camp with the methods of a concentration camp: they take away any medication that its patients are on, they see stimming as an action worthy of punishment, and their punishments, which include isolating someone from everyone else and even holding down someone while electrically shocking them, are absolutely draconian. When I heard about this organization, I was so shocked and disturbed that to this day, I have only told a few other people about it. And this is the kind of thing that an organization that dares call itself Autism Speaks sees as a good thing.

Autism Speaks may call itself a group of heroes, but all they really do is spread fear and bigotry. Their “crusade” is really nothing more than a witch hunt. They don’t want to help us stand up for ourselves, they only want to keep us silent and pass it off as being our voices. But make no mistake, they are not the voices that we want or need. I am not a defect, or a broken man, or a victim of anything other than the hateful message spread by Autism Speaks. I am Alex Woody, and I will not let the voice of Autism Speaks be heard over mine.

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

#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

 

And The Truth Shall Set You Free (if you choose to be free)

By Morénike Onaiwu

Originally published HERE

 

There are many people who truly believe that Autism Speaks is a benevolent organization that is working on behalf of people on autism spectrum and their loved ones. They might have received Autism Speaks’ “100 Day Kit” from their physician upon diagnosis, or maybe they came across Autism Speaks’ website while searching about autism online.

Or perhaps they saw a magazine ad, billboard, or a well-meaning friend told them about an Autism Speaks annual walk or other event. Autism Speaks is everywhere, so there are any number of ways that they could have learned about them.

Over time, some of these individuals learn the truth about Autism Speaks – that there is nothing benevolent about them.  Since its inception, Autism Speaks has blatantly refused to meaningfully include the very population is purports to serve in its decision-making or leadership and have in fact repeatedly thwarted the efforts of those attempting to reform them from within.  They promote a very dehumanizing view of autism and despite the huge amount of money they raise annually, they spend very little of their money on family services (only 4% of their annual budget).

These facts have influenced many people to withdraw their support of Autism Speaks, choosing to instead support organizations that are committed to positive change and acceptance.  Awareness that Autism Speaks is not what is appears to be is growing.  This is due in part to the numerous  organizations, Autistic advocates and parent advocates whom are working diligently to inform the public about how damaging and destructive Autism Speaks is; they have been instrumental in helping families to discover the truth and have also engaged in activism surrounding this issue.  However, although there are a number of people who are grateful to learn the truth and subsequently denounce Autism Speaks, there are also hoards of people who reject the truth.  Some deny the easily verifiable factsand choose to believe a lie despite the evidence. These people are in (deliberate) denial.

But there are others who acknowledge that there are the problems with Autism Speaks, but state that they still choose to remain affiliated with them anyway.  Often they cite the widespread “awareness” campaigns, but they also might mention how Autism Speaks has “helped my child to get in-home ABA.”

They maintain that despite all of Autism Speaks’ flaws, because they have benefitted in some way from being associated with them, they will disregard Autism Speaks’ egregious antics. Basically, they are saying, “I know they’re really bad, but since they’ve helped ME and MY family, I’m still going to support Autism Speaks.”

And to that, I say this:

That is your choice, but I believe that it’s a terrible one.

There are warlords and dictators who terrorize millions and destroy entire societies. But they are extremely generous to those in their elite inner circles; providing them with financial security, privileges, and other “in-group” perks. Do those singular acts of kindness compensate for all of the bad that they have done? Absolutely not.

As a teen, my father, who grew up under colonial rule in Africa and earned extremely high grades in school, turned down a full college scholarship offered to him by his oppressors because he would not be bought. He instead worked his butt off to get to America and put himself through college with his integrity intact.

If you can sleep at night knowing all of these things about Autism Speaks and still choosing to support them despite the many problems for your own selfish reasons, then I feel very, very sorry for you.

I am far from wealthy, but I wouldn’t take a freaking dime of Autism Speaks’ tainted blood money for any services my children need. Ever. I can look my autistic children in the eyes and know that I didn’t sell them out to a company that is trying to ensure that people like them, and like me, were never born.

I don’t judge the people who support Autism Speaks simply because they don’t know any better.  They aren’t aware of what Autism Speaks is really about and they cannot be faulted for their ignorance (I was once equally ignorant). That is different than having accurate information and making an informed choice to do the wrong thing.

But to knowingly, willingly align oneself with an entity that isorchestrating the potential destruction of an entire group of people simply because that organization shelled out a few dollars for some therapy? Heck to the no.

My dignity as a person, a parent, and as an autistic woman and that of my family has a much higher price tag than that.

Yours should be too.

Photo credit: alacat-acosta

Image description: textured gray and white square with the text: People don’t want to hear the truth because they don’t want their illusions destroyed – Friedrich Nietzsche

10 Reasons I #BoycottAutismSpeaks

By Jason Thayer

Aspie Catholic

10 Reasons I Boycott Autism Speaks

1. As a Christian, I cannot in good conscience endorse an organization that promotes hate.

2. Autism $peaks paints a negative picture of autism, treating it as a disease and an epidemic. They never consider that an autistic person has strengths, and instead focus on their weaknesses.

3. Autism $peaks has for years perpetuated the myth that autism must be cured, and has cited vaccines as the cause, despite evidence to the contrary. Only recently, with the measles outbreak in California, were they forced to reconsider and backtrack, saying that they never supported that claim.

4. While they have never endorsed the infamous MMS cure, they encourage it with their message of autism as a disease.

5. Because they have such a public face, people get the wrong idea about their organization. As a result, they donate money to the wrong people. Money that could go to organizations like Autism Self-Advocacy Network instead goes to Autism $peaks, to fund research that should never be conducted in the first place.

6. Autism $peaks only gives 4% of their income to autistic families who register with them. These families are presented in their propaganda as families in struggle with autism, never as families who support their children. In fact, we rarely see adult autistics in their propaganda.

7. Their use of blue as a “color” for autism is a gross misrepresentation. It only focuses on the boys who are diagnosed with autism. However, I know quite a few adult autistic females, and not once has the propaganda even acknowledged this fact. As far as they’re concerned, only boys are diagnosed with autism.

8. By focusing on autism as a disease, they seek to separate the person from the disorder. You cannot “cure” a person with a disorder. You can only help them cope with it, to see it as a strength. They want parents to believe that there is a “normal” child hidden within their autistic child, that needs help to come out. But you cannot separate autism from an autistic person, any more than you can separate blindness from a blind person. It is part of who they are.

9. I support the use of the “rainbow infinity symbol” of autism acceptance.  This symbol represents the infinite diversity of autistic people, the full range of how they cope with society. The rainbow colors represent the hope that one day all autistics will be understood. Autism $peaks uses a puzzle piece, a picture that has for years never painted a positive picture of autism.  It represents autism as a puzzle to be solved, and by solving they mean to one day cure autism.

autistic pride

Image Description: A rainbow infinity symbol with the words Autistic Pride above it.

10. By focusing only on children, Autism $peaks does not present the idea that autistic children may one day achieve greatness. I have not only graduated from high school, but I also have a bachelor’s degree in psychology from Nicholls State University in Thibodaux, Louisiana. This is not in spite of my autism, but because of it.

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

Promoting Acceptance and Accommodating Everyone: Why I #BoycottAutismSpeaks

By Kris Young

Originally published HERE on Rainbow Autistic

I #BoycottAutismSpeaks because they’re not accepting of Autism, and they won’t accommodate Autistic individuals’ needs, or even listen to us and what we have to say.

Autism $peaks portrays Autistics as burdens and crises.  They even say that we’re broken and missing and use the puzzle piece as a way of saying that we need to be “fixed”.  I’m not a burden or a crisis, and I’m not broken or missing.  I don’t need to be fixed.  I’m already whole.

Only 4% of Autism $peaks’ funds goes to services that help Autistic people and their families.  Much of their funds go to research, but only very little of that research money—less than 1% to be exact—goes towards helping Autistic adults.

I was appalled when People magazine had a recent article about heroes, and Bob and Suzanne Wright, the founders of Autism $peaks were featured and the headline was titled “Crusading Against Autism”.  It was a like a punch to the gut.  It’s like People is saying, “Crusading Against Kris”.  We shouldn’t crusade against Autism.  We should crusade against intolerance and hate!