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Why Boycott Autism Speaks?

Why do we boycott?

This is a Civil Rights Movement.

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

We seek for Autistic Voices to lead.

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

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

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

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

We seek Acceptance, Inclusion, and Respect.

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

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

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

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

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

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

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

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

Autism Women’s Network

BAS Statement about Autism Speaks Board Appointments

 

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

BAS statement re: ASA

Original Post here.

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

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

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

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

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

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

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

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

Boycott Autism Speaks officially supports these organizations:

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

#BoycottAutismSpeaks

Testimonial about JRC–which Autism Speaks Supports

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

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

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

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

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

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

Anonymous Testimonial

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

Testimonial from Paula Durbin Westby

http://autismacceptanceday.blogspot.com/2013/12/boycottautismspeaks-autism-acceptance.html

#BoycottAutismSpeaks-Autism Acceptance Day Support

 
http://boycottautismspeaks.com/testimonials.html

“Many people have a negative reaction to criticism of Autism Speaks.  These are the testimonials of people that have been hurt by the work that Autism Speaks does in the name of good.  Reading personal accounts of people that live with the repercussions of the negativity, fear mongering, and hate will help you to gain an understanding of this movement.” 

This is my testimonial, which goes back to June 2006. 

Autism Acceptance Day got started to counter negative rhetoric in April. Autism “Awareness” at that time (2011) was largely geared toward “doom and gloom” about autism. Much of that negativity was put out by Autism Speaks, the largest fundraising organization having to do with autism. Autism Acceptance Day will be in its 4th year in 2014, and many organizations and people have signed on to the concept. 

My personal story about not liking Autism Speaks starts in June 2006. That summer, I was indexing a book and came across the term “PDD-NOS.” I did not know what the term meant, so looked it up. The first site I checked was a wikipedia site that simply stated that PDD-NOS meant “pervasive developmental disorder- not otherwise specified.” OK, I had my definition, and that was all I needed for my work. I was about to close the link when I saw another hyperlink that looked intriguing. I clicked on that and read a definition of autism. Because the definition described me exactly, and because I did not understand what the BIG DEAL was, since it was… just a description of what I was like (!), I started reading a bit more, mostly trying to find out why people thought a person like me was so problematic.

I immediately (of course) found Autism Speaks. At that time they had a “In Their Own Words” column, which was partly by Autistics and partly by parents and others. The article I saw that first day was by a young man, aged 17 I think, who decried his autism (Asperger’s) and, although he said a few positive things about himself, spent a lot of time regretting his characteristics (which he may have called “symptoms”).

One of the things he regretted was his use of “big words.” He called his Asperger’s “nefarious” and then commented that using words like “nefarious” was part of what was problematic about himself.

That comment stopped me in my tracks. I will come back to why, but first I will say that I immediately started looking at the rest of the Autism Speaks site and was dismayed to see that it was mostly negative, dire statistics, not only about “classic autism,” but about “high-functioning autism.” Yes, I just used a functioning label, but this was how I was looking at it on the VERY FIRST DAY I had ever done any reading about autism. So… Autism Speaks did not seem to “like” people like me, or like the young man with the “nefarious Asperger’s.” I found some other entries by Autistic people, mostly about how hard it was to be Autistic, which is OK as there certainly are difficulties or autism would not be a disability, but I found nothing much in the way of positive self-assessments. I would think some good could be posted with the “bad.” Most of the articles were by parents and others, not by Autistics. I went back to the first article and re-read it. The young man seemed likeable enough, and like maybe someone I would have gravitated toward when I was a teen. He said that having a big CD collection and talking about his CDs was part of his “disorder.” I thought he seemed like a teenager talking about his “record collection” (we had *records* when I was a teen, and we all talked about them, and not just me, but all my friends). What was Autism Speaks doing, labeling really rather typical, even if a bit more intense, teenage characteristics and interests as “disordered?”

I also was quite alarmed by the idea that using “big words” was a problem. I am hyperlexic, which means I started reading without being taught, at a very young age. I was reading on a “gifted third grade level” when I was four, according to one assessment I had done as an adult. Words, words, words, words. I am now an indexer. I read books for money. I write indexes. Words! Books! Words! I had been teased as a child and teen for “using big words.” Other kids thought I was doing it to “impress” people, including the teacher. No, those were just the words that came to mind. In about 8th grade, I started doing a thing – thinking of a “big word,” then cycling through a list of synonyms in my mind so that I could find a “littler word” to substitute so that I would not get teased. I did this so often that it became second nature and I did it almost without thinking, and was still doing it sometimes, and had done so for decades.

Then my child was born. All the baby and young child picture books used “controlled vocabulary,” yet I knew from reading (and I read a lot, with my indexing!) that people had not always used controlled vocabularies, and that children in some earlier eras and situations had quite large vocabularies, and that children nowadays were at least as innately capable of learning many words as they had been in the past. I also noticed that I was doing the same thing with my child, cycling through and finding little teeny words. And then…. I realized what I was doing. I was keeping the richness and variety of my native (word-based native) language from my own child. I did not want to do that. I had to force myself to use ALL THE WORDS. It was hard at first. What I did with him was to use whatever my “big word” was that came to mind and then to provide a definition, so that sentences like “That just exacerbated the situation, which means that made it really hard!” were a standard sentence construction in our home. I made this change when my child was about a year old.

Back to 2006. I was being confronted with writings by people like me, on a site that was about curing a preventing autism, who did not like the way they were because someone had told them it was part of a “disorder” and not good! I stopped liking Autism Speaks on that same day. “Speaks” seemed sort of odd for an organization that was complaining about using words! I had worked too hard in this life to like myself for who I am (something I think every human being has a basic right to do) to “go back.” My language use was my business, not anyone else’s “symptom.”

I went back to the original page where I had found the Autism Speaks link. I found another link to “Autistic Rights Movement” on wikipedia (somewhat changed from 2006).http://en.wikipedia.org/wiki/Autism_rights_movement At that point I found a home, for a lot of things about me, and from that point forward, I have always been ACCEPTING OF AUTISM. ALL autism, by the way, not just “high functioning,” whatever that means. (It usually means “we are separating you out- you don’t get to “talk” about autism— but we do, even though we are evenfurther away from being Autistic than you are!”) I found Autism Network International and autistics.org and some online groups, and that was the start of me moving even further away from teasing, being told not to use “big words,” and all that.

Currently the Autism Speaks “In Their Own Words” is archived. The last page ends in 2010, although what I read was posted in 2006. Maybe they have retired all the posts before 2010. The link (linked through donotlink.com, is here: http:/blog.autismspeaks.org/category/in-their-own-words/page/18/

Also currently, Autism Speaks has started a “new” blog, called “In Our Own Words,” which is going to be by Autistic people (and which will be edited by Autism Speaks for “political correctness,” which any organization would do, of course). The other “In Their Own Words” had this to say about their selection process:  If you have a story you wish to share about your personal experience with autism, please send it to <>. Autism Speaks reserves the right to edit contributions for space, style and contentI noted the content caveat (which means warning….) in 2006. It was a red flag for me, considering the kinds of things that were being posted- “devastating disorder” was the phrase of the day back then. The first article is someone who helped a mom feel more comfortable about her child’s autism. That is a good thing, but Autistics do that all the time, and Autism Speaks has take way too much in terms of money, time, energy, lost opportunities, and the rest, from Autistic people and those who care about them.

So, in a way, Autism Speaks has ended up being the impetus for Autism Acceptance Day. A$ has even tried to co-opt the words “autism acceptance” (which phrase has been around since before Autism Acceptance Day), but without much success and with very little convincing that they are about “acceptance.” 

Please add your story to  Boycott Autism Speaks testimonial page, and join the boycott! Add your name to the petition (below) and contact Autism Speaks’ sponsors. We are making a difference with the sponsors, already. Several of them have said they will consider our position. Even a bit of education can make a difference.

http://boycottautismspeaks.com/testimonials.html 

Petition:

https://www.change.org/petitions/corporate-partners-supporters-of-autism-speaks-terminate-your-financial-support-of-autism-speaks

“Twitter Bomb” December 9, 2013. Use the hashtag#BoycottAutismSpeaks and @boycott_AS

Why I don’t Support Autism Speaks

By Sandy Kinnamon

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

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

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

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

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

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

 

Sandy

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