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.
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.
#BoycottAutismSpeaks-Autism Acceptance Day Support
“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 content. I 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.
“Twitter Bomb” December 9, 2013. Use the hashtag#BoycottAutismSpeaks and @boycott_AS
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.
Why I’m Against Autism Speaks
By Kimberly Steiner
Why I Hate Autism Speaks
By Melissa Fields
My personal views on an organization that never helped me when i reached out to them in early 2008. I didn’t know better and felt i could turn to them. I had written a blog about my experiences as an Autistic adult early that year, to see if they would help me to find friends, because i just needed some friends who would get me, and accept me, friends that i could hang out with and do things with, and i needed support in my endeavor to try to move from the neighborhood i live in, because i am, to this very day, being bullied by several employees of a few of the nearby auto businesses that are to the East and across from my house.. Litle did i know back then, the scope of Autism Speaks’ negative, hateful, and very hurtful attitudes towards those of us who are Autistic. Back in 2008, i was still trying to better understand myself, and just wanted to try to find support. They published my blog, alright, but they never reached out to me to give me the help i was asking for. Then i came to Facebook and found all of my awesome Autistic friends, and parents of Autistic children who have all accepted me. Now i do have friends via Facebook who get me. But i still have very few local friends. And i am so very lonely because of that. And from Autism Speaks, i never got a darn thing. And then i began to read about them and see their videos which portray Autism and Autistic kids in a shockingly horrific light….not just negative, but it’s like they really have a deep-seated hate for us……not only do they fund harmful research and biomedical and therapy/behavioral treatments that are also harmful, but they devote little time or money to actually helping us to be able to have real time supports that will help us to be able to live a decent life as Autistics. Instead, they want to cure us, fix us, and eradicate us….you know, the whole “Children should be seen, not heard” mentality? Insert Autistic children and adults. Yes, it seems to me that they want to erase and even murder us.
And then when they go to Washington DC and have conferences, without inviting us Autistics, and they continually won’t let us speak…..you have an organizatio that, in my strong opinion, does NOT truly represent the Autistic community.
And then you have them saying that we are a crisis and a burden. That we are dumb, and even the R word.
They say that we will never have normal lives. That we will ruin the lives of our families. They seem to think it’s a bad thing for us to be Autistic. That is all they want to think about…….and they still won’t listen to US, the very ones they perport to represent.
Just my take.
And i, for one, feel that they need to be stopped from spreading their hateful campaign of fear, gloom and doom.
We are human beings, not blue puzzle pieces. We are alive. Very much alive. And we have ears that hear this hate.
It needs to stop.
Written by Amy Sequenzia For Autism Women’s Network.
To The Corporate Supporters of Autism Speaks, by Amy Sequenzia
I am convinced you donate money to this organization because you believe you are helping autistic people and their families.
You have been lied to. Only 4% of your contribution goes to services for the autistic community.
Most of that money goes to research on causation, which will inevitably lead to methods for preventing the birth of people like me. This is eugenics. This is hate.
Autism Speaks tells you that we are an epidemic, that we cost too much to society, but they don’t mention that many of us work, raise families, go to college. We are everywhere. We are your friends, neighbors, co-workers. When we ask to be heard, they say: “You are not really autistic. You are too ‘high functioning’”.
I, on the other hand, am what Autism Speaks calls “low functioning”, tragedy, burden, severe; they say my family suffers because of me, that they barely exist and that I am destroying their lives.
None of this is true but they don’t listen to me either since I am the proof that they lie.
I am non-speaking, I cannot dress myself, I need help eating and I need help going to the bathroom. I have seizures, which are not autism, but I am not safe alone.
There are many others who are a lot like me. We are in colleges, we are artists and writers, we make movies and give lectures. We still need supports but, when we get the supports, we excel. Just like everyone else.
Because of us, a new generation of autistics is growing up with dreams and aspirations, and they can succeed, just like we, adults, did. Those young autistics will not accept to be called “burden” and “tragedies” anymore. They are speaking up too.
That is why we ask you to stop supporting Autism Speaks. Autism Speaks say that we aren’t fully human, they refuse to listen to us, they traumatize young kids by saying they are not what their parents wanted. They support electric shocks as “treatment” for autistic people at the Judge Rotenberg Center. And they misrepresent families that love their children, families that need supports but do not think their children should not exist or that they burdens.
You can do better. You can actually support us, autistics, and our families. Please, consider the organizations listed bellow as recipients of your donations. We know you want to do the best to help us and we know you don’t want your name associated with a hateful organization.
• The Autistic Self Advocacy Network (http://autisticadvocacy.org/)
• Autism Women’s Network (http://autismwomensnetwork.org/)
• Ollibean (http://ollibean.com/)
• TASH (http://tash.org/)
• The Thinking Person’s Guide to Autism (http://thinkingautismguide.com/)
• ADAPT (http://adapt.org/)
• Dan Marino Foundation (http://danmarinofoundation.org/)
• Autism National Committee (http://autcom.org/)
• Autism Network International (http://autreat.com/)
• Autism Society (http://autism-society.org/)
• National Council on Independent Living (http://ncil.org/)
* Find out more about Boycott Autism Speaks: http://boycottautismspeaks.com/home.html
(see original post at: http://autismwomensnetwork.org/article/corporate-supporters-autism-speaks)