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.
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)
Nicole Nicholson shared a link to her poems and has written this.
I consider myself fortunate. I have been surrounded by very open-minded and educated people since I “came out” as autistic, and I have felt free to explore Asperger’s through my poetry and prose. However, I know there are others who do not feel safe being “out” as autistic in life or on the job partially because of the harmful views of autism that A$ has crafted and promoted.
I certainly don’t doubt that autism is not always a walk in the park. I call to mind a quote from Sharisa Joy Kochmeister: “Autism is a gift, disguised as a dilemma.” But autism has brought many gifts to me, including poetry — and I think my Asperger’s contributes to my ability to translate images into words. I would not trade any of it — even my sensory and social difficulties — for a “cure”.
By Karen Reznek
My daughter graduated from high school as A$ was coming to power and
spreading their message of how autism ruins lives. Although my daughter
would be an asset to any company who hired her — she is a hard worker,
reliable, learns quickly, and is very responsible — no one wanted to
hire someone who “bankrupts families”, “destroys marriages”, and “ruins
lives”. Never mind that my family’s finances are in order, my marriage
is just fine, and my daughter is a wonderful, valued part of our lives.
Not in spite of being autistic, but for the total sum of who she is, of
which autism is a large part.
Fortunately for her, Transition Services kicked in two years later, and
By Nicole Wells
Autism Speaks was all I had heard of prior to Nic’s diagnosis. My vast knowledge of autism was Rainman and maybe one other movie – couple with what I saw/read/heard via AS. Scared the crap out of me! So much fear mongering! I was now terrified to be the mother of my sweet, loving, beautiful son! I was not prepared for 40 hours of therapy a week, radical interventions, etc.
Thankfully I have a very curious streak and wanted to do more research. All angles. Stumbled on to Jenny McCarthy and those are minutes & brain cells wasted that I will never get back.
I am so thankful that I found the adult autistics – they have been so generous to share their knowledge, experience and time. My son is thriving in a family environment that is accepting first and foremost.
Autism Speaks hurts Autistic people. It hurts families and children. It hurts communities.
I am an Autistic adult but also the parent of an Autistic child. I know the realities of autism. What I don’t know are things like “grief” and “sorrow” and “despair”. I have never felt that way about myself or about my amazing Autistic child.
When my child was diagnosed, I was told to go to the Autism Speaks website. I was HORRIFIED by what I read. My wonderful, beautiful child was a burden. He was going to ruin my marriage. He was going to make me grieve for the “normal” child that I was supposed to have. I watched videos of children in crisis, at their most vulnerable, put on full display for the public. Humiliated by their parents and Autism Speaks to raise money. I saw a mother saying she thought about killing her child in front of that child as if she was not even there. I saw nothing of Autistic adults, as if we didn’t exist either. I was devastated, but not by autism. I was devastated by the lies that Autism Speaks was telling the world about my son. About me.
People have said to me “Oh, I’m so sorry!” upon learning that my child is Autistic. I am seen as an anomaly for loving and accepting my child exactly as he is. I don’t want to fix him, or make him “indistinguishable from his peers”, or to be pitied for the privilege of raising him. All that many people know of autism is the hate, the fear, the despair that is peddled by Autism Speaks. What they know is a lie because our lives are full, wonderful and valuable. We are Autistic and we are not broken. Autism Speaks wants the world to see us as damaged. Every day, we fight for acceptance. Every day, Autism Speaks makes our fight harder.
Autism Speaks claims to speak for us, without us. They claim to speak for our Autistic children while painting them as monsters. I can not stand idly by while this happens. I will boycott Autism Speaks until they make genuine, meaningful change that includes our voices, our reality, and an immediate stop to their campaign of hate against Autistic people. I do this for myself, for my son and for my community.