• 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.

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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