As anyone who's read this blog or knows my family is aware, our oldest son Ethan has Autism. Asperger's Syndrome, more specifically. They've read about or heard about or seen different things, whether it's a triumph or a tribulation or struggle. I would never wish change on him, but do hope to help him when he's having a hard time. To teach him life skills and coping mechanisms when times get tough, and to learn from him when it comes to so many things, like how he sees the world or what's important or cool to him.
Controversy is a tough thing for me to deal with. I have avoided discussing Autism Speaks for a while, because there has been a lot of controversy surrounding them. I don't have all the facts, but what I do know, well it doesn't make me happy. I was once in the boat of "how to fix", rather than "how to help and how to adapt my own views", when it came to ASD. In that, let me be honest. I don't mean that I wanted to make him not have Autism, but I wanted to "fix" all the difficult things that came with it. Now I see them not as something to fix, or a hurdle to overcome, but something to embrace and use to his advantage. Anxiety can be alleviated to help him see problems for what they truly are. His obsessions can grow into a great outlet, maybe a career someday! (Video games, anyone? or even math and maps could help be an engineer or teacher!) His point of view on the world can be a refreshing change, if you look at it as not wrong because it's not yours, but different, because isn't different what makes the world go 'round?!
When I read that John Elder Robison stepped down from his position at Autism Speaks, I was somewhat surprised. I had read (most) of his book, and hadn't really even known he worked with/for them. I had heard other things over the years. After reading several blog posts about them "not speaking" for the blogger's family, etc. it made me think some.
What I want to say is this: Regardless of whether you agree with that organization, they do NOT speak for my son. Truly, no organization does.
I speak for Ethan.
Jason speaks for Ethan.
His brothers speak for him.
Grandma Marsha and Grandpa Joe speak for him.
Grandma Linda and Grandpa Gale speak for him.
Aunt Jorie and Uncle Matt. Uncle Jeff. Aunt Madison. Aunt Heather and Uncle Matt. Aunt Linda and Uncle Desi. They all speak for him.
His cousins speak for him.
Great-aunts and great-uncles and great-grandparents speak for him.
Classmates, friends, and teachers speak for him.
Every time they speak up for him, listen to him, advocate for him, talk TO him, befriend him, teach him, learn from him, they speak for him. It's in their actions, just as it is in how they interact with everyone else. They don't treat him differently, "special", they treat him with the same love and care as everyone else. And you know why? Because it's not more difficult nor should anything different be expected!
But most importantly, Ethan speaks for himself! In his actions, his words, his triumphs and his struggles. He is learning to stand up for himself and to BE WHO HE IS MEANT TO BE! The caring, sweet, funny, map-loving mathematician who excels at video games, and is an avid reader.
That is all.