Standing

Standing by Duckie


Today is Autistics Speaking Day. What does that mean to you? Maybe nothing. To the Autism Community, particularly those who believe in self-advocacy, today is a day to celebrate standing up and speaking out (using whatever form of communication works best for each individual).

What does it mean to me? As of today I have been Autistic for over 36 years. I’ve only known I’m Autistic for a little over a year now. About 2 years ago I sat on the edge of my bed and told my wife that I was afraid a day was soon coming where I wouldn’t be able to leave the house anymore. That conversation really triggered my quest for answers.

When the answer came (kicked off by this wonderful post http://eruditeaspie.blogspot.com/2011/01/i-am-me.html), my initial emotion was joy. Not regret, not fear, not shame. Joy. For once, I understood me. And I discovered a community that understood me. That started my journey, one I’ve undertaken on many subjects before, to learn everything I could about Autism and Asperger’s.

Though bullied, misunderstood, and misdiagnosed for many years, I can stand today. I am one of the lucky ones. Many Autistics go through life, diagnosis or not, and continued to be bullied, misunderstood and misdiagnosed. That’s not to say that I’ve reached some magical nirvana where bad things don’t happen to me anymore. Quite the opposite is true. Very much in the spirit of why Autistics Speaking Day was started, I refuse to be a victim anymore.

Refusing to be a victim encompasses more than just rising above what others do to me. It means refusing to use my Autism as an excuse. You see, by the time my Autism was discovered, I was already a husband and parent. I never had anyone tell me Autistics shouldn’t marry and they most certainly shouldn’t have kids. I did it never being told those things till after I had done them. Granted, it has been incredibly hard work. I have one failed marriage to prove it. But don’t let that be a deterrent to you if you are Autistic and considering marriage. Fall madly and deeply in love. Don’t let anyone tell you different.

Before I knew about Autism, I thought I couldn’t succeed as a parent. Today, I know I’m Autistic and yet have full custody of my four kids. It is incredibly hard work. Sometimes I have to retreat to the silence of my room just to recharge a bit so I can keep going. But I keep going. I will not be a victim of those who say Autistic adults shouldn’t raise kids. My kids don’t know I’m Autistic. They know dad is different but they also know I love them and will protect and provide for them.

Much like many other Autistic adults, I appear fairly “typical” on the outside. I have a career, a family, and I manage to maintain my responsibilities. However, so much of that is 36 years of learned behavior. I stim, its just that I chew my tongue to stim so no one ever sees it since it goes on in my mouth. I melt down, ask my family they’ve seen it. I live in constant fear when out in public. I can’t take last minute changes in plans. I won’t wait in line. I will take the long way through the grocery store to avoid aisles with people in them. 

The one area of my life where I still give in is that I am not public with my Autism. In 2012 there is too much risk for me to go public. And this too is part of what Autistics Speaking Day is about. To show the world that Autistics can do many things society and the “experts” say we can’t. One day, I pray, someone like me can be public with their Autism and not fear losing their job or their kids.

I will not be a victim even if that means I have to be silent sometimes. But I won’t be silent today.