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Don't let autism be the only thing that defines you

This guest blog post is by Ann Kagarise. Ann is a writer, self-advocate, photographer and assistant director at a school for children with autism.

Recently, I spoke at an autism summit. As someone with autism, I was very grateful to have a voice. One of the things that people with autism struggle with the most is communication. It is always an honor, to me to represent or have that voice. Growing up, I didn’t have the abilities I do now. Practice, perseverance and patience helped me get to this point.

I came out of the summit wondering why there was such a huge reaction to two speeches that I gave. This was a real soul searching question that I had. I have always been the type of person, autism or not, to work harder than the one next to me. I have always known going into any situation that it was just going to be harder. I knew that I had to have some underlying abilities that overcame the ones I lacked. If I didn’t have a fast processing, I found a way to slow it down. After all, the world is not going to slow down for us, so I had to find out a way that I could understand and keep up.

We often talk about super powers at IDEA House, where I am employed. All the kids there have autism. As a teacher/administrator with autism, I know I have a role that the kids are watching. I’m always careful in how I share my obstacles living with autism. I look for those kids who doubt their future. I see the fear in their eyes and the wonder if they will ever make it independently.

One thing I have learned and share with those who sit across from me, is that this is not going to be easy. You are not going to wake up one day and be a CEO of a company or have your dream job without a lot of hard work. Every day when you wake up, you have to realize now, that you will have struggles.

You will have to run a marathon daily to keep up in a neurotypical world. You will have to work harder than your co-workers. You will have to be willing to ask for help. You have to be aware of your needs and you have to be patient with yourself. You have to go that extra mile. You have to ask people to slow down and ask them to say it one more time, if you have to. You have to believe in who you are and not let autism define you. Don’t let anyone or your self-doubts ever hold you back.

Autism is never an excuse for not reaching your full potential. In my years of being at the school, I have had quite a few kids sit across from me and say "I can’t do it." That is when I play the autism card. Autism is not an excuse for not doing your work. Autism is not an excuse for a tantrum. Don’t let autism be the ONLY thing that you are.

I tell them that they have to believe in themselves. They have to believe they CAN. They have to put expectations on themselves. Every time they meet that expectation, they have to raise that bar. It doesn’t matter if their job is working in a grocery store stocking shelves or working in a mail facility sorting mail. It doesn’t matter if they are working on computers or working as an administrator, it is up to them to get there.

The only thing holding them back is their own beliefs in themselves. They told me I wouldn’t graduate high school. I got a masters degree and I am using my mouth to teach other students that they, too, can be anything they dream to be. I never thought I would be using my mouth, my words, to reach others. I used to have to write notes to communicate. I would draw in my room or take pictures in order to get across my thoughts. Now, after much work, I still blow myself away when I put sentences together that actually make sense.

There was a man at the conference that raised his hand and made the comment that I am very aware. Isn’t that a part of autism? Being extremely aware? We are very aware of behaviors and those around us. We are very aware of ourselves. I have watched kids with little communication teach themselves how to sign. I have watched kids with autism notice a haircut or the smallest change in a person or in a room. We have to use that awareness and turn it on ourselves to become the best that we can be. What works. What doesn’t. Learn and utilize all the tools to become the best that we can be. It can be done. I am proof.

I always look at our kids and say, “Don’t you dare. I do not want to hear you say you can’t. I did. You can. Let’s do this.” 

Have a story about growing up on the spectrum you want to share for our “In Our Own Words: Living on the Spectrum,” series? Email us at InOurOwnWords@Autismspeaks.org.

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.