I spent last Wednesday getting pies shoved in my face. I’m spending this Saturday volunteering outside — and most likely freezing — at Forest Park in St. Louis. Why? For my brother.
My brother has autism. It’s been 14 years since he was diagnosed at age 3. I can’t remember a time when autism _wasn’t_ part of my life. I’m obsessed with autism-related books, blue puzzle pieces (the autism awareness color and symbol), and working with Autism Speaks U at Mizzou.
Autism is a brain disorder that affects the way individuals communicate and interact with others. For my brother, autism means he doesn’t feel the need to be surrounded by friends at all times, but he’s still a gifted artist with a perfect memory for all things Marvel and DC. For my friend’s brother, autism means he doesn’t talk at all, but he still has a close group of friends whom he communicates with through sign language. For other children with autism, autism could mean they can’t stand being touched or that they have a really hard time making other people understand them or millions of other things. As my sister puts it, “Their brains are just wired differently.”
I love my brother. I see no reason why he should be bullied just for being a little bit different, as he was in junior high. That’s why I’m so committed to autism awareness and anything that aids it. I got pies thrown at me because it helped raise money for autism research. I’m spending Saturday in St. Louis because I want to help make this year’s Walk Now for Autism Speaks event a success.
I think that first-hand accounts of autism spectrum disorders are one of the best ways to increase autism awareness. Not just awareness of WHAT autism is but also WHO it is. Authors like Temple Grandin, John Elder Robison, and Arthur Fleischmann and his daughter Carly provide an often-neglected view of what it means to really live with autism. I know a lot about living with an individual with autism, but no matter how many books I read, I’ll never know what it’s really like to have autism.
Robison has written two memoirs of life with autism: “Look Me in the Eye” and “Be Different.” The latter is my favorite. In it, Robison systematically examines his life and tries to pinpoint exact moments where his autism spectrum disorder, Asperger’s, has helped him and hindered him. It helped him in his career (he’s an accomplished engineer and mechanic). It hindered him in his marriage. Robison’s examples and explanations go a long way to make the mindset of autism accessible and understandable.
Fleischmann wrote his book, “Carly’s Voice,” with the help of his 17-year-old daughter, Carly. His book describes how he struggled to get to know his nonverbal autistic daughter. He talks about finally getting to know Carly as a real person — finally hearing her “voice” — after she found a way to communicate with others at age 10. By typing (Carly now carries an iPad everywhere for this purpose), Carly is able to share her inner world with her parents and everyone else. As she puts it, “I am an autistic girl but autism doesn’t define who I am or how I’m going to live my life.” Fleischmann’s book exposes the other side of Carly — a side a lot like any other gifted teenage girl.
Grandin’s many books are examples of how some aspects of autism can actually provide an advantage. She’s famous for her work as an animal scientist — she’s been essential to making America’s meat industry more humane. Her autism enables her to visualize the world as certain animals do and to develop procedures that are easier and less terrifying for animals to go through. Her books show how her autism has occasionally helped her, but even more importantly, they show how her autism doesn’t dictate her life.
Books such as these provide an inside look at autism, turning it from a clinical definition into something that real people live with. They show that there are faces behind the statistics of autism. They do what all truly great books do — enable us to better understand something we’ll never live through ourselves.