It was exactly one year and one day ago, when I posted a response to an article about relationships and people with autism. Recall my thoughts here.
This post is also about autism, but it much closer to me. Please read on!
A long winter has finally ended, when it seemed that it would go on forever! Regardless of the weather, however, the 2013 Walk Now for Autism Speaks draws near. This year, the walk is on Saturday, May 18, and I will be walking amongst many other proud supporters, and people on the spectrum, at Soldier Field in Chicago. I participated in this Walk last year, and it was an excellent experience. Not only did I get to speak with supporters of autism awareness, but I got to interact with other people like me—people on the autism spectrum. It is wonderful that so many people gather together with a shared passion for the same cause: raising awareness of autism. The Walk is a great experience for people of all ages, whether autistic or neurotypical.
What exactly is autism? Autism, or autism spectrum disorder, is a group of complex developmental disorders characterized by difficulty in social interaction and comprehension. While the symptoms vary from person to person, those affected by autism typically live by routine and exhibit oversensitivity to things like loud noises and surprises.
The prevalence of autism is increasing. According to the Centers for Disease Control and Prevention, the number of children diagnosed in the United States has risen to an alarming 1 in 88. This means autism currently affects over one million children in our nation alone. What many do not realize is that there are more children affected by autism than by cancer, diabetes, AIDS, cerebral palsy, Down syndrome, and cystic fibrosis combined. There is no known cure, and much more funded research is necessary if we want to change the lives of people with autism. The disorder inhibits many people, and although I am on the spectrum, I think I am a success story. It has not been easy, however.
I was diagnosed with Asperger syndrome when I was six years old. Prior to that, my parents were mystified by my behavior. Several examples come to mind. As seems to be typical with people on the spectrum, I did not speak words, but rather pointed at anything that I was interested in as a young child. Mom and Dad could tell that I was suffering from some sort of frustration, rather than having anger issues. My pattern of speaking clearly showed that I was absorbing information, but that the ability to communicate what I knew was locked behind a then-impenetrable door. When I was presented with certain cues, however, I spoke.
For example, I have always held an interest in game shows such as The Price Is Right and Jeopardy!, even as a toddler. My first words were, “Mommy, come on down! You’re the next contestant on The Price Is Right!” Although this might just be “mirroring” what I heard, it was still quite profound for a toddler to claim. Also, I have always been (and still am) fascinated by road signs and street names. When I was a toddler, Mom and Dad would read me the street signs when we drove around, and I said those names in the car. But then when we took a different route, the cue of calling out the street signs led me to see and mention the street names that Mom and Dad did NOT say in that region. Clearly, I had ability, with some sort of cue needed to unlock my potential.
The answers came when I was in first grade. My early years of school involved cases where I was completely uninterested in what was going on in class. However, at home I was engaged in learning about the periodic table and reading books at a sixth-grade level. My teacher had recommended that I get a psychological test. So, after an enjoyable battery of tests in a Des Moines hospital, the diagnosis came out as Asperger syndrome. As aforementioned, this was not a sentence of doom, but rather a tool to break through that impregnable chrysalis!
Once that answer was found, I was enrolled in speech therapy at school to learn formally about nonverbal cues, making friends, and functioning in social situations. This unlocked a world of social interactions. Whether chatting with my classmates on school bus trips, gaining a rapport with teachers, or attempting to make new friends, learning from my earlier challenges may also give some answers to the larger picture.
And now, as a graduate student at Northwestern, I hope to use my experience with Asperger syndrome as a driving force and an asset in my portfolio. I believe that, even though finding a cure for autism spectrum disorder is elusive, that understanding the people on the spectrum is the primary concern. Each person on the spectrum is a different piece of the puzzle, and understanding each piece is very helpful for the solution of the whole puzzle!
Although I have focused on my story of Asperger syndrome, there is tremendous capability, even in people who are “lower functioning” on the spectrum. Many of the most brilliant minds have been said to have some degree of autistic behavior. Also, the savants in mathematics and music can have a large impact on the world, if there is an outlet for their creativity. I vow to advocate for people on the spectrum, as they have many unrealized talents!
Walk Now for Autism Speaks is a tremendous opportunity to fight for understanding of autistic individuals. Every step taken and every dollar raised will fund the research that might one day discover answers for the cause, treatment, and possible cure. I realize that there are many great causes that deserve your support, but please consider supporting me, my team, and others like me on the spectrum. You can register for my team, Northwestern Wildcats, by following the link below:
For my friends and family who are not in Chicago or will be unable to walk with us, you can donate to the cause online. Please do so at www.walknowforautismspeaks.org/chicago/noah121.
Every 15 minutes, another family receives the news that their child has an autism spectrum disorder. You can help to become part of the solution!