This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started an Autism Speaks U Chapter: Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events. It is an exciting and collaborative way for students to raise funds and awareness for Autism Speaks, while supporting their local autism communities.
Some of the biggest fears I’ve ever had in my life are the fear of the unexpected, fear of change, and the fear that I would be looked at differently. This all came into focus my first year of college at Seton Hall University. Before college, I had only told a few people that I was on the spectrum. This was mainly because when I was younger, when my parents would tell me I was autistic, I would have no idea what that meant or how that affected me. I only knew one thing – I was not artistic.
In both grammar school and high school, I never felt the need to tell anyone either since I went to a private school, Community Lower/Community High School in Teaneck, N.J., for students with learning disabilities. There was a certain comfort that I enjoyed, knowing that I was with others I could relate to. We all had something with some letters so it wasn’t a big deal.
When college came along, I didn’t know what to expect. When I was deciding on what college to go to, I chose the college that best matched my future career goals (sports management), not the school that would be best match my disability (a school with more accommodations). While well-meaning, the idea of me surviving at a post-secondary program which wasn’t the recommended choice by my high school academic advisors. They saw it as a huge mistake, which they thought would hurt me in the long run. I honestly could care less, looking back.
This brings me to the day I came out about my disability publicly. It was during one of my freshman classes in “Oral Communication.” My professor had told me to pick a topic that I knew a lot about to speak about for 10 to 15 minutes. The obvious choice in my mind was to pick autism, considering my public speaking skills were still very limited and I thought it would be an easy subject to talk about because I know a lot about it. The theme of the presentation was going to be “how autism impacts playing basketball while highlighting the story of Jason McElwain’s historic game, which illustrates how someone with autism can overcome the odds.”
For those who don’t know Jason McElwain, he was the high school basketball team water boy, who has autism, turned basketball star. He didn’t play one game in high school, until the last game of his senior year when he scored six three-pointers in a matter of minutes. This game became one of the bigger underdog stories in recent memory. So now I was set. I would speak about him for five minutes, present a general overview of autism for another five minutes and than close by telling them that I had autism.
The day of the presentation, everything went according to plan. I had spoken about all of my main points; however, when it came down to telling my fellow peers I had autism in my closing statement … I froze. The thoughts that were running through my head were endless. What happens if they treat me differently? What happens if no one wants to have anything to do with someone who is different? Finally, after I started speaking again I reminded myself that the one fear, the one fear that I never want to let take the better of me is the fear of being who I am. Being me had taken me to a post-secondary education and being me was the only way I was going to get through this presentation.
At the end, my closing statement of my presentation was: “Autism can not define who you are, only you can define autism. I have autism so I know especially, and I ended up the captain of my high school basketball team so I can relate to this message.” As soon as this was said, I was applauded and given a standing ovation by both my professor and my peers. This was a wonderful feeling.
After the speech, I was very open to all my peers about being on the spectrum and have been since this day. Many people, both with autism and not, ask me if telling people I am on the spectrum was a mistake, and truth be told it has only made me stronger. Granted, things are not perfect. I am still judged and looked at by countless people as broken. I don’t dislike these people, however I pity them. People are still very unaware, sometimes ignorant and sometimes afraid of what might be different. During my time at Seton Hall, I have founded an organization to spread disability awareness called Student Disability Awareness (SDA) and founded a non-profit called KFM Making a Difference in the Community. Both of these organizations have meant a lot to me as I continue to promote disability activism throughout New Jersey. Since the days of that Oral Communication class I’ve gone on to speak at several different venues about my story and am hoping to continue to mentor and help those with and without disabilities who want to become more aware of disability awareness.
On April 14, over 450 guests gathered at The Metropolitan Museum of Art in New York City for “Tip-Off for a Cure,” an evening to benefit Autism Speaks and The Gillen Brewer School which raised over $1.3 million. The evening was emceed by Sportscaster and Basketball Hall-of-Famer Marv Albert and honored former Senator Bill Bradley, a Managing Director of Allen & Company, LLC; FedEx Corporation; Robert A. Kindler, Vice Chairman & Global Head of Mergers & Acquisitions, Morgan Stanley; and Klaus Kleinfeld, President, CEO & Director, Alcoa.
One of the evening’s honorees, Bill Bradley, was introduced by his cousin, Taylor Crowe, an adult who has autism. Below is the speech that Taylor wrote and presented at the event:
Hi, everyone. I’m Taylor Crowe. I’m 28 years old, and I’m one of the many ways autism speaks. I’ve given talks about life with autism since I was 19. My goal is to tell as many people as I can what the world is like from the perspective of someone with autism.
As you know, many people with autism cannot talk. I feel extremely fortunate that I’m able to explain my life experiences to people.
Throughout my life, some of the things that happened to me were very positive, while others were negative. One of my reasons for speaking about life with autism is for others to learn from the negative things that happened to me so that in the future, people with autism won’t have such experiences.
I was born in 1981. Like lots of kids my age, my parents have home videos from my childhood. The video of my second birthday shows a happy little boy, laughing, talking and interacting with everyone in my family. Making eye contact. Sharing. There’s no hint of autism. The same is true in another video of me swimming with mom a few days later.
Just after I turned three, though, something happened. I don’t remember it, but my parents have told me about it: just after breakfast one morning I dropped my spoon to the floor, stood up, began crying and then screamed, “Daddy, daddy, my mouth won’t say the words; my mouth won’t say the words!” Within days I lost almost all my ability to speak and I became very, very unhappy. I’ve been told that I quit making eye contact, and also became very uncomfortable whenever someone wanted to hold me or hug me. I cried and screamed … a lot … every day. This, I’ve learned, confused and worried my mom and dad.
My first childhood memory is from sometime between ages three and four. A babysitter named Ann put me to bed, gave me a stuffed toy dog and asked, “You wanna take Snoopy to bed with you?” That seemed really unusual to me because I knew what the cartoon dog Snoopy looked like, and this dog looked totally different. I couldn’t say the words to explain what I meant. I knew what I wanted to say, but I was frustrated and unhappy because I couldn’t say the words.
My first childhood memory is of knowing words I couldn’t get my mouth to say.
Ann also gave me a toy rabbit to play with that spring. She called it Bugs Bunny. Once again, I knew what Bugs looked like, and this rabbit didn’t look anything like him, but I couldn’t explain myself.
What’s your first childhood memory? Mine is of terrible frustration: of knowing words, but not being able to say them.
After my autism took over and I started acting differently, mom and dad first thought I was just having trouble adjusting to having a new little brother around, but things kept getting worse. Before long, they knew something else was going on. They took me to a famous hospital where a psychiatrist diagnosed me with autism. He told my parents that I’d never have any friends, never live independently, never be able to drive a car, never be married, and never ever even be in a regular classroom with other kids. The doctor also suggested that they consider putting me in an institution when I got older, because he predicted that I’d become violent and unmanageable as a teenager. My parents didn’t know much about autism back then, but what they did know was that it never pays to give up; you always have to keep working at your goals, no matter how hard they might be! The only people who are doomed are those who give up!
Autism is a “spectrum disorder,” which means that autism is a lot of things that seem so similar they’re all given the same name. Some people with autism are high functioning, while others are low functioning. Some children are born with autism and their parents know something is different, even in the hospital nursery. Other children have perfectly normal childhoods until their autism appears, usually between 18 months and three years old. That’s the kind of autism I have: it’s why the video of my fourth birthday is remarkably different from my second birthday video. I was laughing and playing on my second birthday. I’m screaming and crying in my fourth birthday video.
Because of my autism I needed special treatment when I was younger. I started with language therapy when I was four and a half. Over time, this helped me learn how to communicate, and eventually, through the years, how to talk again. Starting at age 10, I had occupational therapy, which helped with my sense of touch and balance. I also had learning disabilities classes and other special needs classes when I was in school. But I was also in mainstream classes whenever I could be, around all the other kids in school as much as possible. All of these things really helped me a lot!
Tonight I’m proud to introduce someone who’s known me all of my life. He knew me when I was a baby, and he knew me when my autism took hold. He saw the changes, and, along with the rest of our family, experienced the confusion and uncertainty that came with my autism. He watched me grow up, and has seen the progression of things that have happened in my life. He’s my cousin, Bill Bradley, former forward for the Knicks in the late 60s and 70s, former U.S. senator, 1996 candidate for president of the United States … and former Student Body President of Crystal City High School in Crystal City, Missouri.
One memory I have of Bill is from when I was 10 ½ years old. We were visiting relatives in Crystal City. Dad had our video camera, so for fun, Bill and I took turns interviewing each other. I asked him about his family, about his life as a basketball player, and about what he really did for a living. I remember some of this by heart, because like many people with autism, I have a pretty good memory. We had a lot of fun that day.
And I think we’ll have fun tonight. Bill is a great speaker, a great friend, and a great cousin. And he’s got a pretty good memory, too. Ladies and gentlemen, Bill Bradley.
Autism Speaks would like to thank our event Co-Chairs, Henry Schacht, Chairman, The Gillen Brewer School; Tim Solso, Chairman and CEO, Cummins Inc.; David Stern, Commissioner, National Basketball Association; Paul Tagliabue, Former Commissioner, National Football League; and Suzanne & Bob Wright, Co-Founders, Autism Speaks, our friends at the Gillen Brewer School and the NBA & WNBA, our Event Committee, Honorees, special guests and many wonderful sponsors and patrons who supported this event to make it a resounding success.