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12 Things I've Learned Growing Up With Autism

This post is from Autism Speaks Staffer Kerry Magro and is part of an initiative on our site called “In Our Own Words: Living on the Spectrum,” which highlights the experiences of individuals with autism from their perspectives. Have a story you want to share for the series? Email us at InOurOwnWords@Autismspeaks.org

A few weeks ago, I was getting ready to go out when I stopped by my parent’s room where they were watching some baby videos of me. In the video, we were at my aunt’s house where I was cheerfully traveling around from room to room while my dad was getting some close up shots of me eating some bacon. While the video continued on, I started to remember that I had seen this video before just about a year back. 

I was probably the happiest kid you would ever meet, but my speech was not there at all. I made sounds but nothing close to what I should have been saying at one and a half. A year later, I was still non-verbal and even though I started talking shortly thereafter, I got a diagnosis of autism when I was four. Every once in a while now I start thinking about that kid I now watch in the videos and think to myself what would have happened if I never started talking. Would I live a happy life some day as someone who was non-verbal? Today I know of great success stories of people like Carly Fleischmann who are non-verbal. These stores it make me think to myself, “I could have done okay.”

Today that same kid who was non-verbal and had difficulties with motor skill issues, speech issues and sensory issues can say he’s overcome many of those obstacles. I now have a full time job, a master's degree and speak across the country on disability-related topics. 

There are so many things to share. What I can share with you now is what I've learned growing up with autism....

  1. Everyone has challenges. But having autism has made my life amazing in so many ways. What I have is a part of who I am.
  2. Autism hasn’t defined me. I’ve defined autism. I’ve never seen myself labeled by my diagnosis of autism.
  3. Autism isn’t a disease. So much information has been spread, but it’s important to remember it’s a disorder.
  4. Just because you can’t speak, doesn’t mean you can’t communicate.
  5. Progress, no matter how big or small, should be embraced and cherished because it means we are moving forward and in the right direction. 
  6. When you have an interest in something, you should go for it. With autism my interests are sometimes more focused than those of my peers, but it can make me more dedicated towards them.
  7. You need to fight to get what you want in this world - autism advocacy specifically. There are still too many ignorant people out there who don’t understand how important things like services are to our community!
  8. Awareness and education about autism are key elements to our society hopefully one day accepting autism. Having a month like Autism Awareness Month and the Light It Up Blue campaign on World Autism Awareness Day in April gives us the time to start that conversation.
  9. I wouldn’t be here today if my parents didn’t try to push me at times. Just because someone has autism doesn’t mean they can’t push themselves.
  10. I shouldn’t live by what others believe I’m capable of, but by what I believe I’m capable of. No one knows you better than you. Don’t limit yourself based on people who doubt your abilities.
  11. Autism is not a one-size-fits-all disorder. Our autism community is very broad. It is one giant spectrum full of people with so many different abilities. If you’ve met one person with autism, you’ve met one person with autism.
  12. Autism needs the support of everyone more than ever now. I didn’t understand it growing up because the prevalence rate was 1 in every 1,000 children having an autism diagnosis. Almost in the past decade though it went from 1 in 166 to 1 in 150 to 1 in 125 to 1 in 110 to 1 in 88 to 1 in 68 children! It’s time for every elected official to make autism a priority.

I’m 26 now and I know I have so much more to learn about life. But I hope this list can spark a conversation in our community. I believe that my story, along with the stories of everyone in our community, can make that conversation happen. The important thing is to never stop communicating with each other. Never stop doing that. Whether you are an individual with autism or a loved one of someone with autism, it’s up to us to learn and advocate every single day for our community.

Together we can go out there and teach the lessons we’ve learned from each other to impact the future of everyone with autism for the better.

I have high hopes for the future...and what I hope to learn along the way. 

Learn how the world is Lighting It Up Blue for Autism Awareness in April.