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Calls to Action

When People Say You Don't Have Autism

This post is from Kerry Magro, Social Media Coordinator at Autism Speaks. This post is part of a new initiative on our site called “In Our Own Words: Living on the Spectrum” which highlights the experiences of individuals with autism.

When I was a kid, because of my lack of speech and sensory issues teachers wouldn’t blink when wondering if I had autism. I had numerous difficulties. I lacked a lot of speech; I had a stutter and I couldn’t be touched without feeling like my entire world was collapsing around me. I was struggling. I didn’t know what my future was and neither did my parents. But, luckily, the kid who had these issues was able to progress, graduate from high school, graduate from college and even get a masters degree.

I feel blessed right now in my life. But one thing that becomes more tough for me is when people makes comments like “I didn’t know you had autism!”, and “You have autism? You’re pulling my leg right”. These comments started as soon as I first came out about my autism when I was a freshman in college. I never shared it before because I never had to. I was in multi-handicapped classrooms ever since I was in Pre-K. The time came though when I decided I wanted to become a self-advocate. I wanted to share my experiences on the spectrum to help as many people I could in the community.

6 years later these comments still happen every now and then but this summer everything took a turn for the worse. I was having a conversation with a friend on Facebook when I mentioned to him that I was having some trouble booking speaking events for the summer months. His immediate response was something I never would have expected when he said…

“Kerry, sometimes you just don’t come off as having autism. Maybe if you seemed a bit more autistic, it would help you out”.

I was stunned. For some reason this comment got really under my skin. Was my opinion not as valid because for this one person I didn’t play the part of what it was like to have autism?

I didn’t respond to the message because I felt powerless at that moment. A person who barely even knew me was giving me advice to “be more autistic.”

This is when my self-advocacy and what I was doing evolved tremendously. I wish I could tell you that I responded to this person and said, “Hey man, listen. You can’t judge a book by its cover. Did you know I’ve been re-diagnosed with autism every year of my life since I was 4? That I get mind blindness all the time and have trouble understanding others? That I have sensory and motor issues to this day that make life difficult. Please be more understanding of what autism is man because it’s something that is unique and affects everyone differently.”

Ever since this incident I now go out to our community to spread awareness but also spread education about the uniqueness of our community. Things like why it’s important people understand autism is a “spectrum disorder.” The fact is if you’ve met one person with autism, you’ve met one person with autism. To this day I know autism doesn’t define me, I define autism. It’s time for our society to see how broad the definition of autism is.

I know I’m still going to get comments like these but I’m going to remember to take them in stride. Just as teachers have to teach individuals with autism the way those individuals learn, we must teach our society many a times the same way. Some people are always going to be ignorant but by sharing the stories of self-advocates and having their voices heard we could make a colossal and amazing impact. I’m excited to see where our journey as a community goes with this.  

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.