What My Childhood Was Like Before I Knew I'm on the Autism Spectrum


I didn’t always know I had Asperger’s syndrome. It wasn’t until my own children’s diagnoses of autism spectrum disorder (ASD) that I discovered the true meaning of my differences.

Prior to elementary school, I was a sensory mess.

I was a very picky eater, refusing new foods because of their color or consistency or smell. To this day, I have not tried many fruits, vegetables and drinks. On many a night, my mother made me a PB and J so I wouldn’t have to suffer through one of her meals (like her stuffed peppers… ugh. What the heck was inside that big green thing anyway? I will never know.). I took small bites of everything I ate, as I would often gag on food.

I insisted upon a separate fork for each thing on my plate, and God forbid any of those different foods touched. I had to separate gravies and buttered foods from others with a napkin. My father finally threw a fit about my fork thing after a while. He was not very open-minded about my pickiness. Or anything else for that matter.

I had an aversion to toothpaste and brushing my teeth. The taste of the toothpaste, the feel of it on my teeth and bubbling up in my mouth, the sight of it in the sink as I spit it out… Back then, I gagged every single time I brushed my teeth. Toothpaste isn’t even a food, and it doesn’t seem like it should go into a mouth. It was and still is so disgusting to me. I still gag and sometimes even vomit from it.

I chewed my lips, the inside of my mouth, my tongue. I sucked on my own skin as it was a very calming feeling and plain taste for me. I bit my fingernails until they bled, waited a few days until they grew back, and bit them down again. There was always something in my mouth.

Sudden noises, high-pitched ones mostly, scared me. On the few occasions we went to fireworks shows, I would sob in terror. I think the last time I went, I watched from the car. It was a pretty thing to see, all those bright colors bursting out from each other. But certainly not worth all that noise. And balloons were the worst. I stayed far away from balloons. What a terrible noise it is, the sound of it being blown up and handled and then finally the crash of the pop. I so hate balloons.

The sunlight bothered me. It would wink at me through the trees. The shadows would move so fast by my eyes and I would try to follow those shadows and the movements of the tree branches. And then there were other things to see, the way the light fell on the grass and the houses, the way the light changed everything. It was all so much to take in. All those bright sights and interesting changes. I would wink my eye, hard. It was a tic, although I didn’t know it. And it felt good. I winked hard a lot in my early years, trying to absorb all around me.

My father picked on me about it, ridiculed me. I learned to hide that tic from others. Such a shame to have to hide something that feels so right.

I was a daydreamer (still am) and spent almost a whole year playing Wonder Woman in the shower. During that time, I didn’t even use soap on my body. The only reason my hair got shampooed is that my mother would do it for me (my hair is so thick, it was hard to rinse). My father used to tell me I stunk. Meanie.

I was paranoid. Probably because of warnings misunderstood and taken too literally by my mother, who used to tell me to behave in the stores because the manager was watching me on his camera. So I believed there must be cameras everywhere. Someone watching me everywhere. I was convinced there was a person in my closet, watching me. Under my bed. In the car behind us. In church. Peeking through the windows of our apartment, the windows of my bedroom. I never felt alone. Always watched.

That was difficult. And it has stayed with me, that paranoia.

In some ways I was like other kids. In others not so much. I didn’t play hard and fast and dangerously like the other kids. I enjoyed playing make-believe with my friends. I didn’t join in on sport games. I liked Disney World and airplane rides and the sand at the beach. I didn’t like the noise of the circus, a place I will never, ever go to again. I enjoyed taking baths and having my hair brushed and being hugged tight. I didn’t like the dark or the things I imagined to be hiding in it. I played pretend with my dolls and Barbies and Fisher Price “Little People.”

I feared strangers and their looks that I perceived as stares and their attempts to converse with me. I loved to draw and color and paint and practice writing my letters. I didn’t like roller coasters or rides. I absolutely loved my pink “Big Wheel.”

I wish I had known about autism back then. I would have talked to my parents about what I was going through. I would have been more accepting toward myself.

I am on the spectrum. We are all different. If you have met one person with autism, you have met one person with autism.

Girl in red striped sweater and red pants

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them?If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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