My Autism Story

Amy shares her attempt at trying to explain what autism is like from her son’s perspective.

My name is Barclay.  I am almost four years old.  I have autism.  My mom wanted you to know what autism was like for me and even though I can’t tell you myself, she understands me well enough that I trust her to get it mostly right!

Just like every person without autism is different, every person with autism is different. My autism story won’t look like anyone else’s autism story.  But maybe mine will help you understand the autism of someone you know a little better.

For a long time, I couldn’t speak.  This frustrated me a lot because I couldn’t ask for a drink or a toy.  Then my parents started teaching me sign language.  Finally, I could let people know what I wanted.

Eventually, I was able to make words.  I can talk pretty well now.  But even though I can speak, it doesn’t mean I can answer your questions.  I wish I could, but I am just not there yet.

What I can say is the lines from my favorite movies!  When I watch a movie I like to watch the same scene over and over again until I have it memorized.  When I don’t know what to expect, things can be confusing to me.  When I memorize a movie, then I know what is going to happen.

I like to play but the way I play is a little different than most kids.  I like to play tag and chase with my friends.  But when I have my toys I often prefer to play alone.  I like to do the same things with my toys over and over again, like lining up my trains or crayons.  I like things to be in order like ABCs and numbers.  Repetition is my way of trying to understand the world around me.  When someone is playing with me that is difficult.  If I have a toy and someone else wants it, that disrupts my routine.  My parents and therapists are working on this with me, so please be patient.

Doing things the same way is a big part of most of my life, like the way I eat. This sometimes worries my parents.  They wish I’d eat a bunch of different foods and I really don’t want to. I don’t like the taste of most food.  I don’t like foods that are too hot or too cold.  I don’t like foods that have too many flavors or textures.  I wish I liked foods that other kids do like ice cream and french fries.  Maybe one day I will.  For now, this is who I am.  My parents give me vitamins and my doctor keeps a close eye on me.  She says I am healthy and that’s what is important.

I love to be outside and take walks.  When we take a walk my parents have me wear my tether.  It’s a long coil with a Velcro wristband on one end for me to wear and one on the other end for my mom or dad to wear.  It helps keep me safe. They don’t want me walking in the street because of danger.  But I don’t understand danger.  I can repeat a line from a safety video I’ve watched about crossing the street.  “Look left, look right, look left again.” That helps me know what to do.  I just don’t know why I have to do it. I am sure one day I will.

I like people to be happy.  But I know sometimes people aren’t happy.  Like if my mom picks me up to put me in my high chair and I don’t want to be put in my high chair I might bite her. I don’t have words to tell her I was still putting together my puzzle.  Biting is often the only way I can let her know I don’t like what she is doing.  She makes a funny face when I do it.  I think this means she is not happy.  Sometimes my parents practice making funny faces with me.  There is a funny face they make they call “sad” and another one they call “mad”.  I like to play the game, but I don’t really understand it.  I know one day I will.

I think the most important thing I want you to know about my autism is that I am trying my best.  My parents are trying their best.  My therapists are trying their best.  I am so lucky to have so many people helping me be my best and my best will change.  I will learn.  I will grow.  But for today, if things in my family don’t look the way things look in most families, please know we are all doing the very best we can and we are pretty proud of that!

Love,

Barclay

 

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Author: bigabilities

Amy Nielsen lives in Orlando, Florida. She is the proud mother of four children ranging in age from 3-30! She and her husband, Brent enjoy sports and traveling. Amy is a former teacher with 20 years experience, a freelance writer, and special needs advocate. Her mission is to help educate and empower families of children with disabilities to focus on their child's interests and strengths.

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