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Most People Don’t Realize My Son Has Autism. I Want to Change That.

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Aedan was our first child, the perfect, beautiful baby I had dreamed of. He was a “high needs” baby who struggled with oral motor issues and found sleep difficult, but he evolved quickly into an easy-going and inquisitive toddler.

By 2, he knew all of his letters and could count to 20. By 3, he was using words like “hypothesis” and telling everyone that he wanted to be a paleontologist when he grew up. By 4, Aedan was reading to his preschool classmates and correcting his teacher in circle time. He loved playing with adults and children alike, and if you had suggested to me that he would ever end up with an autism spectrum diagnosis, I would have laughed and called you delusional.

Just before his fifth birthday, Aedan began to develop anxiety and what seemed to be OCD-like symptoms. His hands were perpetually “sticky” and he washed them incessantly. He refused to buckle his own seatbelt (it was “sticky,” too), to walk on grass, to enter public restrooms (the sounds of toilets flushing and hand dryers were overwhelming) and to touch paint, shaving cream or Play-Doh. When things were “different” than the way he imagined them to be, he got upset or angry or panicked.

autism spectrum disorder the mighty

Our diagnostic process was frustrating to say the least. We were bounced from pediatrician to counselor to psychologist, none of whom seemed to be able to put their finger on what might be the core issue. One professional even suggested that I was projecting my own anxiety onto Aedan and that there was no real issue at all. Finally, a new pediatrician asked me, “Has anyone ever considered autism spectrum disorder?” I stopped in my tracks. I’m fairly certain my mouth dropped open.

I was certain my child did NOT have autism. Autism was the nonverbal child I used to babysit. Autism was my friend’s daughter who could not enter a store without a meltdown. Autism was the student in my class who gave me a huge hug every morning and sat by my desk to chat but could not bear to have a conversation with his peers. Autism was NOT my bright, bubbly, social little boy… or was it?

The next few months were a whirlwind of evaluations and doctor’s appointments. I began to see the little things I had glanced over for so long… Aedan not looking me in the eye was not just because he was occupied. His sensory anxieties were not just a phase. His resistance to things outside his own schema was not a preference… it was an inability to process.

We received Aedan’s diagnosis last March. By that point, the words “autism spectrum disorder” were not a surprise. I had prepared for them and in a way already accepted their meaning. The diagnosis was almost a relief. It meant we could begin to heal and find help. It meant our insurance would have to pay for occupational and speech therapy. It also meant that my whole world had changed.

A friend of mine whose daughter was diagnosed with ASD years before my son told me, “It doesn’t change who he is.” When I repeated this to our developmental pediatrician, she smiled and said, “Yes… but in some ways it does.” At the time I was confused and almost insulted. In some ways, I think I had viewed the diagnosis as the end of this difficult journey we had been on. I was soon to learn that it was really just the beginning. I left the office with a stack of referrals and recommendations.

In the weeks and months that followed, I learned to be an autism mommy. I learned that while my son is still the same bright, bubbly boy he has always been, sometimes I need to reframe the way I look at him. When I am frustrated that he is not listening, I need to remove distractions instead of demanding more attention. When he breaks down because the day is not going as planned, I need to offer tools and help him find a way to regulate himself. When he is turning somersaults on the couch, I cannot expect him to just sit still.  I need to offer an alternative that can provide similar input. When he does not understand sarcasm or metaphors, I have to find a way to patiently explain.

autism spectrum diagnosis the mighty

In so many little ways throughout the day, I have had to retrain my own brain to remember that Aedan’s interprets things a little differently.

Aedan is now 7 years old. He is passionate, loving, kind and blindingly intelligent. He can tell you anything you’d like to know about just about any dinosaur or animal ever in existence and gets teary-eyed over the idea of trees being chopped down. He loves Elsa and made it his goal to meet every Disney princess at Disneyworld last year. He can follow any Lego instructions in existence and build his own breathtakingly imaginative creations as well.

He is the best big brother I have ever seen and loves his family and friends with an intensity that blows me away. His diagnosis does not define him… but it does shape who and what he is.

Most people who interact with Aedan on a casual basis have no idea that he is not a neuro-typical child. He tends to come off as a little energetic, or slightly immature, or a little “quirky,” but unless you happen to witness a meltdown, Aedan does not fit what the majority of the world views as “autism.” I want to change that.

Autism is not one thing. The autism spectrum has a million different looks, thousands of colors and shades. Aedan is a snowflake. A beautiful, intricate, amazing, AWESOME unique being.

There are millions of snowflakes like and unlike him around the world, each their own combination of strengths and challenges.

I love a snowflake. Do you?

This post originally appeared on “Finders Seekers.”

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Originally published: April 3, 2015
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