Spectrum Bridge

By Laurette Ryan | Illustrations by Lucy Young

He twirled, flapping his arms at the elbow. Oblivious to all others around him, he whirled like a dervish in the middle of the room. The other children backed away slightly, looking askance. Disapproval, even at that young age, was written all over their faces.

It was his brother’s preschool graduation party, a wonderful event put on by the school, where they rented a hall, got a kid-friendly DJ, and held a potluck dinner for all the children and their families.

I already understood he was different. I carried that information with me daily for years. I faced it with determination. I didn’t pray for it not to be true. I only prayed that I could give him the tools to have an amazing life like all parents do. He was smart. Actually, he was genius-level smart: taughthimself-to-read-at-age-two, double-promoted-infirst-grade smart.

As I stood on the edge of that dance floor, the reality of it came rushing at me like a hurricane. I would have broken down right then and there, except being strong is something children need in their parents. If you fall apart, their world falls apart. That is not an option. So, I stood. Then I waded into the crowd, tapped him on the shoulder, and urged him to come with me to get something to eat.

I felt bad. He was enjoying the movement, the music; he was happy in his own little world. But I saw the looks from the children who were confused by a behavior that seemed so disconnected from them. I saw the looks from the other parents who seemed to be thinking that my boy was a disruption, a behavior problem. The looks that discomfit any adult, crushing the confidence in your ability to parent. I imagined they were relieved that I finally took charge of that unruly child flailing about the dance floor and disregarding everyone else’s personal space.

We stayed only a bit longer. It was noisy and chaotic— never a good scene for children on the spectrum. I wanted to look polite. I wanted my other child to enjoy the normalcy of preschool graduation with all the other children. When you are the parent of a child on the spectrum, there are everyday, normal places and events you will leave—or never attend—because it’s just too much. Pushing the limits can lead to meltdowns or other socially embarrassing moments. It’s your job to know and monitor every situation, especially when your child is young.

I gathered my children, put them in their car seats, and began to drive home. I tried not to think about it. I didn’t want to dive into my feelings. I could feel the power of that hurricane coming right at me. I could not get that picture of my son, by himself in the midst of the crowd, flapping and spinning—in the midst of a crowd and all alone.

I started to cry. I reprimanded myself: “Stop. So, it was a little embarrassing. You’ve been embarrassed before—get over it.” My mind answered back with anger. I pictured those disapproving children and parents. “How dare they! They have no idea how he struggles!” I thought.

My heart broke more with every mile between the party and home, but it also responded, “This is not anger or embarrassment: this is fear. This is fear that in a group, he will be alone. People will back away from him in confusion. This is fear for his future, for connections and love and success and acceptance.” I felt like I had a glimpse of his future that evening—a little boy in the center of a world that drifted and moved away from him. It was an image that would frighten any parent.

When your child is on the spectrum, it is your job to be a bridge. A bridge between society (friends, family, the world) and your child. You are explaining daily to your child how society works, what is socially expected and appropriate. Sometimes you have to repeatedly explain norms to the point that you start to question yourself, especially when you start to elaborate the “why?” There are always whys, and if the answers don’t make sense, the whys don’t stop until you put your foot down and say, “Because that’s just how it is!” Your child may stop asking why, but they never really accept an illogical answer.

You also spend your days explaining to others that your child’s behavior is normal for someone whose sensory tolerance is so low that even the sound of running water in a sink is like the deafening sound of Niagara Falls. And if they can’t turn down the volume, your child will melt down due to no fault of their own. You are constantly trying to explain that your child is not this way because of bad manners or lack of discipline. These can be hard discussions. My child does not need your approval, but, on a certain level, I do.

Being a bridge is difficult work.

Although I have never prayed that my child would not be on the spectrum, I have prayed that life would be fair to him. That society would have patience and understanding for him. That the stigma of ASD (autism spectrum disorder), Asperger’s syndrome, autism, and PDD-NOS (pervasive developmental disorder not otherwise specified) would disappear. Through education, society would embrace my child and value him for his intelligence and gentle soul.

Being on the autism spectrum is hard. Being the parent of a child on the spectrum takes strength and stamina. There is no handbook or manual to read that adequately enlightens anyone to be a parent. Truly there is no handbook on parenting a child on the spectrum. You learn day by day, tear by tear—and also smile by smile. There will be smiles. There will be victories. Expectations and priorities will change.

The days of parenting a small child on the spectrum are the most challenging. They will grow you as a human being. They will test you to your core and strip away superfluous values. Having a child on the spectrum is a blessing I would never change.

My child is a young man now, so the challenges are different. As a parent, letting go of what others think has been the greatest lesson. We can only do our best each day.

When my son was seventeen, he did a video for his IEP (individualized education program) team at school. He was asked in the interview what he would like the team to know about him and his desires. He said this: “Walt Disney said, ‘I think it’s important to have a good hard failure when you’re young. I learned a lot out of that,’ and so I would like the opportunity to fall on my own.”

The opportunity to fall on their own—so hard for any parent to allow. I have learned to let him fall and was always sure to be there to encourage him to get back up.

And so I will forever be standing on the edge of that dance floor, watching and hoping for a world that can cross the bridge to understanding that many challenges of persons on the spectrum are invisible but very real.

Laurette Ryan is a professional in the health and wellness industry and has been a national fitness presenter for over thirty years. She is the author of four books on fitness, self-improvement, and life coaching and the mother of four amazing children, two of whom are on the autism spectrum. They reside in Massachusetts.