Scenes from life as an autism mom

It shouldn’t have surprised me. Still, it did.

We were in the sun room – my son and I – the cozy side room that doubles as my office/writing space and Ben’s I-want-to-be-alone hang out space. We had just created his first resumé, and were now on the career page of a well-known gaming retail company. Having just turned 18, and just a few weeks away from his high school graduation, Ben was eager to score a summer job where he could talk about video games all day.

He was wrapping up the application process, checking the self-identification boxes for ethnicity, gender, and veteran status. Finally, the last one.

Do you have a disability?

He was sliding the cursor to “No” when I stopped him.

“Ben,” I said. “Look at the list they’ve given on what qualifies.”

He looked, and it clicked into place. Autism. Autism is a recognized disability.

Since his diagnosis in the first grade, my life as a mom with a child on the spectrum has been a mix of light and funny highs, teeth-clenching lows, soaring triumphs and deep heartbreaks.

There were years of little-to-no socializing (outside of the structured skill-building groups that my husband and I paid for), most of the kids at his elementary and middle school having decided that he was too “different” to hang out with. When his weekends and summer vacation stretched out with no plans, an invisible neon sign flashing autism autism autism haunted me. When I had to quit a job I enjoyed (and accept a toxic one close to home) during his anxiety-riddled year in seventh grade, the neon sign took on an insistent buzzing that jangled my nerves and disrupted my sleep.

This era ended – blissfully, thankfully – when he chose to attend an out-of-district technical high school and found a crew of real, authentic friends. At this school, my son discovered a passion for film and film making. That passion turned him, for the first time, into an honor student. For four years, that neon sign faded into the background. Even our loud, frustrating, unproductive arguments over what constituted “enough” screen time, fresh air, vegetables, or exercise felt typical, not exceptional.

I’ve heard the expression “if you’ve met one kid on the spectrum, you’ve met one kid on the spectrum.” For me, the spectrum is a general sense of delay. At 18, he’s applying for his first real summer job, when some of his peers have been working for years. At 18, he’s still not quite ready to drive or navigate the MBTA on his own, unlike his neuro-typical 15 year-old sister. At 18, I still have to gently remind him to lower his voice in restaurants or hold the door for the person behind him. At 18, that neon sign crept back into my life as I sensed his growing anxiety at leaving home in the fall for film school.

Do you have a disability?

As I looked at the screen, my heart tugged with worry. Will they interview him? If so, will they judge him unfairly? If he’s hired, will customers be mean to him?

And of course: Will he be OK in college? Will he make friends?

“Will I always have autism, or will I grow out of it?” Ben asked me, moving the cursor from “no” to “yes.”

He was unfazed by the question, and by the act of clicking “yes” on the job application. In that moment, I could see that he wholly accepted – and liked – who he had become. The grip on my heart loosened. I could – and will, I’m sure – worry all I wanted, but he was going to be OK. He would take life at his own pace. Steadily.

“Yep,” I responded, aiming for the same nonchalance as my son. “But it you’ll always get better and better at figuring it all out. We both will.”

April is Autism Acceptance Month.

Three books with characters on the autism spectrum: The Rosie Project, by Graeme Simsion; The Curious Incident of the Dog in the Night-Time, by Mark Haddon; The Girl with the Dragon Tattoo, by Stieg Larsson

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: