Autism Changed Me
Through the first class curtain I could see a man’s hand hovering over a book.
It was not a young hand. It appeared weathered as it turned the page.
Watching his fingertips traverse the words, my mind wandered until it settled where it often settles.
My son Jack.
The second oldest of our five children, Jack is diagnosed with autism. He was born a statistic, a plot on the bell curve, and a piece of the pie chart.
It is a scab I like to pick every now and again.
I see an older man reading his book in first class on an airplane. I watch the overhead light glint off his wedding ring. I see him shake a small bag of chocolate chip cookies into his palm.
And I think how first class means nothing to Jack.
I think about how he may never get married.
I think about how, at eighteen, we had to get guardianship to safeguard his finances.
From there, I jump from my emotional springboard, hopelessly light and yet heavy-hearted.
I catastrophize. When it comes to autism, I turn every little speedbump into a disaster. I imagine the worst outcome.
I wasn’t always this way.
Autism changed me. Sure, it made me aware, enlightened, curious, accepting.
It also made me wary. Skeptical. Watchful.
In the now.
This is where I work to stay.
Desperately, frantically, I try to keep my brain in the present space, rather than spiraling backwards into the dark pool of regret, or leapfrogging forward to a future I can’t quite see.
I used to say there was nothing this boy couldn’t do.
More and more I realize these words are little more than poetic gesture—as if autism is something can outrun or recover.
You can’t outrun it.
There is no cure.
You simply live around it, and beneath it, and with it.
The truth is, there is no manual for navigating life with a young adult child on the spectrum.
While culture has somewhat normalized the younger version of Jack—the little boy who threw himself on the floor of the grocery store and asked people their birthdays and watched Disney movies—a six-foot-five man is something else entirely.
He isn’t cute anymore.
He is tall, and sometimes surly, and often misunderstood.
Bigger kids, bigger problems. This timeworn phrase rises, unbidden, to the surface of my subconscious.
The what-ifs crowd my mind like black crows in a cornfield.
What if he has an encounter with the police?
What if he misreads the social cues in a sexual circumstance?
What if he’s offered alcohol and drinks excessively?
Society has a tendency to box up autism into a specific span of time. Toddlers. Kindergarten. Elementary school.
We get twelve years, tops. Twelve years where the spectrum disorder is somewhat amusing. Quirky. A story we all want to share about the little kid we saw in aisle twelve.
During puberty the floor of the grocery store becomes holes punched in the wall in a hormonal fury.
Sign language class gives way to behavior plans.
Autism doesn’t end after high school.
It won’t end when it’s time to find a job, or a place to live, or figure out healthcare.
It is a game of push-pull, progress versus joy, boy versus diagnosis, hope in the darkness, part wild-child, part lonely chase.
At the same time, it isn’t a game at all.
I wasn’t prepared for this.
I’m not cut out for it.
I can’t quite see the end.
Maybe there is no end.
Maybe there is a beginning and somewhat of a middle and mostly a sparkling magic slippery riddle in the shape of a young man.
I can’t help but think that maybe, just maybe, with enough light and breath and air, his flame could become fire.
And he’ll set the world alight.
I believe in him. I always have.
He loves chocolate chip cookies. He used to make them for his dad.

March 6, 2023 @ 9:13 pm
We never fail to read your weekly blog Carrie, and have followed Jacks journey since he was 5 and our granddaughter Maddy (we are her grandparents who care for her and her siblings) had just been diagnosed at 2. Maddy is on the lower end of the spectrum but there are so many ever present social skills and other issues which we continually try to understand and work through with her and the help of many branches in the medical world. Sharing your days, weeks, months and years with Jack on a weekly basis has been such a great help bringing relief for a while as we share your feelings of anger, frustration, questions, tears, and a good helping of smiles travelling along this road of twists and turns where there are no concrete answers but relief in knowing we are not alone.
Thankyou for the gift you have and use with such dedication in putting into words what we who read your blogs find solace in.