Once, at a party, I saw a man who resembled my son Jack so much, it took my breath away. The way he spoke. How his hands twitched and danced.
I heard him before I saw him. His voice was several octaves too loud. He leaned in close to whomever he spoke to, until they stepped back themselves.
He walked the length of the room, asking other customers their name, their reason for being there.
I tried to guess his age. Thirty, perhaps? He was desperate to tell people he had autism – to explain who he was. He wanted to share his own story.
My mind wandered to Jack, tucked away in a college program thousands of miles away.
I thought about all the times we asked him to lower his voice, to keep his hands still. The times we practiced how close to stand when you talk to someone.
So often, I wondered if I was shaping and re-shaping him too much for the world’s liking. I worried I was trying to erase who he was - changing his own story to make it palatable.
But can we hear the story through the fog of symptoms?
The loud voice, the twitching, the breach of personal space.
Does he need to change for the world?
Or the world change for him?
What is the answer?
This is what I ask myself.
At the party, the young man eventually made way toward me. He offered to show me a video of him and his mom on his phone. I nodded my head and smiled.
People around us smirked. They rolled their eyes. With each reaction, my heart sank.
When Jack was diagnosed with autism, I felt like I had a clock strapped to my back.
Now, nearly twenty years later, I am still racing against time.
I am racing to explain him to the world and the world to him.
The stakes are so very high.
Autism is no longer cute or quirky.
Looking at the screen, I felt something raw and real unspool inside of me.
Autism awareness. The puzzle pieces. A month of blue.
Isn't this what it's all for?
To smooth out the edges until smirks become smiles.
I have never seen an old man with autism.
A little hunched, perhaps, maybe using a cane, his white hair in tufts around his head.
Where is this version?
Whenever I think about Jack’s future, my mind hovers on the practical.
Will he drive a car?
Will he manage money?
Will he rent an apartment?
Maybe.
Maybe.
That’s what I tell myself with a satisfied little nod. Maybe. After all, look at how far he’s come.
But is there a point where the progress stops?
When maybe becomes never?
Lately, I think of all that will likely never happen.
He will likely never drive a car, winding through back roads as autumn’s sun streams through the trees.
He will likely never run for office, or own a business, or plan a vacation.
He will likely never hold his own child.
Likely.
Never.
I know you want to stop me here. You want to remind me of hope.
I know all about hope. I subsist on hope. I breathe it in like barbed silk. Smooth at first, yet deceptively thorny.
Sometimes, hope is not enough.
This is the heartache with which I am familiar.
World, boy, world, boy.
I am caught in a battle when I long for peace.
This is the push-pull of advocacy.
My spirit is ragged.
Who will he be?
What is his future?
How does this all turn out?
Both need to change. That’s my answer.
Boy.
And world.
Oh mama. The analogy of the clock strapped to your back brought me to tears. Just today I pictured myself as a horse trying to run faster and faster, but the jockey keeps pulling on the reins. Progress is so slow. It’s so hard not to jump to the next thing and the next, trying to move something, anything forward.
My nearly 78-year-old father has autism. He was diagnosed at 70. It was very unusual, I realize in retrospect, growing up with a father who often times barely held it together, but managed to hold a job until taking an early retirement at age 56. He worked for the federal government and sometimes would nap on the floor of his office midday. I remember our family “friends” sometimes laughing at him behind his back. It was awful to become aware that he was amusing to them. He was never amusing to me – I was embarrassed of him in middle school, and later, defensive of him, and finally now just enjoying every moment I have left with him. It is a very cruel world for those with autism. My 17-year-old son, who is autistic, is growing up in a much different world. I really don’t know which one is better. Suddenly, everybody has a TikTok diagnosis – but it’s not the same, of course as truly living with autism and navigation a world not made for them. It’s not an accessory to wear, and you can’t remove it like one can with glasses or braces. I enjoy your writing—thank you for giving us readers a window into your world.