My son is 16 today. We’re going to make vanilla cupcakes and sugar cookies and go shopping for Nerf guns and Disney Cars toys.
There’s a man in town who breaks my heart every time I see him. He walks everywhere. You see him calamity-ing down the sidewalk, his backpack sliding down his arm as he juggles all the items he’s carrying. His hair is feather fine and greasy. His face is always dirty and his clothes are beyond saving. People avoid eye contact and give him a wide berth because he’s loud and he smells terrible. I can’t help but follow him and talk to him when I cross paths with him at the grocery store because I see my own son every time I look at him.
When Alex was younger, let’s say 6 or 7, I thought I had to use every day in April to make every person I knew aware that it was Autism Awareness month. I shared a different statistic or a link to an article or the ASA so they might make a donation. I wrote clever and gently emotional blog posts about the misadventures of parenting an autistic child. My tone was always upbeat and maybe cheekily stoic. If that’s possible. I’ve stopped as Alex has gotten older.
If you have a 6 or a 7 year old with Autism, the world has your back and you’re brave. When your child is 16 people get annoyed because he wanders in their path when they’re just trying to grab a few groceries and get out of the store before they see someone they know. People give him looks because he’s carrying a Build-A-Bear or a pillow pet and he does weird things with his hands. If you’re an adult with autism, maybe in your mid thirties, people give you a wide berth because you’re loud, dirty and smell like you walk the length and width of town twice a day.
When I talk to people about my writing, I’m often asked how I find the time to write a book almost every month. Don’t get it twisted. It doesn’t happen that often and the other question I hear a lot is “Why?”. But people are mostly (mildly) impressed because I have time for 50,000 or so words a month. It’s not that hard to believe if you take sleep out of the equation. When you have a child with severe autism, sleep stops being your friend and the nights are awful. Writing books in my head about wars and the politics of Pre WWI Europe and Russia was how I kept my brain from spiraling during the quiet hours of the night. I just repurposed that time into physical writing and that’s how we got here.
If you have a child with autism you go to assheaded lengths to avoid the quiet moments in your head and you save yourself by laughing as much and as often as you can. If you’re smart. When it’s quiet and there’s nothing to laugh at you ask yourself the hard questions and you worry about things that can only hurt your heart. I worry about what’s going to happen to Alex when I’m not here anymore and how much of a burden he’s going to be on his sisters’ futures. I worry about him being the man no one wants to look at or stand next to in line at the grocery store. I know the life expectancy for a woman who can’t fall asleep without a sleeping pill, a tranquilizer and smoking a few bowls isn’t that generous. I’m going out like Michael Jackson or it’s going to be cancer.
If I see 60 I’m going to be quite nonplussed. I write like my ass is on fire because my books will exist as long as there’s an internet and my girls and their children might be able to find more clever ways to market them than I can. I write because it might save Alex later. The services for people with autism wanes as they become adults, as does the compassion of those around them.
Autism Awareness month isn’t the megaphone for advocating and support that it used to be, for me. Now, it’s a month of reflecting on how much we’ve lost or what we’re never going to get. It’s also prom season and I see all the things Alex isn’t going to do with his peers. He isn’t even in high school. I’ve homeschooled him for the last five years because there aren’t enough resources in the school system and we couldn’t get to the root of what was scaring him bad enough to wet his pants every time I dropped him off. But he’s never going to ask a girl (or boy) to prom, drive a car or graduate from college. Autism Awareness month has become a month of disappointment as I’ve grown to realize that all the awareness, sympathy and empathy is reserved for toddlers and younger children. The awareness and support slows to a trickle and then becomes a negligent drip as autistic children become teenagers and adults. People stop making eye contact and the gentle, patient smiles and nods dry up by the time there’s acne and a few intrepid chin hairs.
It’s getting harder to write about Alex because I feel myself becoming more bitter as he gets older. I used to push for some intellectual or emotional growth every day. I wanted him to be better at telling time or tying his shoes because in my head, those were one less thing my girls would have to struggle with, when I’m not there. But the list of things I have to teach him keeps getting bigger and the hours get shorter. How do I teach someone with the intellectual maturity of a 4 year old to shave? How do I make the world easier for a man who will never be older than 6?
My little boy is 16 today. Instead of looking forward and wondering where he’ll go to college or when he’ll start his own family, I worry about how much less there is for him in the world as he gets older. I worry about how much taller he is than me and what we’ll do when he realizes he’s already stronger. I pray he’ll get to live with me until I die and he doesn’t have to go to a home or spend his days medicated into passivity.
I stopped writing about parenting an autistic child because parents like me don’t need another brave face or to hear an exhausted mom say “Fuck Autism.” in every way she can articulate. Mostly, I realized I don’t like a lot of the people who blog about parenting. Especially those with disabled children. I can always see their forced smiles and I catch the panic in their eyes, I can hear their internal screaming as they laugh about scrubbing poop off walls and tantrums in Walmart. Stop trying to make it look fun and easy. Stop telling the rest of us that we have to act like this is just fine. Quit lying.
As the mother of a 16 year old with autism, I just ask that you be kind. When you see a that man in the store, don’t look away and let him struggle on his own. Know that he’s probably lost his mother and she tried her best to make him as strong as she could but there just wasn’t enough time. Remember that the world got harder and less patient as he got older. People cared less because he wasn’t small and cute and the people he spent his whole life depending on have died or have lives of their own. Autism doesn’t go away as people get older, we just become less aware of them.