Autism entered the vocabulary of our household four years ago when my son Liam got his official diagnosis on my 32nd birthday. On that day, I wrote an aching, heart-sore letter that shared my grief and worries about my son's diagnosis.
My husband and I cried, argued, and worried about how we'd go on, but somehow a year passed.
And in that year, we read dozens of books about autism and tried to navigate all the services we needed to help our boy. We spent a lot of time and money chasing "cures" and feeling like we weren't doing enough.
By the time my 33rd birthday rolled around, things were still tough. Liam struggled to communicate and he bit and screamed to show his frustration; my husband stumbled his way through a PhD program; my youngest son entered the terrible twos; and I worked full-time to support us — but hope and laughter were creeping back into our house.
To celebrate how much could change in a year, my husband and I went to the Milwaukee Art Museum on my birthday/Liam's diagnosis day. I saved my ticket stub, and my friend made it into a pendant, which I still wear when I need a reminder of how much can change in a year.
And so another year passed.
And in that year, I began learning more about neurodiversity. I met adults with autism, and we began seeing a different path for our son than the grim road that unfolded before us on the day he got his diagnosis.
On my 34th birthday, I wrote a column for the Autism and Asperger's Digest and mused, "The Game of Life with ASD is not one of wins and losses. It's not one where the mom, dad, caregiver, or child who pays, sweats, and bleeds the most wins. It's not one where competition and comparison serve any useful purpose. This game is like the games I play with Liam: it's about cooperation, connection, engagement, and having fun." And so, the attitudes in our house slowly shifted. We were working with Liam, not against his autism.
And so another year passed.
And in that year, we learned how to support Liam's interests. We tried and failed at many therapies, but a few stuck. Our lives fell into rhythms that felt normal, and on my 35th birthday, I was writing a novel and didn't want to write about autism. The diagnosis that had nearly broken us three years earlier wasn't such a big a deal. Liam was just Liam, and we loved him fiercely. So we had a small party and went to the park.
Which brings us to this year. Last Sunday, I turned 36. That means it's been four years since Liam's diagnosis. I can't believe that much time has passed (remember how long 4 years seemed in high school?), and here's all I want to tell you about what happened on my birthday this year: Liam ate pizza.
And it's a really, really big deal.
But, what's so important about pizza?
Pretty much everything.
You see, four years ago we heard that a gluten and dairy free diet would cure Liam's autism, and so we stopped feeding Liam pizza (his very favorite food). We stuffed him full of supplements, controlled his every calorie, and watched him for changes.
Sure, we saw some positive GI effects along the way, but he didn't magically stop being autistic. And so this year, we celebrated with pizza because we're in a different place than we were four years ago. So often a symbol of autism is a puzzle piece, a symbol that some autistic people and disability advocates disapprove of because it implies something is missing or incomplete. I used to have a puzzle piece bumper sticker on my car. But this year, I removed it because it no longer symbolizes autism for me. Now, four years after the diagnosis, a gooey piece of pineapple and ham pizza is the real symbol of autism acceptance in our household.
These days, we're no longer looking to cure our son; rather, we're now embracing his difference and trying to help him succeed in ways that are best for him. We've stopped pushing to make him normal — for example, I've finally accepted the fact that sitting in a classroom desk all day is not a reality for him and that's okay. Now, we're letting him be his loud, silly, smart, bouncy, cuddly, engaged, autistic self. We're teaching him in ways he can learn; we're listening to what his behavior and words can tell us; and, we're more connected as a family.
Jamie Pacton lives near Lake Michigan where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons, Liam (6) and Eliot (4). Her writing has appeared in the Autism and Asperger's Digest (2011-2013), Parents, and the book collection Monday Coffee and Other Stories of Parenting Kids with Special Needs. Find her at www.jamiepacton.com, Facebook (Jamie Pacton), and Twitter @jamiepacton
Photos: Pineapple and ham pizza via Shutterstock; all other images provided by Jamie Pacton