I cried on my son’s first day of kindergarten. As I held his little hand in mine, the school, a fairly typical elementary school, suddenly seemed enormous. Looking around at the other moms, I could see I wasn’t alone. There was an unspoken camaraderie, a mutual understanding that we were all experiencing a pivotal moment in our children’s lives. Gentle, encouraging smiles were exchanged, ones that said “This is tough, but it’ll get easier.”
For me, though, it didn’t. In fact, it got harder.
That first school year stands out in my mind as being one of the most difficult periods of my parenting journey. On a near-daily basis, there was something. A phone call from the principal. An email from the teacher. A pink slip sent home for me to sign. Another trip to the office. The constant, overwhelming frustration of wondering what I was doing wrong, why my kid was struggling so much more than his peers.
One day, the nurse called. He’d thrown up at school and needed to be picked up. But rather than concern or pity, that typical Oh, poor baby! mom instinct, what I felt first was relief. Thank God he’s not in trouble again. Taking care of a sick child is stressful, but dealing with a little stomach bug was a stress I knew how to handle. Keep him hydrated. Monitor his temperature. Get him applesauce, saltines, toast. Let him rest. Put a cool washcloth on his forehead. Rub his back. Comfort him. Repeat. But there’s no guidebook, no set remedy for behavior.
I was, quite simply, at a loss.
There were multiple meetings with the school counselor, the teachers, the principal. There was an IQ test given to determine if he was gifted or delayed; either could explain his difficulty in school, but it turned out to be neither. He was perfectly average; he understood the material easily, but not so easily as to be bored. He was smart, but not so smart as to feel unchallenged. He wasn’t struggling to learn; he was struggling to be. To be quiet, to be calm, to be focused, to be still. To be like everyone else.
In my most defensive moments, I wondered if perhaps he was just a boy, more prone to being rowdy and energetic. After all, girls tend to mature faster than boys. They also develop certain skills, including the school-required skill of sitting still and for long periods of time, more quickly. Surely other boys in his class were the same way? The sympathy on their faces told me all I needed to know.
Still, I myself have ADD, or attention deficit disorder (now called ADHD). As a quiet and well-behaved child, my inattentiveness was largely overlooked by teachers and by the time I was diagnosed, I’d already fallen behind. At least now I could prevent my son from facing that same fate.
I took him to a local therapy practice to have him formally evaluated, fully convinced he had the more hyperactive form of ADHD. We were told that testing would take two sessions, but he actually took three. Apparently, getting him to focus long enough to finish in the allotted time was quite the challenge, which only served to solidify my armchair diagnosis.
The post-assessment appointment, then, seemed like a mere formality — a meeting to tell me what I already knew and was extremely familiar with. Sitting across from the clinician, I felt calm and ready. Even a little eager. I was fully prepared for an official ADHD finding. What I was not prepared for, though, was her actual diagnosis: autism.
My initial reaction was one of disbelief, followed by irritation. Obviously, this clinician didn’t know what she was doing. He was showing clear signs of ADHD — hyperactivity, impulsivity, difficulty sitting still and remaining calm, constant fidgeting. But there was no hand flapping, no outbursts or meltdowns, no aversion to being hugged. He didn’t have any savant abilities or cognitive delays. In fact, he didn’t have any delays; he’d hit all his milestones on time. Where was she getting autism?
Once again, my own defensiveness had been pushed to the forefront. But as she explained her reasoning, I began to let my guard down. My earlier defiance gave way, morphing into something akin to understanding. Suddenly, all his quirks, the little oddities I saw on a daily basis, started to make sense. The way he would constantly repeat certain words or noises. How he would line his toys up instead of just playing with them. His extreme pickiness with food. How he would frequently ask me if I was happy whenever I wasn’t smiling.
Throughout the rest of our appointment, I kept my composure. I asked questions, took notes, and got recommendations. I made a mental checklist of next steps I needed to take. My focus was on the pragmatic, not on the emotional turbulence building inside me. The tears didn’t come until later, on the drive home, when it hit me: I was an autism mom. My experience of motherhood would always be different, just as my son’s experience of the world would be unconventional too.
It’s been over five years since that initial diagnosis, and there have been plenty of ups and downs. Navigating the IEP process. The trial and error of different treatment options. Having to hold my tongue every time someone tells me he “doesn’t look autistic.” The heartbreak at seeing other kids exclude him. The pride at seeing him succeed, knowing how hard he has to work. His sense of humor. His surprisingly insightful nature. The ongoing social struggles. Wondering if it’ll ever get easier. The frustration. The sadness. The loneliness. The constant fatigue. The crushing anxiety.
There’s the pressure, too, to give people what they want; an uplifting and inspirational story. One that says “I did it, you can too!” A tale of triumph in the face of adversity. A message of hope, one that echoes the unofficial slogan of motherhood, that being a mom is the most rewarding job in the world.
But the truth is, being an autism mom is really hard. My journey through motherhood doesn’t look like other people’s. It’s certainly not what I expected. Some days, I don’t feel fulfilled — I just feel exhausted. And you know what? That’s OK.