Earlier this week, I came across the terms “School Avoidance” and “School Refusal” for the first time. These phrases describe behaviors where a child actively avoids or refuses to attend school due to underlying challenges. Learning that this issue is particularly common within the autistic community prompted me to reflect on my own struggles with school and the lessons—both spoken and unspoken—that shaped my childhood.

According to my mother, I was never an easy child when it came to school, even as early as kindergarten. Considering most of the memories I still have from that time are of people scolding me or not wanting to play with me, I’m not surprised. However, I had not previously been aware that I struggled with it more than most five-year-olds.

Instead, when I started reading examples of school avoidance, I thought of one specific incident (or a school year’s worth of incidents, I guess) that has been stuck in my head on repeat since the 3rd grade.

That year, I had an awful teacher at school who made me feel like a complete outcast, who bullied me more than any previous teacher I’d had (and more than any of my peers, who I already felt estranged from). The anxiety and depression I felt facing each new day at school built up until I was physically ill. I had no idea what was happening. I didn’t have the verbiage or knowledge I needed to identify what I was feeling. I just knew I felt sick, and all the other times I’d been sick, adults told me it was a stomach bug. So, I thought I had a stomach bug.

But I stayed sick. Every morning for the better part of a semester—or really, for that entire year—I awoke to a roiling stomach and acid in my throat. After half a semester or so of this happening, the school started threatening my mom, saying they were going to hold me back (and worse, I’m sure, that’s just the threat that I heard). I went through endless doctor’s appointments to identify what was wrong with me, which ended in my being diagnosed as fat and given a journal to write down everything I ate to keep track of my calories. Because in the late 90s, the way to solve the obesity crisis was to give kids eating disorders.

In the end, I was told that if I missed a single day more of school, I would be held back, even though I was keeping up with lessons fine from home and even still passing. After that, my mom forced me to go to school every day, no matter what I said, and if I was feeling ill at school, my teacher ignored me.

At one point, I felt nauseous all day and, in the middle of social studies, had that feeling where you just know you’re going to puke. I tried to ask to go to the nurse, but my teacher chided me for interrupting. She told me I needed to wait until the lesson was over to ask for whatever I wanted. I remember curling in on myself at my desk, holding my stomach, clenching my jaw, desperately trying to hold back what I knew was inevitable.

One of my classmates, not even someone I was friends with, tried to speak up on my behalf. They said, “She really doesn’t look good. I think she’s going to be sick.” The teacher ignored them.

Then I puked. All over my social studies book. All over my desk. All over myself. Probably on the back of the person in front of me (sorry, whoever that was).

My teacher chided me for not speaking up if it was an actual emergency. She lectured me, saying if I really needed to go to the nurse, I should have just gotten up and gone. Then, she gave me a trash can and made me walk with it down to the nurse.

I still remember these moments with vivid clarity. I remember how dismissive she was. I remember her sharp tone. Her uncaring eyes. The staring of my classmates, some judging, some pitying. I remember feeling guilty no matter what option I chose, blaming myself for anything bad that happened because I’d brought it on myself. I remember telling myself how stupid I was. Belittling myself. Shaming myself.

That was the year I stopped eating breakfast—something I wouldn’t start doing again until I was 17 when I started taking a daily medication that required me to eat.

That was the year I resigned myself to the fact that no one cared how sick I felt—that my being sick was an inconvenience that would not be tolerated.

That was the year I learned to calculate my life in relation to weekends. I pushed myself forward, one agonizing step after another, looking forward to the days off when I wouldn’t feel so miserable. Friday afternoon and Saturday, I felt great. I could truly enjoy myself. Sundays, I spent all day worrying about Monday. My family stopped believing me when I said I didn’t feel well. My brothers outright told me that “everyone knew I was faking it” because I was only sick when I didn’t want to do something.

It became a habit of mine at school to write how many hours were left in the day at the top of whatever notebook I was using. Each half-hour, I would cross it out and write the new number down. I gave myself the goal of making it through the next half hour, then the next hour, then the next day. In this way, I made it through school.

In high school, my mom and I ran into my 3rd-grade teacher at a diner one morning. I spotted the teacher as soon as we walked in and made sure we sat at a table as far away from her as possible. I prayed she wouldn’t see me. I couldn’t enjoy my meal or the time out with my mom because all my attention was focused on willing her not to come over. But she did, of course. She told me how glad she was to see me. She said I was always one of her favorite students and raved to my mom about me. The contrast with my lived experience was like a slap to the face.

Of course, I didn’t tell her that she still haunted my nightmares. I couldn’t say that I hated school because of her. I smiled and nodded because, by that point in life, I’d long learned it was my job to minimize myself as much as possible for the comfort of others.

I didn’t talk about what happened to me in 3rd grade for a long time. I put it in a box which I buried in the back of my mind, never to be found. I was ashamed of what happened. I thought it was my own failure. I felt responsible for my own mistreatment. I saw it as something I brought on to myself. And that conclusion was supported by everyone else in my life.

After all, not even my own family believed me. I lost friends because I wasn’t any fun to be around, because I was always uncomfortable or feeling unwell. Teachers gave away awards every year to the students who missed the least amount of school.

I’m still working on confronting and untangling just how much this incident and the dozens of smaller, less remarkable incidents like this shaped my fear of social situations and ruined my self-esteem. In fact, it’s only been in the past couple of years that I finally unearthed this experience from its grave in the back of my mind. It’s taken years of therapy, learning about normalized forms of abuse, and reading so many similar stories from other people in the autistic community that I’ve begun to see that I was never the one to blame for my mistreatment. I was a child, and the adults in my life were supposed to protect me, care for me, and meet my needs. It was never my job to repress myself to make their lives easier.

When it comes to school avoidance, the focus seems to be not so much on how to make the experience less excruciating for them and more on how to force them to go whether they like it or not and ignoring the finer details that created the situation in the first place. It’s not far from my own experience, which was more than 25 years ago.

I don’t have much of a big takeaway this week other than to tell my own story and highlight this issue, which clearly still has a long way to go toward improvement. Kids don’t avoid school because they’re naughty or like to make life harder for adults. School avoidance is indicative of a more significant issue. One that can’t be fixed by ignoring it or slapping on a one-size-fits-all solution.

If we don’t start meeting kids where they’re at and listening to them—really listening to them—when something is wrong, then we’re just dooming another generation to spend thousands of dollars and years of their lives in therapy, trying to learn as adults the grace they should’ve been shown as children.

As a side note, I asked my mother a couple of years ago how none of the doctors or specialists she took me to that year recognized the anxiety for what it was, as I’m still amazed by just how badly the medical system failed me. She told me she actually brought that up herself at one point because that’s what she thought was going on, but they told her no. It couldn’t possibly be an anxiety disorder or panic attacks, because those develop in puberty. I was too young. So they did allergy testing to rule out anything causing the stomach upset, then settled on me just needing to go on a diet and called it a day.