Two years into Z’s head injury we went to a pain clinic. The program was for families with a teenager in chronic pain, and people flew in from all over the country. Z was the only musician who couldn’t play music anymore. But there was an all-state field hockey player who hadn’t played in years but still went to every practice. There was a girl who’d been a ballerina her whole life and then suddenly couldn’t dance: she’d grown half a foot, and now her body was built for basketball. Her proprioception was off and now movement felt like violence.
About an hour in, I understood two things. First, everything they were telling us to do was what doctors had been telling me to do for Z for two years — and I hadn’t been doing it, because the things are boring and I didn’t trust them and I wanted there to be something else. Second, every parent in that room was autistic. The whole program was a parent intervention. The kids were only there because no parent would come to a thing called What You’re Doing Wrong.
Leading up to this: doctors kept telling me that Z feeling pain didn’t mean his brain was getting more damaged. He’s feeling pain? We’re done. Stop the exercises. Then the pain would feel worse, and Z and I would demand new tests, and the tests would show nothing was getting worse, and I’d be so angry I wanted to sue everyone. That exact story was all over the room: parents hunting for some other cause, because the remaining explanation was us not following orders.
Here’s the science the clinic taught, which I could finally hear once I understood whose intervention it was. Pain is output. It’s not a meter reading damage — it’s your brain issuing a signal, and the brain learns what to issue. Touch a stove, and a normal brain files it away: don’t do that. A perseverating brain files it differently: there’s a stove in this house, there’s a stove, there’s a stove.
One in four people will have chronic pain at some point, and most of them adjust, some without ever calling it chronic pain. What makes pain take over a life isn’t usually the injury but the brain not being able to redirect. And low ability to redirect is the definition of autism.
Also, autistic people have a survival skill of mislabeling our own sensory wiring as toughness. Me: I don’t feel heat and I get burned all the time. That’s not high pain tolerance, that’s sensory integration dysfunction — missing output. Meanwhile I process cold as actual pain and wear a coat in weather nobody else considers weather. Too much signal, too little signal, never the normal amount: that’s autism in every domain. Pain is one of those domains.
The clinic also said something I haven’t stopped thinking about: chronic pain patients are the loneliest people there are, except for autistic people. Loneliness isn’t a mood, it’s a disorder, and it travels with chronic pain — which means an autistic kid in chronic pain is getting it from both directions, and his brain treats the pain and the loneliness as one fused thing. The longer nobody intervenes, the better the brain gets at reminding him. The pain isn’t worsening. The brain’s commitment to it is.
So what works is exactly the list you’ve been ignoring your whole life: exercise, regular sleep, going outside in daylight, eating like an adult, seeing people. Plus one trick that sounds fake and isn’t — when the pain spikes, put your whole face in cold water. It switches the brain off the pain channel. Not for long. But doing it every time teaches the brain there’s no reward for ringing the alarm, and the alarm rings less.
CBT doesn’t work for autism — it runs on the frontal cortex, and if we could leverage self-discipline to change our lives we wouldn’t have autism. But chronic pain is the exception, because pain functions like an external deadline. We can’t do discipline for abstractions; we can do it when something is ruining our lives in a way we can feel. The clinic’s whole bet is that the pain itself supplies the urgency the autistic brain is missing. It’s the only context I know of where CBT works on us.
So the clinic worked on us, eventually — but not because the science was new. The science fits on a post-it note. What took two years was the diagnosis nobody was willing to say out loud: the kids weren’t refusing treatment, the parents were. Every demand for a retest was me looking for a cause that wasn’t me. The program never confronted us about it, because you can’t — we’d have left. They just kept calling it a clinic for teenagers, and waited for each parent to look around the room and recognize the place.
Z kept in touch with the kids. The compliance problem was ours — the parents enforce the rules or nobody does. But parents can’t fix the loneliness half, and the clinic knew it: the kids left with a group chat, the only other people on earth who understood chronic pain. It didn’t last years. It didn’t need to. Each kid got to watch the others move forward.
I’m starting a small group for autistic people with chronic pain, because I want to see what happens when we talk about the pain without having to explain the autism first — the sensory problems, the perseveration, the routines we can’t change, the loneliness, and the constant question of whether to listen to your body or teach your brain to stop sounding the alarm.
We’ll meet on Zoom once a week for six weeks. There are four spots and two are taken. The cost is $195.
If you want one of the last two spots, reply to this email and tell me a little about yourself. We’ll pick a meeting time that works for all of us.
