When my autistic daughter was four years old, she fell on a very solid piece of wooden furniture and fractured her wrist. She didn’t cry out in pain. She didn’t tell us her hand hurt. Instead, she was unusually solemn and kept to herself. We were at a family gathering at the time, and all I noticed was her playing quietly on her own. Ordinarily, she would have played with her cousins and run from one end of the house to the other. This time though, she just stuck to me. My husband and I had no idea she had just broken a bone.
One of my husband’s relatives, a doctor, suggested we take her to get an X-ray, just in case. We spent the evening at the emergency room, and the doctor on call showed us the X-ray of her fractured wrist. I was horrified. She needed a cast for the next three weeks because of her greenstick fracture.
“She’s very brave,” the doctor smiled. He meant it as a compliment – as an indication of the calm, fearless person she would become. But what I saw was a worrying signal: how good my daughter is at masking – pretending she was okay.
Helping my daughter notice what’s wrong is the first step towards helping her learn how to cope
Interestingly, this stoicism doesn’t apply to minor discomforts. In contrast, when my daughter has a wobbly tooth, she becomes very dysregulated. She whines, moans and nothing can seem to make her feel better. Asking her to “stop whining” would simply make her more defensive and upset. When I’m regulated, I take a deep breath and calmly ask her what’s wrong. I have to soften first, to encourage her to relax.
“It’s my tooth,” she’ll finally say. “It’s wobbly.” Helping her notice what’s wrong is the first step towards helping her learn how to cope.
I see so much of my own struggle in hers. When I am physically uncomfortable, I can’t always verbalise it. It’s this ache in the background that reduces my capacity to be patient. When I’m having sensory overload from a too-tight bra, or if I have a toothache or feel too hungry, then I’m much more likely to feel irritable.
Mouth ulcers are another source of deeply uncomfortable physical pain for my daughter. This is something she might not always realise either. When she’s irritable, I take a deep breath and ask her what’s bothering her. “I have an ulcer in my mouth,” she’ll frown, and I’ll soften in sympathy. I hate mouth ulcers, too. The pain of a mouth ulcer can eclipse everything else in my day. That’s when I’ll offer her some pain numbing options.
The great irony is as much as mouth ulcers can consume my entire day, I gave birth to my daughters without any pain relief. Both births were intense experiences, and my entire world shrunk to riding the wave of each contraction until the blissful release of birth. I refused any kind of pain relief because I did not want to be disconnected from my body’s signals. I trusted that my body could birth my daughters, and I just needed to be left alone with my husband to protect my birthing space.
Dental procedures are another huge trigger for me. My previous dentist never bothered using numbing agents before inserting needles into my gum. Because of that, I was always so shaken after my dental appointments, and my husband never understood why. After feeling increasingly unsafe and uncomfortable, I listened to my intuition and decided to shop around for a new dentist. I found one who introduced me to numbing gel to reduce the discomfort of the needle.
My experience of neurodivergent pain is different to pain experienced by a neurotypical person, but it’s no less valid
My experience of neurodivergent pain is, by definition, different to pain experienced by a neurotypical person. Mine isn’t a linear pain scale – so it might not make any outward sense. But though my experience of pain might be unusual, it’s no less valid.
As I become more confident as a neurodiverse woman, I’m also getting better at asking for help. These days, I know it’s more than okay to ask for pain relief, or a cosy blanket to cover my cold feet when I’m too tired to remember to wear socks. Even if comfort and safety feel harder for me to reach, especially on tricky days, I’m no less deserving of them. I hope I can demonstrate to my daughters that there’s no need to put up with pain or discomfort to fit in – no matter how big or niggling it might be.
* Author’s real name is not used
