Autistic Sensory Pain and the Medical Consequences

CW gaslighting, medical trauma, ableism

We need to talk about how gaslighting of autistic people’s sensory sensitivities can lead to poor physical health in autistic people. If you’re a non-autistic person and think “I would never do that!” I suggest you read this post on sensory sensitivities first before moving on. Autistic people have different sensory experiences, and when a parent either disagrees with or denies those sensory experiences, the impact it has on the autistic kid is gaslighting, even if it wasn’t intentional. Impact is greater than intent.

I talk a lot about sensory sensitivities on this blog, and about growing up not realizing other people experience things differently than myself. Autistic people often endure sensory pain silently because they are ignored or punished when they speak up. We learn this early on in our lives, anywhere between 4-8 years old I’d guess.

I want to talk about the physical health of autistic people and how the gaslighting of our sensory sensitivities teaches us to ignore our pain – whether it be physical or sensory.

Physical Pain vs. Sensory Pain – They’re Not Different For Us

There are many reasons why you shouldn’t gaslight an autistic person’s sensory sensitivities, but this is a really important one.

I use the word “Sensory Pain” instead of sensory sensitivities because especially for me, it’s accurate. I have hyperacusis, likely co-occurring with being autistic. Loud noises feel like my eardrum is being stabbed with a knife. It’s the same physical pain neurotypical people would experience if someone blew an airhorn right next to their eardrum. For me, I get this same pain from vacuums, dishes clinking, restaurant kitchens, lawnmowers, buses stopping, and more.

But tight/clingy clothing also causes me distress, as well as light touch. If neurotypical people experienced it, they’d probably say it was painful. But compared to my hyperacusis, it’s not as bad. However, it’s distracting and distressing and startling and sometimes infuriating – so maybe that is pain.

I use the term Sensory Pain because most neurotypical people don’t have any understanding of what we experience, and distress doesn’t seem like a strong enough word. It’s not just distress.

Here’s another example:

Any sort of mildly (not noticeable to NTs) spicy food is really really spicy for me. I’ve tried to eat neurotypical-perceived “moderately spicy” food and my mouth would burn for an actual hour, maybe 2 hours.

Neurotypicals don’t think sensory sensitivities are rooted in the physical, the physiological, but they really are. It’s just as real as you stubbing your toe. So what happens when we get gaslighted about sensory sensitivities? That it’s “not spicy” or “not too loud”?

We end up ignoring other physical pain too because we’ll just get told off anyway, right?
Because people don’t want to hear it and it’s not “that bad” since everyone’s telling us our other pain isn’t “that bad.” We end up going years with a herniated disc, joint pain from hypermobility, or pain from an injury that didn’t heal well.

I have a permanent pain disability from an injury, and I didn’t check it out for a month. My first reaction was “well it’s not as bad as my ear pain.”
Do you think anyone had ever taken my “it’s too loud” seriously? Nope.
Do you think I assumed everyone else just “dealt with that pain” too? Yep.

Only when my foot pain became so bad that I could barely touch the floor without feeling like I stepped on a nail did I get help.

Turns out that the answer for me is “don’t walk so much” but for other autistic people, their physical problem could’ve been treated or managed.

We’re Taught to Ignore Our Pain

Here are some people’s experiences of sensory pain:

“I only started wearing my sunglasses in 2015 (age 23) and my headphones in 2018 (age 26). If I forget/ break either, I can’t go out. I’m still finding out my normals and fixing things that feel uncomfortable. It’s not new. I’ve learned to ignore it because I was ignored.

“Thinking of my mom (usually supportive) who’s always like “yeah car’s light are annoying to everyone but you have to deal with it” when I cant leave my curtains open when it’s a bit sunny or else I’m just blinded even if I’m turning my back on the light”

“The AMOUNT of times I’ve been told “it’s not that bad” when I’m LITERALLY IN TEARS because I’m so tired of the noise/light/whatever sensory input it is, being so painful and just going on and on and on”

“When I was a kid and my mam/sister used to comb my hair and put it in a ponytail for me.  That was incredibly painful for me. They just called it the “ow” game. I soon stopped saying it hurt so much…”

“It takes so much for me to even say anything in the first place and then to just be completely dismissed… You just learn not to speak up for yourself after awhile.”

I want non-autistic people to think about this:

If autistic people are constantly told that their sensory pain “isn’t a big deal,” why would we assume you would take our physical pain seriously? And why would we tell you about it, when most of the time, you’ve dismissed our internal experiences from the start?

The Painful, Sometimes Deadly, Medical Consequences

I saw numerous replies to my twitter thread of autistic people who

  1. didn’t say anything because they didn’t think they’d be believed anyway
  2. were already assumed to be a hypochondriac by friends and family
  3. were told that their pain “wasn’t that bad” and that they were fine when they absolutely knew they weren’t.

Autistic people’s lives have been more difficult than they needed to be because they were taught their pain didn’t matter.

At least two autistic people said that their cancer got to a later stage because they didn’t trust their own pain perception since other people didn’t believe them. A lot of autistic people broke their bones, especially as children, without parents knowing or believing them, and have been left with pain and/or mobility issues as a result. Autistic people have broke their bones without even knowing it only to find out 10 years later in a doctor’s office.

This is because our pain level on a day-to-day basis is not a 0 out of 10. Other people assume it is a 0 even when we tell them otherwise. We learned to stop telling them.

We were simply taught to always look like a 0 out of 10, no matter how much pain we were in.

This is the result.

Here are some autistic people’s experiences of physical pain:

“Complaining to doctors about things that feel unbearable for me but they say isn’t a problem, only for them to then say I should have sought help sooner for things that felt mild in comparison.”

“I got to the point where I didn’t believe my own reality and I get treatment in time and it turned into stage 3 cancer.”

“Once went to a chiropractor who asked ‘How long have you been walking on a dislocated ankle?’ It turned out I’d been walking on a numb leg for months because my ankle was chewing through a nerve in my shin. When pain isn’t taken seriously we learn to ignore it.

“I went 2 days with a broken arm, and healed multiple broken fingers without seeing a doctor about it, despite having thrown up from the pain. Why? Because I’ve had acknowledging pain drilled out of me

“Me ignoring my (probably) herniated discs in my spine & joint hypermobility for years because I was raised to ignore pain because my problems are a burden to others.

“I have spinal issues that could have been fixed in adolescence and now likely cannot, because I was gaslighted into believing my pain wasn’t real

“I genuinely have no idea when I’m in pain or “not in pain”. Any pain that comes up my automatic reaction is to think it’s just something small unless someone else notices”

“I have so many examples of things that were going horribly wrong, that nobody would believe me about, and finally getting them addressed meant a new normal of not being in as much pain. I’ve endured so many things for way too long, all because nobody believes me.

“I have permanent nerve damage in my right foot from walking around on a broken toe on TWO separate occasions, which no-one recognized until after they healed wonky because I’d already learned by age 13 ‘not to make a fuss’ about the pain I was in. Take autistic pain seriously.

Here are more autistic experiences of physical pain, paraphrased from twitter:

  • Walking around with broken fingers and toes for weeks, told it wasn’t a big deal
  • 6 months of asthmatic bronchitis
  • Broken wrist untreated for 2 months – people said it was “just sprained”
  • Had 13 cavities, didn’t know they were in so much pain before getting fixed
  • People ignored stomach pain and nausea when there was something really wrong
  • Didn’t know the pain they were experiencing wasn’t typical and ended up tearing their knee
  • Has back pain for more than a decade and still hasn’t gotten help, worried won’t be taken seriously
  • Had migraines several days a week from sensory stimuli in US public schools. As an adult, only a couple a month.
  • Broke arm at age 6 and wasn’t believed by parents, later taken to ER.
  • Index finger hurts when it’s cold out but never got it x-rayed because they were mocked for being a hypochondriac
  • Thought an ace bandage wrap digging into skin was just as bad as a tag on a t-shirt, but the bandage was actually slowly eroding the person’s flesh and left a scar for over a year.
  • Walked around on a sprained ankle for months because people said it “wasn’t that bad”
  • Nearly died of gallbladder disease due to parent dismissing pain
  • Broke sacrum at age 11 but didn’t know until age 22 that it was broken.
  • Was told pain wasn’t real repeatedly, took 20 years to find out they had a serious medical problem
  • Worked after breaking a knee from falling off a bus, now sometimes needs to use a cane because of it. Didn’t realize it was different from other sensory pain.
  • Had a mouth and throat infection that parents ignored the signs of, “being over sensitive”
  • Arm broke as a kid at skating rink, ignored pain because people always minimized their pain, parent took them to the doctor the next day when it was even worse.
  • Broke their toe, later their ankle, and dislocated their shoulder – never went to the ER for it.
  • Knocked out from a horse after horse riding, tore their ankle, but didn’t want to get in trouble so didn’t complain about it. Never taken to a doctor and instead just limped for months, still has scar tissue.
  • Being told they were just “hypersensitive” or “just weak” led them to walk on 10 broken toes for five years, assuming pain with walking was normal.
  • Took years for them to realize they could take acetaminophen for joint pain
  • walked a half mile on a broken ankle at 8 years old because they were told they were “faking”

Acknowledge Our Pain

Remember that when you tell someone (anyone!) that something “isn’t that bad” you’re teaching them to ignore their pain.

Validating autistic people’s sensory sensitivities, not denying them, and not downplaying them, is one way to help prevent autistic people from being taught that their pain doesn’t matter.

Validation is necessary to make sure we know that our pain should not be ignore.

Don’t tell us to stop complaining if something hurts. Don’t tell us that “it’s okay” when it’s not okay. Don’t tell us that we’re fine when we’re in pain. Don’t make fun of our pain or laugh when we’re in distress about something that might “seem minor” to you.

Autistic people’s discomfort, distress, and pain matters.

You need to remind us of that everyday as we navigate a very painful world. It may save a life.

6 Replies to “Autistic Sensory Pain and the Medical Consequences”

  1. My poor daughter. I’m in the medical field and she never says anything but if I hear a cough or anything, I’m checking temperatures. Some people don’t know better, some don’t have insurance. But yeah, we live in urgent care. If I hug that child and it feels like fire, we’re going. If a cough doesn’t sound right or won’t go away,, we’re at urgent care.. She just HATES to go. She has had pneumonia and didn’t act like anything was wrong. In 2019 had strep and the flu (we now think it was COVID) and we were there. Kids can sometimes mask illness which makes it harder.

    It is, however, a shame that those incidents happen and have happened. This is why we need more resources and more people (and docs honestly) to educate some parents. Kids (especially younger ones) really just play through it so parents really have to pay attention. And for disabled children, we have to pay double the attention. We have to know our child. If my child doesn’t want to eat, something is wrong. If she says “I don’t want to take medicine” out of the blue, I know something is wrong. We just have to learn their language and actions.

    Liked by 1 person

  2. Thank you for sharing your (and others’) experiences. I have family members who are Autistic and this helps me better understand their perception of the world and how I can better help them. In a strange way, I am grateful I have hypersensitivity to touch. If someone touches me lightly, it is excruciating- and this experience helps me better empathize with my family members with autism and other nt people who experience sensory issues.

    Liked by 1 person

  3. Now i understand why doctors tell me i have high pain tolerance. It didn’t make sense to me before because i thought i was oversensitive to things like itchy clothing, noise, light etc. But i also fractured my pelvis twice (weak bones due to autoimmune issue). I was a college track/xc athlete. First time i had no idea, just thought it was a tight muscle. 2nd time i managed to continue running through it for a few days until realizing it hurt really bad. I actually remember the run where it broke, i was running 16 miles total and ran at least 8 at 6:30/mile pace through the pain. Yeowch!

    Liked by 1 person

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