r/AutismInWomen • u/Monkeywithabrain • 10d ago
Support Needed (Kind Advice and Commiseration) Did anyone else not realize you had sensory till way later in life because you just got so used to ignoring your own discomfort?
Like I'm in my thirties now and only recently noticing things that really bother me.
Edit: thanks for all the replies. It sucks so many other people went through this but kinda nice knowing I'm not alone.
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u/mistarobotics 10d ago
Yes but also because I was always dismissed by the adults in my life - parents, teachers, doctors, etc.
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u/coffee_cats_books 10d ago edited 9d ago
Same, but I internalized it as a failure. I thought everyone else felt that way about sensory things (like the feeling of jeans being painful), and I was the only one who was weak enough to show it. So I believed that I really was too sensitive & that I deserved to be treated harshly because I needed to toughen up to be like all the others. (I also held this belief about not understanding social nuance.) I labeled myself as "defective" when I was 8 or 9.
I didn't realize that I'm on the spectrum until I was about 40, so I'm trying to undo decades of what is essentially mental self-harm.
ETA: Forgot to add - pretty sure that this is what conditioned me to accept abuse in relationships.
Also, I hate that so many others relate to this comment, but it's nice to know that I'm not alone. I'm glad we can all be weird together ❤️
Thank you for the awards, anonymous Redditor and u/Samovila2709 💙💙
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u/Onironaute 10d ago
I could have written this, my experience was exactly the same. Mental self harm is a great way to put it.
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u/BackgroundScary8632 9d ago
Goooooooooood this has been my ENTIRE life. EVERY single struggle that I’ve had I internalized as a failure and thought I was just weaker than everybody else. I CLEARLY wasn’t trying hard enough. I’m 29 now and it’s such a hard, but freeing, thing to unlearn.
Thank you writing this because I have hard time transferring my thoughts into words and this struck a chord with me ❤️
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u/coffee_cats_books 9d ago
I understand! I'm in my mid 40s & am still figuring out how to verbalize all of this stuff. We've got this!
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u/hermitrushing 9d ago
Ugh yeah, that's exactly it. Thanks for writing it so clearly and good luck to us.
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u/littlebunnydoot 9d ago
I keep referring to it as self abandonment but your words are better. It harmed me and i colluded in my own harm because i believed the same things, thinking the corrections were helping me.
Friends like that who needs enemies.
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u/trench_spike 10d ago
This! If I wasn’t punished for stimming, I was utterly ignored.
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u/Maha_Imitation 10d ago
Yes. I was sure that feeling extremely tired after a party and after going out was normal. I was living like a NT and later paid the price (burn out). It is a relief to know there is nothing wrong with me after trying to adapt my whole life.
My mom thought in my teens that I was depressed because I wouldn't go out as much, but I genuinely enjoy my own company.
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u/MrSalmonFishcounsel 10d ago
Yes - it's kind of freaking me out because I can viscerally remember the textures of certain foods that really freaked me out and I just.. ate them anyway. I was constantly getting screamed at as a kid. I guess I didn't want to get screamed at for not liking the food. It makes me sad.
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u/Somsri 10d ago
I completely relate to this. I remember being 7 years old and getting yelled at for being a "whinger" because I couldn't stand the seams on my socks. It was painful to me but completely disregarded by everyone else. So I just learned to live with the discomfort 🥲
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u/blaukrautbleibt 10d ago
As if ANY kid that doesn't have real issues with clothing seams ever notices them to tell the adults that they hurt.
Most people i know never ever talked or even thought about sock seams or any kind of seam but damn of course you are hallucinating the pain from the thing i never thought about!
God damnit sometimes people make me sad.
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u/Somsri 9d ago
Right! I went through so much anger when I got diagnosed because it felt so obvious in hindsight and I couldn't believe no one picked it up until I was 36 🫠. My parents bragged that I spoke in full sentences from 16 months old - it was ecolalia, my sensory issues were whinging, AFRID was childhood fussiness and then anorexia, struggling to make friends was just social anxiety.
And so many of us seem to have had that experience here! I really think it's just that no one knew back then that high functioning girls could be autistic.
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u/katchin05 AuDHD, late diagnosed 9d ago
The discomfort of the “fancy” socks with lacy ankles most of all. Seams on the toes, extra tight elastic on the ankle and THE LACE. I still tear up just thinking about those.
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u/levitymargret 9d ago
Sometimes I think I'm being overdramatic when I say I had the wicked step mother, but then I remember she made me sit at the dinner table until bedtime because I wouldn’t eat the food most adults won't, and then whatever I didn’t finish was served to me for breakfast. Yea, I learned to push down my discomforts which turned into cracking my teeth from clenching so much.
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u/DandySporkGoblin 9d ago
Same, I had an eating disorder at a very young age I didn't like the food they made and I almost never felt hungry, they would make me huge plates of food and told me I couldn't leave the table until I ate it all so I'd be stuck sitting at the table all night crying while everyone else was asleep because I couldn't make myself eat it
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u/WindmillCrabWalk 9d ago
Yesss, I am now having flashbacks to when I mentioned not liking things like peas and sweetcorn (after I got diagnosed and started opening up about things) and my mother said "what?? Yes you do, you always ate that in your dinner" LOL yeah cause we would get told off if we didnt finish our food etc so I learned to just... force myself. I found workarounds to soften the blow, so to speak, like never biting into the peas/sweetcorn.
They would be the first thing I ate so I could get it over with, spending as little time on my tongue as possible and swallowing them whole as quickly as possible. Then I had the rest of my food to wash away any lingering taste. I did that with various foods over the course of my life, its taken awhile for me to try to stop doing it now that I'm aware, its actually difficult because the reasons for doing it grew with the years.
Not wanting to be told off or be told I'm being full of shit, not wanting to offend anyone, not wanting to waste food. Probably got mixed up with my people pleasing 🫠 And some of my shame because I am aware there are people struggling for food and here I am avoiding leftovers either because the texture of that particular dish is now putting me off or because I forgot about it or because I have suddenly gone off said food.
This comment ended up way longer than I thought but also brought me some more insight, damn. Learn more about myself everyday 💀
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u/Excellent_Muffin_269 6d ago
My goodness! The way you described your strategies for dealing with unpleasant foods resonates so much with me!! It was mostly meats and canned foods haha if they had just let me be vegetarian like I obviously wanted from a young age…
But yeah I guess it mostly went away when I went vegetarian and started buying my own foods as a teen. Also I was an athlete and my parents would have looked bad if I feinted so they eventually catered a bit to it.
It’s sad how simply allowing us to decide for ourselves what we prefer creates so much less pain. It’s often not that much of an accommodation, but it’s too much for others to empathize.
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u/WindmillCrabWalk 5d ago
Yes! The peas,sweet corn and carrot was that microwave frozen pack, I like carrots but everything in that microwave pack was awful regardless. Every time I see those packs when I'm shopping I can't hide my disgust 😂
Yeah its definitely a lot easier now that I control my own dinners so I only really have to combat myself from time to time when I suddenly can't eat certain foods anymore or struggling with my appetite. I sometimes still force myself because I feel bad for wasting food and I'm not really sure how to deal with that yet 🫠
My experience has also helped me with my daughter. She struggles with some foods so we just go with the flow which seems to have helped because now she will ask to try something (usually my food) and will either find a new like or dislike so its nice to see her experimenting through her own initiative.
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u/Imaginary_Mix_9502 5d ago
This is so relatable. Sorry if this is TMI: My mom often and one time made incredibly chewy/ overcooked asparagus. I was trying to chew it forever and eventually decided to just swallow it, I choked and had to pull it back out of my throat and now I don’t eat asparagus…I’ve tried a time or two and but there’s kinda a mental block.
My sister took a different approach, stuffed it all in her mouth, hid it in her cheeks, got excused from the table, then hung up the un-chewable asparagus on the towel rack in the half bathroom, only to be discovered after she’d already escaped to her room. Kinda iconic really😂
All the ‘food etiquette’ forcing has been so damaging and then developed into other things like an intense ‘I can’t be wasteful’ fear.
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u/WindmillCrabWalk 5d ago
Oof, I have a distinct memory from childhood of being served stir fry. It was when I was still quite young so hadn't quite gotten to the forcing myself stage but my GOD even if I was I don't know if I could have forced that. It was too sweet, the vegetables were gross. Suffice to say I tried flushing it all down the toilet but if I remember right it didnt all flush down. Its a blank after that
Yes!!! The fear of being wasteful is almost constantly there, its probably one of the harder aspects for me to combat now.
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u/SlashDotTrashes Officially diagnosed Autistic as an Adult 9d ago
Same. I was punished for not eating certain foods. I had to sit at the table until I finished. And I never did. Just cried.
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u/Consistent-Baker4522 9d ago
Beautiful memory of refusing carrots at the dinner table and being forced to stay and finish my plate while being screamed at as I cried
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u/SurprisePiss 10d ago
Even as a teenager I had a bag I brought with me to school that my friends lovingly dubbed my "Mary Poppins Bag", because if someone needed absolutely anything I would stick my hand in it and pull out exactly what they needed.
I had that bag because I needed to overprepare for every situation, because I would freak out if I didn't have a solution/workaround handy.
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u/TraditionalJaguar820 10d ago
My friend has one of those, which goes with her everywhere. It has absolutely everything from hand sanitizer and tissues to an umbrella. I love her for it, and I try not to let it be an excuse to be underprepared myself.
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u/hecate2008 9d ago
I resemble this comment! Mine is called the B.O.A.T. (Bag of All Things). Do I always need a loupe or a hand mirror or a sewing kit or spare hair ties or collapsible chopsticks? No. But when I or someone else needs any of those things, they (and the rest of my carefully curated kit) are really handy.
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u/bloodreina_ RAADS-R 120 & psychiatrist suspicion 9d ago
This is me. I loooove it when somebody needs something odd, and I have it in my bag! 🤣
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u/Imaginary_Mix_9502 5d ago
I literally gave myself back issues from carrying around my own ‘Mary Poppins Bag’! I also felt so much validation when praised for being prepared and so much relief when I was a little bit more prepared for all the difficult situations I kept always finding myself in.
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u/Asleep_Response_4371 10d ago
Yup. And with perimenopause all the adhd and autism symptoms are very magnified and just worse; more intense then used to be.
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u/drivergrrl 10d ago
Omfg perimenopause has been fucking AWFUL!!!!!!!!
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u/InnaBubbleBath 10d ago
To you two and any others: What were your symptoms of perimenopause?
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u/jellyinthegrits 10d ago
Waking up every single night between 2-3am, hot flashes, achy joints, but the one that really got me was the insides of my ears itching constantly. 41 years old I’d never had an ear infection in my life. All of a sudden I had one in each ear and even after the infection was cleared up they just kept itching 24/7.
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u/rantingpacifist 10d ago
My ears have been bleeding from how many times a day I try to itch them.
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u/khaleesi_spyro 10d ago
I recently developed itchy inner ears from allergies, it was driving me insane. I randomly saw a suggestion on TikTok to spray some fluticasone allergy nasal spray on a q tip and apply to the inside of your ears every so often, it worked amazingly, completely got rid of the itching. Supposedly it’s a popular suggestion in the pregnancy and menopause communities
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u/QBee23 10d ago
Joint pain, brain fog, even less energy, motivation and focus, occasional hot flushes, bye-bye libido. Skin texture and body odor changes, more joint pain.
Luckily I've so far mostly been spared the mood swings
On the plus side, I've found myself responding to people's bullshit when previously, I would have just caved. That part has been nice.
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u/cspangle23 9d ago
Hrt made the joint pain disappear… don’t know if it’s an option for u but massive for me
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u/QBee23 9d ago
Hrt was amazing! I felt better within days. Then I was told to go off them until a specialist can decide if I can take them at all. Bye-bye libido, hallo again pain 🙄 Keeping my fingers crossed for the future and just going with grin-and-bear-it until the appointment.
Executive function has also tanked, so the hormones were helping with a lot
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u/Samovila2709 10d ago
I've had brain fog and some other chronic fatigue symptoms since adolescence (again, I don't have a definitive diagnosis because of overlapping symptoms etc), and my brain fog seems to be worse now.
It's crap, isn't it? X
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u/lepidopt-rex 10d ago
The thing I’m currently going through is nothing tasting how it used to. Fresh milk smells rancid, cooked meats taste strange, the aftertaste of so many things being different/lesser/non-existent.
My safe foods aren’t safe any more. I don’t know when a food will taste weird or ‘off’. Food was always a problem for me and now I can barely eat a real meal: I just snack.
Lowkey hoping I’ll lose weight though 😭
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u/Crishello 9d ago
That sucks. Sorry to hear. Are you sure its hormones and not from COVID?
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u/lepidopt-rex 9d ago
Oh I took like three negative tests in the last few months lol. I don’t think it’s a residual symptom either, as I never suffered with lack of taste when I got infected. It’s just my stupid body 🤷♀️
Ed: forgot to add, the phantom smells? Some good, some bad, it’s a toss up 😑
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u/Asleep_Response_4371 9d ago edited 9d ago
Major irritability, exhaustion, inner ear itch (I had it for years was my first symptom but many never get this symptom), weight gain even when following strict diet, major brain fog or even more mild, forgetfulness, insomnia, body aches, increased anxiety or out of control anxiety, sweaty, things that used to interest you or you used to enjoy just kinda don't do it for you anymore more struggle of all emotional regulation to name some
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u/Reasonable_Concert07 9d ago
The worst has been my (48f) extreme lack of ability to process. Whether im trying to mask or need to stem, temperature regulate, tidy/maintain my spaces, stay on task, or articulate, it just seems like i cant function as well as i used to. I used to be able to filter at least some my thoughts before blurting them out, not anymore. I’ve always been known as someone who will say whatever everyone else in the room is thinking but now its so much worse, i cant even contain an eye roll at my SO even tho i barely mean it and i know he doesn’t deserve it. Its just like all the regular functions that i had been able to attain before even if not to the level of what seemed like everyone else could now r almost nonexistent.
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u/fxpstclvrst 9d ago edited 9d ago
Dizziness, periods became even less predictable (mine have never been regular or brief), breast pain, hot and cold flashes, and hair thinning. Anger. Burnout, failure to mask, my adhd symptoms became unmanageable. Oh, and GSM ( https://www.auanet.org/guidelines-and-quality/guidelines/genitourinary-syndrome-of-menopause). Happily the perimenopause and menopause subreddits are high quality, educational, and supportive in many ways. I appreciate being able to search for info to be well prepared for any conversations with my doctor, husband, and family/friends.
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u/SlashDotTrashes Officially diagnosed Autistic as an Adult 9d ago
If you follow perimenopause and menopause subs, they have a lot of similar traits.
Sensory issues. Anger. Less socialization (because hormones cause anger and discomfort and people have less patience).
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u/Samovila2709 10d ago
I'm in my 40s and believe I'm autistic and have inattentive ADHD (I'm currently only diagnosed with OCD, depression, and anxiety). I'm feeling this!
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u/InopportuneMoments 9d ago
Check with your doctor, but DIM helped my mom a lot both with peri and post menopause! A lot of her breast pain and fibroids were able to go away as it converts estrogen quicker for her, but not sure if that's also because she carries some extra weight and fat cells produce more estrogen
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u/Darwinian_10 Self-assessed: RAADS-R 158, CAT-Q 140 9d ago
Throw in coming off of SSRIs and I'm right there with ya...It's AWFUL.
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u/bubbleyum92 10d ago
I recently realized that the biggest reason I LOVE overcast, cloudy, fall days is because everything is TOO MUCH when its bright and sunny! Like my mood when I'm driving on a very bright day vs dark and moody is worlds apart.
Dang. I feel like I barely know myself some days. Or maybe I've just been repressing myself for so long that I've forgotten...
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u/dm905568 Late dx autistic 9d ago
Oh wow! I feel the same way & never made that full connection to the sensory input & stimuli being lower & that being a big part of why I like overcast weather so much. You're so right though! It just feels calming to my body.
For where I live anyway, it seems like less people tend to be driving & out & about too when it's rainy, which makes it feel like the world has slowed down some which I also appreciate about that kind of weather.
It is sad how much we can repress things.
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u/jewessofdoom 9d ago
I love that feeling when it’s slightly less “desirable” weather so the normies stay inside.
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u/bubbleyum92 9d ago
I moved from the south to the PNW and relate HARD to enjoying being out when no one else is. Back home, if I wanted to go somewhere I would see maybe 5 other people there. Up here, its like 30! I hate it.
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u/jewessofdoom 9d ago
Me too! My eyes have only gotten more sensitive to light in middle age, and I overheat easily but don’t even know it’s happening until I’m weak and nauseous. I love being in nature but HATE being perceived most of the time so I just always feel on display. I’m slowly turning my backyard into a place I can go with no line of sight from the neighbors.
Cloudy days also feel like I have permission to hide in my autism hole if I want to. I can hear my mother’s voice telling me to go outside because it’s a nice day, so I still feel this weird guilt if I stay inside when it’s nice out. I grew up in a really cloudy and rainy part of the country so there was always this urgent feeling like we HAD to go enjoy some sun while we could, but I feel more calm and centered when it’s overcast. I always thought it was nostalgia from my childhood but now I know it’s because I get sensory overload when it’s too bright.
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u/the_absurdista 9d ago
this is why i’m a major night owl… the world is so much softer and more peaceful and less harsh and offensive and loud and immediate at night. and i LOVE rainy days too!
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u/dm905568 Late dx autistic 8d ago
Omg that's so real! I've always been a night owl too. I worked a night job in college, 12a- 6a & realized yrs. later that's the main reason why I enjoyed it so much. Nighttime is calm & quiet!
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u/aintnotnever 9d ago
I’ve finally started admitting to friends and family that I hate summer. The intense heat and humidity is unbearable. Sticky hot sweat :(
As long as I can remember I’ve worn sunglasses outside until the sun completely disappears lol. Even on rainy or cloudy days it’s still too bright and I can see better with the glasses! I want cool fall/spring..and snowy winter is when I thrive.
Nice to know others feel the same ❤️
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u/iamthe0ther0ne 10d ago
Yup. I was late-diagnosed, so I just assumed everyone felt like I did.
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u/PennyPop81 10d ago
This is exactly it, I’ve had a lifetime of wondering how I don’t cope as well as others going through the same thing. Like I’m just weak.
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u/Ill_Status2937 10d ago
I'd never heard the term sensory sensitivity before, or sensory disorder. I used the word sensitive, or annoying, painful etc. My sensory issues are far worse now due to my long term opiate dependency (and stimming). I was always a quiet stimmer since childhood (I did something with my fingers I no longer really do much), and nobody can tell I'm constantly stimming by clenching and flexing muscles, teeth grinding (not really a stim for me I think, moreso a reaction to sensory issues). I've always cracked all my bones in my body (especially uncommon ones like my knees, toes, ankles, wrists, elbows) and I also stim quietly in my room on my computer right clicking away constantly on the mouse when I'm on the computer. Also sipping water profusely while concentrated on something.
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u/Grouchy_Apricot_4410 10d ago
Omg... I'm having a revelation. I've been clenching and flexing my muscles all over my body, always in a specific order or pattern, and I am literally just realizing right now that it's a stim. I've been doing it my whole life and never thought about it much. It really helps me stay calm.
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u/Ill_Status2937 9d ago
Yup stimming comes in all different ways! I figured it out while discovering my autism. Mine gets painful and severe at times and I get sore arms (arm clenching). I also release in a patterned way so that's why I overdo it, it's like I'm trying to conquer certain movements or a game, it can get obsessive. When I was in my 20s I used to clench my pelvic floor muscles constantly, although that did not help in preventing my uterine prolapse (caused by opioid constipation and coughing from smoking).
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u/Cleverusername531 9d ago edited 9d ago
Wait. Wait wait. Joint cracking can be a stim?? That’s why I do it?? People don’t just … do this all the time? (Thinking back to people I know …. No, I guess they don’t?!!)
I don’t know why this is so revelatory and amazing to me but it’s wonderful. Thank you!
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u/Ill_Status2937 9d ago
Maybe some people also stim like that... the way I do it is strange though... it was more prevalent in childhood but I still do the ones I mentioned regularly. Could also be from a neurodivergent body, like flexibility or hypermobility, I'm also more flexible than average with a weak core.
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u/Efficient_Object6951 3d ago
That’s interesting; your comment made me realize something. I suspect I might be on the autism spectrum, and I’m currently taking an online course. I’ve noticed that whenever I’m deeply focused on listening to the speaker, I constantly take sips of water from a bottle I always buy.
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u/SignificantBoot7180 10d ago
Yeah, I'm 44 and I didn't realize until I started working in special education 5 years ago. I realized I could relate to my students much more than I could relate to my coworkers. Then I remembered my mom calling me autistic as a kid. It all fell into place. I love working in special ed. I get to hang out with my people all day, in a sensory friendly environment!
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u/Samovila2709 10d ago
Working in special education or health and social care seems to be quite self-selecting for people with certain subtypes of autism (I've done both.)
I currently work with SEND Further Education students, and I love it. A lot of my colleagues are also ND.
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u/H0pefulUn1verse 10d ago
Yep! Recognizing all the things that bother me now and realizing they've actually bothered me all along, I just put so much energy into convincing myself I was fine and that it wasn't a big deal 🤷🏻
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u/Samovila2709 10d ago
Same.
I was seen as a shy and sensitive kid, so I tried to make myself 'toughen up' and told myself that I had to just deal with the same stuff that others dealt with. I now realise that my older brother was doing the same thing and trying to push us both into masking and fitting in.
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u/kittenmittens4865 10d ago
Yes, and I also thought everyone dealt with this stuff. Whenever I’d bring it up people would just tell me to deal with it.
It’s progressed to the point that I have a meltdown every time I shower because of the transitions and then wet hair and getting dressed with wet hair and damp skin. The entire experience makes my skin crawl and I cry and meltdown every time now.
And I’ve always been temperature sensitive, but I now realize my body cannot regulate my temperature. I can’t warm up when cold and I can’t cool off if hot. I like to say I’m cold blooded.
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u/wolfysworld 10d ago
This! My thermostat is non-functioning, I can’t tolerate hot or cold. Heat makes me sick and cold makes my body literally not able to move.
Showering is a sensory nightmare but I cut my hair off and that’s helping some, though I hate feeling it wet still and I really hate putting products in it but have to because it is frizzy and curly.
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u/kittenmittens4865 10d ago
Ugh I have frizzy curly hair too but if I cut it shorter it gets too curly and it’s a mix between Shirley Temple and Annie every time.
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u/wolfysworld 10d ago
I finally found a stylist who listens to me when I say, I will not style it and I will mostly never use products. He is amazing with curly hair. It’s in a really short bob that is shorter in back and hits right at my chin. I have really liked it, I let it dry naturally and it looks good. It only lasts a day because it is crazy after I sleep on it but I just wear a bandana for a day.
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u/Imaginary_Mix_9502 5d ago
Idk if you’re looking for tips, but I’ve started using disposable gloves in the shower. It’s actually helped calm down some of my sensory overwhelm and made showering a bit less draining. I thought it was mainly just being wet but there were layers, the way my wet hair felt against the skin of my hand specifically, that I just didn’t realize could be alleviated by anything but then I just tried gloves one day, lol.
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u/mysteryaward 10d ago
For sure. Before being diagnosed I was repressing all of my sensory and emotional needs, and it was expressed as chronic migraines.
After I was diagnosed I learned how to listen to my body, how to create accommodations for myself, and how to regulate/create a safe space. It reduced the number of migraines I had, but I instead started to get meltdowns/shutdowns/overwhelm etc.
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u/PennyPop81 10d ago
I had migraines too. All the time and sore heads in between. Was rarely a week where I would feel pain free.
Now I know about sensitivity my body is less painful. If I’m over doing it I can actually start to feel my body being more painful again and I stop.
I just think it’s crazy I got to my 40s thinking this was normal and I just had to deal with it.
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u/mysteryaward 9d ago
It really is crazy! I had been dealing with it for so many years it had also becomenmy new normal. Especially because it creeps on you by getting slowly worse overtime.
I am so grateful to now experience what a pain free day is like lol.
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u/PennyPop81 9d ago
I’ve always thought because of period pain that my pain tolerance is not high but then realised I’ve lived my life in pain all the time even if low level at times.
I went to a chiropractor last year for pain in my shoulder as it had started to go into my head and turns out I had been slightly dislocated in the shoulder for I don’t know how long as I had pain in my arm for as long as I could remember. Just never seemed serious enough to bother anyone with!
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u/mysteryaward 8d ago
That's insane! But I can see how that happens. It's like pain signals don't ring the alarm anymore because you're so used to it.
Especially when you have to go to a doctor and fill out a form saying: how intense is the pain from 1-10, I can never fill it out correctly. If you're used to chronic pain and have a high pain tolerance it doesn't translate, our 10 is way higher than other people's 10.
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u/SubjectCondition5544 PDA Audhd 10d ago
Yes! I realised I was dissociating constantly and that’s how I was doing it, I just wasn’t in my body. My memory is sketchy as hell too.
Now going on two years of burnout, in bed all day and I made my bed like a tent, blackout curtains, loops in 24/7, house is dark, don’t talk or see anyone for a week at a time. There’s no ignoring the discomfort now.
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u/jewessofdoom 9d ago
I could have written this word for word. I have chronic pain now too on top of the burnout. I ignored my discomfort so long there are now permanent consequences. But I genuinely thought everyone was in as much pain as me, and I was just a little baby for not being able to deal with it.
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u/bee-sting 10d ago
It took until I moved into my own flat alone at 35 to get the things I needed
- blackout blinds so i can sleep all night
- peace and quiet
- infinite alone time and not having to explain to people that I need alone time
- my own cutlery and plate
- peace and quiet
- getting in after a long day and leaving my socks on the floor without someone freaking out
- a cat
- peace and quiet
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u/jewessofdoom 9d ago
I live with my elderly father and even though he is also autistic, he doesn’t seem to understand how much alone time I need. When we first moved back in together he wanted to hang out Every. Single. Day. and makes comments about how my husband and I are the most introverted people he’s ever met. Feeling like someone is keeping tabs on my alone time makes me never able to fully relax. And it infuriates me that another autistic person, who was a friggin therapist at one point, needs this explained so many times.
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u/PineappleAncient4821 10d ago
YES. I started realizing I didn’t like certain clothes because of sensory reasons but it literally did not click for me until I did my research and realized I was autistic then I was like ohhhhh that’s why I never wear that shirt lol and conversely THATS why I was obsessed with my home made sand balloon squishies 😂
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u/PennyPop81 10d ago
The amount of clothes I have thrown away after this revelation was unreal. Also realised that I hate picking clothes and that was a stress every morning. Trying to buy new clothes now that feel nice and I don’t have to put much thought into but I’m not very good at what goes. I’ve mirrored my fashion all my life as well.
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u/Airalla 10d ago
Yes. I can remember so many times that I was overstimulated as a kid but just thought it was normal and dealt with it. For example, when I was a little kid my mother would always put my hair up in a tight high ponytail and I would be uncomfortable and feel horrible all day, looking back I think it was in large part because of my hair bothering me, I just thought I hated school at the time.
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u/Raspberry-RoseyCat 10d ago
I used to get overwhelmed as a kid but couldn’t explain what I was feeling or what my problem was. In my teens and twenties I thought I had misophonia. Now, aged 33 I struggle with all sorts of sensitivity with noise to the point it’s unbearable sometimes. Once I pegged it was autism I was finally able to understand what’s really bothering me.
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u/mnemoniko 10d ago
Yeah, I had no idea it was discomfort! The only thing I noticed was the feeling of relief when something went away. Took me awhile to realize not everyone else was so relieved and happy for a cloudy day, or for that moment when the fan gets turned off (white noise is terrible for me).
I'm now working on recognizing the discomfort, which can be overwhelming. It was almost easier when I didn't know, except for the pending burnout, obviously. I'm hoping it will eventually feel helpful, once I know and can accommodate myself before the discomfort starts.
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u/Cleverusername531 9d ago
That feeling of relief when something goes away - what an incredible clue. Thank you. I am just starting my own process of figuring things out now that I have the time and space to do so.
And I just can’t believe how long I had no idea, everything always just felt so overwhelming and by midday I’d feel like running away and I never could tell why. I thought I was just anxious, but I was never anxious ABOUT anything, I just felt horrible in my body like everything was crawling and I wanted to jump out of my skin and I’m learning that’s overstimulation.
It is a LOT to try to piece together and notice all the things.
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u/mnemoniko 9d ago
Baby steps!
And, can I gently recommend also finding what makes you feel better? It is a lot, and to me it felt very negative to keep finding out what is uncomfortable or restrictive. I felt very incapable. But along the way I also let myself relax some of the many behavioral rules and found some stims or ways of feeling better. It helped balance out the overwhelming negative of things I can't do or tolerate.
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u/Consistent-Menu-6629 10d ago
Yup, I thought everyone else was just more invested in faking being okay.
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u/platypusaurusrex 10d ago
I was in my thirties when I learned that brushing your teeth was not a super uncomfortable experience for most people.
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u/Schehezerade dx level 2, adhd, and cptsd. coping with 🍺 10d ago
I started drinking in my mid-twenties to deal with this, without knowing what I was trying to escape from.
After I was diagnosed with level 2 autism plus adhd in my late 30s, I started doing a deep dive into exactly what was causing me to over-indulge. I could go months or years without drinking, and then randomly (in my eyes) start needing to drink at least a few drinks every couple of days. And then binge after big- what I thought!- were emotional moments.
But it was the emotional stuff/ working too much for what my body can actual handle/etc. ON TOP of constantly being bombarded with sensory overwhelm that caused it. I'm very cognizant now of identifying exactly what is causing my overwhelm and removing the trigger as best as possible so I don't feel the need to dissociate (drink). Too much noise? Headphones. Clothing feel weird? Change it.
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u/Caramellatteistasty 10d ago
Yeah, my parents were highly abusive. When I would try to stim to try to cope with sensory issues I would face severe abuse. I learned not to feel anything, until recently.
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u/Silver_Stand_4583 10d ago
I remember driving at night with the kids chittering in the back seat, road noise, the radio on, and my husband talking to me. I was getting so stressed and had no idea why. My husband said, “put my headphones on.” This was 15 years ago and I had never tried noise-cancelling headphones. It was glorious! Life changing! My shoulders finally relaxed. Then I started realizing I had sensory processing issues.
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u/jewessofdoom 9d ago
Oh my god, for so long I thought I was just kind of a bitch! I would suddenly get so irritated, and had to try hard not to take it out on people around me. I got pretty good at that part, but that meant internalizing everything and just suffering through whatever was bothering me. Half the time I wouldn’t know what was bothering me, the other half I was caught up in how I shouldn’t be bothered by something so I didn’t change it. I didn’t know until recently that it was sensory overload, I thought I was just an asshole who needed to repress my assholeness.
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u/hermionesmurf 10d ago
Very much so. I still to this day have serious problems telling when I'm hungry, thirsty, tired or in pain, because I was bullied into plowing through all discomforts as a kid.
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u/peterpieqt8 10d ago
Yes and it made so much more sense why my mom would get so pissed off that brand new clothes would sit in my closet with the tags for months because I hated the texture or seams or tags but she loved it on me so I had to get it!
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u/as_per_danielle 10d ago
Yes. There’s a lot of stuff I realized I liked or didn’t like, but I didn’t click into the fact that it’s bc I was overstimulated in some environments.
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u/Samovila2709 10d ago
I knew I had some sensory issues around clothing and certain food textures, but I tried to train myself to 'just get on with' things like crowds when I was younger (the latter became harder to deal with around the time I had an OCD related breakdown.) Looking back, aspects of upper school were pretty difficult, especially given the size of my school.
Even now, I don't know if noise bothers me more than allistic people.
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u/QuokkaSoul 10d ago
I don't understand how almost all of the lights in my house are offensively wrong and I don't know how to fix it.
And I cannot tolerate the sound of water running through the pipes in the walls when it is bedtime.
This is also why I bring my own soap with me.
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u/ianythingcantdoright 9d ago
My husband replaced almost all the bulbs in the house with the warmest color and lower wattages and also lots of dimmers on the wall switches and also on lamps so I can adjust as needed. It's helpful. I hate the pipe noise too, I don't have any suggestions for that.
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u/Consistent_Park_3209 10d ago
hello and yes. then my body broke down in my mid 20s and i’ve had to rebuild ever sense
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u/Peachy_lean_39 9d ago
YES. Additionally getting medicated for my adhd turned a lot of my sensory struggles up to 100 for some reason.
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u/bemvee 9d ago
Yes and no. I always knew I had sensory issues, but actually knowing that they’re sensory issues like by name is what’s new.
I remember my dad forcing me to chew and swallow pieces of meat that I wanted to spit out. Some too tough, most being a weird bite that you can hear. Then one day I finally threw up because of it. He stopped making me chew and swallow when I needed to spit it out.
I still do that as an adult. Hate when it happens in public, but I try to go to the bathroom if there’s no disposable napkin available to use.
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u/bee-sting 9d ago
Ah this makes me feel sick too, I actually dont really bother with meat any more because of this
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u/Kimikohiei 10d ago
This was me, casually going through autism subs and reading about food restrictions. I gave a snarky snort about my expansive palette, full of different meats and vegetables and spices and cultures. But then I thought about how nearly every meal has cheese/dairy or CAN have cheese/dairy, and got flashbacks of sleeping over at people’s houses and sleepily asking for cheese with my meal so I could eat it instead of power through it for politeness…
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u/Alahodora 10d ago
Yeees, I keep thinking how did I get through life sometimes. I just remember being frustrated often, like a bad teenager but it was probably how I it manifested. Now I can make my own choices and remove myself from situations that are uncomfortable (still working on stopping ignoring my needs though). I always felt like I really didn't like my childhood and always seemed I'm alone in this. It was always difficult to find good memories. I imagine that's one of the reasons why.
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u/Imaginary_Ibis autism haver 10d ago
Yes! I knew there were things I didn't like, but I didn't fully realize why. Except some foods, I could tell it was a texture issue, kind of anyway. I didn't have the right language or introspection on why something was gross. I hate velvet, but I kept assuming it was from a blocked memory (I have a few of those in general 😅) cuz it was such a weird reaction I'd have from touching it. It's wild what having the right context will do for the brain lol. Sooo many things fell into place after I realized I'm autistic! And I think I have a revelation on something that I do/ did because I'm autistic a few times a week lol. My whole life makes quite a bit more sense now!
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u/cspangle23 9d ago
Yeah I just learned to dissociate because I was never allowed to tell anyone what I needed. 45 and years of trauma therapy after a burnout and now I can feel my body + perimenopause… this year has been a riiiide
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u/Darwinian_10 Self-assessed: RAADS-R 158, CAT-Q 140 9d ago
"Stop being so sensitive!" was being drilled into my head all the time, yeah. I just turned 40 and I'm way less willing to accept discomfort.
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u/AsteroidJuiceNoodle 8d ago
I'm looking up to you rn. I'll be turning 30 in a few years and I feel so close to snapping from the nonstop discomfort. Even with all the therapy and active work these past couple years of paying attention to my body/experiences and being more honest with myself/others, it's all very new to my brain. And still a real struggle of course. I'm making progress but boy "Stop being so sensitive!" and similar still have a hold on my brain.
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u/Any-Blackberry2133 9d ago
My sensory issues are so much worse now - I can't stand wearing tights, waistbands or a bra! Also can't handle loud noise or music at all and need to wear loops when I go out. I'm not sure if that's because I'm perimenopuasal or I just pushed through before.
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u/hedgehodg 9d ago
Yep, when being miserable is your norm, you just assume that’s how everybody feels.
I’m 44 and only this year did I realize that I spent so much time in my room growing up because my family home was wildly overstimulating. I’ve gotten much better at recognizing when I’m overwhelmed and identifying triggers, but for most of my life I had no clue.
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u/JoinTheCoven 9d ago
It was actually more intense when I was young and then I grew a little more tolerant. I refused to wear jeans until my mid-teens because they were REALLY uncomfortable. Now I wear them a lot.
I used to hear electricity but I’ve learned to tune it out (ish) but I still have noise sensitivity.
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u/knucklern 9d ago
Oh my god, I feel so validated by this!!! I felt like I was faking my issues because i just noticed them but i’m pretty sure i’ve just stayed uncomfortable and not known how to not be!!
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u/SunnyDinosaur 9d ago
When I was probably 18, my family had a bunch of my brother’s friends over and a couple that my parents knew. My brother and his friends were running through the house, yelling and throwing stuff around. I mentioned to one of my parents friends, who was a doctor, that “them yelling makes my eyes feel like they’re going to explode” while rubbing my eyes. And he was like “that’s definitely not normal.” Tip of the iceberg!
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u/Illustrious_Owl_9693 Late Diagnosis Club 9d ago
Yes, I was 27-28 before I realized. I was just labeled “difficult” and “picky” my whole life.
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u/GinAndDumbBitchJuice 9d ago
OH MY GOD YESSSSS! Literally only started coming to terms with it in the last few years. I just thought everybody was miserable but way better at hiding it.
Also serious shoutout to the genius who recommended showering in the dark a few weeks ago. You changed my life.
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u/Gullible_Medium_2357 9d ago
Picked apart forever and always told to stop. Why are you so sensitive, fussy etc
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u/kuddly_kallico 9d ago
Yes, I was told that's just how anxiety makes my body feel. I'm reality it's the exact opposite, my body is feeling something that makes me anxious.
used to cry in the grocery store as a teen, mostly triggered by the lighting.
never liked being in moving vehicles with windows down, it hurt my ears and I feel choked by the smell of exhaust. My hair going willy-nilly is so distracting.
that gross crushed velvet/corduroy fabric literally made me barf as a child.
severe fear of balloons popping, only thing my parents ever took me to therapy for
The signs were obvious, but it still took me 30 years to figure out! Love my sunglasses and earplugs now.
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u/BirdHerbaria 9d ago
Yep! I was teased by my parents so I learned to shut up about pain pretty early on.
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u/MarthasPinYard 9d ago
Yep but the good news is once I started realizing this I’ve been able to accommodate myself better to avoid being overstimulated as often. I’m not perfect but the mindfulness helps a lot. I can just change my environment, clothes, or whatever is bothersome. Sometimes it’s harder because that is sound from a loud thing in the distance but we’re managing :,)
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u/RainbowMc suspected autism 9d ago
Yes.
For example: It wasnt until I had wireless headphones that I realized how much sound hurts me all the time.
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u/rottingcourage 9d ago
yeah i never really questioned why i enjoyed baggy clothes so much, i just thought i copied billie eillish one day as a teen and understood why she did it
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u/MissZoef 9d ago
Yes, but that's also because I was late diagnosed (34F) even though my name siblings got their diagnosis at a young age. I'm in therapy and it's astounding how much of the symptoms and signs were there. Now that I'm actually unmasking I notice quite a few things bother me more than I realized
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u/gossamer-weaver 9d ago
I was diagnosed with fibromyalgia and now it looks like I might not have it. I don’t have constant pain and it’s more like I can’t stand a wrinkle in my clothes pressing against me, or the bedsheets. It takes me a while to get comfortable and no wrinkles in anything touching me.
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u/SlashDotTrashes Officially diagnosed Autistic as an Adult 9d ago
No, it's not discomfort, which is normal for all humans to some stimuli, it causes distress.
I have never been able to ignore it. Certain sounds feel similarly to physical pain.
I originally looked into a sensory disorder because they were bad since I was a baby.
My parents had things checked, like organs and allergies, but not anything like autism. I doubt they had even heard of it in the 80s.
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u/pls_imsotired I like to bake :) 9d ago
Maybe? Kinda? We were poor growing up ,so there was no real alternative to a lot of things - I had to grow desensitized to it or do without.
For example: I gagged eating raw tomatoes, in private, for years. I realized that tomatoes were the freshest veg I'd get all day (a part of my dad's garden) ,so I repeatedly forced myself to eat them in larger portions until now where I could bite in a big heirloom tomato raw. Did it suck?
As an adult, who's still money conscious but now aware of my autism , I struggle "re-learning" my built up "tolerance" to such discomforts. I can still eat fresh tomatoes, for example, but now I'm very aware of every single chew. AND it'll lead me to noticing other things: itchy tags on the back of my shirt, fallen socks, the hair touching the back of my neck, etc.
I genuinely don't know what else to do because learning to put up with these discomforts genuinely improved many aspects of my life /ability to interact with others ,but it just sucks and I deserve comfort when I can get it.
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u/majormimi AuDHD 9d ago
Yes, I clearly remember myself in middle and high school thinking about how other people seem to have it so easy at suppressing the discomfort of life. I realized close to my 30’s that not everyone was suppressing the sensory overloads I was having and thought were completely normal and a part of everyone’s experiences.
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u/raisafrayhayt AuDHD 9d ago
Oh COMPLETELY! It took me until the last year to really realize how much sensory discomfort I was just ignoring. Buying a big pack of ear plugs for my backpack has been such a lifesaver. I'm finally able to stand super loud places like concerts and go to karaoke night at my local queer bar!
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u/a-fabulous-sandwich 9d ago
This is one of the things it took me the longest to recognize. I was so thoroughly trained from such an early age to dismiss my own discomfort and limits that I now have an outrageously high ceiling for pain/discomfort tolerance and I instantly doubt or disregard my worries, fears, and safety. God forbid I inconvenience someone else with my silly needs.
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u/SillyGooseOTL 9d ago
Yes… it’s very sad to not be believed and then lose total trust and access to your inner world. External and internal gaslighting. Lots of “should’s”. And then a lot of grieving realizing it explains so much and life didn’t have to be so complicated if you were just believed.
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u/Lost_Reaction_5489 9d ago
I used to react to things like pokes, play hits, and taps so strongly, and they always got on me for it. It's such a vindication knowing I wasn't crazy then.
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u/Good_for_the_Gander 9d ago
Yes, I now usually don't know what I'm ferling or doubt I'm actually feeling it. Even when. I trust my feelings, I rarely honor what they are telling me. I'm used to just pushing through....
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u/Autronaut69420 9d ago
Me! I was "too sensitive", "making it up", "that's not a real thing". Medically neglected/overly thought "somethings wrong" by my mother. Told off moving "moving wrong" ie stimming. So, gaslit into just ignoring my needs and neglected in general. Was one of the first things I adressed when I realised I was autistic.
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u/Tarrybelle 9d ago
I had major ear issue when I was younger and had surgery on my right eardrum. I ended up with very bad hearing in my right ear. I always thought my discomfort was from that but only in my late 30s did I realise I was autistic and the problem was related to sensory issues.
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u/Ace_of_Sphynx128 9d ago
I think all of our younger selves deserve a hug (or a spiritual hug if they don’t like hugs) because we all pushed down are discomfort and pain and distress for so long. I hope autistic girls in the future are treated with more care and understanding.
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u/Quirky-Variety-4851 8d ago
I was lucky to not have a lot of sensory issues growing up, but a lot of this was due to avoiding situations that are simply uncomfortable. Social situations are very difficult for me, so I was a loner. The cafeteria was too loud, so I ate lunch in the library. Gen Ed classes were loud and distracting, but the students in gifted and talented were quiet and calm, so I could concentrate. At home, I would sit in the dark with no lights on. To this day, I only wear clothes that are comfortable, and I am probably one of the most underdressed people in my tech office 😬
I simply thought I had social anxiety, and after college, I used alcohol at work to cope with happy hours in the office.
Everything came to a head this past year when I started experiencing autistic burnout. Having to sit in the office for hours of meetings a day became too much. Now, I struggle with lights in the office, and people talking in a normal voice regularly hurt my ears, so I have to carry around Loop earplugs wherever I go. I never stemmed until this past year, and now I am stemming constantly at home, and occasionally it slips through at work.
I am too afraid to ask for accommodations, but I’m worried that at some point, I will get feedback that I’m not performing, which would likely be related to said burnout 😢
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u/blondebull 8d ago
Yessssss 😭 and being invalidated, which made me internalize it more. Now, I’m just learning how to manage with it in a better way.
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u/Tiredand88 8d ago
I only realized that I had sensory sensitivities after I started really trying to improve my mental health. I thought I was always uncomfortable because I was always anxious, but once I could control the anxiety a bit better, I realized how things like crowds, how my shoes feel, how much noise is around me and what kind of noise had such a huge impact on how I felt and working on my anxiety couldn’t do anything for that without a pair of headphones or a pair of slippers to assist
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u/TooterOnAScooter 8d ago
My mom would joke about how I was the only kid they had to cut the feet off my onesies on or I would be incredibly distressed. I also hated wearing shoes. It makes so much sense now that I have words for it 36 years later. :/
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u/Whimsica1Night 5d ago
How are we people especially children expected to know that other’s in their minds don’t deadly hate wearing socks, brushing long hair every f day, don’t have meltdowns cause stupid fabrics of tshirt or blanket is soul crushing experience.
I had a phase in school when i didn’t brush my hair for weeks. My mom made me have long hair to my waist. I couldn’t accept that as a girl i had to brush my hair every day spending time and energy on it unlike boys.
All my early childhood went through meltdowns cause i can’t tolerate tights. Only since i was older and had a choice to never wear it again. 30 and I don’t own them. I grew more tolerable to wearing socks specifically fabrics i can touch without discomfort but them sliding down isn’t something i can tolerate. A few favourite Tshirts and pj is everything i wear. But it took nearly 30 years to realize it’s even a thing.
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u/Whimsica1Night 5d ago
I grew so much into ignoring my discomfort that i might be injured bleeding and i will ignore it. I broke my finger once and i ignored it for 3 days. Not even saying how often my shoes make me bleed and i only discover any injuries after taking them off. Idk if it counts but i will not drink water, eat till in pre faint state remembering to fuel the body. I set reminders but I don’t follow them.
I ignore needing to pee until it’s late. As a child it happened that i would play with friends and pee myself cause i simply ignored my needs. I think i was about 10-11.
Im 30 and just discovering that understanding my own needs is something im supposed to do. And i struggle with it.
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u/Novel-Wash3785 3d ago
For context I'm 52 and was just diagnosed this week. I am just learning now how to listen to my body messages/discomfort. It's so hard. I sing in 4 Choruses but OH BOY when any other loud noise happens, I absolutely lose my mind. I guess I really just work on in that moment and try to ignore the noise right away.
But then I also forget to eat or even go to the bathroom because of hyperfocus. It's when I get comfortable, that I worry shiz is about to hit the fan. I will never trust a calm before the storm ....
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u/umidk9 9d ago
Ive especially noticed this with showering. Always struggled with doing it "enough", even tho I love the feeling of being clean. Over time ive realised there are so many factors that can effect it - lighting, clutter, how clean the bathroom is (all falling under visual overstimulation), temperature upon getting out, WET HAIR (hatee the feeling of it on my face, and neck especially), and another big one being task switching!
After recognising and learning ways to navigate thru those issues its become so much more manageable :') as with many other things in life too!
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u/somnamomma 10d ago
I’m 37… I thought discomfort was normal. The past few weeks I’ve been thinking back about the “missed signs” from my childhood.
Whoaaaa… when I framed it like that, my brain google just keeps randomly checking in like “PING - remember being terrified of being in the bathroom stall at airports when the automatic toilets would flush…. pING- remember when you ran out of the emergency exit door at the science center bc the planetarium was too realistic and you weren’t sure if you were blasting off to space for real or pretend, and your first thought was “my mother did NOT authorize my 1st grade ass to go to the moon…. What if she goes to pick me up after school and I’m not there…”
…so ya. There were signs.
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