Sensory issues (long post)

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Hello there. My first attempt at a sort of discussion, so I hope I don't fall flat on my face.

I'm pretty new to the idea of having Asperger's (not diagnosed, though my former therapist and a couple of other people on the spectrum suggested it to me)...given that my understanding of it was so little back then, I brushed it off, thinking it did not at all apply to me. Reading I've done since then is starting to convince me otherwise. And LOTS of issues that I've experienced my entire life, and have never had any explanation for, make some sense in light of this understanding.

But I'm getting ahead of myself and could be way off here. What I wanted to ask about was sensory issues. By that, I mean that certain things--sights, sounds, tastes, smells, and especially physical/touch sensations--can be so incredibly bothersome that they can send you into a deeply depressed mood as long as they persist, or might even send you into a frustrated fit.

I've already seen posts regarding sounds and sights that are overwhelming, but it's tactile things that seem to set me off the most (sound being a close second). There are SO MANY types of clothing I just cannot stand to wear. I can't wear tight/form-fitting clothing (and not just because of my unflattering figure) or I'll feel like I'm being constricted. I can't wear turtlenecks; feels like I'm being strangled. Excepting coats/jackets, I can't wear long sleeves; too smothering and skin crawling. I can't wear anything that feels furry on the inside--ick ick ick. I can't wear any sort of pants/shorts that I can't pull up absurdly high (and still have lots of room in the, um, groin area) because the feeling of anything sitting low on my hips drives me crazy. I can't wear bras that don't have a racerback because the feeling of the straps sitting wide apart on my shoulderblades infuriates me. I can't wear socks because the fabric bunching between my toes just...ugh. I can't, um, tolerate undergarments. (Won't say further on that issue. ) I can't wear choker necklaces or scarves for obvious reasons. And I hate hats and even glasses. (Though I'm probably going to need the latter sometime soon...)

Needless to say this makes finding decent clothes incredibly difficult, especially given that I'm overweight and they don't carry the higher plus sizes around here. So that means I often have to settle for wearing clothing that makes me feel very ill at ease. (Still trying to find a decent bra, and of course the store no longer carries the men's plus-size rayon Hawaiian shirts that are the only thing I feel comfortable lounging around the house in... ;_; ) I don't even bother trying to look good (impossible anyway), just to look passably okay while feeling comfortable. Sometimes I actually wish I could get away with wearing robes everywhere!

It's not USUALLY so much the texture of clothes that gets me (except furry- or flannel-lined things) as the particular way they wear on the body, their fit. And these problems extend to more than just clothes. When I had long hair, I could not stand wearing it loose and feeling it brush against my neck; I had to have it in a tight ponytail high up on my head. (Putting it in such perfect ponytails proved to be almost impossible due to my OCD, so now I have to keep my hair cut moderately short just to avoid this issue. I cried my eyes out when I had my long hair cut off, but it had to be done.) And don't get me started on getting comfortable in a seat or especially in bed...it can take me quite a while to get my entire body situated in such a way that I can finally get to sleep. (Sometimes just the way a blanket drapes over me is so bothersome...and, well, I gave up on sleeping in clothes long ago. It's difficult enough getting comfortable without them! ;_; )

UGH I cannot stand seams and wrinkles!!

And I can't take showers, because the sensation of the water splashing over my face makes me feel like I'm drowning. (I prefer baths anyway, but still.) I could probably go on and on...

I've tried numerous times to explain to my family that it's not like I mean to be picky or high maintenance or anything, that these sensations LITERALLY send me into a fury or, even worse, a deep dark depression, until the thing causing the sensory issue is removed/fixed. Otherwise, it's like the equivalent of walking around with a big pebble in my shoe, or of having sandpaper scraped against my skin, or of tight bonds being wrapped around me in sensitive places while I'm expected to pretend nothing is bothering me. And they never believe me. To them, I'm just too picky and whiny and dramatic, surely I'm exaggerating, and I should just get used to it. I'd love to get over it, but...I'm 38 years old and have been like this my entire life. The discomfort is physical and it's real. It's not going away. I can be amenable and even cheery if I'm physically comfortable, but when that can't happen, there is no understanding or empathy and it's all blamed on me. So frustrating.

...

So anyway. Sensory issues. I'm not seeking advice, just wondering. Are these sorts of things common with Asperger's? Or am I totally off base?

Sorry for the length of this...

I would say those issues are quite common. In order to maintain my sanity (which tbh is shaky at the best of times) I can only wear certain fabrics and styles of clothing - usually well-worn 100% cotton. Fabrics such as flannelette, fleece, wool and polyester literally make my skin crawl.

I wear only loose 100% cotton most of the time.
No socks or underwear.
No turtlenecks or ties.
No jewelry.
No glasses even though I'm near-sighted.
Mostly just loose jeans & t-shirts.

When people whistle (or scream, shriek, or sing in a high pitched voice without good voice control) it triggers a rage response which, while completely sublimated these days, ruins my mood & a physical sensation which makes me want to scratch my heart out, a sensation which requires endorphins to correct.
To get the endorphins without screaming & lashing out, I bite my fingers and when it goes on long anough, my arms.

Showers are difficult but I also like them to some extent.

When my hair is long as it currently is I usually have it back in a ponytail.
Getting haircuts is difficult too though, because of being covered in hair and all itchy afterwards & needing to shower both before & after.

I have to cut my nails in the shower so I can run water over the exposed skin afterwards which is difficult & extremely uncomfortable because otherwise I can't touch anything with my fingers for a day at least without it feeling like a charlie-horse in my finger every time.
Even after I desensitize them by running water over them for a while, they're still somewhat more sensitive to touch & uncomfortable for days afterwards.

There's more & I could go on, but I think I've made my point...

...And I'm so 'high-functioning' that people very often refuse the believe me when I tell them I'm autistic saying, "You seem normal to me."

So yeah, I'd say that sensory issues are pretty normal for Asperger's & ASD in general.

When I was a child, I believed them when they told me I was just complaining about stuff that everyone else just deals with and that I should just tough it out.
In other words, I thought all my sensory issues were what everyone else was experiencing & that I was just a wimp for not dealing with it as well.
As an adult & since being diagnosed over 15 years ago, I've learned to stick up for myself & not let anyone else dictate to me what I should & should not be able to deal with & handle & to accept that my sensory experiences & aspects of my neurology are significantly different from those of allistics.

Convincing & reminding the allistics in my life that my perceptions are substantially different from theirs as a result of my brain being wired differently is an ongoing challenge & source of difficulty.
What I can tell you is that explaining it as an integral part of me being autistic & what that means has gone a long way towards getting the allistics I'm closest to to really understand & accept that my sensory issues are real & that they need to be respected & accomdated.

The first step to having your sensory issues respected is standing up for yourself & demanding that your issues be acknowledged as real & deserving of respect.

Yes they are common.

I have some of the same ones you mentioned, such as not liking turtlenecks, or long sleeves, or clothes that ride low on my hips.

My tactile issues are probably the worst, just because they are perpetual and I can't get away from them like I can from a noisy environment. I have days when I just don't want anything at all to touch me.

I'm very picky about my clothing. Certain types of fabric feel horrible to me, like cotton/polyester blends. Things have to fit a certain way and I can't stand anything tight around my waist. I mostly wear skirts with elastic waistbands, and cotton or rayon knit tops. No jeans, no pants that button, no button down shirts.

But unlike many people here, I love showers and I love getting wet. It's like it calms and resets my nerve endings. Nothing soothes me like taking a hot shower, then getting in bed.

I have had similar issues. It has gotten better as I've gotten older. I am sorry you are stuck with such a severe dose of that particular problem.

I know you aren't asking for advice, but I can't help but offer one thing that might help. Imagine stretchy knit material. As it stretches, your body hairs slip in between the fibers of the material. Then the material contracts with those hairs between and amongst the fibers, pulling on them. Shave all the hair off on your body that you can, even your arms (I'd avoid shaving the groin areas though as that can just make you itch like mad). Shaving does not really cause hair to grow back stiffer because shaving does not affect the hair follicles themselves. It feels really weird to be freshly shaven, kind of like you are in a bubble or something because without all those hairs interacting with your environment, the nerves have less specific sensations to report to the nervous system. Anyway, I find it helps because the clothing can't grasp onto all your hairs and pull them. The thing is when the stubbly hairs grow back in, they can be bothersome too when they are growing out and are sticking out of your skin enough for clothing to press on them. Just something that might help a little.

Alot of mine are very similar to yours.

I have long hair but it must be kept up in a bun or a knot, and if even one hair is across my face tickling me it'll drive me nuts till I either secure it or yank it out

Clothing tags, either behind the neck or in the side seam, drive me bonkers. Even cutting them out sometimes isn't enough as it just exposes the raw scratchy cut edge which can be worse. I've donated clothes for this reason.

I used to hate turtlenecks as a child. I have one turtleneck now that I wear in winter as I hate the feeling of my scarf opening enough to let a tiny stream of cold air into my neck LOL, it is cashmere & supersoft. I cannot wear anything with even a tiny bit of mohair in it - Itch Central. I can wear Merino wool as it is soft but I still need to put a longsleeved cotton undershirt underneath. I wear only natural fabrics if I can help it - my work uniform was polyester & no amount of softener softened that stupid itchy fabric

I have sensory/tactile issues with some foods, but not the ones you'd expect. I can eat liver, I'm not crazy about the texture but I can get past the texture if I have a pile (and I mean a *pile*) of onions & mushrooms on top. I find I have more issues with the texture of cooked egg whites lately

I was at a breakfast event this morning with several people I didn't know well, and the lady beside me kept laughing very loud, I had to consciously restrain myself from putting my finger in my ear.

No hats, I don't care how cold it is. I can do earmuffs though as the feeling of cold air down my ears is worse than the slight head constriction.

Thank you all for the replies! While I still wish I knew how to convey to the people around me that I don't mean to be so picky, and that I can't seem to just get used to things that have been making me miserable for a lifetime, it helps a little bit to know I'm not the only one...some of the things some of you typed out really struck a chord.

I don't tend to get the queasy or sick feelings many around here report when it comes to unpleasant sounds, but I do get horrible rage reactions...all my life I've written it off as just having a lousy temper, because everyone around me has insisted that's what it is. (Even the therapist who suggested Asperger's to me kept trying to find ways for me to not get so enraged, but things like snapping a rubber band on my arm do nothing. ) And when I get enraged...I tend to hit hard surfaces or, if I don't wish to break something, I'll hit or claw myself or tear at my hair. ;_; Fortunately those reactions aren't usually triggered by sounds, though I've been known to nearly destroy the source of the noise in an effort to get it to stop...

I always feel horribly contrite and childish afterwards, and tell myself never to lose my head again, but when the rage comes over me it's like I lose all sense and some kind of destructive toddler takes over. It never occurred to me before that my uncontrollable rages might not be simply a lousy temper after all.



Ugh, I forgot about that. So horrible. I have to make sure my mother cuts my hair before I take a bath, as well as on a day she's going to go do laundry, otherwise I'll be clawing at my neck all day long!



Yes, this is exactly the reaction I've gotten my entire life as well...it perplexes me that after 38 years, they'd still think it's something I could just get used to. My mother has even said I just enjoy being miserable and making others miserable...that really hurts, since I'd like nothing more than to never bother anyone with my issues again.



I would like to explain this to them, though they tend to just tune me out whenever I try... I had always figured that if you empathized with people and showed them support, they would do the same in return, though that hasn't been my experience in life so far.



I love taking long hot soaks in the tub...it's like a drug to me. I just can't tolerate water in my face very well; until relatively recently I couldn't even submerge my face in a bowl of standing water without feeling like I'd drown. And I love splashing my feet around in puddles or lakes. But if the rest of me gets wet when I'm not taking a bath...all I feel is super irritated.



I can't believe I forgot clothing tags! Urrrrgghhh they are Satan. I can't count how many pairs of pants/shorts I put giant holes in just trying to remove those things...



Ah, I can't even get started on all the food texture issues I have, I would be here forever. _-_ Once in a while there is a tiny light at the end of the tunnel though. Most of my life I refused to eat cooked mushrooms (loved them raw, could not stand them cooked) as to me they felt like swallowing a slug. But one day I finally ate some and now I love them. They still feel a bit like slugs, but, whatever.

Now if only I could do that with all these other annoying sensory things. ;_;

I hate having my head under water. I'm not good at remembering to hold my breath. Even just letting water run over my face in the shower, I'm likely to get water up my nose. lol