Touch sensitive and aversion to cuddles.

carrieanne

I know there is probably a clinical explanation of this condition but I haven’t been able to find it. Maybe someone here has some experience with this?
I’ve had personal experience with being rejected by someone who is over sensitive to being touched or held. I also find that my fingertips seem to need a certain sensation of touch. It may be related to my autoimmune disease and inflammation, but I can’t tell. It’s really becoming a problem lately.
Does anyone know anything about this? I’ve asked doctors about it and they just give me a weird look and have not been helpful. I hope I’m explaining this correctly, it has to do with a light touch with fingertips. Please don’t tell me I’m crazy. I would love to hear other’s thoughts.

pmvines

@carriean
Could mean they are on the autism spectrum , as touch sensitivity can be a thing . I even have certain sensitivities myself when it comes to clothing , and I actually like things that might be painful to others such as when I go to the dentist and when I get hand sanitizer in a hangnail or cut . Different people experience sensations in their own ways .

Another thought is it could have to do with some type of touch related trauma .

SunsetSnuggles

You are definitely not crazy. 🫂

I also immediately thought of the autism spectrum, but specifically, you would want to read up on Sensory Seeking and Sensory Avoiding. 😊

This is geared toward children, but gives you a great breakdown:

~ Sunset Snuggles

🦄 Enthusiast 🏞 Travel Fiend 🐘 Animal Lover

carrieanne

I think overall it’s similar condition but the aversion to affection and being held, in fact this person has extreme anxiety, ADHD and does not really like to be held or touched, and this was from birth. I’ve never known how to deal with it (It’s my daughter).
Otoh For me, I seem to need this ability to touch. My fingertips feel very weird without connecting to something. It’s been more of a problem lately.
Cuddling has helped me a lot because of giving soothing touch. It’s something that feels really good to me.
Like I wonder if anyone else experiences this “touch need”?

carrieanne

Autism is something I never thought about. She is 39 now and still cannot be soothed with affection. I’ve noticed it in her relationships. And I am the extreme opposite the sensation of touch. My fingertips feel almost numb, Lately and I wonder if it’s a nerve thing or the fact that I have RA. I’ve wanted to ask others about this, but thought that might seem a little strange.
I can’t be the only one who is dealing with this! With so many people here who want to be held I wonder how they feel about giving touch hemselves.
As a pro, I don’t receive those sensations. That’s fine. I like the feeling of giving. I don’t know if I’m explaining this right!

carrieanne

@SunsetSnuggles
Thank you for sharing this chart! I knew there had to be some kind of information or research, but maybe I have been entering the wrong terminology when googling because I had not found it.

SunsetSnuggles

@carrieanne My pleasure! I completely understand; it's maddening to try to research something and not find results that validate your experience. Finding them, or being diagnosed, can be a huge relief...tells us we're not crazy, and we're certainly not alone.

Regarding your third post, you might ask your general practitioner about neuropathy.

For the rest of it though, a counselor or psychologist who specializes in autism (ASD) may provide much more light. General practitioners aren't always very knowledgeable in these areas.

If you're interested, you can search for professionals in these fields, and limit the search Filters to include Autism:

https://www.psychologytoday.com/us/therapists

and

This is all just speculation and I'm not a professional; just want to point you in useful directions, if I can! 😊

~ Sunset Snuggles

🦄 Enthusiast 🏞 Travel Fiend 🐘 Animal Lover

carrieanne

Again, I think you are possibly onto something, but there are several different issues here. I can’t do anything about my daughter if she chooses not to get help, there’s nothing I can do. But it all seems connected.
Issues with my fingertips and need to touch, It doesn’t seem to be neuropathy. It seems psychological to me honestly. I just wonder if anyone else has ever experienced this

CentralFLCuddle

@carrieanne here’s one of the tests that therapists use to determine if a person has autism. https://embrace-autism.com/raads-r/

I just grabbed the first link on Google, so can’t vouch for the specific website, but you’re looking for the RAAS test. A therapist is supposed to administer it, but I have shared it with others and they found it useful on their own.

Edit: I didn’t use all of my words, but I should have added that it might be worthwhile for your daughter to do a test for autism if she’s open to it. I found it useful in deterring what coping mechanisms to add to my repertoire for my neurospicy brain.

Runawaycuddles

Ok, first things first, you're NOT crazy!! Sensory issues are actually way more common than most people (including doctors) think and there's a perfectly logical explanation for them.

I'm not a doctor or medical health professional, I'm just a patient who deals with the same kinda issues who's done a ton of research over the years trying to answer these same questions for myself! So, I highly recommend you take a brief look into sensory sensitivity conditions to see if it fits and then talking to the proper doctors about it for further confirmation.
Basically, it sucks to not know what's going on, by it the answers ARE out there!

So, sensory sensitivity conditions or more accurately sensory processing disorders, are super frustrating! Most of the people I know of (including myself) that have sensory issues have the 'tism, but I believe the central cause is more specifically the wiring of the brain, so there may be room for them to occur outside of the autism spectrum, but I'd have to double check.
Basically, I picture it kinda like a soundboard that has certain knobs and slides turned up too high with no way to change it. Everyone has the same knobs and slides, but for those of us with sensory processing disorders certain knobs are up too high and just give wayyyy more feedback for certain things than they typically do for most people, and it has a similar effect neurologically as blasting music or screeching feedback.

Because sensory processing disorders are often associated with autism, the docs that tend to have the best knowledge about it are in the mental health space, specifically with autism specialities.
Autism itself, and by extension sensory processing disorders aren't actually mental illnesses, even though they are treated that way socially and even medically, they're actually classified as both a completely different neurotype (baseline wiring difference, kinda like using android vs Apple, rather than an illness, short circuit, failed system etc.) and as a disability. It's something you learn to live with, respect and work around, but there absolutely are ways to minimize the suffering. I know my life has gotten much better since I stopped just trying to "push through" or "tough out" these things and learned how to work with them. ☺️

Hope that helps! 🤞🏻🤞🏻🤞🏻

carrieanne

@CentralFLCuddle
Thanks also for sharing this information. I brought up my daughter’s condition as a way to explain the contrast with what to what I’m needing in receiving touch.
She is almost 40. this has never been diagnosed and she doesn’t see the problem because this is just the way she is. I don’t think anything will change at this point. I had never thought of autism, but that does sound like a possibility. Is it unusual for someone to be that old and suddenly be diagnosed as autistic?
I’m very interested in knowing why I need to have this sensation in my fingers. Needing this can cause anxiety and stress.
I wanted to know if anyone here experiences this the same thing with Touch?

CentralFLCuddle

@carrieanne I see that I didn’t address the reason that you posted and I apologize. I don’t have the issue with my fingers, but I have very “weird” specific sensory issues. Those sticky hand things make me squidge inside.

As far as your daughter getting diagnosed at (edit: 40) absolutely. I just got diagnosed at 45 and am gently trying to get my mom to go get diagnosed at 66.

carrieanne

@Runawaycuddles
You’re really giving me some great information, about sensory disorders. I just didn’t really know much about the terminology or varieties. None of this was ever diagnosed so many many years ago.
It’s great to get this information from those. of you who have studied it.
I’m sorry to read that you have similar issues?
For me, it’s a fairly new condition And seems to go along with anxiety and stress, Needing the sensation of touching something- a fabric Is one thing that works. It can be calming to me.

TeaCuddle

Interesting thread, I appreciate the resources shared on here @SunsetSnuggles. Thank You!

carrieanne

@CentralFLCuddle
Wow, that is so interesting! That you are getting diagnosed and that your mom is also. That is so out of my experience and anyone in my family. If I even brought it up, they would think I was crazy, They already think that my issues with my hands and RA is just something in my mind. So many people can’t relate to someone else’s experience. If they don’t feel it, it doesn’t exist.

carrieanne

I still have to wonder if there’s a connection. There has to be other people who are craving hugs, cuddling affection, etc. do they possibly have any sensory issues? Or is it more of needing that social connection with cuddling?
I have to wonder if part of what they crave with cuddling is a sensory need.

SunsetSnuggles

@carrieanne posted: "it’s a fairly new condition And seems to go along with anxiety and stress, Needing the sensation of touching something- a fabric Is one thing that works. It can be calming to me."

This sounds like Tactile Stimming:

https://en.m.wikipedia.org/wiki/Stimming

It can spring from ASD, ADHD, etc.

~ Sunset Snuggles

🦄 Enthusiast 🏞 Travel Fiend 🐘 Animal Lover

carrieanne

I am amazed at what you all know about these various conditions, Again, none of this research and explanations seemed to exist back when I was getting an education. But there was no Internet, then no way to immediately do research on something we might’ve been troubled about. Mindset was so different then.
Thanks again for all the help. I will look into what you are telling me about.

carrieanne

“Stimming” I am familiar with this in autism and other disorders I suppose, but I’m not very knowledgeable.
This is recent and just with my fingertips. But there are definitely some similarities in that wiki article.

CentralFLCuddle

Honestly, TikTok has been amazing at raising awareness for me. I do go to a therapist, but seeing other folks who are dealing with similar symptoms as me has been helpful in giving myself grace and acceptance.

carrieanne

Actually, I found this and in my case, I think this is the connection. But the information you all have given me is all new to me very interesting and again could be part of the issue Just not sure This is all new for me did not used to occur, Just started in the last couple of months.

cuddlefaery

Just chiming in as someone diagnosed ADHD, but likely also ASD -

It's possible to be both sensory-seeking and sensory-avoidant, especially if dual diagnosis like myself. I'll go from sensory-seeking one second to waaaaaaaaaaay overstimulated in a literal heartbeat and then have to soothe my nervous system or else every sense will be completely overwhelming.

I'm particularly touch sensitive, which makes cuddling feel absolutely amazing and soothing to my brain - but then all it takes is the slightest wrong touch to tickle me and everything goes into alarm mode. I'm the most ticklish person I know and it is NOT fun, even though sometimes I can enjoy a little tickling there's a fine fine line before it's too much and I shut down. Because this got abused so much when I was a kid, I have a huge amount of touch trauma that I've slowly been chipping away at the past several years.

Getting diagnosed neurodivergent as an adult, especially as a woman, is ridiculously difficult and often involves a ton of medical gaslighting before the patient finds a doctor who actually listens. There's no way to force someone to go get evaluated, but sometimes just sharing info and talking about why you think they ought to consider it may help. If she is neurodivergent, she's probably gone her whole life feeling defective and out-of-sync with a world built for brains that function differently than hers, and that in and of itself causes a lot of trauma and distrust of self. It becomes easier to believe the imposter syndrome and negative criticism, to mask and pretend to conform than to keep fighting.

Also of note: ADHD is highly heritable and also falls on a spectrum of severity and presentation of symptoms, so parents often get diagnosed when they get their child(ren) evaluated. Because it's slightly more socially acceptable now, there's a lot of 30+ folks suddenly figuring out why life has been so hard because they see themselves and their struggles in their kids.

Achterbahn

@cuddlefaery Yes, I was struck by the fact that I resonated so much with things in both the sensory seeking and sensory avoiding categories. I love saunas, spas, rollercoasters, massage, cuddling, fidgeting, etc., but I also use scent free deodorant and laundry detergent because having a scent follow me around all day drives me insane.

Also, I want to second what you said about neurodiversity diagnosis in women. I have an adult ADHD group that I meet with weekly and so many women in that group have experienced what you described. My daughter was diagnosed early but that's mostly because we could see the signs and knew who to connect with. (I also have a son with ASD and I'm pretty sure that my mom is somewhere on the spectrum, but never diagnosed, of course)

sillysassy

@carrieanne I am thinking of you and sending you some really big hugs (that last a few extra seconds than normal with a BIG SQUEEZE at the end)

So much good information being given here and I love that we can share our personal experiences without fear of rejection. 😊

I can TOTALLY relate to growing up in a time where you were just "normal" or NOT NORMAL!!

There are so many things coming to light these days that help people learn, process and basically experience the world in a more enjoyable way.

Think about how something as basic as dyslexia wasn't even accepted/diagnosed until 20-30 years ago. Before that children just got shamed if they couldn't stand up and read in front of the class. NOW we know that there are real things happening inside people and we all have a different sensory reaction to most things.

My son's step sister was "classified" -diagnosed to be on the spectrum and she formally has a chromosome displacement. She doesn't like to touch lotion and gets funky if you try and contain her in a hug for more than a second, but she will slap her legs in laughter so hard I think she might get bruises. There's a MILLION examples of behaviors that don't cross over (these feel contradictory, touch averse/extreme hard touch) but are consistent with the -isms and Sensory Processing Disorders.

Thank goodness for this younger generation who encourages and EMBRACES the fact that we are UNIQUE in our experience and we all might need something a little bit different than the next person.

KUDOS TO YOU for being willing to ask questions and research something that you might have just ENDURED because you thought it was weird or someone might think you are "crazy." I'm glad you found that info on the periphereal RA stuff.

On a side note.... Mother to Mother, I am hearing the pain in your post about the years of not being able to relate or help your daughter in this specific area and I am just sending you some love through the universe. I don't remember anyone EVER saying parenting would be as hard as it is when we can't console our kiddos.

HUGS to you.

carrieanne

@cuddlefaery
What you are saying is exactly what I’ve experienced. I think when the term ADHD first came to light - I can’t remember how long ago - but I knew from what my parents said that I definitely am. It’s a good thing I had talent as an artist from the beginning because I had a successful career. (high school was a complete blur) But did very well in college because I was doing what I loved.
You also perfectly described what my daughter is like. But she has so many issues that she is addressing nothing basically. I think it’s too overwhelming. Maybe someday.
A lot of the terminology that you all have used is new to me and I’ve used it to do some research on my own. Thanks for all your enlightenment. It really does encourage me.

sillysassy

@carrieanne I've been thinking more about what is going on in your world and processing it a bit.

I saw this funny clip that talks about how we sometimes invalidate physical pain just like we do emotional pain. Even if you can't find people who relate to your symptoms.... It doesn't make it less real.

I'm so glad you are a part of the CC Community. 😊

https://www.tiktok.com/@jimmyonrelationships/video/7325805272331504942

carrieanne

@sillysassy
Your words means so much to me. Again, like all the other women here, I have experienced or read about most everything you’ve talked about but only recently. Honestly, this forum and the information the women here provide has been so enlightening. This new awareness is so recent and what you have all talked about. I’m pretty sure that other people in my day to day live have no idea about any of this. You’re fortunate that you will live your lives with this awareness. I had to be really old to learn about it, lol
All these differences have caused a lot of insecurity for me. In how I think, other people see me. I know you all understand what I mean. But actually, I feel fine about the way I am and feel that my family just doesn’t understand me. That’s fine.
Again, reading all the things that those posting here have said is so reassuring. I appreciate that you took the time to share!!

carrieanne

Omg @cuddlefaery
What you’re saying about tickling!!!
My siblings used to hold me down and tickle me, and I couldn’t breathe and it was the most terrifying horrible feeling ever, I cannot stand to be tickled. But the opposite is true of my grandson he loves it. I’ve also wondered about things with him. He has some issues with stuffed animals and hugging. He’s only seven but I think that he is probably ADHD also since his mom and grandmother are.
His Dad possibly is. I’ve also wondered if he’s on the spectrum. That’s a whole Other story about him.

carrieanne

I find myself wondering this a lot ….Are all families this…”unusual”
Are all people neurodivergent in someway?
And what is normal anymore and what causes these conditions in people?
Toxic Diet? Packaged food industry? Toxic Environment? Toxic influenential people?? Social media? Awareness now with the internet because of access to what others are thinking and feeling?
Have they always existed, but there were no words and people didn’t talk about such personal things?
No one who I was around when I was growing up in the 50s 60s maybe 70s talked about any of this except in 1970s for sexual orientation - started becoming slightly acceptable to talk about. There were no terms to begin with, and people just focused outward and what they need to accomplish in their life. If there was reflection, I wasn’t aware of it.
I believe that these human conditions have always existed, of course from the beginning to some degree. But again people didn’t used to talk about personal matters openly. That was not acceptable and was considered very strange. People have always been very private, but that is not the case now. It’s refreshing, but still feels odd to me sometimes.

Katota

@carriean
Could mean they are on the autism spectrum , as touch sensitivity can be a thing

@pmvines Thank you, I was going to comment the same thing. Due to my son being autistic, he is touch sensitive even when he was a baby he didn't like being held as much...Lol!😁 Aside from squirming and hollering trying to "get away" from adults who were trying to pick him up or hold him. 😏
He wasn't very responsive to being held at the time. Of course, I didn't understand it then due my being ignorant (and yes there was LOADS OF DENIAL on my end🤦‍♀️, DEFINITELY LOADS on his father's end as well🙄 I believe his father died with denial still inside of him😒) of autism and not fully understanding of it.😏😌

My son is 15 now, and he still tenses up a bit 😬 if I try to hug him now...🫂😁
But he doesn't squirm anymore (Lol) so baby steps on his end at accepting a random hug from his Mama and baby steps on MY END for understanding and educating myself better on autism and seeing how wide the spectrum really is. 😁

How I came to understand touch sensitivity was from reading Quora forum boards when the question of "hugs and autism" was asked. A commenter said something like....

"Imagine hugging somebody wearing a coat with needles sticking out, THAT'S WHAT an autistic person is feeling when you hug them..."

And I was like: Got it!👍
Lol!😁 And I thought back to his reaction towards hugs all those years ago, and truly understood why his squirming was necessary all those years ago. 😊

It's been years since I have clicked on Quora so said comment may not be word for word, but I definitely remember the "coat with needles sticking out" part.🙂😉

carrieanne

@Katota
You are describing exactly what I have experienced with my daughter and as a mom it is so heartbreaking and difficult to accept. My daughter was born in 1985 - when I brought this up to doctors they just looked at me like I was a little crazy I thought I was doing something wrong I felt so rejected as a new mom. Even as a newborn, she would tense up and pull away when I would try to hold her. Would scream and I could not comfort her when she cried, nothing worked.
Doctors always said oh it’s colic, that was their diagnosis for pretty much everything back then. It led to depression and fear, and there was no one who understood.
This awareness now is so important and I’m so grateful for a way to information. That there are actually names for these conditions amazes me!
Autism I don’t remember ever even being a word that I was aware of when I was having my children in the 80s My daughter was diagnosed at least as being ADHD in the 90s I know autism existed. I didn’t know much about it. When I look back, I believe that my daughter and grandson and maybe even myself are possibly to some degree on the spectrum.
At my old age, lol I’m not going to probably change too much but the awareness is so helpful. Thanks for sharing about your son. At least you know it’s not something you’re doing wrong hopefully and that you find other way to show affection with him.
I have to add that my son was completely normal and made me finally feel like a mom when he was born. I hope to see him soon, but he’s so far away. I miss his hugs.
And in a few months, I will be probably moving to S Korea For a while!!