Things I didn’t know as a late diagnosed autistic mom
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- Опубликовано: 1 май 2024
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Abruptly being done in a conversation is a big one for me.
What does it mean? It sounds like you stop talking because you're annoyed or frustrated. Is that what you mean? Or just that you've already said everything you wanted to say?
Yes - almost like it's physically painful, suddenly, to continue with one more sentence. The urge to just stop is intense. I override this continuously, because I'm very polite!
@@frohnatur9806 sorry, I didn't see your question before the next reply.
Sometimes, I've said all there is. Sometimes, I literally cannot continue speaking. It's like if I do, I'll go into a panic attack or autistic meltdown. This is more common during a social conversation, arguments, or a conversation that's "going nowhere".
@@TessA-es3if I think I know that feeling. At least when I feel like the conversation is just going in circles. But I think it's more often the other way around, that I talk too much about my interests without being asked
@frohnatur9806 my daughter is autistic and she's like that too.
I just start staring out into space and can't understand anything
I have this issue too. It happened during my last physical. My Dr was rattling of several tests she wants me to consider. I went blank, started to panic & got dizzy & very fatigued. I still don't really know what she said to me. I need to try to get her to type up these things.
@@myimperfectlife2023This 100%! 💡 I have an app on my phone and ask persmission to record the conversation. No healtcaretaker told me 'no' so far.
@@myimperfectlife2023 I usually take a notepad with me - with things I want to say and to write down what the doctor says. That helps. Finally understand why I've been so 'zoned out' most of my life.
Oh wow, the moment of suddenly hitting a wall in a conversation and itching to get away.... I didn't realize other people experienced that.
I spent a lot of my life thinking everyone else experienced the same things I did, but they were just "better" as people and could 'handle' it all more :|. No one around me dissuaded me of that in any way, but I'm finally starting to tell myself that no, I'm not morally wrong for being dysregulated.
I’m realizing that much of my anger is about childhood trauma, AND the additional stress from my autistic sensitivity.
The unwillingness to talk, I thought, was just being told to be quiet, originally by my father. However, as I learn more about my autism, it includes just what you describe - as NEEDING to shutdown!
Thank you. I’m late-diagnosed, at 80, last year. So much makes more sense!
happy for ya
That sounds empowering!
Probably very frustrating but empowering to find out
Some kind of explanation.
Keep finding your voice!
I feel all this! When I’m tired anything on my skin hurts!! I’m 67 and was just diagnosed last year, wow my life finally makes sense
For me, the skin thing is my first warning sign that im too close to the tipping point. Its tight and itchy but not itchy and im super aware that im in it, i describe it like it "feels like im wearing someone else's skin". Its like its *almost* the right fit, but it doesnt fit/bend/move quite right. If I don't stop and de-stimulate immediately the next step is the shoulder and neck "need to be rolling all of them/shrugging" feeling. i didn't realize the feeling - or the sign as a symptom of impending meltdown - until wonderful Paul Micallef (Autism From The Inside) described it in one of his youtube videos - it is like wearing someone else's shoulders, they don't seem to fit/feel/sit right.
THANKS TO THIS COMMUNITY FOR GIVING US THE WORDS TO DESCRIBE THE WAY WE FEEL!
Omg. I do the shoulder shrug thing too when I am tired and overwhelmed too. I didn't know other people do it too. I usually can keep it together and hide it until I head home after work and it helps me decompress. I guess it's a type of stiming.
“Not fitting right” is a pretty good way to describe it I think. I was going to ask if other people feel like their skin is agitated, because I’ve tended to say “it makes my skin itch” but my skin doesn’t _actually_ itch, so that isn’t quite right, but I could never find a better way to describe it. But then watching this video I wondered if “skin feeling agitated” would fit for anyone else or not.
I personally feel and say that my skin is crawling. My veins actually stand out
@@rhiannebiddiscombe134 i have that sensation too. On my scalp. Feels like worms are trying to push through my skin from inside my scalp. That's a tough one to deal with.
:::empathy:::
As a teacher, the sudden 180 from "yay my students are chatting and having a good time (:" to "AGH WHY ARE THEY ALL TALKING AND MOVING AND MAKING NOISE AAAGHHHH IT IS SO DISRUPTIVE AND UPSETTING!!!!" is so ....... just frustrating. Like girl cmon you were fine 20 seconds ago, why are you suddenly so sensitive to sounds... relax
This is soooooo true!
Omg lights being insanely bright sometimes is so me. Sometimes they actually trigger migraines.
For me bright light come from lightbulbs yet the sun doesn't feel that bright. AT work right now where the light above neighbors cubicle feels brighter than that sun if I look in that direction but instead providing warmth like does this light suck the heat from me. So Space heater and electric blanket to deal with it.
Same. If I see a light and think “ow,” I know a migraine is coming. Tinted glasses have been a game changer!
Ummm. IM DONE! growing up my parents would talk about all the things i needed to do better daily. I would literally say IM DONE with this conversation and they would continue pushing me. After i was DONE from school and homework. Seriously I moved over an hour away and my mother still doesnt get it.
The “I’m done!” happened to me recently when I volunteered at my 11 year old granddaughter’s school dance. I’m not fond of being in the middle of a bunch of people and ear-shattering noise, and after about an hour of that I almost felt like my head was floating away from my body, along with feeling almost catatonic. It took me a day and a half to recover. Don’t know if I’m actually autistic or not, I just know that I can check a lot of the boxes.
Whether or not you are, the methods to help with the "I'm done"-ness can still be useful to you. :)
Omg the when you’re done with a conversation oh hell yeah.
50yo and just now identifying, sorting, stacking my experiences which includes autism, add, alcoholism, other acronyms. As a gen x chicano male i want to thank you for your work encourage and plead for you to continue this that you’re doing because its bringing me clues to help me figure out this big puzzle and find peace with me.
The ugh skin feeling is how I feel when my allergy meds start to wear off, but before I actually start itching. I can just REALLY feel my skin and all of the things on it and the hairs moving. Curious if an antihistamine would work. Might be unrelated, but I thought I’d share.
Tighter clothes (like leggings and fitted tops) work better for me, no rubbing, brushing past or barely touching fabric hitting my skin. I had no idea how triggered i was MY ENTIRE LIFE by clothes until my "covid wardrobe" became a thing and i was no longer feeling the way i did in "office" clothes.
@@user-ye1go6hw9rI am the opposite at least on my arms. I cannot stand tight clothes especially on my lower arms
It’s similar to restless legs syndrome. Almost a creepy crawling feeling. Some meds do it to me too. The nervous system becomes over taxed and starts short/circuiting.
This is the first time I’ve heard someone else describe the non-itchy itchy skin sensation!! I experience it too, and haven’t had words to describe it.
For me, I have that “not-an-itch” itch when I’m dysregulated, but only when I’m dysregulated by a transition. For me, it happens most often when I’m pushing myself too fast or too hard to transition into doing something.
For example, sometimes I struggle to get out the door for work on time, and I push myself to avoid being late. Then, on the drive, I’ll get the non-itchy itchy skin on my arms. I’ve learned that that sensation means that I need to slow down or find some time to rest over the next few hours to avoid a full shutdown or meltdown that evening.
Facts on facts on facts but the skin thing leading into a meltdown or shutdown 🤯 just realizing that one.
For me, I experience very little discomfort due to lights or sounds (except for live amplified music such as in a bar) and I even actually enjoy the experience of shopping at Walmart for instance. However... if I spend the weekend out doing things in town such as shopping, going to church, or being around people, my Monday is completely gone and sometimes Tuesday as well. I used to think maybe I was fighting a virus or something... now I think it's some sort of autistic overexposure symptoms.
I've ALWAYS Said that I need to "Change my skin", when I get this sensation. It NEVER made Sense to anyone but me. That is, until I found you and your videos. Thank you very much for all that you do!
My skin feels awful in synthetics, I feel much better after getting rid of all of them from my wardrobe. Love cotton and linen ❤
In all honesty, I dealt with that when I was very young, but couldn't contextualize my feelings, so I felt I could do nothing but just be weird & absorb just other people's feelings about how I acted. I'm currently going through a s**tty cycle of a bad burnout with work, moving out, etc. I lose my words a ton in my life of work, because there are so many demands tasked on me, even sometimes, even a statement or question can feel dissimilar. I've been better about asking for my space, so I'm getting my victories, for what it's worth.
glad there are some victories!! keep going 💪
Yes, my skin hurts a lot of times. Thank you for sharing that, because I was just searching for an explanation. Whew. ❤
Absolutely concur, with all of these points!
Yes ,yes,yes thank you. Yes on the skin !!
Thank you Taylor! I've experienced all of these too. Especially abruptly being done with a conversation. I'm learning to have grace when I start feeling any one of these. It's not easy but it's getting better with practice.
Wow so many fascinating comments about itchy but not itchy skin! My 7yo daughter has been randomly scratching all over, especially her legs. There’s no marks on her skin and we switched to free & clear detergent and mostly cotton clothes. When I ask her about it she says she feels itchy. 🤷🏻♀️ Thank you everyone for your adult descriptions of the feeling. I think that’s exactly what she’s experiencing and I’m glad to know it’s a real thing experienced by many! She’s ADHD, ODD, with sensory issues and probably ASD as we’ll soon find out.
Word for word. 🩵
The skin thing, it’s the first time I’ve ever heard anyone else describe that! Wow…I learn something new all the time now
One nice thing about my mom and me both being autistic is I can just be in the middle of a sentence and be like, "eh, I'm done with that" and she gets it
that sounds nice!
That first part about early signs of a meltdown (losing words and all sensory input intensifying) sounds so much less like anything I've heard about sensory overwhelm and meltdowns so far, and so much more like my personal experience.
I'm not diagnosed, but I have ADHD and suspect it's autusm too, but the typical descriptions of meltdowns and sensory overwhelm are so unrelatable to me, that I'm still uncertain
I have Restless Legs Syndrome and the weird skin sensation feels just like restless legs but all over my body. There's medication for RLS that seems to help with the all over skin sensation for me, it's called Pramipexole. I also take an herbal supplement that helps both with weird skin sensation and helps me to be a little less sensitive to stimuli.
@gingermclark what herbal supplement do you take?
@MrJivanMukti It's called kratom. Some people are against it, but it's completely legal and is even less bad for you than cigarettes or alcohol. Some people don't like it, though, because it's mildly addictive 😒 Some people also call it an opioid, but it's not. It's simply the leaves of trees in different areas in Asia. It's NOT derived from the poppy plant, which is where a true opioid is derived from. They want to call it an opioid because it effects the brain somewhat similarly to how opioids do, but to a far less extent. It's completely safe, unlike a true opioid. My husband and I use Earth Kratom brand, Trainwreck. We take about a teaspoon mixed in a little bit of water. It tastes very bitter, though, so we only mix in about a shots' worth of water followed up with plain water to rinse out the taste. If you're just starting out with kratom, though, I'd suggest using only a quarter teaspoon, which is about a gram, then use more as needed to get the effect you want. Like I said before, it helps greatly with the RLS sensation in my body, and it boosts my mood and helps me want to be more social.
@@gingermclark thanks for the info. I appreciate it.
I just did that in "therapy" yesterday. I came in with a plan, got thrown off right at the beginning when they told me they didn't even know what the appointment was about. Never got into a rhythm and then hit the wall. I told her I lost my train and couldn't think of anything else to say. My mind had gone almost completely blank, and I felt like I had made no sense to her. She stared back, with a mask on mind you. After a moment, she said she was still listening. I had to repeat myself, I could think of nothing else to say. Waited 3 months for that. When asked about future appointments, I managed several, nope. I'm having a hard time navigating NT doctors, I think I need to find an autistic therapist sooner rather than later.
I have often told my mum in times of overwhelm that I felt as if I needed to rip my own skin off. I have had big issues with accidental self harm because of it. Itchy but not itchy. It can happen with clothes too, where I just need to change, or get my clothes off asap.
I love that I found your channel because it's helping me come to terms with a lot of things that I've been in denial about. And I love that you continue to post videos like this explaining your Epiphany is because I can totally relate
I always thought everybody was handling it better than me too.
I've had some really hard lessons the last couple years
With my sensory dysregulation
I didn't know what was going on
So please keep posting your thoughts
You're helping light the path that I'm currently just now stepping on.
I’m absolutely the same! There’s a running joke in my close family and friends where I say to them ( this will sound sarcastic as I am British lol) “ well I feel the conversation has dried up here “ they find it hilarious but also aren’t offended when I leave the conversation 😅
When I have a meltdown, it can come out as crying, or self injury. I really want shame because I cry. I don’t like it when people give me sympathy. I really want shame. Sometimes CPTSD flashbacks can cause meltdowns for me too.
Yup, the skin thing, constantly. Figured out my autism and now I'm acutely aware of the excoriation stimming. I've done it all my life.
I'm not formally diagnosed yet (I'm looking into getting assessed, though!) but I definitely relate to so much of this. Sometimes the shut downs can happen SO abruptly, especially if I'm in situations where I've been masking for a long time, like events or get-togethers. It's actually especially frustrating when I'm very much enjoying the conversations, but just... hit a wall and start feeling dumb for not being able to articulate my thoughts anymore. (Nevermind that it's also frustrating when other people at social events are often so ready to move on from conversations and "mingle" with other people, which can trigger me to feel rejected even though i know that's not the intention. I also just found out it's a very common autistic thing to get upset by these aspects of navigating interactions. AAH!)
AND THE SKIN THING, YES. That's been a life-long problem for me, too. I would describe mine more like a constant mild "burning" sensation, like there's just these warm embers embedded underneath all my skin that get enflamed by touch sensations and bad textures. It's not exactly painful, but it's annoying.
I did know nothing about meltdowns. But at parties, i tend to flee at some point. Without saying good bye i disappeared. Or being absent behind a bush in the garden for a while. Skinwise, cotton only. Wool is horror. These days hard to find trousers without lycra .
100%! Cotton yes, Wool intolerable. Also nothing plastic-likish. Etcetera
Undiagnosed here, but i related to this, especially the skin thing. When I'm tired or over whelmed, my skin and joints start to hurt. It kind of feels like when you have the flu and all your joints hurt and your skin feels bruised and tender to touch. I never see anyone talking about it and im glad to hear someone else experiences it.
Ughhh yes! Before I understood what was happening, I would zone out and become so highly aware of everything around me, and the anxiety that would stem from that was AWFUL. It was like being present physically but being completely outside of my body, and I would freak out and wonder what was wrong with me. Now that I know the warning signs, it happens so less often, and even when it does happen, I understand why and can work through it a lot better. Honestly, my life and my struggles make SO much more sense through the autism lens, and even though it took me 30+ years to figure it out, I'm just glad that I did ❤️
With my allergies, my skin is just constantly itchy in the traditional sense. No detectable correlation to stress, and I'm not hypersensitive to it so I mostly just tune it out while subconsciously scratching myself all the time. I don't think I have any of the fabric or tag sensitivities that other autists report, if it contributes to my general level of itchiness, it's still below the threshold for me to tune it out.
My skin, muscles and bones hurt all the time! During my ASD diagnosis they said it wasn’t normal but it’s great to hear you get it too ❤
I remember telling my doctor that it felt like I was wearing my nerves on the outside of my skin. 57yrs old...undiagnosed
Yes! My skin ALWAYS feels just wrong. Kinda itchy but kinda just unsettled.
I struggle with skin discomfort as well. Especially with my legs.. If I can't just wear a skirt and not feel too much fabric against my legs then I am pretty much screwed lately. It gets so damn itchy I cannot concentrate on anything! I have phases when it gets worse and phases when I don't struggle as much. But Winter is not fun for me. Having to wear as little clothes as possible is just most bearable.
I hope it's not out of line, I have followed your channel for months and you have been an amazing asset in my life as someone navigating severe ADHD and likely to be farther on the spectrum, and I gotta say your look is so rad and you are such a beautiful human. :)
Everything you shared is ME. i have this happen but definitely yesterday. Thank you 😊
I don't think I have ever had a meltdown, or if I have, I have forgotten it, or just not realized what it was (though I think I have experienced shutdowns),
but I can relate a lot to suddenly feeling done with conversations, becoming more irritable, and just wanting to leave, though I often end up not leaving and just sit there contributing nothing, and I don't leave because I'm scared that it'll be considered rude, so I just wait until someone else leaves first.
(Note: I have some suspicions that I'm probably Autistic and/or have ADHD, but I haven't gotten assessed yet.)
I realized in the last years that I don't like to sweat because it makes my skin prickle. I think there is always an underlying awareness of how my skin feels (usually some level of discomfort unless I'm resting).
+momonthespectrum *Rather than meltdowns, I've shutdowns: Had a meltdown yesterday due to forgetting about a pet.* Self-punishment resolution: Getting a harness that'll couple to pet's harness via a tether.
oh wow, yes. and there are so many layers and discoveries when we have these ephiphanies. I'm in it right now. thank you for reaching out
My skin gets needle like pain out of nowhere. I have fibromyalgia and have been given an autism questionnaire that came out 33/50 for autism. So, do I hurt from the fibromyalgia or the autism? I've been at a bar to play trivia and it's like someone throws a switch which increases the noise level to were I can't stand it. Any high pitched sound drives me crazy. The list goes on and on. 🤯😬🙄
I've never heard autism directly correlated to fibromyalgia, but there is a chain of documented correlations, Autism EDS fibromyalgia.
Also, anecdotally, my father had fibromyalgia, and a good chunk of my AuDHD came from him. Nobody in our family has EDS to my knowledge, but both me and my brother have significant, but sub-clinical, hypermobility.
According to my fibromyalgia doctor, she definitely sees a link between a lot of these. Hypermobility is often seen in autistic individuals. My back is damaged so I mainly can’t bend the waist if standing, but all the other joints have a party. We don’t see others in my family with that and they couldn’t diagnose EDS, though I have all the other symptoms and issues.
I am 49, have fibro, chronic migraines and cervicogenic headaches, occipital neuralgia, TMJ, hashimotos, adhd, autism… and others. But my skin will hurt and burn and a lot of the aches and pain I’ve had since I was young. I was even a colicky baby. I also suspect MCAS at this point that’s worsening. My nervous system is chaos. Symptoms of so many things overlap.
I think just living in this world is so stressful to our minds and bodies that it simply leads to a lot of these issues. Stress results and can impact the immune system. Mine is in overdrive.
I do also get the I’m done thing and it’s instant. I get massive irritation and have to exit or I’ll explode or shut down. I was having panic attacks, but not like text book, only to find they’re likely meltdowns. I now deal with near agoraphobia because everywhere is filled with perfumes and lights and music and noise. I can’t handle it. I don’t want to leave my house. I’ll end up in tears and a mess.
Autism doesn't cause body aches but related conditions can. Like POTS and EDS.
Fibromyalgia is often a misdiagnosis for POTS or EDS.
@@Catlily5 I didn’t know that. As the first in my family dealing with these issues that we know of (my family never talked medical until my generation) it’s been hard getting things addressed. I know I’m not responding to any fibromyalgia treatments (even to lessen the pain) they have tried and my fibro doc does say that her hypermobile patients are less responsive.
Same. How could I know, if other people don't feel the same way?
It's originally the same: I always thought, maybe others are feeling the same way or are even acting that weird sometimes, but maybe are just able to hide all these things better.
All of it- thank you for the language!
Everything in general, yeah. On the skin part, double yeah! I would describe it as like... my skin is sore in the same way my muscles are sore after working out but at the same time, also... throbbing/burning or like... numb pain/discomfort.
Does anyone have trouble hearing? I had a hearing test and was told I had great hearing, but tend to not be able to hear well when there is multiple sounds in my environment.
I've found the repetitive movements and mantras of kundalini yoga VERY helpful in regulating my nervous system. It's almost like it was designed for autism!
I'm still learning ❤
When I get into overwhelm, it’s like I want to crawl out of my skin. It physically hurts and it’s like I just want to unzip my bodysuit and walk away lol. I can totally relate to the skin thing.
I have that feeling in conversations and I’ve always felt like a terrible person for it and don’t know how to gracefully exit them. For people who become ‘done’ like that- how do you handle that?
Yes. Same. Now I know why I was irritable all of the time for years and years and years. It turns out that I have some pretty massive sound sensitivity and little kids are one of my triggers unfortunately.
How do you tell someone without them getting upset that you’ve hit that point? I had that yesterday and all I wanted to do was leave but couldn’t really.
Omg the skin thing! Me too.
YES I have the skin thing. Sometimes like it's on too tight and itchy but itchy isn't quite the right word.
I used to get some of those symptoms before a migraine
👍👍 great insight
Yes, knowing, and prediction, and gently demanding (without even having to say so) the prerogative to do what you must. It's a world of difference after realizing your autism. How crummy and inferior and like a selfish heel I have felt all too often when I've simply needed to go sleep when I was supposed to be social, but I was at the point of actually passing out from this irresistable existential...vacuum. In my church where the congregation gathers every Sunday after service in a huge echoing reverberating social hall where a hundred conversations start up all at once, punctuated by laughing, screaming children tearing around the room, I no longer feel rude, selfish or "unspiritual" for not being able to handle it. It's utterly hellish torture to me, and that's the last thing one should be going through in church! So I can predict it and opt out of it now. No sorrys for it, it's just how it has to be. The world will somehow survive if I miss the koffee klatch after church.
The skin sensation for sure. I think there's too much input from the nerves or the brain is amplifying the input too much. It's pain adjacent for sure, sometimes outright painful. It's like the skin has been rubbed raw or like the feeling beneath a fingernail. I always struggle with choosing comfortable clothing. I find a few items which work out and I wear them over and over. If one of these items wears out, I honestly go through a bit of mourning as I know I'll need to find a new comfort item.
Ok I had something I now wonder about... when I was a kid I liver near high voltage power lines there would be days I could hear them louder even though others never heard them. On those days I would have sharp cold pain in my legs
I could only describe it as shards of ice like broken glass running through my veins it followed a specific path down my leg then back up wit a spike of the pain at my knees and ankle. When it reached the top of my leg again usually inner thigh thigh to my hip...and it would just be gone and I'd go from crying unable to move my legs to ok I'm good in a blink.
Anyone else?
Oh wow! 😳
You sound like a tuning fork. Like me.
:::empathy:::
It helps to have money and make enough of it to be diagnosed especially as an adult. I’m poor and have no tangible resources to obtain help. Recently, I’ve watched a few videos where a psychologist links a lot of childhood trauma survivors as possibly also having ADHD and high functioning/high masking autism. On top of all of this image having C-PTSD from decades of abuse and also other health problems yet being ask by this society and system to contribute and to make enough money to live. So many people out there are just so screwed and out of luck! Life is simply so unfair to some people it just makes me wonder…
I thought that my meltdowns were panic attacks. Even though I don’t hyperventilate and it’s really different it was the only words I had
Yes. All of this. Yes.
That need to like crawl out of your skin. Yeah. I struggle understanding that my pain scale is different from others and there is always background pain so recognizing hunger or other internal signals is difficult at times. If I say I am hungry I am way beyond reasoning or debating with anyone.
Before I knew anything about meltdowns, I had mistook them for anxiety. The general advice for anxiety was a sort of gentle repeated exposure to the situation. But I don't think this worked so well in the case of a meltdown. I can't acclimate to it, because it's not a thing that needs getting used to, it's a logistics issue. Like a regiment in need of surplus, it doesn't matter how much exposure to the front if they don't have the ammunition to hold it.
I totally empathize with this.
I had a really bad afternoon at work and realised I shutdown - i zoned out and just disconnected thankfully I have lovely staff but it wasn't good
Yes, i'm so much more aware of my limits now that I self diagnosed... But at work, it's nearly impossible to explain, why you can't take so much stress any more at 58 y/o. Because you were never like this before ! Supposedly....
I with you on these ❤
I thought losing your words was a sign of shutdowns and burnout
I see meltdowns and shutdowns on social media often being used for the same thing. Like you, I prefer to seperate shutdown from meltdown. 🙂 That having said, the overlap is that they are both an outcome of being neurologically overstimulated. So the cause is the same, but one is more an physical reaction going inwards and the other is a physical reaction going outwards. I experience both (currently being in autistic burn-out for a few years now)
same, same, same and uncomfortable skin. just melted down at the dentist. the ultrasonic water scaler sounded like a rock saw in my head. then when I researched it, manual scaling is better on so many levels and is less likely to be "grossly contaminated" like the water scalers.
I stopped talking at my wedding reception. Didn't say a word and mimed instead.
I usually wear thermals under my shirts all year around , the one time I didn't it just seemed uncomfortable.
Thermals at this point are just a comfort thing rather than weather related.
I live in the South so the summers are like 100 degrees plus hummidity, other people are worried for me 😂😂😂😂😂😂😂😂😂
For the non-itchy itchy skin thing, would it make sense from your perspective to say that your skin is becoming agitated? I’ve been using the “itchy skin” without being itchy for several years now to describe a certain feeling or sensation or reaction I have to some things sometimes, but my skin has never been actually itchy. While watching you mention that in this video, it occurred to me that maybe it’s my skin becoming “agitated”, where the more agitated it gets, the more it impacts me and the less capable I am of dealing with things or handling things in real time.
The way clothes touches me can bother me. Just a constant annoyance in the background. Some are worse than others but they all annoy me a little bit.
I've experienced every single thing you said here. Had a frozen moment just trying to hit send on this comment.
Love being here
do autistic meltdowns also manifest as sleep attacks (as in narcolepsy where you get so sleepy all of the sudden that you can't resist falling asleep - even while talking, walking, or showering)?
Now include the constant 24/7 use of... stuff... that would cause a psychotic break on most people and you have an idea of what is going on.
My skin will get really sore to wear even my own shirt lightly touching it feels like poking a bruise. People often think I'm mad at them when I'm not. During my shutdowns. And it turns into an argument and I feel blindsided because I was never upset with them. It's very stressful and I need help with it. If there's already one I'm sorry, couldn't find it, can we get a video on that? People misunderstanding autism behavior and thinking you're angry at them?
How did you go about getting your diagnosis? I am a 40 year old mom of 2 and I have thought for a while I could have ADHD or autism or some other neurodivergence. I get overstimulated with sounds and have actually already bought myself those noise lowering headphones (the little ear bud kind) but I don’t always feel comfortable wearing them. Sometimes they make me feel claustrophobic. I’m just disinclined to go to great lengths to get a diagnosis when it would basically just be for my peace of mind, which obviously has value, but I have lots of coping mechanisms in place, so I could do ok without a diagnosis. I just am curious. I also wonder if it would help some people have a little more patience with me. I seem to be quite an acquired taste, and whatever, screw them, but it’s been pretty consistent throughout my life, and one of the people who is closest to me in my whole life just kinda dropped a bombshell on me today that “people don’t like being around me” (or something like that; I was a bit in shock since we were fighting). I want to know if it’s really me, or is it just as much everyone else? Ya know?
Wait, so zoning out is a sign of meltdown? I do that a lot. Especially while driving, and I mean more than NT people. When I say I zone out while driving, I dont meant I get in the car and suddenly find myself at home. I mean I feel my brain, while I'm driving, starting to, like, dissociate or something. Sometimes I literally almost can't move my eyes, and it feels like moving them would be like moving a giant chunk of concrete that weighs more than 200 lbs. But you have to when you-re driving.
The other day, I drove for 2 hours. I came home frowning, feeling like talking was like moving a (smaller) chunk of concrete (let's say 40 lbs). And I even had an audiobook!! But it SUCKED (not the audiobook. Driving)!!
So relatable
Mine are much wilder biting and and most don't notice I am autistic
The skin thing I feel SO HARD! I was told I have fibromyalgia, but that diagnosis predates my autism diagnosis. Does anyone know if there’s a relation between the two? Or maybe the fibromyalgia is actually just my autism disregulation
I’ve had fibromyalgia before and I have dual diagnosis of Asperger’s and Combined ADHD with Complex Maths Disabilities
Hairpain too!
Yea 🫂🩵🫂
it can be hard to formulate a thought... maybe it's my schizo
Who diagnosed you? 😮
Like a weird ache in the skin