"Autistics have to spend a lot of time and energy thinking about how to present information." THIIIIIIIIIIIIIIIIIIIIIS. I need people to understand this. NEED.
I always refer to this as 'translating', like the thought in my head makes sense to me but I know it won't to anyone else, so if I want to share I have to translate it. as I've gotten older it's started to take more energy than I have to do the translation, so even if I want to share a thought with someone, I'll just keep it in.
@@davidconner-shover51 I'm 64, and have done the hiding/interpreting thing a long time, but less lately due to exhaustion. I've managed to get across to many of my coworkers/boss: "Don't book me for first thing in the morning meetings! My meds haven't kicked in, and you DO NOT want unmedicated me!" Since I work directly with customers on highly technical topics, some of the customers who I have worked with for a long time say "unmedicated you sounds like fun!" 🤩 With some customers, I don't have to mask near as much.
My exhaustion triggers are: - Not exercising - Negative people - Being around people I'm not sure I can trust - Big social gatherings where I have to interact a lot - Being constantly interrupted when trying to to get something done. And having to create and go back into flow state to be able to complete the task. IT'S EXHAUSTING. - Lack of sleep - Having to follow neurotypical 9 to 5 type of schedules.
@@michaw7408Could simply be that it's a 9-5 that someone else planned for you, rather than one that works for you. Flexibility? Not from them. They expect you to be flexible enough that you're rigid in the way they want you to be. That's a NT 9-5.
@@michaw7408 Not always. Many neurodivergent people cannot work a 9-5 job. Many I know work part time or on their own schedules. The point is, not every autistic person presents the same way.
@@michaw7408 What I mean by that is more like strict no flexibility 24/7. Even when in burnout... To just have to go on and on - too fast speed. And yes, all autistics are not exactly the same. I also prefer a baseline schedule. But need days that hold space for change too.
“We have to dance around the truth, all in an effort to make people feel good. But I never feel good!” Finally someone said it. Why the hell should I have to make the neurotypical person feel good when I’m the one with a disability? Just say the short version of what you want and stop bothering me.
It's not the fault of the NT so to speak as they have to do the same thing with each other. It just doesn't weigh on them like it does us. It's a social game and humans are typically social beings.
@@LittleKitsune85 it's a cruel game our brains play. ADHD me: need stimulation all the time or will get bored, Autistic me: Too much stimulation makes me lose my sh1t. My ADHD is in constant battle with my Autism. It's exhausting 😖😫
I’m diagnosed autistic and I always feel weird watching these videos about people who have the same condition but they are well traveled, great lovers, and have good jobs and bustling social lives. Like why couldn’t I get the good kind of autism that makes me skilled at an in demand field like STEM instead of the bad type of autism that makes being a functional adult almost impossible
there is no good or bad autism there are people who have learned how to mask their discomfort when traveling, working and out in social situations. I am 70, diagnosed last year, and i have always hated to drive on the interstate so i find backroads and city streets to get where i want to go. I do not go to large events without a friend who has an anxiety disorder (we support each other). I do not have a social life, and I am ok with that because most of the "social" people i have known in the past are self-centered and abusive, only wanting to prove how much better they are than me. You have to find your space, and you coping style, then it will get easier as time passes.
@@Kwahzutah As a kid I hated new clothes or clothes that had been worn by others before. I was my mom's own nightmare, and looking back, I want to say sorry for that but she's been gone for over 20 years now 😪 53 yrs old, diagnosed at 50.
Yes, I definitely need more alone time at home now that I'm in my 50s. I also need time every night to recover from a full day at work. As a SpEd Teacher, I feel overwhelmed everyday. I'm thankful for the holidays and half days. The full months without a holiday; my body cannot manage.
I've tried to explain to people that "we're all fish - but I'm a fish that hates feeling wet". I LOOK like the other fish, but the ocean is a whole different kettle of fish for me.
I'm only just discovering my autism and ADHD now at 30+, but as a kid my mom put me in school plays because I was so shy. I ended up doing theater for years and learned how to pretend to be like others. Then I got two degrees in communications, where I learned how to pretend even better. Now I'm this master-masker, and it's frickin' EXHAUSTING. I'm working on letting that mask drop, but it's so ingrained now that it's been a bigger challenge than I expected. I think I need help being autistic lol
I feel this so much haha. I feel like I have no idea how to just be "me" anymore, just the version of me I invented to please everybody. It's such a struggle when you've spent years with the mask glued to your face.
Look back at how you felt just existing and your responses before you played pretend for the sake of others. Some will have changed BUT the feelings had a reason as much as actions. I know it sounds vaguely philosophical, but I'm having a hard time getting the right words due to burnout.
I so hugely relate to this! My mom put me in ballet, ice skating, modelling and acting programs to teach me how to be like everyone else, because I was dyspraxic (clumsy - no depth perception) and voice lessons to speak because I sounded robotic... on and on so I finally after she died became a playwright because theatre... trying to figure out social interaction. I didn't get dx'd til almost 56 yo. I am still trying to figure out how to be autistic and stop masking because it's so exhausting!
Fellow autistic/adhd inattentive here, 53, diagnosed at 50. It's good to have learned to act like a neurotypical person. But think of it this way. If you never drop your mask you are exhausting yourself for others. Learn to give yourself some more priority. If you have hobbies, do them more. If you like being by yourself for a bit, just do it. If someone asks questions, just be honest. You just need some down time to process and recuperate, and reassure them it's you, not them. Just take that blame to easy the burden on your shoulders. That said I also feel half burned out ALL the time, but that's also because my biological clock has strong nocturnal tendencies. In other words, I am a terrible sleeper and having a day/evening job (taxi / bus driver for the elderly and disabled) does not really make things easier. I should look for a night shift job, but I don't think I'd be qualified anywhere.
A world sympathetic to autistic people is a better world for all. The triggers are like a guide for creating a healthier society, which the neurotypical are often blind to. But, how to communicate, and be listened to...
EXACTLY!!! This is why is see autism as such a beautiful thing. I know it has co morbidities but if we fixed the world how many of those would be greatly reduced?!?! I’m excited for the future of the world because of the autistic community. Maybe I’m just being “””naive””” as so many ppl like to call me. Idc.
This is such a good video. It really sums up why even as a "level 1", it's a struggle. I don't even want the cure, I just want to be left the fuck alone when I need it... Which is often.
@@t3hsis324 And then there's the boomerang stress of "Just leave me alone. (10 mins pass) ...why are you abandoning me?!?!" My gal deserves a fucking medal! She will "leave me alone", then stay juuuuuust close enough that I don't feel abandoned.
An autistic brain often has many more neurons in the visual cortex, and often the extra space needed for that is sacrificed by the auditory centre. It explains why one can have a hard time understanding people with the slightest background noise. The visual cortex is unusually powerful, and able to send way more data than normal to the neocortex. The auditory centre on the other hand lacks raw power to discern the speech from the background noise before the data is sent to the neocortex. So it's a double punch - the visual cortex sends a flurry of data to the neocortex while the auditory centre sends partially unprocessed data to the neocortex, aiding in the exhaustion process as you have to think hard about that too, while processing the larger flood of visual data.
Yeah it approaches reality, but no one, especially level 1 elites, comprehend level 3 experiences. And even this clear message either lethally offends allistics or they deem lying to ignore at best. Or usually use all their social talent to exponentially explode the barriers and sensory overwhelm.
I'm 66 and yes, the world was better in some ways when phones were only in our homes. Rural life was quieter and I was able to be alone a lot. However there was no explanation for why I felt so uncomfortable in my skin...felt alien. No one knew why I was different...and bullied. The lack of access to so much information is one huge boon for autistics. But yeah, exhausting. I now take naps, live alone (ok, with 2 dogs) and I have time to think and process. Learning boundaries and when to say no was a huge help.
I'm 46, and I simply don't use social media, or use my phone as anything but a phone... and a camera. ;) I leave it at home when I don't need it. Being diagnosed a few years ago has made life easier, as has finally being able to figure out that I'm nonbinary, and dropping gender specific appearances and behaviours that I've always been uncomfortable with. Living alone (with a cat, because everybody needs some fuzz in their life!), learning my triggers and limitations, and feeling free to be as strange as I need to be sometimes has made life so much more livable!
Age 50, earplugs at work (even though it's safe decibels) have made life so much better, I don't even take them out when I leave work. Grocery shopping is WAY easier with earplugs, mowing the lawn (which used to be pure torture, now is only mild torture). Wish I'd thought of it years ago. And yes, never comfortable in my own spacesuit/spaceship/body, and getting older means more issues, stupid reactor core having emergency shut-downs more, not less, as I get closer to the jumpgate... just forget that last part!
@@Arthurians Earplugs are the best! I often wear my noise-cancelling headphones when I'm out doing things with the cord in my pocket plugged into nothing! I hear you on the bodily discomfort. I've always wondered what it's like to feel comfortable in this meatsuit? Chronic illness means I'll probably never know.
@@Arthurians it sounds like you need to reroute your warp plasma stream through an inverse tachyon matrix, that should shore up the integrity of your subspace field. Live long, and prosper 🖖
I notice the shift in people too, and I’m less inclined nowadays to think “ooh did I say something wrong?” But rather go straight to “Goddammit. Damn humans ain’t getting it again…” and then wracking my brain to find alternative ways of saying things. This suuuuuuuucks.
I have an adult child who we have only known about the autism the past couple of years. They just told me a couple of days ago about this happening, a lot with me unfortunately. But I see so much differently now and in just this short time I have had a couple of things come up that I saw differently and was able to change my behavior. I also screwed up on one and am starting to wonder if I am also autistic. Anyway, I am proud of him for being able to tell me that my reaction was because I was not understanding him. He was right and I am glad to know. Hang in there. So sorry it is so hard.
Yup!! And then after a while some people shut down and stop trying to explain, such as me. I just go, "I have attempted to explain it, and was dismissed, so I'm still going to do it, and you can just assume my reasoning."
Tuesday, I was talking to a doctor about how noisy this world has gotten. In my very late life (I am old) I had a day of testing for autism. I don't know if I am but I have many traits. After over 5 hours of testing/talking, I went out for a dinner thinking it would be easier than cooking. I broke down crying in the restaurant. I cried for 90 minutes when I got home. Though the day was fairly quiet (I wore earplugs) I was over-stimulated and exhausted. (I calmed down by plunging my face in ice water for ten seconds, twice. It reset me).
Based off that response I would say its a high probability you are. The cold water reset is one of my go to's 👍 I also get really hot physically and if it's a cold night I'll just go outside and stand in the dark in just my pj's and stim. The cold definitely helps regulate.
I never thought about my need to splash cold water in my face at the office or when I'm out with family, possibly being a sign of overstimulation. Guess I add that to my mental list of "signs I'm overstimulated" Thanks for your explanation
I literally say the same thing about the world being so "noisy". I've realized a lot of it is the constant EMF around me and being so sensitive to the environment that I feel that electrosmog. I have a meter and track and have verified a connection to at least fibromyalgia. Unless I can move, I can't reduce it more to see if it helped the migraines and immune system disorder that I've also developed after a data center literally built next to my house because of weird zoning and 4G and then they expanded and 5G came. Each time my health got worse and now the breakdowns and shutdowns are disabling and prevent me from working unless I self medicate (which I refuse to do anymore and regular meds make my life worse). Therapy is the only helpful thing because I get to talk freely and vent.
5 hours of testing and talking exhausts any neuro diverse person. I can only last half an hour of that. I think your social battery was already depleted before going to the restaurant. Better get a ready made salad meal from the super market, quick in and out.
One thing that stands out in my mind is an event that happened nearly a decade ago. In September of 2014, I attended a meetup with my Facebook Crown Victoria group in Tempe AZ at a Dave & Busters. Most of the meet was conducted in the parking lot - this was never a problem for me as I could gravitate toward people at the meet who were there for the technical stuff ... we were going to have a group dinner inside the restaurant and this is where the 'fun' began. This was on a Saturday night, so the place was packed. I went inside, figuring I would eat and leave. Hah. First thing I noticed was all the noise, followed by the flashing lights (all the arcade games and things), followed by more noise and people bumping into me due to how busy it was. I sat down at our table, ordered a Coke. More noise, which by now was blending into a sort of blowtorch of noise, the lights were amplifying the noise and the noise was amplifying the lights, people still were bumping me even as I sat down. At this point, I couldn't even make out what the person sitting next to me was saying over the cacophony of noise and at that time I just shut down. I decided it was time to leave and so I just got my Coke, took two sips, paid for the Coke and went back into the lot, made it to my car and just 'crashed' for about 10 minutes. In total catatonia. Someone from the group came out and asked if I was okay because evidently it looked a little scary to some who witnessed it. At that point I didn't know I was autistic.
Am SO relating to your experience... I once sat on the floor in a corner & leaned against a support pillar & FELL ASLEEP from over-stimulation during a music concert. The noise, lighting, people bumping into me yada yada. Years before I pursued my ND suspicions.
DUDE. I was diagnosed in 2017, but in 2010 I had a similar experience at my friend's birthday party AT THE TEMPE DAVE AND BUSTERS. That place is absolute hell for my autistic brain.
@@silicon212 For movie theaters, sports bars, etc - I have a pair of earplugs that have different inserts for different levels of reduction. I've found the "setting" that works best for me. They seat pretty deep in the ear, so they are not too obvious. Nowadays, I might wear my AirPod Pros, with adaptive transparency mode. With many NTs wearing them all the time, you can actually appear as a "ducebag NT" and fit right in! 😆
I’m not diagnosed, 32 yo female. In 2017 my ex friend and her friend and I got baked and decided to go to the Dave and buster down the road. Like within thirty seconds of us all walking in together we kinda looked at each other like Eww and NOPED outta there. Now that I look back on it and think of this comment I’m like Ooohhh that’s why that place sucked to me 😂
Yeah bathrooms are great places to hide, I worked at a very high stress job where everyone backstabbed each other… there was a bathroom that I would go in, turn off the light and either meltdown or calm down there. Only Accounting knew I went in there, and they refused to tell my boss or other marketing staff where I was if asked. Since there was a doorway at the end of accounting that led to a set of stairs.
I feel this I work at a fast food place and cleaning the bathrooms is my favorite thing to do because it helps me reset when I'm oversimulated. I don't get meltdowns but shutdowns its not fun.
@@userequaltoNull No my supervisor was so dumb she probably thought I went for a walk outside to cool down. People knew she was an abusive witch, who tried to get me fired because she thought I wanted her job.
at 68 years old I have realized that I am on the spectrum. I now live out in the middle of nowhere by myself and have never in my life been happier and less stressed.. no input no stress! have had to deal with depression for the last fourth years now, noting. happy and content.
I can wake up feeling SO READY to do the day. I’ll be motivated and feeling positive and capable… and then I LEAVE MY ROOM and feel like I’d rather be 💀 than ever leave my room again and POOF! Everything positive, hopeful, and energetic within me is gone and I spend the rest of my day trying to emotionally regulate back to a space in which I can make myself breakfast…at 3pm… ugh. I am literally the most bubbly yet chronically exhausted human I know. I have severe carpel tunnel in both hands/arms, psoriasis, psoriatic arthritis, severe anxiety, adhd, and HS. That’s 3 autoimmune diseases, 2 mental illnesses, 2 chronic pain confitions, and I’m neurodivergent.. I dunno how tf I do anything. The truth is that I accomplish very little and I don’t enjoy any of it. Yeah… but you can’t see anything but the psoriasis so I just look like a red skinned, scaly, and withdrawn weirdo. Omfg whyyyyyy…. *cheers* to anyone else dealing with this kind of stuff on a daily basis that hasn’t given up completely yet! You’re a rockstar! Time crawl back into my hole where the outside world can’t throw me into an emotional downward spiral! Yeeee.
Skin illnesses can be improved by eating Omega 3 fats. I like to eat canned sardines with skin-on packed in virgin olive oil. Two small tins a day help me feel relaxed. Our cells must have good fatty acids in addition to proteins to make cell membranes healthy.
@@normaalvarado7540you know what’s also exhausting? People popping in and telling you, that your severe health issues can be solved by eating something particular. Psoriasis cannot be cured by eating more Omega 3, and I bet this person has already tried everything possible and even some impossible things, to try to alleviate the symptoms.
I'm just stopping by to say I love you. The personality you showed in your comment is beautiful. What a shame you can't bless the world with it more often in the "wild". I think you're coping with your condition and overall with life under these circumstances very well. And I wish you all the best! Love ❤️
@@normaalvarado7540 Psoriasis is not a "skin illness", it's an autoimmune disease. The beat treatments are immunosuppressants (which make you susceptible to colds, viruses, etc). That and anything that can help avoid inflammation. Dietary changes can sometimes be helpful but it completely depends on the person's current diet, gut microbiome, genetics, and other health factors, and things that might help one person could aggravate another's condition. Things like omega 3s can be helpful for general health reasons, but they're not very likely to have any significant affect on autoimmume disorders.
Everything you said in that first paragraph could’ve come straight outta my mouth! I feel it so much. Please remember to be kind and compassionate to yourself. ❤
A few things I do to try and survive this exhausting world: 1) Have a sensory deprivation reset on really hard days when i get home. This can be just laying down in my bedroom with the lights off and comforting blankets and sensory tools or even having a bath with only one soft salt lamp in darkness and quiet music. 2) Allowing myself to actually be me at home with my partner. This includes not emoting as much or policing myself to say/do the right thing and knowing he'll understand. 3) Take mini breaks throughout the workday. Allowing myself to mentally check out/let my mind wander for even just a minute every hour does wonders for my mental health. I feel like I'm cheating the nuerotypical world by secretly getting to be the real me in my head for a small amount of time every day. 4) Stimming (but secretly). While I can't twirl and bite my hair or bounce up and down like I used to as a kid, I can find other ways to secretly stim when I'm at work or in public. This includes rubbing and putting pressure on the palms of my hands under a table, scrunching and unscrunching my toes in my shoes, gently running my fingers through my hair and over my scalp, and playing with tools inside my pocket 5) Wearing clothes that are comfortable yet slightly more fashionable (and with no damn tags!) as well as layers to help deal with a room being too hot/too cold. 6) Trying to give myself grace when even when I do all these things life still gets too overwhelming and the nuerotypicals get upset with me. I have to remind myself that I'm doing this to survive mentally in a world with seemingly arbitrary social rules and unnecessary sensory overload. Not because I'm a bad person if things not go well. It's a world that wasn't built for me and while I'd appreciate more grace from others if i can't have that then I need to be more gracious to myself.
Secret stimming and sensory deprivation seems like it would really help me. I just started a new job and to say it's dysregulating would be an understatement. I think I mask by default out of learned fear, and I have the tendency to stand still (if I don't move I can't make a mistake and get in trouble), but I've found I do feel more comfortable when I can move and stim a little bit. I also notice lately I prefer silence at home, when I previously thought I needed a lot of background noise to chase away the stress. I guess it will become new thing for me to give my body what it needs as opposed to what my mind is convinced it needs. Thanks for sharing this, I think it's really insightful 🙏🏾
@@larsonfamilyhouse Tags are crazy making! A seam ripper is great for this problem. I've tried using scissors and always end up either leaving even more irritating tag bits or accidentally cutting out part of the garment. A seam ripper can remove the whole thing easily with no damage.
I remember having insomnia as young as 9. My mom said that even as a baby I was “colicky” and wouldn’t fall asleep until she either drove me around in the car or put me in a battery-operated baby swing that would rock me. She said they spent more money on batteries than the cost of the swing. I still have bouts of insomnia, and it has been a constant part of my life. Some nights I just don’t sleep. The only thing that has almost completely eliminated my insomnia has been regular cardio. I am dealing with a chronic illness right now and can’t jog and my insomnia is back. I can’t wait to get better so I can exercise again and get good sleep. If my sleep is bad, everything is bad.
I feel you so hard. My mum said that I was the only baby she'd ever seen who was either insomniac or nocturnal, and I was semi-nocturnal by the time I was 3. I was insomniac by 6, and have had sleep issues for the entire 40 years since. Since I'm going through a rough period right now and need actual sleep to cope, melatonin is my current best friend. Clonazepam is a good friend when things are extremely bad too.
THIS ❤ my mom used to talk about this too...I "never slept" as a baby, and I've had sleep issues my whole life. And when I get sick, like flu, FORGET IT. It's HIGHLY frustrating because the one thing that helps heal you, is the exact thing I can't do. Just getting over another flu, that lasted for 10 days, because I'm only getting 3, maybe 4 hours of sleep. I literally woke up every 90 minutes during the night. And that's after I took a sleeping pill, magnesium, and nyquil!! I thought for sure that would put me out, but it didn't...every 90 minutes, waking up.
I'm highly dependant on 'exercise' as well. In the good times getting the good old 10k steps a day or cycling (40m) to and from the office will suffice. But with my health getting worse in a variety of ways I have to get creative and that makes me stand out in a bad way. Leg exersises after wrist surgery, upperbody exercises post hip surgery etc. I can take a break from exercising, but then I can't sleep. :/ I'm dreading the day my chronic illness fully catches up with me.
Have you tried getting a rebounder? You can do a gentle bounce called the health bounce where your feet never leave the rebounder so it’s not taxing like jumping. I love the gentle motion. Your baby motorised swing reminded me of it, so it’s worth a try.
I'm 60. Diagnosed ADHD/ASD at 45. I grew up in that "quieter" age, but back then it was impossible to get a diagnosis unless you were non-verbal or profoundly impacted in ways that were obvious. So, I would much rather have the information that comes from having the internet, cellphones, etc. You don't have to let your devices be the master over you. It should and can be the other way around. Ok, here are my sensitivities: Groups of giggling women or people talking loudly. Echoey rooms Sudden noises Someone approach from behind me. Wearing pj's or nightgowns to bed (I get tangled up because I thrash) Temperatures over 74F Humidity w/ temp over about 60 Crinkly bags Things that send me OVER THE EDGE IMMEDIATELY: Ceiling fans/flashing lights Girls talking loudly in echey public restroom ("OMG! I haven't seen you in, like, foreverrr!!) The absolute worst for me though, is very LOW pitched noises (with the exception of whale songs). Examlpes: A large truck idling, bass turned way up in a person's car no matter how far away it is. If I can hear it at all its torture for me. These things can often send me into a huge meltdown with little or no warning! Otherwise I "appear normal". I can't blames people for not believing I'm on the spectrum, but it makes it EXTREMELY difficult to explain a meltdown.
Omg crinkly bags! People eating apples. Popping gum. Flashing lights. Loud restaurants. Loud music. Crowds. Popcorn at movies. Movie theaters (volume). HEAT over 74 also. Smells. Bad breath. Garlic smell. Smell of cupcakes in a school classroom. Food that smells like B.O. cigarettes, cigars, vapes, weed, strong sanitizing products, pesticides. Ad Infinitim. I have not been diagnosed as autistic but I certainly have a lot of sensory issues.
The crinkly bags. 😵💫 I third that. Especially if it's over the phone because someone you're talking to has thought "I'll hold it away from the phone..." Doesn't matter! It's so terrible! Phone calls are hard enough, then the bag joins / interrupts and ooh boy! I have stopped mid-sentence so many times to just ask, "what are you DOING?" 🕺🏻
@jmaessen3531 For me it's when they are emptying the dishwasher over the phone and the constant clattering. Especially silverware. Or eating cereal out of a bowl. Every time the spoon hits the bowl. I hate that sound! It hurts my ears so much. I don't buy crinkly bags and I don't know that I hear them a lot. So this may be why I don't know if those bother me, too
Not sure if ASD, but I have extreme A.D.D.....for me with the sounds....high pitched noises bother me and I can hear higher than most people my age (29)
What you said about computer and phones is exactly what I tried to explain to my wife for years : this fucking constant interruptions, the annoying "vrr" from a text coming which anguish me, the no times alone anymore because there is always someone to text you (or her, cause nobody text me anymore because I don't answer, too exhausting) some shitty thing you don't care about, and you need to answer something if you don't want to be rude. But answering what ? It's like you cannot be alone anymore, you cannot rest anymore from people and that's exhausting... And when I explained that years ago I didn't even know I'm autistic, it wasn't even something I heard about, or think for myself. And now I understand better why I've always feel that about social network or texting. Why it was so exhausting, so scary. It makes so much sense. You explain it very well, that is exactly the words, the feelings, I'm so happy someone else express it, it make me feels better and I don't think anymore I'm a "monster" or whatever not to love social interactions or to be anxious about texting or social networks. I now know that's a part of my autistic brain. Thank you !
My phone lives on "do not disturb" mode. I know I can trust my close family not to bother me unless it's important, so they're allowed to bypass it ("starred contacts"), and alarms (because my ADHD means alarms and reminders are the only way I can keep up with appointments and such). Anyone else can leave me a voicemail/shoot me a text and I'll see it when I see it.
@@digitalcalibrator9740 Yah ! The same here now. When I was a teenager people constantly asking me (and some with anger) why I even have a cellphone because I never answer it (what they didn’t know is that I answer, but only to people who I really love and then I was too exhausted or annoyed for answering them… sorry guys I didn’t like you so much 🤷). In fact I still do that but with time not so much people I don’t really like have my number now. I also cannot tell how many time my mother yelled at me because I didn’t pick up the phone when I was a kid, and she doesn’t understand at all what I feel about not knowing what to say on the phone, how to interact, even with people I know. She doesn’t understand the anxiety that I feel about picking up the phone or calling someone (even a friend). For her it was stupid, I was a coward, and even more that my sister who was 2 years younger than me can do it. Not a fun part of my life. Knowing about my diagnosis makes so much sense on this kind of experiences now
My phone is almost always off. I check it maybe once every day or two and turn it off again. I have had to get to the point with people where they at least partly 'understand' some of the things that have to happen for me to get through a day with any productivity at all. It began to become a joke in my community ('if you need support or whatever, call one of us but don't call him, ha ha'). Alone time has to be fought for as we are raising a family, involved in church leadership, and cannot avoid a significant amount of social engagement.
All mentioned here, except sleep issues, applies to me. Neurotypicals constantly 'read' my face & body language and they 'know' what I think and how I feel. And are always wrong. I mean, if you wanna know how I feel ask me, instead of 'knowing'. Had such problem with my dance teacher who 'knew' that I was 'worried' by reading my face, while I was just concentrating & enjoyed repeating my moves. And I don't even have a TV at home and when enter a space that has a TV on, like my wellnes centre lounge room, I make sure I turn it off right away. I go to my gym because it is one of rare gyms around that is silent, no stupid loud TV screens and irritating pop music.
Ha! I took ballroom dancing lessons for a while, and once I showed up about half an hour early because of the trains and just sat there waiting. The instructors were very worried that something was wrong, because I looked so sad. But that's just what I look like. I apparently have Resting Horrible Tragedy Face.
@@kemowery Hi. Yes, so annoying that people constantly think they know how you feel or what's going on based on something so superficial, laregely evidence unsupported and culturally biased, such as 'body language'. I do classical ballet.
For me, setting boundaries with neurotypicals is still one of the biggest challenges. I once worked at a company where they would randomly call meetings at short notice. And not just any meetings, those were meetings where I was supposed to present something, or at least provide some input to the discussion. When I told them that (a) I would like to do as many meetings in a block (that reduces the before-and-after time it takes me), and (b) have meetings regularly instead of randomly so that I can plan, they first said "yeah sure" - and then the amount of meetings doubled and they happened just as random as before! And then there were meetings in which they explained why meetings are time critical and important, and that they needed to be flexible! When I pointed that out, they set up even more meetings, just to see whether I am available at all times. I quit that job. However, this is a very common pattern. The more I ask neurotypical people to respect my needs, the more stress they put on me. So I have long given up on that too: it is not worth it. It just makes everything so much worse. If you - or anyone else - has any thoughts on this, your reply is highly appreciated.
They were punishing you for daring to ask for your different needs to be met. They definitely felt that you were asking for more than they could dare to ask, and were spiteful and jealous. It's not based in pure logic, it's social dynamics and emotional responses at play.
Sounds like they wanted you yo prove what you needed. They were out of order. Unfortunately, I'm 57 and have survived by saying yes and having constant dialogue in my head instead of saying no and dealing with the fallout. I would love to be truthful all of the time but the world is not prepared for that. I just don't get people or the world we're now in. Gentle distant hugs.
There's really no such thing as telling your job how to operate. Jobs don't just accommodate people because you ask; they pay people to do what THEY ask. That's literally what a job is. Boundaries are for personal relationships. Quitting a job is appropriate if you don't like it but most people do not like the way their office is run. That's just life, and that's why many people have a goal of working for themselves.
@@pld-wc7gf No, that's not "just life", that's life in the capitalist society we live in. What you are saying is: THEY are the ones with the money (or their cousins), so THEY make the rules, and THEY have all the right to pick on everyone who doesn't perfectly fit in with THEIR expectations. What I am saying is: we can do better. A lot better. Autistic people are way over-represented in engineering, and STEM in general. We are the ones who innovate. We are the ones who keep things running. We might seem a bit odd at times, but we deserve way better than being bullied by rich little brats for no other reason than that it is easy to pick on us. You disagree?
A long time ago, before I knew about autism and masking, I tried to express my rejection of social norms and behaviours in one sentence. What I came up with was "Fitting in gives me the self-identity blues." Now I know why I said it. Thanks for sharing your experiences. It helps me understand me better.
My daughters triggers (4years old) The material denim Any kind of trousers - has to be skirts or dresses Too much noise Any kind of light in bedroom when trying to sleep - she won’t sleep unless blackout blinds are fully covering windows Being too hot, she is naturally a warm girl but hates layers and pjs on in bed with a blanket Hair being blown in her face, has to be pinned back My husbands triggers Too much noise Talking to him while he is doing something else Trousers & Jeans Being too hot Spots always picking Road rage
I have all of these except the blackout curtains. It's rough for sure. Can't stand pants and I'm always getting judged for wearing shorts. I'm not cold, thank you, mind your business...
@@carissaa8411 It sucks because if you think about it, it might be the one mistake one person makes on the road, but because we deal with hundreds of people, if they all make one mistake it adds up.
I don’t think I’ve recovered from high school. It was a sensory nightmare, and went against my delayed sleep phase disorder. Especially since I had band before normal school hours. I missed so much school because my stomach was hurting every day, I’d have panic attacks and meltdowns when getting up or even when about to enter the building and would beg my dad to let me go home. I feel like I was medically neglected. Because I looked normal otherwise and did well in school. Two teachers commented on my absences, and neither with any sort of compassion. One told me I would fail college because they wouldn’t tolerate me missing class EVER (lol, that guy was so so wrong), and the other just wanted to know how I kept my grades up. The trick was that I could do my class work in the safety of my own home instead of in class, where there was constant social interactions, fluorescent lights, limited bathroom breaks, and constant stomach pain. I was exhausted and probably stunted my growth. I also had an autoimmune disease and repeated untreated UTIs. No one ever said it to my face, but I’m certain adults thought I was lazy or stupid or looking for attention.
I don’t know what I would’ve done without horses, growing up. They meet you where you are, and you don’t have to mask with them. My time at the barn once a week was my therapy. It still is.
Maybe this explains the "equine therapy center" that's a few miles away from where I live. I watch farm animal videos to relieve stress. People need local farms that operate like farms did 100 years ago.
@@Nphen look up EAGALA therapy programs. Horses are invaluable partners for mental health programs in addition to their uses for physical and mobility therapies :)
I‘m still searching for the perfect pillow, always lack of sleep and exhausted. But I would rather have a dog than a turkey. I am 61 and I have all the symptoms 😢.
In all honesty, I’d love to have a virtual phone call with you just to have like an interview and talk about experiences to see how diverse peoples autism can be between one another, and the contradictions between different individuals and how autism affects them
"Did you know that many autistics also have consistent health issues? These can range from gastrointestinal issues, skin issues, food sensitivities..." - I mean yeah I got all three of them.
Same. That happens when you are punished for being yourself from birth, right? The only time i drop my mask is alone with the pets or with friends who have no masking ability at all. my fave people.
I am on the road finding out how off my childhood diagnosis of "Mild Asperger's" was... And I feel this, only really recently have I started noticing how much I do as an automated response system.... It's...an interesting road...
I'm pretty sure TH-cam listens to me because I woke up this morning and I said to my husband... I'm so exhausted I have no energy and I don't know why... and then here's your video... So correct on all points. ❤
TYSM for this!! Everything you said, especially the sleep & stomach issues really hit home. Also my hearing is super sensitive too...I remember as a kid, back in the 70s, department stores jewelry cases had an "invisible " alarm system...invisible to NT anyway...and every time mom would drag me there, I would scream, because the high pitched noise was so overwhelming. None of my family could hear it, and they automatically labeled me, as a 6 yr old, as...crazy, too sensitive, etc. My dad was the only one who eventually figured out what it was, and why I was having this seemingly over dramatic response to that noise. But my family laughed it off, still labeling me as overly sensitive, and crazy. My mom would say I needed to just get over things like this, because the world isn't going to change just for me, (which was true) and to basically stop having meltdown moments when I felt overwhelmed. And I was a constant source of joke about my stomach issues too. I literally vomited most mornings for the first 25 yrs of my life, due to sensory overwhelm, and still have upset stomach most mornings, just not the vomiting anymore, THANKFULLY. My mom would mock me, saying...oh we can't take her anywhere, she'll just throw up the whole time, or some insensitive thing like that (she was a narcissist) As a super late diagnosed woman, at age 50, It feels really good to be validated by your video's, because I FINALLY know that I'm not crazy, or too sensitive...well maybe the too sensitive applies, but I like to think of it as exceptionally sensitive 😅. Anyway, I really value your content. It's brought SO MUCH clarity to me. Your channel is such a valuable resource 🎉🥂💃🎉
I had a dr recommend i take pepcid ac every night before bed when i was in jr high and now when i start to have issues i atill do that and it really helps! And if it still feels bad in the morning i take another! It’s not exactly the best for you but hey it makes it so you can function. Im always surprised by how well it works…until it doesnt and i do the full round of Prilosec and them im better for awhile again usually. I try to do it as soon as i notice it acting up bc if you wait u til it’s a fire volcano it is MUCH harder to get back under control.
After a social event I'll typically need at least 12 hours sleep that night (whereas usually 6-7 hours is sufficient), or after babysitting for even 1 hour, I'll need a 3 hour nap, and then I'll sleep perfectly well that night for my usual 6-7 hours. If I need to have a business meeting or interact with a customer (on the odd occasion), I'll need a 1-2 hour nap afterwards.
Currently having a shutdown, because I went into the city for shopping with my husband and kids and it was really busy. We don't go very often, but it's worth the shutdown once in awhile to spend time together getting nice things for everyone. My husband works during the week so Saturday is the only day we can all go. We go early tho so it's not as busy. Masking and sensory overload are my 2 main issues that lead to anxiety and depression quite often. As I'm getting older it gets easier not to care what others think. At home I get to be myself, I'm the gamer mum who hyper focuses on random things all the time and it's ok. I get to sing at the top of my lungs and do crazy dances with my kids and that's what gets me through the day. It's taken me a long time to just accept who I am and not always look at how others do things and keep thinking "why can't I have/do that". I am who I am and that's ok.
Sound cancelling earbuds have been a real blessing for me since they aren't to visible so not to many people notice I wear them when outside, especially when shopping to block out all the sounds my brain just can't block out without spending a ton of energy on ignoring the stimuli. I sadly can't remember exactly the paper i read it in but apparently in general the autistic brain taken in about 60% more external stimuli than a neurotypical brain, but the part of the brain that needs to sort all that information is still only equipped to handle a normal amount of information, so its like having a 16 liter water hose attached to a 10 liter valve and expect it to handle that extra pressure, it might be able to for a time but eventually it fails and when that happens especially with sudden very loud noises as he explain in the video our brain quite literally short circuits for a bit and has to reboot for us to get back in control.
Exercise is the worst. I don't feel pain normally, and struggle with knowing when I am overdoing it until I have way overdone it. Then, I struggle to move because everything has locked up. So I have to do any increases super slowly to make any progress. Then I'll get sick and loose all the progress I've made. I know it's important to be able to continue to move, but it's just so hard and it often seems to take all my energy so I have nothing left to do anything else.
I love how the more time goes on the more pieces of the puzzle I fit into place to understand why I've been feeling this way for my whole life. As an higher functioning autistic but I isolate sometimes weeks at a time too one session with a relative that doesn't stop talking ,my stepfather, over stim is exhausting
OK, I don’t even know if I want to go through the trouble of getting an official diagnosis, that’s how old I am, and never had an inkling until about six months ago that I am autistic but the sensory issues became so overwhelming and then I started to learn about autism and realized that I am autistic. I pass every test out there with flying colors and I’m working with a neuropsychologist. This is her area of expertise, but she is no longer diagnosing folx. Anyway, one thing that really helps me with my fatigue is to swim on a regular basis. It’s a perfectly acceptable way of stimming, and it feels great and helps me with sleep. Because of some ear issues I stopped putting my head in the water and I’m enjoying it even more. I hope this helps someone. I really love your channel.
Commercial interruptions, voting text messages, pharmacy and doctor reminder texts, all irritate me so much. If I’m tired and there’s too much light or noise or both, there’s a good chance I’ll get a migraine. Working super early 5 days in a row is definitely challenging for me because I feel like I’m running on fumes both from being tired and from the sensory overload. I love the jobs I have but they’re also a struggle. Soft blankets and sweatshirts and hoodies and long sleeve but thin cotton shirts make my life so much better. Good smelling shampoo conditioner and soap helps me want to actually take a shower, as well as listening to something while I shower. Flavorless toothpaste has changed my life (I use Dr Bob’s Unflavored toothpaste, which is a tad sweet but not enough to leave a major aftertaste like mint or watermelon or bubblegum).
This video speaks of my daily life. Although, because was recently diagnosed at 65yo I came to understand it’s a burn out due to masking and sensory overload. I am most of the time in my room cause light, even sunlight drains me. For a 1/2 hour conversation or a quick supermarket trip I need to rest one day and a half. I wonder if I ever will come out of this burn out, I’d like to enjoy life. Thank you for your videos, it helps me to clarify many traits, you are also very funny.
Sorry you're in such a deep burnout phase. 😔 Glad you're here and able to join in on all our late diagnosed "aha moment" sharing. I hope it provides some degree of community relief and a sense of finding your people. 🫶🏻
I like how you talk about things. For all it’s worth, I think you’re quite good at communicating information, and you’re also quite funny. And obviously I can appreciate how much effort it can take you to do these videos. I don’t think ND people can appreciate how hard it is for us to communicate in an effective way, but as an autistic person, I do! 😊 Anyway, one of the positive aspects of learning I was autistic has been to learn how to handle my energy levels. This has included learning not to push myself like I did before, when I unsuccessfully tried to be “normal” (spoiler alert: of course I crashed and failed spectacularly!) It still difficult, and I’m still pretty much exhausted most of the time, but now I know I have to prioritize rest and isolation from stimuli when needed. I’m pretty happy nowadays you can actually find information about this topic! Just a couple years ago when I was diagnosed and was trying to understand why I was always tired, you could barely find anything about it, so progress!
I literallyw lay on the floor in the store trying all of them out lol it’s extremely hard to find a good one! It seems like usually it’s the cheap synthetic super squishy one that ends up being like $5 that always wins for me tho so that’s good at least. Idk how ppl just buy any old pillow and it’s fine…pure insanity.
I relate to the pillows my bed has a stack of pillows which are placed for my comfort. My bed is my space where l can unwind. TV noise radios in background can’t do. Horns on cars l jump out of my skin especially when l am driving. Room full of people this is totalling over whelming. Thanks for your videos they are so helpful and relatable 😊
A tip for reducing interruptions from messaging: create one-on-one chat groups with the people you communicate with the most. Mute the notifications and tell the other person to use the group for messages that do not need immediate attention. You could have also one for your entire family. That way you can read the messages in a pull mode rather than push mode. This has helped me a lot. I actually started doing this before discovering my autism or ADHD. Great video btw, thanks for making it!
@@larsonfamilyhouse for me that is a bit too much filtering. But I think I've cut 90% non-urgent notifications and I think now there's about 50-50 split between urgent and non-urgent. So still not optimal, but much better than what there was without blocking.
Oh my God, every word you said could’ve come out of my mouth. At 62, I well remember the no-computer, no-portable-phone “Bad old days.” I hate the intrusion of cell phones. In many ways I’m now living your dream - we’ve just retired to 11 acres in the woods. It’s pure unadulterated heaven. Of course, it makes it twice as bad when I do have to go to town, but it’s worth it!
Exactly fuck getting random phone calls forceing me to be social at anytime of the day but messages, SMS, email that's the GOAT I can take my time think about what I want to say and go over the message and make sure I know exactly what was said to me.
I have this problem at work. I often show up late because I can’t manage to consistently wake up at 6AM. I can’t manage to consistently go to bed at 10 or 11 PM. I have a hard time presenting information in a good way, thus people shoot to conclusions or take the wrong things out of the conversation. When people push me over issues I can’t immediately fix or weren’t my doing to begin with I tend to partially shut down and my choices and actions can become skewed from the norm. A good example of this is that I was recently pushed on a minor issue I didn’t create nor could I immediately fix it. I then immediately after that had to get into a work van and drive to the site. I didn’t take the time to destress and calm myself before starting up the van. I started driving and got to an intersection where someone came from the left. Normally I would have stopped. Sometimes I make a quick decision and still drive because I know I can make it. But because of that stress previously my mind wasn’t functioning like I normally would and that made me drive when i should have stopped. No accident happened but it was a close call.
For me, it’s being out in public, particularly grocery stores. The lights, the sounds, everything. When I was younger I would only shop at night but after the pandemic none of the stores are open at night. Now I just have them delivered. It saves me so much time and prevents sensory overload for me.
Same! I used to shop like 3am-5am and now it’s so hot and busy everywjere and everything closes at like 11 😭 it was so nice being the only one in the store before!
I travel with my own bedding to be able to sleep, user earplugs A LOT, and chose my living space very carefully. It's 3 minutes away from the woods, I look out on a beautiful garden which I don't have to take care of. And it's quiet - I could even sleep without earplugs, but I don't, just in case. I bought several sleep masks until I found the perfect one for me.
I really agree with the comment about not liking loud noises but not being able to control your own volume. I like music and need to listen to it loud but car horns, random alarms, even someone coughing loudly near me can sometimes cause physical pain. However, I have heard (sometimes when people didn't expect me to) about how loud I am in conversations. I don't think I'm louder than anyone else, but appearently I am. I can't tell. Once I explain that to people usually they are alright.
I'm in diagnosing process for adhd, the testing person said, seems to be autism, too. Exhaustion and social contact/communication are my biggest problems. My tringgers are: Vision confusing patterns, flashing lights, somebody suddenly turning the ceiling light on or off, high humidity, several conversations around me, several people talking in an echoing room, this high pitch beeping in some buses or tubes before the doors close, sudden big noises, I need my own pillow and at least one other for positioning in bed. I can't eat well cooked vegetables and many other foods and it drives me crazy when I'm supposed to follow unclear expectations or when I'm disturbed frequently in a task. I need my Alone-time after work (at least 2 hours in one piece) and during the first hour in the morning as well a the last one before sleep, I have my rituals, but I'm still flexible somehow. BUT never change a plan that was fix! Except that ones, which I did only agree to please others. That ones may be cancelled ;)
Thanks for the vid. Late diagnosis here. So many of these things resonate. The energy spent interpreting from & presenting information to a noisy world is flipping exhausting sometimes. I love parts of my work as a teacher but have had to take on less hours due to the incredible levels of stimulation that leave me feeling destroyed. But I’m so glad to be finally realising these things about myself.
My wife knows when I say “I’m going to take a shower” that I’m literally going to sit in the tub, let hot water beat on my head, and space out for like 45 minutes in pitch blackness. We usually shower together, but when I just want to go, she knows it’s just my comfort spot to decompress and recharge so I have the energy to hang with her for a bit and not be moody and easily irritated. She knows every day/night after work, I need time to just be for a bit and then I’m refreshed and ready to hang for a few hours. Plus if I’m already drained, I’m not going to pay attention to any movie or anything cause I’ll just be sitting there feeling like I’m just just forcing myself into a situation. She’s learned a lot about Autism and just lets me do my thing as needed. She sees how much things can positively or negatively effect me, especially when I’m already stressed, or my anxiety is just at an all time high for no reason. I do hear noises from our electronics too that she doesn’t. We have a sound bar and it gives this super high pitch hum after like 7 click of volume up and it’s drives me nuts. When theres no noise, I hear the static white noise it gives off. She’s amazing at how it can be loud as hell, but I can still pin point the most faint yet annoying sound in a matter of seconds lol
Before I was diagnosed at 31 back in 2011, I was working and at the end of every work day without fail I would have a heart arrhythmia and black out. I didn't understand why, I didn't understand why I couldn't do the things other people seemed to be able to do with ease. Now I've been unemployed for 13 years, not just because of autism btw. And at first I felt relief that I was free from that daily exhaustion and terror driving me to depression. But now I'm just isolated still depressed and constantly terrified of my sole source of income disappearing. Seriously. Autistic people cannot win. What are we supposed to do?
I just found your channel, I have screening coming up next month for autism so I've been checking out different places for information. Not only do I have a 90% assurance that I'm autistic, but things I'm hearing about make me realize my mom had it as well. I am in desperate need of some understanding of myself because I fell like I'm just a very odd duck and no one can relate to me at all! So many triggers, health conditions and brain issues that I have no clue where to begin besides hoping the screening may shed some light on my issues so I can take steps and move forward towards finding at least a bearable space in this world. Thank you for this, and the template as well! 💯
Social situations and being overstimulated also wears me out. And the bed situation, I totally get it! For a long time, my bed didn't actually suit my needs but I didn't care much. And whenever I was on holiday or staying somewhere else, I was like: nah, I'll survive this. But last year I've bought a brand new bed and an awesome pocket mattress! My sleeping definitely improved although at times I'm still overthinking when I'm trying to sleep. My brain often just won't calm down, either anxiety or thinking about things I'd like to do. But a couple of weeks ago we went to a cottage on the island of Texel for a week. The bed was a bit simpler than mine and the mattress was just too thin. My bf and I decided a couple of years ago to keep long distancing because we both need a lot of quiet time. He's on the spectrum too. And it's about an hour's drive for me to go and see him. So we rented the cottage for a week, but we left after two days because our backs were getting more sore each night and I was just exhausted and depressed the second day. We went out for a few groceries in a nearby town and then we went for an ice cream (there is a dairy farm close by that has an ice cream shop with many different flavours and also a few lactose free) and the next day we packed up and drove to my place to stay together for the rest of the week. I'm exhausted a lot, sleeping issues since childhood which I think is due to anxieties. I was also bullied a lot. My bf has IBS among things and he's lactose intolerant. But then it's okay we live apart because when he's not here, I can cook things my way with lots of onions, spice and things he can't have. When we're together I adapt to his needs. During work whenever I need a moment, I often check on my fish and shrimp. I recently got a number of pygmy corydoras, they are cute as heck!
I was about 12 when I woke up at 5 AM with my first panic attack. Sleeping on a flat surface with a flat pillow is impossible for me because it makes my throat feel tight and then it's panic city. I've spent more of my 52 years of life sleeping on couches than beds. I just find them more comfortable. When I was a teen I couldn't sleep at night because of my anxiety and panic attacks. Being bullied at school for being "weird" was a HUGE problem, which is why I dropped out at 16 (even though I did go back 10 years later, and eventually graduated) I now know that being autistic and autistic burnout had a lot to do with my decision to leave school too. I've always run more on adrenaline than sleep.
@@elizabethsullivan7176 the worst was during my first concert tour with Utrecht Students Choir and Orchestra to Latvia. We stayed at a hostel in Riga for a week and those beds were just very spartan and very bad. But I was young at the time and pushed through. Sang 2 Matthew Passions (by J.S. Bach), second concert was in a dishevelled church with a broken roof in like March and we were all freezing. But the best thing was having a common passion for baroque music, for Bach and all around the same intellectual level (uni students). I think that's where we are most comfortable hanging out with people we connect more easily with on an intellectual level and mutual respect. My friends are all into scifi, anime etc. And most are on the spectrum. You don't have to mask when you're around them. Also, I get being on adrenaline all the time while at school because of bullying and pressures. It causes health damage, full stop!
Thank you so much for this video. It explains what I couldn't put into words. It's been exhausting trying to figure out why I'm always exhausted! I was diagnosed recently at 33 and have never been able to figure out why I am so tired all the time. I just figured it was caused by a combo of all the other other health conditions I DID know about.
Oh hey, the sunglasses in the grocery store thing is an easy fix! Zenni has fl-41 lenses that block ouchie lights. They call them migraine lenses but they're fl-41s! I have them in 25% strength for daily wear and 75% for outside sun time in texas. They work better than super dark reflective lenses too and make fluorescent tolerable
thank you for this video. i just left my job and have been feeling very bad about not being able to keep up, but it is really true that I'm so exhausted from masking almost all the time. this is a really validating video.
If I had a quarter for every time I said this "did I say something wrong?" Ugh. My bluntness has hurt so many of my relationships. I appreciate bluntness because I feel they aren't lying to me. I started to notice as I've gotten older I can mimic how someone speaks to help me feel they understand me rather than my true self. I don't even know if I have one since I mirror who's speaking. Ty for the education. ❤ to all.
I was diagnosed with depression for years because I felt exhausted and upset all the time. Now I've received my ASD diagnosis (at 28!!!) I am finally started to realise what has been causing the exhaustion and managing my energy levels better. Meeting new people can wipe me out for days, but wearing sunglasses indoors has made shopping trips easier. Thanks for the template, it will be really helpful as I continue to experiment :)
What makes me exhausted? Working as a software developer. Especially when working with workitems that are not well described and have a lot of open ends. And after you think you are done with the workitem you will get the full list of requirements (and can almost start over again).
Years ago I decided that when people tell me I don't need sunglasses inside, I just say 'How the --fuck-- would you know? Are you me? You obviously don't know what I'm going through, so I'll be the boss of where I wear my sunglasses. Have a day.' But tbf, no one's asked that in literal years. Ppl just don't care anymore. They too do whatever the duck they want. And neither do I. As long as I don't act like an ass, I don't care what people say about me or if they stare at me. What are they gonna do? Have an opinion that's not going to matter to me? It's not like they can get me fired or expelled for being autistic. 🙄
I'm a NT, but even I do the sunglasses thing cause I have subscription so it's too much of a pain to swap out to regular glasses a lot of the time. Rock on indoor sunglass people. 😎
I'm female, a very active senior and identify with at least 95% of your discriminations... it's heartbreaking and also a relief..I use to just think I was very broken...I qish I had a formal diagnosis and a therapist...some validation... it's been a hard road...
I can tell you some positive triggers (Autistic joy)... puppies and cows! Share with the class, man! I'm on week 2 of recovery from emergency gallbladder removal. Crappy sleep, can't eat anything I want, IBS worse than ever, pain, weakness, exhausted from half a shower. I was already burnt out from other things and now I can't do any of my normal decompression stuff so its just nap and try not to have meltdowns all day.
I also have neurodivergency (adhd and autism) and digestive issues. Had my gallbladder out when it did literally nothing in an ejection fraction test. So, i have some things you might not know about that might (or might not) help. 1) moringa, thyme, rosemary: these are all great for helping me manage my hyperactive bile ducts. Not sure why they work but it goes beyond the fiber like I initially thought. 2. (You might know this), my doctor put me on an antidepressant that helps levels of not just seratonin, but also norepinephrine (ppl with adhd tend to be low bc Dopamine is used to make it). So.. 3) a lot of the same neurochemicals that your brain uses are the same that your gut uses. So, you can look into norepinephrine/noradrenaline, seratonin, GABA (and there's a few more I can't remember) 4) lastly, if it does have something to do with your gallbladder or bile look into TUDCA (a type of bile acid). Our bodies produces little, but the pills, seem to help a lot. My hypothesis is when my body notices the TUDCA in my stomach, it doesn't freak out and overproduce bile because it "thinks" the job is already handled. And as far as bile acids go, this one is significantly less likely to cause bile dumps or acid reflux. A lot of people agree. (I get Nutricost and prefer synthetic because natural is derived from bears in a way that seems unusually cruel, even for corporate farming.) No worries if nothing helps, I wish you the best with your healing journey. Edit: also maybe make sure that after your guts liquidate their inventory you replace your microbiome a bit. I like a shelf stable variety that has as many different strains as possible. That way I'm not overloading my guts and your body will naturally adjust to the right levels of the right microbes. I just find that I get back on my feet faster with a probiotic.
@@steggopotamus Thanks, I'll look into these. I'm also dealing with metastatic breast cancer and was just starting to make progress on the issues from those meds and this is like going back to square one. I swear I eat more supplements than food these days but if it'll keep me from spending my days within 20 feet of the bathroom I'll be happy to add a couple more, interactions permitting of course!
This is so on the money. It’s taken me a very long time to figure some of this stuff out for myself, videos like this are hugely comforting. Thank you very much 🙏.
I often feel like the world is like a land mine field. I really try to be agreeable and easy to get along with. This video really hits home. My kids are grown and my youngest (diagnosed as on tge autism spectrum) is in college and lives with me. Everyone in the family tells me that I've always acted just like my youngest and are probably on the autism spectrum as well. I wish you well! 😸
Thanks Chris, I learn and understand a lot more through your videos. I'm between laughing and crying. It's good to know I am not alone in this. I've asked myself all my life, what's wrong with me? Why can't I be "normal"? „Be yourself"...but not like this...louder, quieter, not so strange, not so sensitive, more diplomatic... 😐 I'm glad to have found your channel. ☺ Kind regards, Mimi
You're hilarious. 😅 I related to everything in that. I'm 61 and recently discovering I may be autistic and so have decided to go to Dr to see about it. Have struggled all my life. Now it's time I was diagnosed properly. Thankyou so much for sharing this.
I'm on the Asperger spectrum... I contribute to my lack of sleep in the evening to me just being a complete night owl. I feel far less pressure of people always needing me at night as compared to the day so I feel more free to focus on myself and my me time at night... I typically get about 4 to 5 hours of sleep starting in the early morning hours :P
I'm totally burnt out after work all day and looking confident and being an adult with a lot of responsibility. The weekend allows me to be me again and build up some mental energy again to not look like an idiot or strange in work.
Thank you, this video helps so much For those of us who are living at home and find that youve to mask at home Consider trying to find a safe spot outside your home or inside your home (this is op) and have that be yr safe place when u just need to decompress
I have extreme sensory issues. I didn’t even understand what was happening to me until recently. I always feel it’s too loud, too bright, smells weird, my clothing feels wrong, my actual limbs feel wrong, other people feel wrong. I need a lot of time alone after social stuff. I sometimes am in the middle of things and decided I need to leave, regardless of how everyone else feels. And I do leave, because I’m done pretending for the day. I call myself a pretender, but what that is, is masking. and I have done it for years and I just didn’t have a name for it. One thing about me, I spent several years homeless in my past while still always having these issues. That was a nightmare that I am traumatized from forever. There’s no escape from people, public, noise, no privacy and no understanding out there. So now I stay home a lot, because I have one.
Hi there. Your comment really resonates with me, because that is my current situation. But with three children. 😢 I get no time alone, and I have been sharing one room with my family of four other people for months now. I have no space to just exist and be myself. And it's taking a serious toll on me. I would be honored if you would please consider reading my family's story and supporting our campaign. 🫂
10:35 also for everyone autistic who thinks they are imposing, remember how much patient YOU have to be with neurotypical people, you probably put up with more things unconfortable to you than they do. you are constantly being patient with unreasonable demands from them they dont even think about, given how everything is designed and runs.
I thankfully live in a country that recognises I’m too disabled to work and gives me a modestly generous income, and I’m still constantly exhausted just from the day to day of taking care of myself.
I have fibromyalgia and a severe form of myalgic encephalomyelitis/chronic fatigue syndrome. To qualify for an ME/CFS diagnosis, you need severe, unexplainable fatigue that prevents your normal daily activities, unrefreshing sleep (you wake up with a hangover every morning), Post Exertional Malaise (any exertion, including mental, makes you much, much worse), as well as orthostatic intolerance and cognitive impairment. Because ME/CFS affects the same parts of the brain as ASD, it's like a double whammy. I have severe sound and light sensitivities and live alone in a dark, quiet room. I can't even hang out with my husband. Trying to manage autism like this is really hard. ❤ I'm also incredibly lonely, because TH-cam is the only place I can connect with people.
If you feel like sharing: do you turn the sound off on TH-cam and just read the subtitles? I do that a lot because the sound gets tiring. Especially with certain people.
@@Aelffwynn yes, I do! I love the captions! I can't really listen to music anymore (and I was a musician), so I turn off the sound when people have background music. ❤️
Hallo CricketGirl: Your comment has sparked a revelation in me. I've had ME for about 40 years, now much milder, and realised 4 months ago that I was on the autism spectrum also. "ME/CFS affects the same parts of the brain as ASD" I can't even begin to sort out what's what, but feel massively better knowing that they overlap. Thank you so much for your comment. Hope you improve and can return to a much better quality of life. All the best.
I never have been so deeply seen as I was in this video. My first video of yours btw. I'm currently on sick leave (the fifth week now), and I really don't know what to do about my deep exhaustion. I admire my alone time at home. But to be honest, the amount of isolation I practice in the moment in order to recover, is barely different to my isolation on normal days. I'm so isolated, that I even can't really isolate more in order to have some recovering benefits 😂 Yeah, that's that. Thanks for your video. I appreciate your humor and your self-irony 😅 Greetings from Germany
I used to constantly mask all the time, at work, with friends, with family, with strangers, and it's amazing how much more energy I have since I've made it an active point to not mask, the part that surprises me is how many people I've found are actually accepting of me and what I would consider to be idiosyncrasies. A big part of it was self acceptance and accepting that I deserved to be loved and respected for being me. That I and the people who don't accept me, well, we're both better off not being around each other more than we have to be. I feel like I'm truly being myself for the first time in a long time. I have severe ADHD, not sure if I'm on the spectrum even though I definitely have behaviors indicative of it, but that may also affect my experience with masking vs the experience of someone who is on the autism spectrum
I have had a similar experience in trying to unmask and just allow myself to be neurodivergent in public, and most neurotypical people seem to either not care, or make little jokes but not in a mean way just like they notice you’re different and trying to make sense of it for themselves. I feel like universally many people are willing to accept others for being different and appreciate when they have confidence to be their authentic selves. Because I don’t think anyone is truly 100% normal and at times everyone feels they have to mask and when you give yourself permission to unmask you are also giving others that same permission and it just creates good vibes.
Chris, I love your videos. Your presentation is so fun and informative and I enjoy your little detours during them because my brain is riding thatbtrain with you. I am late diagnosed (64!) But now that I know, so many of my life experiences make sense. Thank you for making these videos with humor and compassion. ❤
I have an intellectual disability and even I can be annoyed by neurotypicals at times. It’s annoying enough when they don’t see the world as we do- I for instance believe that most people are good at heart and that Uber and Lyft drivers don’t just do the job for the money, they simply enjoy human interaction. I may not have all of my executive functioning but usually I can tell a good person from a bad one. Thanks for posting your video.
Yes to all this, right down to the pillows. Husband and I are both on the spectrum and take our own everywhere. I am late diagnosed, by the way. I spotted autism in me through my kids' diagnoses. Also, over the years, EDS, CPTSD, IBS, eczema, sensory issues, indoor/outdoor allergies like crazy, lactose intolerance, and pondering recently whether there is ADHD in there, too, as I am a full bowl of alphabet soup, anyway, so what's one more thing, really ? ( Actually, it is just that hearing AUDHD stories lately are really ringing true to my experiences. Not sure it warrants more thought but I know me. My researcher's brain cannot be halted. 🙄) With all that, major depression and CPTSD are the only two most therapists threw at me over the years( *Sarcasm attempt* Gee. Why might I be depressed, I wonder? 🙄). Perhaps my theater roots made my mask too effective, perhaps these "doctors" were honestly just the cut-rate, shovel-the patients-in-and-out types a poor working gal could afford, so they were not highly invested in actually helping, leaving me still drowning and doing all the identifying as per usual while still taking care of my kids, my job, and my life. Auggh! So...umm...yeah...all that info dump to say I totally relate. Exhausted is an understatement. Oh, also, 46, so... time to add perimenopause to the mix now. Sigh. Everything in life is at full volume right now. Everything. Looking to supplements to crank it back down a notch. Other than that, each day is carefully parceled out-so much and no more. Each day with its limited list and much grace built in. It was not always that way, but, blessedly, my life has become more and more interior by design. My husband has heroically been able to take the primary financial reins in the last decade as my myriads of issues have made themselves more prominently known, so I know I have more ability to carve out my quiet space than some. I have yet to fully achieve a lack of guilt for my many "no's" to people, especially in my nosy, less-than-understanding little town, but learning my well-being is more important and leads to better giving of myself where I can. Anyway, that's my two cents. Well, more like a whole chunk of change. Thanks again and please do forgive the long-winded writer in me. She is hard to rein in at times. 🙂
"Autistics have to spend a lot of time and energy thinking about how to present information." THIIIIIIIIIIIIIIIIIIIIIS. I need people to understand this. NEED.
It's exhausting. I am so tired of this! I would rather be doing something else, but I am stuck - mentally churning. 😢
I always refer to this as 'translating', like the thought in my head makes sense to me but I know it won't to anyone else, so if I want to share I have to translate it. as I've gotten older it's started to take more energy than I have to do the translation, so even if I want to share a thought with someone, I'll just keep it in.
Or performing tasks that NT people do automatically
My biggest issue is trying deal with the boss, they never say what they mean, how much detail do they want?
@@davidconner-shover51 I'm 64, and have done the hiding/interpreting thing a long time, but less lately due to exhaustion. I've managed to get across to many of my coworkers/boss: "Don't book me for first thing in the morning meetings! My meds haven't kicked in, and you DO NOT want unmedicated me!" Since I work directly with customers on highly technical topics, some of the customers who I have worked with for a long time say "unmedicated you sounds like fun!" 🤩 With some customers, I don't have to mask near as much.
My exhaustion triggers are:
- Not exercising
- Negative people
- Being around people I'm not sure I can trust
- Big social gatherings where I have to interact a lot
- Being constantly interrupted when trying to to get something done. And having to create and go back into flow state to be able to complete the task. IT'S EXHAUSTING.
- Lack of sleep
- Having to follow neurotypical 9 to 5 type of schedules.
I'm kinda surprised you've mentioned following a 9 to 5 schedule. Isn't routine preferable to autistic people?
@@michaw7408Could simply be that it's a 9-5 that someone else planned for you, rather than one that works for you. Flexibility? Not from them. They expect you to be flexible enough that you're rigid in the way they want you to be. That's a NT 9-5.
@@michaw7408 Not always. Many neurodivergent people cannot work a 9-5 job. Many I know work part time or on their own schedules. The point is, not every autistic person presents the same way.
@@michaw7408 What I mean by that is more like strict no flexibility 24/7. Even when in burnout... To just have to go on and on - too fast speed. And yes, all autistics are not exactly the same. I also prefer a baseline schedule. But need days that hold space for change too.
Very True!
“We have to dance around the truth, all in an effort to make people feel good. But I never feel good!”
Finally someone said it. Why the hell should I have to make the neurotypical person feel good when I’m the one with a disability? Just say the short version of what you want and stop bothering me.
It's not the fault of the NT so to speak as they have to do the same thing with each other. It just doesn't weigh on them like it does us. It's a social game and humans are typically social beings.
I feel like I have conflicting triggers: staying home from social events can make me uncomfortable, but so can going.
Let me guess, you are audhd like me. I have same issue.
@@LittleKitsune85I also have the same issue. I really have to weigh which one will make me the most and least uncomfortable.
@@LittleKitsune85 it's a cruel game our brains play. ADHD me: need stimulation all the time or will get bored, Autistic me: Too much stimulation makes me lose my sh1t. My ADHD is in constant battle with my Autism. It's exhausting 😖😫
@@Tiffany-Rose true
Same for me. I have ADHD.
I’m diagnosed autistic and I always feel weird watching these videos about people who have the same condition but they are well traveled, great lovers, and have good jobs and bustling social lives. Like why couldn’t I get the good kind of autism that makes me skilled at an in demand field like STEM instead of the bad type of autism that makes being a functional adult almost impossible
I'm sure you're wonderful in your own way - no one else can be you! 🥰
there is no good or bad autism there are people who have learned how to mask their discomfort when traveling, working and out in social situations. I am 70, diagnosed last year, and i have always hated to drive on the interstate so i find backroads and city streets to get where i want to go. I do not go to large events without a friend who has an anxiety disorder (we support each other). I do not have a social life, and I am ok with that because most of the "social" people i have known in the past are self-centered and abusive, only wanting to prove how much better they are than me. You have to find your space, and you coping style, then it will get easier as time passes.
@@earlgreyt123says a total stranger to another total stranger...
I feel the same way. I have severe executive dysfunction. It's awful. I struggle at my job.
Sending hugs
@@victorialawhon2251 hugs will not solve the problem. Learn to adapt.
I once told a Shrink that just sitting there in a chair was extremely intense. Just being alive is intense.
Having to “feel” my skin is something I get sick of on the regular.
@@KwahzutahHoly crap you poor thing. I blame your parents for giving birth.
@@Kwahzutah As a kid I hated new clothes or clothes that had been worn by others before. I was my mom's own nightmare, and looking back, I want to say sorry for that but she's been gone for over 20 years now 😪 53 yrs old, diagnosed at 50.
Yessss Being alive is so intense fr fr
Dude I’m stressed out laying in bed listening to music
I’m a musician music is life
It’s insane
"I need more quiet time as I get older than I used to"
GOsh that made me feel so much better about my increased need for time alone
I noticed I’m struggling with needing alone time more as well. Now at 47 I struggle to leave the house.
Yes, I definitely need more alone time at home now that I'm in my 50s. I also need time every night to recover from a full day at work. As a SpEd Teacher, I feel overwhelmed everyday. I'm thankful for the holidays and half days. The full months without a holiday; my body cannot manage.
I've tried to explain to people that "we're all fish - but I'm a fish that hates feeling wet". I LOOK like the other fish, but the ocean is a whole different kettle of fish for me.
When you’re a fresh water fish trying to survive in a saltwater world
I'm a fish that can't stand her scales. I need to be a smooth skin fish
I'm stealing that explanation.
I'm only just discovering my autism and ADHD now at 30+, but as a kid my mom put me in school plays because I was so shy. I ended up doing theater for years and learned how to pretend to be like others. Then I got two degrees in communications, where I learned how to pretend even better. Now I'm this master-masker, and it's frickin' EXHAUSTING. I'm working on letting that mask drop, but it's so ingrained now that it's been a bigger challenge than I expected. I think I need help being autistic lol
I feel this so much haha. I feel like I have no idea how to just be "me" anymore, just the version of me I invented to please everybody. It's such a struggle when you've spent years with the mask glued to your face.
Look back at how you felt just existing and your responses before you played pretend for the sake of others. Some will have changed BUT the feelings had a reason as much as actions. I know it sounds vaguely philosophical, but I'm having a hard time getting the right words due to burnout.
I so hugely relate to this! My mom put me in ballet, ice skating, modelling and acting programs to teach me how to be like everyone else, because I was dyspraxic (clumsy - no depth perception) and voice lessons to speak because I sounded robotic... on and on so I finally after she died became a playwright because theatre... trying to figure out social interaction. I didn't get dx'd til almost 56 yo. I am still trying to figure out how to be autistic and stop masking because it's so exhausting!
YES. And theatre has the added bonus that you always knew what to say, and what everyone else would say. No surprises (if everything went to plan).
Fellow autistic/adhd inattentive here, 53, diagnosed at 50.
It's good to have learned to act like a neurotypical person. But think of it this way. If you never drop your mask you are exhausting yourself for others. Learn to give yourself some more priority. If you have hobbies, do them more. If you like being by yourself for a bit, just do it. If someone asks questions, just be honest. You just need some down time to process and recuperate, and reassure them it's you, not them. Just take that blame to easy the burden on your shoulders.
That said I also feel half burned out ALL the time, but that's also because my biological clock has strong nocturnal tendencies. In other words, I am a terrible sleeper and having a day/evening job (taxi / bus driver for the elderly and disabled) does not really make things easier. I should look for a night shift job, but I don't think I'd be qualified anywhere.
A world sympathetic to autistic people is a better world for all. The triggers are like a guide for creating a healthier society, which the neurotypical are often blind to. But, how to communicate, and be listened to...
EXACTLY!!! This is why is see autism as such a beautiful thing. I know it has co morbidities but if we fixed the world how many of those would be greatly reduced?!?! I’m excited for the future of the world because of the autistic community. Maybe I’m just being “””naive””” as so many ppl like to call me. Idc.
This is such a good video. It really sums up why even as a "level 1", it's a struggle. I don't even want the cure, I just want to be left the fuck alone when I need it... Which is often.
I often daydream about having a holodeck.
@@t3hsis324 And then there's the boomerang stress of "Just leave me alone. (10 mins pass) ...why are you abandoning me?!?!" My gal deserves a fucking medal! She will "leave me alone", then stay juuuuuust close enough that I don't feel abandoned.
An autistic brain often has many more neurons in the visual cortex, and often the extra space needed for that is sacrificed by the auditory centre. It explains why one can have a hard time understanding people with the slightest background noise. The visual cortex is unusually powerful, and able to send way more data than normal to the neocortex. The auditory centre on the other hand lacks raw power to discern the speech from the background noise before the data is sent to the neocortex. So it's a double punch - the visual cortex sends a flurry of data to the neocortex while the auditory centre sends partially unprocessed data to the neocortex, aiding in the exhaustion process as you have to think hard about that too, while processing the larger flood of visual data.
@@geekpimthank you for helping me to understand my son a little better...because this is so him...thank you
Yeah it approaches reality, but no one, especially level 1 elites, comprehend level 3 experiences.
And even this clear message either lethally offends allistics or they deem lying to ignore at best.
Or usually use all their social talent to exponentially explode the barriers and sensory overwhelm.
I'm 66 and yes, the world was better in some ways when phones were only in our homes. Rural life was quieter and I was able to be alone a lot.
However there was no explanation for why I felt so uncomfortable in my skin...felt alien. No one knew why I was different...and bullied.
The lack of access to so much information is one huge boon for autistics.
But yeah, exhausting.
I now take naps, live alone (ok, with 2 dogs) and I have time to think and process. Learning boundaries and when to say no was a huge help.
65 here. Recently diagnosed, everything about how I felt about myself clicked. I am burned out, hope to get my energy back. ✌🏽
I'm 46, and I simply don't use social media, or use my phone as anything but a phone... and a camera. ;) I leave it at home when I don't need it.
Being diagnosed a few years ago has made life easier, as has finally being able to figure out that I'm nonbinary, and dropping gender specific appearances and behaviours that I've always been uncomfortable with. Living alone (with a cat, because everybody needs some fuzz in their life!), learning my triggers and limitations, and feeling free to be as strange as I need to be sometimes has made life so much more livable!
Age 50, earplugs at work (even though it's safe decibels) have made life so much better, I don't even take them out when I leave work. Grocery shopping is WAY easier with earplugs, mowing the lawn (which used to be pure torture, now is only mild torture). Wish I'd thought of it years ago. And yes, never comfortable in my own spacesuit/spaceship/body, and getting older means more issues, stupid reactor core having emergency shut-downs more, not less, as I get closer to the jumpgate... just forget that last part!
@@Arthurians Earplugs are the best! I often wear my noise-cancelling headphones when I'm out doing things with the cord in my pocket plugged into nothing!
I hear you on the bodily discomfort. I've always wondered what it's like to feel comfortable in this meatsuit? Chronic illness means I'll probably never know.
@@Arthurians it sounds like you need to reroute your warp plasma stream through an inverse tachyon matrix, that should shore up the integrity of your subspace field. Live long, and prosper 🖖
I notice the shift in people too, and I’m less inclined nowadays to think “ooh did I say something wrong?” But rather go straight to “Goddammit. Damn humans ain’t getting it again…” and then wracking my brain to find alternative ways of saying things. This suuuuuuuucks.
I have an adult child who we have only known about the autism the past couple of years. They just told me a couple of days ago about this happening, a lot with me unfortunately. But I see so much differently now and in just this short time I have had a couple of things come up that I saw differently and was able to change my behavior. I also screwed up on one and am starting to wonder if I am also autistic. Anyway, I am proud of him for being able to tell me that my reaction was because I was not understanding him. He was right and I am glad to know. Hang in there. So sorry it is so hard.
Yup!! And then after a while some people shut down and stop trying to explain, such as me. I just go, "I have attempted to explain it, and was dismissed, so I'm still going to do it, and you can just assume my reasoning."
Great minds think alike hey
I once lost a job to this.
It is *miserable.*
Tuesday, I was talking to a doctor about how noisy this world has gotten. In my very late life (I am old) I had a day of testing for autism. I don't know if I am but I have many traits. After over 5 hours of testing/talking, I went out for a dinner thinking it would be easier than cooking. I broke down crying in the restaurant. I cried for 90 minutes when I got home. Though the day was fairly quiet (I wore earplugs) I was over-stimulated and exhausted. (I calmed down by plunging my face in ice water for ten seconds, twice. It reset me).
Wow! This interests me very much, the reset thing thank you. 🙂
Based off that response I would say its a high probability you are. The cold water reset is one of my go to's 👍 I also get really hot physically and if it's a cold night I'll just go outside and stand in the dark in just my pj's and stim. The cold definitely helps regulate.
I never thought about my need to splash cold water in my face at the office or when I'm out with family, possibly being a sign of overstimulation. Guess I add that to my mental list of "signs I'm overstimulated"
Thanks for your explanation
I literally say the same thing about the world being so "noisy". I've realized a lot of it is the constant EMF around me and being so sensitive to the environment that I feel that electrosmog.
I have a meter and track and have verified a connection to at least fibromyalgia.
Unless I can move, I can't reduce it more to see if it helped the migraines and immune system disorder that I've also developed after a data center literally built next to my house because of weird zoning and 4G and then they expanded and 5G came. Each time my health got worse and now the breakdowns and shutdowns are disabling and prevent me from working unless I self medicate (which I refuse to do anymore and regular meds make my life worse). Therapy is the only helpful thing because I get to talk freely and vent.
5 hours of testing and talking exhausts any neuro diverse person. I can only last half an hour of that. I think your social battery was already depleted before going to the restaurant. Better get a ready made salad meal from the super market, quick in and out.
One thing that stands out in my mind is an event that happened nearly a decade ago. In September of 2014, I attended a meetup with my Facebook Crown Victoria group in Tempe AZ at a Dave & Busters. Most of the meet was conducted in the parking lot - this was never a problem for me as I could gravitate toward people at the meet who were there for the technical stuff ... we were going to have a group dinner inside the restaurant and this is where the 'fun' began. This was on a Saturday night, so the place was packed. I went inside, figuring I would eat and leave. Hah. First thing I noticed was all the noise, followed by the flashing lights (all the arcade games and things), followed by more noise and people bumping into me due to how busy it was. I sat down at our table, ordered a Coke. More noise, which by now was blending into a sort of blowtorch of noise, the lights were amplifying the noise and the noise was amplifying the lights, people still were bumping me even as I sat down. At this point, I couldn't even make out what the person sitting next to me was saying over the cacophony of noise and at that time I just shut down. I decided it was time to leave and so I just got my Coke, took two sips, paid for the Coke and went back into the lot, made it to my car and just 'crashed' for about 10 minutes. In total catatonia. Someone from the group came out and asked if I was okay because evidently it looked a little scary to some who witnessed it.
At that point I didn't know I was autistic.
i`m sweating just reading your description! i can't handle situations like that either!
Am SO relating to your experience... I once sat on the floor in a corner & leaned against a support pillar & FELL ASLEEP from over-stimulation during a music concert. The noise, lighting, people bumping into me yada yada. Years before I pursued my ND suspicions.
DUDE. I was diagnosed in 2017, but in 2010 I had a similar experience at my friend's birthday party AT THE TEMPE DAVE AND BUSTERS. That place is absolute hell for my autistic brain.
@@silicon212 For movie theaters, sports bars, etc - I have a pair of earplugs that have different inserts for different levels of reduction. I've found the "setting" that works best for me. They seat pretty deep in the ear, so they are not too obvious. Nowadays, I might wear my AirPod Pros, with adaptive transparency mode. With many NTs wearing them all the time, you can actually appear as a "ducebag NT" and fit right in! 😆
I’m not diagnosed, 32 yo female. In 2017 my ex friend and her friend and I got baked and decided to go to the Dave and buster down the road. Like within thirty seconds of us all walking in together we kinda looked at each other like Eww and NOPED outta there. Now that I look back on it and think of this comment I’m like Ooohhh that’s why that place sucked to me 😂
Yeah bathrooms are great places to hide, I worked at a very high stress job where everyone backstabbed each other… there was a bathroom that I would go in, turn off the light and either meltdown or calm down there. Only Accounting knew I went in there, and they refused to tell my boss or other marketing staff where I was if asked. Since there was a doorway at the end of accounting that led to a set of stairs.
So good they were on your side!
I feel this I work at a fast food place and cleaning the bathrooms is my favorite thing to do because it helps me reset when I'm oversimulated. I don't get meltdowns but shutdowns its not fun.
That last sentence tho... Were they worried you'd throw yourself down a flight of stairs 😭 cause that's what you made it sound like.
Oh god. You've given me flashbacks to 2009 when I did that every single afternoon until I finally quit.
@@userequaltoNull No my supervisor was so dumb she probably thought I went for a walk outside to cool down. People knew she was an abusive witch, who tried to get me fired because she thought I wanted her job.
at 68 years old I have realized that I am on the spectrum. I now live out in the middle of nowhere by myself and have never in my life been happier and less stressed.. no input no stress! have had to deal with depression for the last fourth years now, noting. happy and content.
I really envy you 😊
Wait until you meet the chipping sparrow! 😅
I can stand every other bird, but that one. Even Bluejays don't bother me as much anymore.
I can wake up feeling SO READY to do the day. I’ll be motivated and feeling positive and capable… and then I LEAVE MY ROOM and feel like I’d rather be 💀 than ever leave my room again and POOF! Everything positive, hopeful, and energetic within me is gone and I spend the rest of my day trying to emotionally regulate back to a space in which I can make myself breakfast…at 3pm… ugh. I am literally the most bubbly yet chronically exhausted human I know.
I have severe carpel tunnel in both hands/arms, psoriasis, psoriatic arthritis, severe anxiety, adhd, and HS. That’s 3 autoimmune diseases, 2 mental illnesses, 2 chronic pain confitions, and I’m neurodivergent.. I dunno how tf I do anything. The truth is that I accomplish very little and I don’t enjoy any of it.
Yeah… but you can’t see anything but the psoriasis so I just look like a red skinned, scaly, and withdrawn weirdo. Omfg whyyyyyy…. *cheers* to anyone else dealing with this kind of stuff on a daily basis that hasn’t given up completely yet! You’re a rockstar!
Time crawl back into my hole where the outside world can’t throw me into an emotional downward spiral! Yeeee.
Skin illnesses can be improved by eating Omega 3 fats. I like to eat canned sardines with skin-on packed in virgin olive oil. Two small tins a day help me feel relaxed. Our cells must have good fatty acids in addition to proteins to make cell membranes healthy.
@@normaalvarado7540you know what’s also exhausting? People popping in and telling you, that your severe health issues can be solved by eating something particular.
Psoriasis cannot be cured by eating more Omega 3, and I bet this person has already tried everything possible and even some impossible things, to try to alleviate the symptoms.
I'm just stopping by to say I love you. The personality you showed in your comment is beautiful. What a shame you can't bless the world with it more often in the "wild". I think you're coping with your condition and overall with life under these circumstances very well. And I wish you all the best! Love ❤️
@@normaalvarado7540 Psoriasis is not a "skin illness", it's an autoimmune disease.
The beat treatments are immunosuppressants (which make you susceptible to colds, viruses, etc).
That and anything that can help avoid inflammation.
Dietary changes can sometimes be helpful but it completely depends on the person's current diet, gut microbiome, genetics, and other health factors, and things that might help one person could aggravate another's condition.
Things like omega 3s can be helpful for general health reasons, but they're not very likely to have any significant affect on autoimmume disorders.
Everything you said in that first paragraph could’ve come straight outta my mouth! I feel it so much. Please remember to be kind and compassionate to yourself. ❤
A few things I do to try and survive this exhausting world:
1) Have a sensory deprivation reset on really hard days when i get home. This can be just laying down in my bedroom with the lights off and comforting blankets and sensory tools or even having a bath with only one soft salt lamp in darkness and quiet music.
2) Allowing myself to actually be me at home with my partner. This includes not emoting as much or policing myself to say/do the right thing and knowing he'll understand.
3) Take mini breaks throughout the workday. Allowing myself to mentally check out/let my mind wander for even just a minute every hour does wonders for my mental health. I feel like I'm cheating the nuerotypical world by secretly getting to be the real me in my head for a small amount of time every day.
4) Stimming (but secretly). While I can't twirl and bite my hair or bounce up and down like I used to as a kid, I can find other ways to secretly stim when I'm at work or in public. This includes rubbing and putting pressure on the palms of my hands under a table, scrunching and unscrunching my toes in my shoes, gently running my fingers through my hair and over my scalp, and playing with tools inside my pocket
5) Wearing clothes that are comfortable yet slightly more fashionable (and with no damn tags!) as well as layers to help deal with a room being too hot/too cold.
6) Trying to give myself grace when even when I do all these things life still gets too overwhelming and the nuerotypicals get upset with me. I have to remind myself that I'm doing this to survive mentally in a world with seemingly arbitrary social rules and unnecessary sensory overload. Not because I'm a bad person if things not go well. It's a world that wasn't built for me and while I'd appreciate more grace from others if i can't have that then I need to be more gracious to myself.
All my stuff has holes from me ripping the tags out like an insane person lol
Secret stimming and sensory deprivation seems like it would really help me. I just started a new job and to say it's dysregulating would be an understatement. I think I mask by default out of learned fear, and I have the tendency to stand still (if I don't move I can't make a mistake and get in trouble), but I've found I do feel more comfortable when I can move and stim a little bit. I also notice lately I prefer silence at home, when I previously thought I needed a lot of background noise to chase away the stress. I guess it will become new thing for me to give my body what it needs as opposed to what my mind is convinced it needs. Thanks for sharing this, I think it's really insightful 🙏🏾
@@larsonfamilyhouse Tags are crazy making! A seam ripper is great for this problem. I've tried using scissors and always end up either leaving even more irritating tag bits or accidentally cutting out part of the garment. A seam ripper can remove the whole thing easily with no damage.
Thank you for sharing 😊💚
I remember having insomnia as young as 9. My mom said that even as a baby I was “colicky” and wouldn’t fall asleep until she either drove me around in the car or put me in a battery-operated baby swing that would rock me. She said they spent more money on batteries than the cost of the swing. I still have bouts of insomnia, and it has been a constant part of my life. Some nights I just don’t sleep. The only thing that has almost completely eliminated my insomnia has been regular cardio. I am dealing with a chronic illness right now and can’t jog and my insomnia is back. I can’t wait to get better so I can exercise again and get good sleep. If my sleep is bad, everything is bad.
I feel you so hard. My mum said that I was the only baby she'd ever seen who was either insomniac or nocturnal, and I was semi-nocturnal by the time I was 3. I was insomniac by 6, and have had sleep issues for the entire 40 years since. Since I'm going through a rough period right now and need actual sleep to cope, melatonin is my current best friend. Clonazepam is a good friend when things are extremely bad too.
Exactly...our gas and batteries...and no doze...whew!
THIS ❤ my mom used to talk about this too...I "never slept" as a baby, and I've had sleep issues my whole life. And when I get sick, like flu, FORGET IT. It's HIGHLY frustrating because the one thing that helps heal you, is the exact thing I can't do. Just getting over another flu, that lasted for 10 days, because I'm only getting 3, maybe 4 hours of sleep. I literally woke up every 90 minutes during the night. And that's after I took a sleeping pill, magnesium, and nyquil!! I thought for sure that would put me out, but it didn't...every 90 minutes, waking up.
I'm highly dependant on 'exercise' as well. In the good times getting the good old 10k steps a day or cycling (40m) to and from the office will suffice. But with my health getting worse in a variety of ways I have to get creative and that makes me stand out in a bad way. Leg exersises after wrist surgery, upperbody exercises post hip surgery etc. I can take a break from exercising, but then I can't sleep. :/ I'm dreading the day my chronic illness fully catches up with me.
Have you tried getting a rebounder? You can do a gentle bounce called the health bounce where your feet never leave the rebounder so it’s not taxing like jumping. I love the gentle motion. Your baby motorised swing reminded me of it, so it’s worth a try.
I'm 60. Diagnosed ADHD/ASD at 45. I grew up in that "quieter" age, but back then it was impossible to get a diagnosis unless you were non-verbal or profoundly impacted in ways that were obvious. So, I would much rather have the information that comes from having the internet, cellphones, etc. You don't have to let your devices be the master over you. It should and can be the other way around.
Ok, here are my sensitivities:
Groups of giggling women or people talking loudly.
Echoey rooms
Sudden noises
Someone approach from behind me.
Wearing pj's or nightgowns to bed (I get tangled up because I thrash)
Temperatures over 74F
Humidity w/ temp over about 60
Crinkly bags
Things that send me OVER THE EDGE IMMEDIATELY:
Ceiling fans/flashing lights
Girls talking loudly in echey public restroom ("OMG! I haven't seen you in, like, foreverrr!!)
The absolute worst for me though, is very LOW pitched noises (with the exception of whale songs). Examlpes: A large truck idling, bass turned way up in a person's car no matter how far away it is. If I can hear it at all its torture for me.
These things can often send me into a huge meltdown with little or no warning! Otherwise I "appear normal". I can't blames people for not believing I'm on the spectrum, but it makes it EXTREMELY difficult to explain a meltdown.
Omg crinkly bags! People eating apples. Popping gum. Flashing lights. Loud restaurants. Loud music. Crowds. Popcorn at movies. Movie theaters (volume). HEAT over 74 also. Smells. Bad breath. Garlic smell. Smell of cupcakes in a school classroom. Food that smells like B.O. cigarettes, cigars, vapes, weed, strong sanitizing products, pesticides. Ad Infinitim. I have not been diagnosed as autistic but I certainly have a lot of sensory issues.
The crinkly bags. 😵💫 I third that. Especially if it's over the phone because someone you're talking to has thought "I'll hold it away from the phone..." Doesn't matter! It's so terrible! Phone calls are hard enough, then the bag joins / interrupts and ooh boy! I have stopped mid-sentence so many times to just ask, "what are you DOING?" 🕺🏻
@jmaessen3531
For me it's when they are emptying the dishwasher over the phone and the constant clattering. Especially silverware. Or eating cereal out of a bowl. Every time the spoon hits the bowl. I hate that sound! It hurts my ears so much.
I don't buy crinkly bags and I don't know that I hear them a lot. So this may be why I don't know if those bother me, too
AuADHD here.
All of this except ceiling fans (Texas. It's always hot). But throw in overhead lights and that makes me instantly go into meltdown mode.
Not sure if ASD, but I have extreme A.D.D.....for me with the sounds....high pitched noises bother me and I can hear higher than most people my age (29)
"but I never feel good!" yeah, exactly.
mental health specialists do NOT want to hear this in my experience
What you said about computer and phones is exactly what I tried to explain to my wife for years : this fucking constant interruptions, the annoying "vrr" from a text coming which anguish me, the no times alone anymore because there is always someone to text you (or her, cause nobody text me anymore because I don't answer, too exhausting) some shitty thing you don't care about, and you need to answer something if you don't want to be rude. But answering what ? It's like you cannot be alone anymore, you cannot rest anymore from people and that's exhausting... And when I explained that years ago I didn't even know I'm autistic, it wasn't even something I heard about, or think for myself. And now I understand better why I've always feel that about social network or texting. Why it was so exhausting, so scary. It makes so much sense.
You explain it very well, that is exactly the words, the feelings, I'm so happy someone else express it, it make me feels better and I don't think anymore I'm a "monster" or whatever not to love social interactions or to be anxious about texting or social networks. I now know that's a part of my autistic brain.
Thank you !
My phone lives on "do not disturb" mode. I know I can trust my close family not to bother me unless it's important, so they're allowed to bypass it ("starred contacts"), and alarms (because my ADHD means alarms and reminders are the only way I can keep up with appointments and such). Anyone else can leave me a voicemail/shoot me a text and I'll see it when I see it.
@@digitalcalibrator9740 Yah ! The same here now.
When I was a teenager people constantly asking me (and some with anger) why I even have a cellphone because I never answer it (what they didn’t know is that I answer, but only to people who I really love and then I was too exhausted or annoyed for answering them… sorry guys I didn’t like you so much 🤷). In fact I still do that but with time not so much people I don’t really like have my number now.
I also cannot tell how many time my mother yelled at me because I didn’t pick up the phone when I was a kid, and she doesn’t understand at all what I feel about not knowing what to say on the phone, how to interact, even with people I know. She doesn’t understand the anxiety that I feel about picking up the phone or calling someone (even a friend). For her it was stupid, I was a coward, and even more that my sister who was 2 years younger than me can do it. Not a fun part of my life. Knowing about my diagnosis makes so much sense on this kind of experiences now
My phone is almost always off. I check it maybe once every day or two and turn it off again. I have had to get to the point with people where they at least partly 'understand' some of the things that have to happen for me to get through a day with any productivity at all. It began to become a joke in my community ('if you need support or whatever, call one of us but don't call him, ha ha'). Alone time has to be fought for as we are raising a family, involved in church leadership, and cannot avoid a significant amount of social engagement.
@@digitalcalibrator9740 yep exactly! I have almost all notifications turned off!
turn off notifications, duh
All mentioned here, except sleep issues, applies to me.
Neurotypicals constantly 'read' my face & body language and they 'know' what I think and how I feel. And are always wrong. I mean, if you wanna know how I feel ask me, instead of 'knowing'. Had such problem with my dance teacher who 'knew' that I was 'worried' by reading my face, while I was just concentrating & enjoyed repeating my moves.
And I don't even have a TV at home and when enter a space that has a TV on, like my wellnes centre lounge room, I make sure I turn it off right away. I go to my gym because it is one of rare gyms around that is silent, no stupid loud TV screens and irritating pop music.
Ha! I took ballroom dancing lessons for a while, and once I showed up about half an hour early because of the trains and just sat there waiting. The instructors were very worried that something was wrong, because I looked so sad. But that's just what I look like. I apparently have Resting Horrible Tragedy Face.
@@kemowery Hi. Yes, so annoying that people constantly think they know how you feel or what's going on based on something so superficial, laregely evidence unsupported and culturally biased, such as 'body language'.
I do classical ballet.
For me, setting boundaries with neurotypicals is still one of the biggest challenges. I once worked at a company where they would randomly call meetings at short notice. And not just any meetings, those were meetings where I was supposed to present something, or at least provide some input to the discussion. When I told them that (a) I would like to do as many meetings in a block (that reduces the before-and-after time it takes me), and (b) have meetings regularly instead of randomly so that I can plan, they first said "yeah sure" - and then the amount of meetings doubled and they happened just as random as before! And then there were meetings in which they explained why meetings are time critical and important, and that they needed to be flexible! When I pointed that out, they set up even more meetings, just to see whether I am available at all times. I quit that job.
However, this is a very common pattern. The more I ask neurotypical people to respect my needs, the more stress they put on me. So I have long given up on that too: it is not worth it. It just makes everything so much worse.
If you - or anyone else - has any thoughts on this, your reply is highly appreciated.
They were punishing you for daring to ask for your different needs to be met. They definitely felt that you were asking for more than they could dare to ask, and were spiteful and jealous. It's not based in pure logic, it's social dynamics and emotional responses at play.
Sounds like they wanted you yo prove what you needed. They were out of order.
Unfortunately, I'm 57 and have survived by saying yes and having constant dialogue in my head instead of saying no and dealing with the fallout. I would love to be truthful all of the time but the world is not prepared for that. I just don't get people or the world we're now in.
Gentle distant hugs.
There's really no such thing as telling your job how to operate. Jobs don't just accommodate people because you ask; they pay people to do what THEY ask. That's literally what a job is. Boundaries are for personal relationships. Quitting a job is appropriate if you don't like it but most people do not like the way their office is run. That's just life, and that's why many people have a goal of working for themselves.
@@pld-wc7gf No, that's not "just life", that's life in the capitalist society we live in.
What you are saying is: THEY are the ones with the money (or their cousins), so THEY make the rules, and THEY have all the right to pick on everyone who doesn't perfectly fit in with THEIR expectations.
What I am saying is: we can do better. A lot better. Autistic people are way over-represented in engineering, and STEM in general. We are the ones who innovate. We are the ones who keep things running. We might seem a bit odd at times, but we deserve way better than being bullied by rich little brats for no other reason than that it is easy to pick on us.
You disagree?
"Thats just life" is just cope they could do a lot better @@pld-wc7gf
A long time ago, before I knew about autism and masking, I tried to express my rejection of social norms and behaviours in one sentence. What I came up with was "Fitting in gives me the self-identity blues."
Now I know why I said it. Thanks for sharing your experiences. It helps me understand me better.
Love this.
My daughters triggers (4years old)
The material denim
Any kind of trousers - has to be skirts or dresses
Too much noise
Any kind of light in bedroom when trying to sleep - she won’t sleep unless blackout blinds are fully covering windows
Being too hot, she is naturally a warm girl but hates layers and pjs on in bed with a blanket
Hair being blown in her face, has to be pinned back
My husbands triggers
Too much noise
Talking to him while he is doing something else
Trousers & Jeans
Being too hot
Spots always picking
Road rage
I have all of these except the blackout curtains. It's rough for sure. Can't stand pants and I'm always getting judged for wearing shorts. I'm not cold, thank you, mind your business...
With your daughter, have a doctor check to see if her eyes close when she sleeps. I had this problem and it wasn’t diagnosed until I was forty! 🤷♀️
Omg I have horrible road rage. I hate driving and I get so mad at people who do stupid things.
@@carissaa8411 It sucks because if you think about it, it might be the one mistake one person makes on the road, but because we deal with hundreds of people, if they all make one mistake it adds up.
@@karens8633 thank you I never thought of that
I don’t think I’ve recovered from high school. It was a sensory nightmare, and went against my delayed sleep phase disorder. Especially since I had band before normal school hours. I missed so much school because my stomach was hurting every day, I’d have panic attacks and meltdowns when getting up or even when about to enter the building and would beg my dad to let me go home.
I feel like I was medically neglected. Because I looked normal otherwise and did well in school. Two teachers commented on my absences, and neither with any sort of compassion. One told me I would fail college because they wouldn’t tolerate me missing class EVER (lol, that guy was so so wrong), and the other just wanted to know how I kept my grades up. The trick was that I could do my class work in the safety of my own home instead of in class, where there was constant social interactions, fluorescent lights, limited bathroom breaks, and constant stomach pain. I was exhausted and probably stunted my growth. I also had an autoimmune disease and repeated untreated UTIs. No one ever said it to my face, but I’m certain adults thought I was lazy or stupid or looking for attention.
Oh wow it has a name! I’m only not tired if i can sleep until whenever I’d like which is almost never. Been late every day since kindergarten.
I don’t know what I would’ve done without horses, growing up. They meet you where you are, and you don’t have to mask with them. My time at the barn once a week was my therapy. It still is.
Same. They're my rock and my sanity. I wouldn't be here without them.
Maybe this explains the "equine therapy center" that's a few miles away from where I live. I watch farm animal videos to relieve stress. People need local farms that operate like farms did 100 years ago.
@@Nphen look up EAGALA therapy programs. Horses are invaluable partners for mental health programs in addition to their uses for physical and mobility therapies :)
Same here. They are almost the only happy memory from my childhood. I always feel happier and more relaxed when there are animals near me.
So relatable, I've spent a small fortune in my quest for the perfect pillow. And now I want a turkey...
Seven Sundays from Switzerland! Warm recommendation, theyr memory foam material finally relaxed my neck!
I‘m still searching for the perfect pillow, always lack of sleep and exhausted. But I would rather have a dog than a turkey. I am 61 and I have all the symptoms 😢.
They have cooling pillows at Costco and I use a silk pillowcase to save my skin and not get too hot.
A big turkey. That's important!
I Frankensteined my own pillow and it was the best thing I ever did!!
In all honesty, I’d love to have a virtual phone call with you just to have like an interview and talk about experiences to see how diverse peoples autism can be between one another, and the contradictions between different individuals and how autism affects them
"Did you know that many autistics also have consistent health issues? These can range from gastrointestinal issues, skin issues, food sensitivities..." - I mean yeah I got all three of them.
😮💨
Have three of them too.
Carnivore diet
@@pld-wc7gf yes because only people who eat meat have those issues, as we all know vegetarians are perfect lifeforms.
we’re vegan and vegetarian autis and have heaps of gastro issues.
I mask automatically, it feels like I have no control of it, and the only time I can be me is when no one is around.
Same.
Same. That happens when you are punished for being yourself from birth, right? The only time i drop my mask is alone with the pets or with friends who have no masking ability at all. my fave people.
Same here.
Master masker at your service
I am on the road finding out how off my childhood diagnosis of "Mild Asperger's" was...
And I feel this, only really recently have I started noticing how much I do as an automated response system....
It's...an interesting road...
I'm pretty sure TH-cam listens to me because I woke up this morning and I said to my husband... I'm so exhausted I have no energy and I don't know why... and then here's your video... So correct on all points. ❤
TYSM for this!! Everything you said, especially the sleep & stomach issues really hit home. Also my hearing is super sensitive too...I remember as a kid, back in the 70s, department stores jewelry cases had an "invisible " alarm system...invisible to NT anyway...and every time mom would drag me there, I would scream, because the high pitched noise was so overwhelming. None of my family could hear it, and they automatically labeled me, as a 6 yr old, as...crazy, too sensitive, etc. My dad was the only one who eventually figured out what it was, and why I was having this seemingly over dramatic response to that noise. But my family laughed it off, still labeling me as overly sensitive, and crazy. My mom would say I needed to just get over things like this, because the world isn't going to change just for me, (which was true) and to basically stop having meltdown moments when I felt overwhelmed. And I was a constant source of joke about my stomach issues too. I literally vomited most mornings for the first 25 yrs of my life, due to sensory overwhelm, and still have upset stomach most mornings, just not the vomiting anymore, THANKFULLY. My mom would mock me, saying...oh we can't take her anywhere, she'll just throw up the whole time, or some insensitive thing like that (she was a narcissist)
As a super late diagnosed woman, at age 50, It feels really good to be validated by your video's, because I FINALLY know that I'm not crazy, or too sensitive...well maybe the too sensitive applies, but I like to think of it as exceptionally sensitive 😅. Anyway, I really value your content. It's brought SO MUCH clarity to me. Your channel is such a valuable resource 🎉🥂💃🎉
I had a dr recommend i take pepcid ac every night before bed when i was in jr high and now when i start to have issues i atill do that and it really helps! And if it still feels bad in the morning i take another! It’s not exactly the best for you but hey it makes it so you can function. Im always surprised by how well it works…until it doesnt and i do the full round of Prilosec and them im better for awhile again usually. I try to do it as soon as i notice it acting up bc if you wait u til it’s a fire volcano it is MUCH harder to get back under control.
After a social event I'll typically need at least 12 hours sleep that night (whereas usually 6-7 hours is sufficient), or after babysitting for even 1 hour, I'll need a 3 hour nap, and then I'll sleep perfectly well that night for my usual 6-7 hours. If I need to have a business meeting or interact with a customer (on the odd occasion), I'll need a 1-2 hour nap afterwards.
Currently having a shutdown, because I went into the city for shopping with my husband and kids and it was really busy. We don't go very often, but it's worth the shutdown once in awhile to spend time together getting nice things for everyone. My husband works during the week so Saturday is the only day we can all go. We go early tho so it's not as busy.
Masking and sensory overload are my 2 main issues that lead to anxiety and depression quite often. As I'm getting older it gets easier not to care what others think.
At home I get to be myself, I'm the gamer mum who hyper focuses on random things all the time and it's ok. I get to sing at the top of my lungs and do crazy dances with my kids and that's what gets me through the day.
It's taken me a long time to just accept who I am and not always look at how others do things and keep thinking "why can't I have/do that". I am who I am and that's ok.
Sound cancelling earbuds have been a real blessing for me since they aren't to visible so not to many people notice I wear them when outside, especially when shopping to block out all the sounds my brain just can't block out without spending a ton of energy on ignoring the stimuli.
I sadly can't remember exactly the paper i read it in but apparently in general the autistic brain taken in about 60% more external stimuli than a neurotypical brain, but the part of the brain that needs to sort all that information is still only equipped to handle a normal amount of information, so its like having a 16 liter water hose attached to a 10 liter valve and expect it to handle that extra pressure, it might be able to for a time but eventually it fails and when that happens especially with sudden very loud noises as he explain in the video our brain quite literally short circuits for a bit and has to reboot for us to get back in control.
Exercise is the worst. I don't feel pain normally, and struggle with knowing when I am overdoing it until I have way overdone it. Then, I struggle to move because everything has locked up. So I have to do any increases super slowly to make any progress. Then I'll get sick and loose all the progress I've made. I know it's important to be able to continue to move, but it's just so hard and it often seems to take all my energy so I have nothing left to do anything else.
It's so comforting when you put into words what I experience and struggle with daily 💕 Thank you so much 💕
I love how the more time goes on the more pieces of the puzzle I fit into place to understand why I've been feeling this way for my whole life. As an higher functioning autistic but I isolate sometimes weeks at a time too one session with a relative that doesn't stop talking ,my stepfather, over stim is exhausting
I can hear the fridge humming now. Goshdarnit.
Or the fluorescent lights and bats squeaking and I can’t stand any sirens a,arms or strong perfume
Same
rip but i could always hear it its that classic hum but very low
Weirdly I find such sounds comforting, and can't stand absolute silence, need me white noise
OK, I don’t even know if I want to go through the trouble of getting an official diagnosis, that’s how old I am, and never had an inkling until about six months ago that I am autistic but the sensory issues became so overwhelming and then I started to learn about autism and realized that I am autistic. I pass every test out there with flying colors and I’m working with a neuropsychologist. This is her area of expertise, but she is no longer diagnosing folx. Anyway, one thing that really helps me with my fatigue is to swim on a regular basis. It’s a perfectly acceptable way of stimming, and it feels great and helps me with sleep. Because of some ear issues I stopped putting my head in the water and I’m enjoying it even more. I hope this helps someone. I really love your channel.
Commercial interruptions, voting text messages, pharmacy and doctor reminder texts, all irritate me so much. If I’m tired and there’s too much light or noise or both, there’s a good chance I’ll get a migraine. Working super early 5 days in a row is definitely challenging for me because I feel like I’m running on fumes both from being tired and from the sensory overload. I love the jobs I have but they’re also a struggle. Soft blankets and sweatshirts and hoodies and long sleeve but thin cotton shirts make my life so much better. Good smelling shampoo conditioner and soap helps me want to actually take a shower, as well as listening to something while I shower. Flavorless toothpaste has changed my life (I use Dr Bob’s Unflavored toothpaste, which is a tad sweet but not enough to leave a major aftertaste like mint or watermelon or bubblegum).
Perfect timing! We had visitors over yesterday ... and I slept for 12 hours straight afterwards...
This video speaks of my daily life. Although, because was recently diagnosed at 65yo I came to understand it’s a burn out due to masking and sensory overload. I am most of the time in my room cause light, even sunlight drains me. For a 1/2 hour conversation or a quick supermarket trip I need to rest one day and a half. I wonder if I ever will come out of this burn out, I’d like to enjoy life. Thank you for your videos, it helps me to clarify many traits, you are also very funny.
Sorry you're in such a deep burnout phase. 😔 Glad you're here and able to join in on all our late diagnosed "aha moment" sharing. I hope it provides some degree of community relief and a sense of finding your people. 🫶🏻
I like how you talk about things. For all it’s worth, I think you’re quite good at communicating information, and you’re also quite funny. And obviously I can appreciate how much effort it can take you to do these videos. I don’t think ND people can appreciate how hard it is for us to communicate in an effective way, but as an autistic person, I do! 😊
Anyway, one of the positive aspects of learning I was autistic has been to learn how to handle my energy levels. This has included learning not to push myself like I did before, when I unsuccessfully tried to be “normal” (spoiler alert: of course I crashed and failed spectacularly!) It still difficult, and I’m still pretty much exhausted most of the time, but now I know I have to prioritize rest and isolation from stimuli when needed.
I’m pretty happy nowadays you can actually find information about this topic! Just a couple years ago when I was diagnosed and was trying to understand why I was always tired, you could barely find anything about it, so progress!
Pillow issues are serious.
Absolutely!
And now I always pay attention in Booking reviews on mattresses quality. This is the thing you can't pack into your luggage :(
I just found a pillow that I stay relatively more comfortable with. One of those memory foam side sleeper pillows.
If I even have a crease on my pillowcase it makes me uncomfortable. Also whether the seam is on the side or if it rotated to the top 😁
I literallyw lay on the floor in the store trying all of them out lol it’s extremely hard to find a good one! It seems like usually it’s the cheap synthetic super squishy one that ends up being like $5 that always wins for me tho so that’s good at least. Idk how ppl just buy any old pillow and it’s fine…pure insanity.
I relate to the pillows my bed has a stack of pillows which are placed for my comfort. My bed is my space where l can unwind. TV noise radios in background can’t do. Horns on cars l jump out of my skin especially when l am driving. Room full of people this is totalling over whelming. Thanks for your videos they are so helpful and relatable 😊
Felt like you were talking directly to me, Chris! Thank you so much for making this video. 🌈
A tip for reducing interruptions from messaging: create one-on-one chat groups with the people you communicate with the most. Mute the notifications and tell the other person to use the group for messages that do not need immediate attention. You could have also one for your entire family. That way you can read the messages in a pull mode rather than push mode. This has helped me a lot. I actually started doing this before discovering my autism or ADHD. Great video btw, thanks for making it!
Same 👍🏻
I just turn off all notifications for everything and check my messages a few times throughout the day. Do not disturb works great too!
@@larsonfamilyhouse for me that is a bit too much filtering. But I think I've cut 90% non-urgent notifications and I think now there's about 50-50 split between urgent and non-urgent. So still not optimal, but much better than what there was without blocking.
Whew, the pillow thing is SO TRUE
Hospital pillows are even worse because they have that plastic cover
Oh my God, every word you said could’ve come out of my mouth. At 62, I well remember the no-computer, no-portable-phone “Bad old days.” I hate the intrusion of cell phones. In many ways I’m now living your dream - we’ve just retired to 11 acres in the woods. It’s pure unadulterated heaven. Of course, it makes it twice as bad when I do have to go to town, but it’s worth it!
Exactly fuck getting random phone calls forceing me to be social at anytime of the day but messages, SMS, email that's the GOAT I can take my time think about what I want to say and go over the message and make sure I know exactly what was said to me.
One of the most helpful videos i have seen to help me as a NT understand my autie loved ones better, thank you!
I have this problem at work. I often show up late because I can’t manage to consistently wake up at 6AM. I can’t manage to consistently go to bed at 10 or 11 PM.
I have a hard time presenting information in a good way, thus people shoot to conclusions or take the wrong things out of the conversation.
When people push me over issues I can’t immediately fix or weren’t my doing to begin with I tend to partially shut down and my choices and actions can become skewed from the norm.
A good example of this is that I was recently pushed on a minor issue I didn’t create nor could I immediately fix it.
I then immediately after that had to get into a work van and drive to the site.
I didn’t take the time to destress and calm myself before starting up the van.
I started driving and got to an intersection where someone came from the left. Normally I would have stopped. Sometimes I make a quick decision and still drive because I know I can make it. But because of that stress previously my mind wasn’t functioning like I normally would and that made me drive when i should have stopped. No accident happened but it was a close call.
For me, it’s being out in public, particularly grocery stores. The lights, the sounds, everything.
When I was younger I would only shop at night but after the pandemic none of the stores are open at night. Now I just have them delivered.
It saves me so much time and prevents sensory overload for me.
Same! I used to shop like 3am-5am and now it’s so hot and busy everywjere and everything closes at like 11 😭 it was so nice being the only one in the store before!
I travel with my own bedding to be able to sleep, user earplugs A LOT, and chose my living space very carefully. It's 3 minutes away from the woods, I look out on a beautiful garden which I don't have to take care of. And it's quiet - I could even sleep without earplugs, but I don't, just in case. I bought several sleep masks until I found the perfect one for me.
Perfect!
I really agree with the comment about not liking loud noises but not being able to control your own volume. I like music and need to listen to it loud but car horns, random alarms, even someone coughing loudly near me can sometimes cause physical pain. However, I have heard (sometimes when people didn't expect me to) about how loud I am in conversations. I don't think I'm louder than anyone else, but appearently I am. I can't tell. Once I explain that to people usually they are alright.
I'm in diagnosing process for adhd, the testing person said, seems to be autism, too.
Exhaustion and social contact/communication are my biggest problems.
My tringgers are:
Vision confusing patterns, flashing lights, somebody suddenly turning the ceiling light on or off, high humidity, several conversations around me, several people talking in an echoing room, this high pitch beeping in some buses or tubes before the doors close, sudden big noises, I need my own pillow and at least one other for positioning in bed. I can't eat well cooked vegetables and many other foods and it drives me crazy when I'm supposed to follow unclear expectations or when I'm disturbed frequently in a task. I need my Alone-time after work (at least 2 hours in one piece) and during the first hour in the morning as well a the last one before sleep, I have my rituals, but I'm still flexible somehow. BUT never change a plan that was fix! Except that ones, which I did only agree to please others. That ones may be cancelled ;)
Trust and believe that yes, I do most certainly have to mask. All the time outside of my home.
I have to mask outside and inside. I have nowhere to just exist 😔
Thanks for the vid. Late diagnosis here. So many of these things resonate. The energy spent interpreting from & presenting information to a noisy world is flipping exhausting sometimes. I love parts of my work as a teacher but have had to take on less hours due to the incredible levels of stimulation that leave me feeling destroyed. But I’m so glad to be finally realising these things about myself.
My wife knows when I say “I’m going to take a shower” that I’m literally going to sit in the tub, let hot water beat on my head, and space out for like 45 minutes in pitch blackness. We usually shower together, but when I just want to go, she knows it’s just my comfort spot to decompress and recharge so I have the energy to hang with her for a bit and not be moody and easily irritated. She knows every day/night after work, I need time to just be for a bit and then I’m refreshed and ready to hang for a few hours. Plus if I’m already drained, I’m not going to pay attention to any movie or anything cause I’ll just be sitting there feeling like I’m just just forcing myself into a situation. She’s learned a lot about Autism and just lets me do my thing as needed. She sees how much things can positively or negatively effect me, especially when I’m already stressed, or my anxiety is just at an all time high for no reason. I do hear noises from our electronics too that she doesn’t. We have a sound bar and it gives this super high pitch hum after like 7 click of volume up and it’s drives me nuts. When theres no noise, I hear the static white noise it gives off. She’s amazing at how it can be loud as hell, but I can still pin point the most faint yet annoying sound in a matter of seconds lol
Before I was diagnosed at 31 back in 2011, I was working and at the end of every work day without fail I would have a heart arrhythmia and black out. I didn't understand why, I didn't understand why I couldn't do the things other people seemed to be able to do with ease. Now I've been unemployed for 13 years, not just because of autism btw. And at first I felt relief that I was free from that daily exhaustion and terror driving me to depression. But now I'm just isolated still depressed and constantly terrified of my sole source of income disappearing. Seriously. Autistic people cannot win. What are we supposed to do?
Peopling really adds to my fatigue! Ugh. Yoga usually fills up my spoons (because, for my body, yoga is a giant stim.)
I just found your channel, I have screening coming up next month for autism so I've been checking out different places for information. Not only do I have a 90% assurance that I'm autistic, but things I'm hearing about make me realize my mom had it as well. I am in desperate need of some understanding of myself because I fell like I'm just a very odd duck and no one can relate to me at all! So many triggers, health conditions and brain issues that I have no clue where to begin besides hoping the screening may shed some light on my issues so I can take steps and move forward towards finding at least a bearable space in this world.
Thank you for this, and the template as well! 💯
Social situations and being overstimulated also wears me out. And the bed situation, I totally get it! For a long time, my bed didn't actually suit my needs but I didn't care much. And whenever I was on holiday or staying somewhere else, I was like: nah, I'll survive this. But last year I've bought a brand new bed and an awesome pocket mattress! My sleeping definitely improved although at times I'm still overthinking when I'm trying to sleep. My brain often just won't calm down, either anxiety or thinking about things I'd like to do.
But a couple of weeks ago we went to a cottage on the island of Texel for a week. The bed was a bit simpler than mine and the mattress was just too thin. My bf and I decided a couple of years ago to keep long distancing because we both need a lot of quiet time. He's on the spectrum too. And it's about an hour's drive for me to go and see him.
So we rented the cottage for a week, but we left after two days because our backs were getting more sore each night and I was just exhausted and depressed the second day. We went out for a few groceries in a nearby town and then we went for an ice cream (there is a dairy farm close by that has an ice cream shop with many different flavours and also a few lactose free) and the next day we packed up and drove to my place to stay together for the rest of the week.
I'm exhausted a lot, sleeping issues since childhood which I think is due to anxieties. I was also bullied a lot. My bf has IBS among things and he's lactose intolerant. But then it's okay we live apart because when he's not here, I can cook things my way with lots of onions, spice and things he can't have. When we're together I adapt to his needs.
During work whenever I need a moment, I often check on my fish and shrimp. I recently got a number of pygmy corydoras, they are cute as heck!
I was about 12 when I woke up at 5 AM with my first panic attack. Sleeping on a flat surface with a flat pillow is impossible for me because it makes my throat feel tight and then it's panic city. I've spent more of my 52 years of life sleeping on couches than beds. I just find them more comfortable.
When I was a teen I couldn't sleep at night because of my anxiety and panic attacks. Being bullied at school for being "weird" was a HUGE problem, which is why I dropped out at 16 (even though I did go back 10 years later, and eventually graduated) I now know that being autistic and autistic burnout had a lot to do with my decision to leave school too.
I've always run more on adrenaline than sleep.
@@elizabethsullivan7176 the worst was during my first concert tour with Utrecht Students Choir and Orchestra to Latvia. We stayed at a hostel in Riga for a week and those beds were just very spartan and very bad. But I was young at the time and pushed through. Sang 2 Matthew Passions (by J.S. Bach), second concert was in a dishevelled church with a broken roof in like March and we were all freezing. But the best thing was having a common passion for baroque music, for Bach and all around the same intellectual level (uni students).
I think that's where we are most comfortable hanging out with people we connect more easily with on an intellectual level and mutual respect. My friends are all into scifi, anime etc. And most are on the spectrum. You don't have to mask when you're around them.
Also, I get being on adrenaline all the time while at school because of bullying and pressures. It causes health damage, full stop!
Thank you so much for this video. It explains what I couldn't put into words.
It's been exhausting trying to figure out why I'm always exhausted!
I was diagnosed recently at 33 and have never been able to figure out why I am so tired all the time. I just figured it was caused by a combo of all the other other health conditions I DID know about.
Oh hey, the sunglasses in the grocery store thing is an easy fix! Zenni has fl-41 lenses that block ouchie lights. They call them migraine lenses but they're fl-41s! I have them in 25% strength for daily wear and 75% for outside sun time in texas. They work better than super dark reflective lenses too and make fluorescent tolerable
thank you for this video. i just left my job and have been feeling very bad about not being able to keep up, but it is really true that I'm so exhausted from masking almost all the time. this is a really validating video.
If I had a quarter for every time I said this "did I say something wrong?" Ugh. My bluntness has hurt so many of my relationships. I appreciate bluntness because I feel they aren't lying to me. I started to notice as I've gotten older I can mimic how someone speaks to help me feel they understand me rather than my true self. I don't even know if I have one since I mirror who's speaking. Ty for the education. ❤ to all.
Very helpful! I’ve recently discovered that yellow / orange tinted glasses really help with glare and don’t get so many funny looks in shops
I was diagnosed with depression for years because I felt exhausted and upset all the time. Now I've received my ASD diagnosis (at 28!!!) I am finally started to realise what has been causing the exhaustion and managing my energy levels better. Meeting new people can wipe me out for days, but wearing sunglasses indoors has made shopping trips easier. Thanks for the template, it will be really helpful as I continue to experiment :)
Thank you a gazillion times over for this video, its gonna change my life...
What makes me exhausted? Working as a software developer. Especially when working with workitems that are not well described and have a lot of open ends. And after you think you are done with the workitem you will get the full list of requirements (and can almost start over again).
Relatable. I also appreciate the production quality.
Years ago I decided that when people tell me I don't need sunglasses inside, I just say 'How the --fuck-- would you know? Are you me? You obviously don't know what I'm going through, so I'll be the boss of where I wear my sunglasses. Have a day.'
But tbf, no one's asked that in literal years. Ppl just don't care anymore. They too do whatever the duck they want.
And neither do I. As long as I don't act like an ass, I don't care what people say about me or if they stare at me.
What are they gonna do? Have an opinion that's not going to matter to me? It's not like they can get me fired or expelled for being autistic. 🙄
Sunglasses popo lol i’s be like what r u, the suglasses cop?? Gtfoh
I'm a NT, but even I do the sunglasses thing cause I have subscription so it's too much of a pain to swap out to regular glasses a lot of the time. Rock on indoor sunglass people. 😎
sunglasses are extremely unhealthy
sunlight is essential
bluelight/LEDs are toxic - sunglasses aren't the thing to use, use bluelight filter lenses
I'm female, a very active senior and identify with at least 95% of your discriminations... it's heartbreaking and also a relief..I use to just think I was very broken...I qish I had a formal diagnosis and a therapist...some validation... it's been a hard road...
Sorry for the miss spelled words
I can tell you some positive triggers (Autistic joy)... puppies and cows! Share with the class, man!
I'm on week 2 of recovery from emergency gallbladder removal. Crappy sleep, can't eat anything I want, IBS worse than ever, pain, weakness, exhausted from half a shower. I was already burnt out from other things and now I can't do any of my normal decompression stuff so its just nap and try not to have meltdowns all day.
That is ROUGH, wishing you smooth and speedy recovery 💜
I also have neurodivergency (adhd and autism) and digestive issues. Had my gallbladder out when it did literally nothing in an ejection fraction test.
So, i have some things you might not know about that might (or might not) help.
1) moringa, thyme, rosemary: these are all great for helping me manage my hyperactive bile ducts. Not sure why they work but it goes beyond the fiber like I initially thought.
2. (You might know this), my doctor put me on an antidepressant that helps levels of not just seratonin, but also norepinephrine (ppl with adhd tend to be low bc Dopamine is used to make it). So..
3) a lot of the same neurochemicals that your brain uses are the same that your gut uses. So, you can look into norepinephrine/noradrenaline, seratonin, GABA (and there's a few more I can't remember)
4) lastly, if it does have something to do with your gallbladder or bile look into TUDCA (a type of bile acid). Our bodies produces little, but the pills, seem to help a lot. My hypothesis is when my body notices the TUDCA in my stomach, it doesn't freak out and overproduce bile because it "thinks" the job is already handled. And as far as bile acids go, this one is significantly less likely to cause bile dumps or acid reflux. A lot of people agree.
(I get Nutricost and prefer synthetic because natural is derived from bears in a way that seems unusually cruel, even for corporate farming.)
No worries if nothing helps, I wish you the best with your healing journey.
Edit: also maybe make sure that after your guts liquidate their inventory you replace your microbiome a bit. I like a shelf stable variety that has as many different strains as possible. That way I'm not overloading my guts and your body will naturally adjust to the right levels of the right microbes. I just find that I get back on my feet faster with a probiotic.
@@Alice_Walker Thank you :)
@@steggopotamus Thanks, I'll look into these. I'm also dealing with metastatic breast cancer and was just starting to make progress on the issues from those meds and this is like going back to square one. I swear I eat more supplements than food these days but if it'll keep me from spending my days within 20 feet of the bathroom I'll be happy to add a couple more, interactions permitting of course!
I hope you’re feeling better ❤
This is so on the money. It’s taken me a very long time to figure some of this stuff out for myself, videos like this are hugely comforting. Thank you very much 🙏.
I usually don't realize my volume issue until the looks of folks near me shift subtly.
I often feel like the world is like a land mine field. I really try to be agreeable and easy to get along with. This video really hits home. My kids are grown and my youngest (diagnosed as on tge autism spectrum) is in college and lives with me. Everyone in the family tells me that I've always acted just like my youngest and are probably on the autism spectrum as well. I wish you well! 😸
Thanks Chris, I learn and understand a lot more through your videos. I'm between laughing and crying. It's good to know I am not alone in this. I've asked myself all my life, what's wrong with me? Why can't I be "normal"? „Be yourself"...but not like this...louder, quieter, not so strange, not so sensitive, more diplomatic... 😐
I'm glad to have found your channel. ☺ Kind regards, Mimi
Hi Mimi! I’m glad our videos are helping. Thanks for sharing and being here 😍😍
@@ChrisandDebby 😊🙏🏼🧡
You're hilarious. 😅
I related to everything in that. I'm 61 and recently discovering I may be autistic and so have decided to go to Dr to see about it. Have struggled all my life. Now it's time I was diagnosed properly.
Thankyou so much for sharing this.
I'm on the Asperger spectrum... I contribute to my lack of sleep in the evening to me just being a complete night owl. I feel far less pressure of people always needing me at night as compared to the day so I feel more free to focus on myself and my me time at night... I typically get about 4 to 5 hours of sleep starting in the early morning hours :P
assburgers does not exist.
Whellp ive NEVER felt so seen in my life. This video hit every single mark for me.
I'm totally burnt out after work all day and looking confident and being an adult with a lot of responsibility. The weekend allows me to be me again and build up some mental energy again to not look like an idiot or strange in work.
Thank you, this video helps so much
For those of us who are living at home and find that youve to mask at home
Consider trying to find a safe spot outside your home or inside your home (this is op) and have that be yr safe place when u just need to decompress
I have extreme sensory issues. I didn’t even understand what was happening to me until recently. I always feel it’s too loud, too bright, smells weird, my clothing feels wrong, my actual limbs feel wrong, other people feel wrong.
I need a lot of time alone after social stuff. I sometimes am in the middle of things and decided I need to leave, regardless of how everyone else feels. And I do leave, because I’m done pretending for the day. I call myself a pretender, but what that is, is masking. and I have done it for years and I just didn’t have a name for it.
One thing about me, I spent several years homeless in my past while still always having these issues. That was a nightmare that I am traumatized from forever. There’s no escape from people, public, noise, no privacy and no understanding out there. So now I stay home a lot, because I have one.
Hi there. Your comment really resonates with me, because that is my current situation. But with three children. 😢 I get no time alone, and I have been sharing one room with my family of four other people for months now. I have no space to just exist and be myself. And it's taking a serious toll on me. I would be honored if you would please consider reading my family's story and supporting our campaign. 🫂
My skin especially feels wrong, also my organs feel wrong
10:35 also for everyone autistic who thinks they are imposing, remember how much patient YOU have to be with neurotypical people, you probably put up with more things unconfortable to you than they do. you are constantly being patient with unreasonable demands from them they dont even think about, given how everything is designed and runs.
I thankfully live in a country that recognises I’m too disabled to work and gives me a modestly generous income, and I’m still constantly exhausted just from the day to day of taking care of myself.
Thank you for covering this complex topic in depth!
I have fibromyalgia and a severe form of myalgic encephalomyelitis/chronic fatigue syndrome. To qualify for an ME/CFS diagnosis, you need severe, unexplainable fatigue that prevents your normal daily activities, unrefreshing sleep (you wake up with a hangover every morning), Post Exertional Malaise (any exertion, including mental, makes you much, much worse), as well as orthostatic intolerance and cognitive impairment. Because ME/CFS affects the same parts of the brain as ASD, it's like a double whammy. I have severe sound and light sensitivities and live alone in a dark, quiet room. I can't even hang out with my husband. Trying to manage autism like this is really hard. ❤ I'm also incredibly lonely, because TH-cam is the only place I can connect with people.
If you feel like sharing: do you turn the sound off on TH-cam and just read the subtitles? I do that a lot because the sound gets tiring. Especially with certain people.
@@Aelffwynn yes, I do! I love the captions! I can't really listen to music anymore (and I was a musician), so I turn off the sound when people have background music. ❤️
@@CricketGirrldang. I'm sorry to hear of your many struggles!
@@joan.nao1246 thank you! ❤️
Hallo CricketGirl: Your comment has sparked a revelation in me. I've had ME for about 40 years, now much milder, and realised 4 months ago that I was on the autism spectrum also. "ME/CFS affects the same parts of the brain as ASD" I can't even begin to sort out what's what, but feel massively better
knowing that they overlap. Thank you so much for your comment. Hope you improve and can return to a much better quality of life. All the best.
I never have been so deeply seen as I was in this video. My first video of yours btw. I'm currently on sick leave (the fifth week now), and I really don't know what to do about my deep exhaustion. I admire my alone time at home. But to be honest, the amount of isolation I practice in the moment in order to recover, is barely different to my isolation on normal days. I'm so isolated, that I even can't really isolate more in order to have some recovering benefits 😂 Yeah, that's that. Thanks for your video. I appreciate your humor and your self-irony 😅 Greetings from Germany
I used to constantly mask all the time, at work, with friends, with family, with strangers, and it's amazing how much more energy I have since I've made it an active point to not mask, the part that surprises me is how many people I've found are actually accepting of me and what I would consider to be idiosyncrasies. A big part of it was self acceptance and accepting that I deserved to be loved and respected for being me. That I and the people who don't accept me, well, we're both better off not being around each other more than we have to be. I feel like I'm truly being myself for the first time in a long time.
I have severe ADHD, not sure if I'm on the spectrum even though I definitely have behaviors indicative of it, but that may also affect my experience with masking vs the experience of someone who is on the autism spectrum
I have had a similar experience in trying to unmask and just allow myself to be neurodivergent in public, and most neurotypical people seem to either not care, or make little jokes but not in a mean way just like they notice you’re different and trying to make sense of it for themselves. I feel like universally many people are willing to accept others for being different and appreciate when they have confidence to be their authentic selves. Because I don’t think anyone is truly 100% normal and at times everyone feels they have to mask and when you give yourself permission to unmask you are also giving others that same permission and it just creates good vibes.
Chris, I love your videos. Your presentation is so fun and informative and I enjoy your little detours during them because my brain is riding thatbtrain with you.
I am late diagnosed (64!) But now that I know, so many of my life experiences make sense.
Thank you for making these videos with humor and compassion. ❤
Having to say to colleagues: i do not have the mental space today, for Human comunication, so i’ll do this and you guys figure the rest out.
Thank you for providing a 'script' for what to say when "I'm feeling worn out. I need some time to myself." I practiced saying it a few times. 😊
I have an intellectual disability and even I can be annoyed by neurotypicals at times. It’s annoying enough when they don’t see the world as we do- I for instance believe that most people are good at heart and that Uber and Lyft drivers don’t just do the job for the money, they simply enjoy human interaction. I may not have all of my executive functioning but usually I can tell a good person from a bad one. Thanks for posting your video.
Yes to all this, right down to the pillows. Husband and I are both on the spectrum and take our own everywhere. I am late diagnosed, by the way. I spotted autism in me through my kids' diagnoses. Also, over the years, EDS, CPTSD, IBS, eczema, sensory issues, indoor/outdoor allergies like crazy, lactose intolerance, and pondering recently whether there is ADHD in there, too, as I am a full bowl of alphabet soup, anyway, so what's one more thing, really ?
( Actually, it is just that hearing AUDHD stories lately are really ringing true to my experiences. Not sure it warrants more thought but I know me. My researcher's brain cannot be halted. 🙄) With all that, major depression and CPTSD are the only two most therapists threw at me over the years( *Sarcasm attempt* Gee. Why might I be depressed, I wonder? 🙄). Perhaps my theater roots made my mask too effective, perhaps these "doctors" were honestly just the cut-rate, shovel-the patients-in-and-out types a poor working gal could afford, so they were not highly invested in actually helping, leaving me still drowning and doing all the identifying as per usual while still taking care of my kids, my job, and my life. Auggh! So...umm...yeah...all that info dump to say I totally relate. Exhausted is an understatement. Oh, also, 46, so... time to add perimenopause to the mix now. Sigh. Everything in life is at full volume right now. Everything. Looking to supplements to crank it back down a notch. Other than that, each day is carefully parceled out-so much and no more. Each day with its limited list and much grace built in. It was not always that way, but, blessedly, my life has become more and more interior by design. My husband has heroically been able to take the primary financial reins in the last decade as my myriads of issues have made themselves more prominently known, so I know I have more ability to carve out my quiet space than some. I have yet to fully achieve a lack of guilt for my many "no's" to people, especially in my nosy, less-than-understanding little town, but learning my well-being is more important and leads to better giving of myself where I can. Anyway, that's my two cents. Well, more like a whole chunk of change. Thanks again and please do forgive the long-winded writer in me. She is hard to rein in at times. 🙂
Wow! The Trigger Tracker is a fab idea ❤