"you're smart! I bet if you think real hard with that big shiny brain, you'll realise you CAN walk/see/whatever" No, being smart is what he's showing right now, by knowing this was likely to be too much (pattern recognition), identifying the contributory elements, and by identifying the solution required to navigate this. Like a wheelchair user... using their wheelchair. Like a blind person using their guide dog. People need people, and having an unusual need in a complex and highly emotional undertaking is, actually, not very unusual at all.
I made a meme image about that very thing recently. A scrawny kid is trying to lift a heavy barbell. He can't do it. And there's a coach next to him saying, "This is clearly a SKILLS problem! You can't lift it because you just DON'T KNOW HOW! Let's identify three ADAPTIVE WEIGHT LIFTING STRATEGIES!" Because that is exactly how people look at it! It's always about KNOWING HOW to them! They completely fail to grasp the concept. They think we can just intelligence our emotions away. And we can't.
Thank you so much for sharing this, I cannot tell you how deeply I identify with what you said. It drives me crazy when I pull up the courage to tell people I'm struggling with something and desperately need help and they give me advise on how to better manage things, because "you're a very intelligent and capable person and you've got this!" A) I know I'm intelligent and capable, I didn't say I wasn't. B) Next time actually listen to what I'm saying; I didn't ask for advise on accomplishing my to-dos, I'm in need of serious, in person, hands on help. C) Please take me seriously. It took a lot for me to put aside my internal ableism and shame telling me I "should" be able to do this and ask for your help. It is traumatizing to have you invalidate and dismiss me.
It's like the person you're talking to is completely missing the point! You've already done the work of identifying and communicating your needs, you are not asking for someone to tell you that you do not in fact have those needs, you are asking for your needs to be met.
This is so true. I get this as well as a caregiver too. When you tell the medical team that your not able to handle one more thing for someone else, they immediately try to convince you otherwise instead of figuring out another way. I've only had one team that listened. I was so grateful for them. Not only did they listen, they figured out ways to help. They also took on the mantle of 'bad guy' with my father and convinced him it was their regulations why things had to be a certain way.
This. I hate crowds of people. I can theoretically go to concerts alone. I did it once and I did not enjoy it. I was hyperfocused on my surroundings. Everytime I go with someone else to a concert or event it's much easier for me to focus on what actually matters - even when my support person is leaving me alone for a bit or under the right circumstances for the whole concert. I enjoy having someone else next to me that can speak up for me and my needs and be a physical barrier between strangers and me. It takes a lot of stress out of the situation for me. I hate it with a passion when someone asks me "But can't you go alone there?". It almost makes me not wanting to go there at all and then just cry at home on the day of the event because I would have loved to go there but someone just had to ruin it for me and take the whole fun and enjoyment out of it. Neurotypical people have such a hard time to understand why I can't go to big events or go on trips (especially abroad) without a support person. Additionally I'm really bad at recognising my surroundings and finding the right way. I can even walk in the wrong direction and get lost with Google Maps open on my phone. People always expect me to have low support needs because I'm so bright and appear to be verbal (I'm mostly quiet and nonverbal if I don't have to engage in conversations with people and I can go days without saying a single word). It's hard to impossible for neurotypical people to understand and see that I have medium to high support needs when it comes to dealing with other people and getting things done. It's frustrating and exhausting. I'm serious, I don't like "normal" people. They always get on my nerves quite quickly...
Even kind people who haven't themselves experienced ptsd/cptsd often react, in all kindness, to what they perceive as anxiety, not understanding how the conditions differ. I used to love to drive. I used to spend every waking moment out at coffee shops, working on my art and my writing. Now, I rarely leave the house, and the prospect of doing so is terrifying. Give yourself permission to feel what you feel. It's valid. YOU are valid. And you are not alone.
@@Absoleithe way i interpreted them was, some people treat people with certain conditions that can have extreme terror to certain situations, the same way they do to those who don’t have the conditions, but just anxiety about x. They try to be encouraging, when… simple encouragement without accommodation is not going to cut it. They think they’re being helpful, they’re doing this out of kindness, but it’s out of a lack of knowledge. Like telling a person with depression to go outside or chat with some friends to cheer up or whatnot, when it’s so much more than just plain regular being sad
I go through that. I'm still, going through that it never goes away. I don't know why I get so easily stressed out and why I seem unable to be able to escape my interlock. I have the ability to drive. I have a driver's license. I've had one for years and I still don't like driving. I still can barely drive but I'm able to drive. I do know that when I was in high school I was almost hit as a pedestrian and that does affect my thinking however I think I've always struggled with anxieties.
Exactly! My father has a phobia of syringes, he needs special treatment everytime it's required to have his blood taken, for example. He is able bodied, smart and in good shape, but that has nothing to do with this.
i have a caseworker who visits me weekly and takes me to medical appointments. i qualified when i was homeless and they still let me recieve services from her. i never would have got myself into housing again without their help. but i haven't lost any autonomy
I think there are people who equate self autonomy with independence, and I did too until relatively recently. Now, my interpretation is, autonomy is being able to have a say in what goes on in your life. You want/need a support person? Go for it. You need complete isolation from people for some time? Well, as long as it’s not due to self hatred, and if the isolation will help you get to a better headspace, then go for that
honey there is nothing ridiculous about it. Nothing. Nothing!! Anyone with a shred of kindness and empathy would go with you in a heartbeat. We all have our own difficulties. We’re a community. If you were going to Baltimore, I’d reach out. There’s nothing wrong with needing or asking for help, support, compassion. Your bravery to confront these issues and talk about them is remarkable. Sending you much love. 💕 Adding… that was my reaction before context as well. Context only made it more affectionate.
Exactly this ^. It's not silly, it's not horrible, it's what you *need*. And there's nothing wrong with that. If I didn't have my SO and supportive family, I would struggle greatly with this, as well. And I would be more than happy to help anyone out in this way and I would sit there in the car with them as their emotional support human feeling good about helping out another human being feel good (or better, anyway). Thank you for talking about this and good luck on your trip!
This echoes a lot of what I feel about myself regarding sensory sensitivities. I wear blue-light blocking glasses at night while driving, because headlights hurt my eyes. I wear earplugs often, because loud music hurts my ears. It took a long time to not want to test if I actually do need them, if I really could just go without, or if I should wear them or not. Same with body doubling. Same with food stuff. "Disgusted with myself" is sometimes what I feel. Basically, I relate. Thank you for sharing!
This is a completely reasonable thing to need. Everybody wants to be met by someone they know at the airport, particularly if they havent navigated that airport recently. Taking an uber can be frightening even for people who havent been carjacked. It's very vulnerable. Theres a lot of reasons why i generally prefer public transit when possible, and this is one of them.
This was reassuring to read, I've never had a particularly bad experience like car jacking but taxi services really scare me, so I choose public transit even if it's slower and worse for sensory issues. Something about being in control of where I'm going and just being one in a large group, without focus on me specifically, actually helps.
i'm currently in a autistic burnout due to overstimulation in a classroom. First, i thought it was silly, and thought i could just brush it off. However the days passed, and i still have a real hard time even leaving my room. And, when i got a message from a group member of college, just asking if i would come by, i broke down: Massive anxious response, i coudnt move, breathing very heavily, my view got dazed, and i just didn't get why. Turns out, it's sort of a ptsd responde, because since i was a kid i always hated noisy enclosured spaces. But classrooms most definetly were that, and since i was a kid, i always "slept" in classes whitout realizing it. I was probably fainting actually, which is more supported by: A) how much i was nervous in classes in college since i was staying awake at those due to me loving psychology B) I skipped Almost all classes every semester, just to the brink of failing at school every single time. Lack of interoception sure sucks sometimes huh. So yeah, i definetly get you, and this video made me feel less weird about myself, so thank you a lot for it :)
Like you, I have a graduate degree. And I went undiagnosed until I paid $7k during the pandemic after my therapist suggested a few things that I just was not picking up on. And then she asked, "Has anyone asked you if you're autistic? Because I've dropped hints for 6 months based on what you talk about with your clients and how you might empathize and you don't ever seem to be able to *quite* get there." Having a professional be like, "You know how you work with this specialized population that tends to draw itself together because they can understand each other and you always have a story about how you remember being that milestone and how you're trying to help them work through it" was weirdly sobering. And I didn't know what burnout was until I realized how pre-tired I was about the *potential* of getting back into it. Not the paperwork, not the driving, not the court but having to work with the kids and their parents and professionals about the kids' specific needs immediately felt so pre-exhausting I started working retail to pay bills instead. There's another TH-camr named Orion who did a video of autistic burnout being different than PTSD and that just hit all kinds of home and made so much sense. My therapist unfortunately passed during April 2021 from the virus after my 2nd bout had partially destroyed my lung function and kicked off my lymphedema. Finding a new therapist in a time when everyone was realizing they had mental health struggles has been impossible. I've also been called "too high needs" by the ones I didn't list everything on because they either can't or won't listen to the types of problems in my personal life, and/or they're uncomfortable "treating" autism (as if I was there for a cure). Now, I have to focus on how I like the mindlessness of knowing every day and every shift is roughly the same kind of necessarily restart of chaos with your occasional Karen thrown in. I also like knowing there are boundaries to my hours and constraints to control. I literally do not know when or if I will be able to work through my burnout with my old profession because I do miss it. It was mostly a regulated day and week schedule with flavoring of emergencies. But what killed me was that the expected day-by-day chaos was fighting a losing battle unnecessarily for the good reasons that do matter for them to fall on deaf ears in broken systems based on flawed people and a listless populace that's been so degraded that minimal safety standards are being able to call the paramedics to send the kids back. And I don't think I realized how bad it was until I went to see Wish. And I cried at the opening credits. Thank God it was the middle of the day and no one was there. I've cried three times at the theater: the opening of Lord of the Rings: Return of the King; the moment the ending of Logan was clear; and the opening credits of Wish. The first two were ends of eras I'd dedicated at least a decade of my life on (more for Logan when you count I was an 80s kid raised on comics and cartoons). Hearing, "A dream is a wish your heart makes" in the pre-movie commercial then seeing that opening felt like, "My dreams can't happen without someone getting hurt, and I'm not well enough to be the person to help stop it anymore--emotionally or physically." Which has just deepened that gap that I have to overcome to even just get *started* in the field. . When people say, "Just X," it cuts like an absolute knife and makes it so much worse. If I *could* do X, we wouldn't be in this conversation. But dedicating 100 hours a week to driving, fighting, and arguing through something that is treated like retail but has much higher and more dire implications just...destroys me. And adding to that the masking and bravado while shoehorned into a carer position to appear normal *enough* to everyone else is a whole other depth of exhaustion I don't know how to explain. Just know you're seen. Just know you matter. Just know you did the best you could and did the most change you had the tools to do. And always know that no one has the right or privilege to ask more of that from you. 🫂
This right here. I can't skip classes and you can't leave the school unless your parents ask for permission to come pick you up for whatever medical reason. My classroom is hell, everyone is yelling and talking, throwing random items at eachother, hell, sometimes they will play football and volleyball _inside_ the classroom with the teachers right next to them. There's 45 students in every class, including mine, there's more than a hundred students in the whole school and a kindergarden area and yet the building is small as shit. Also, when i was 7 i was wearing bunny ears in recess and a group of older kids _(way older than me)_ started hitting me with footballs and basketballs simply because i was wearing bunny ears, they showed up again a week later to make fun of me even further and dipped. This was a huge problem last year, every single time they played football i would get hit right in the face with the ball and i would inmediately break down because it reminded me of that lovely childhood memory and this group of guys in my class make fun of me because of my oddly-specific phobia (the same guys who play football inside the classroom). I still get good grades and i try my best but at some point i would wake up crying every morning or get sick on purpose because i didn't want to go to school, just thinking i'd be stuck in that sensory hell for the whole day terrified me. It still does.
@@OGimouse1read this- I cannot relate directly for the most part but sympathize so much. Life is a journey and we’re all finding our way-it’s just frustrating when the world (a lot of times unknowingly) punishes us for who we are. to you, OP of this comment, to Jeremy, and everyone making it through this world with a disability, visible invisible or both-you are valid, and you are loved. Loved even if it’s just by the people on this video- know that someone who loves you is always in your future if it feels like nobody loves you now. You’ve got this. Much love ❤🫂
You are completely valid. I absolutely understand this. Any doctor’s visit I go to, I can’t go unless I have a support person, in person. I’ve struggled with that a lot, but I’m trying to get to that point where I can accept it. We’re all on this journey together. I hope while you’re on your trip, you find that it is simpler than you expected.
Well, what I'm hearing is someone who not only knows what they need, but is also brave enough to say so AND stick to it even when others, including other aspects of themselves, don't get it. That is HUGE!
there is so much to unpack with that...we want to think we are as capable as everyone else, we want to believe that we can do whatever we need and want to do, because we are adults and we might to be able to just function normally? and we are expected all the time to try more and harder all the time? that we shouldn't be a "burden" on others if we can avoid it?...but then things that we think that "shouldn't be a big deal" often even simple things, then suddenly ARE a big deal...but because of how we have been learning from others that it SHOULD NOT be a big deal, we think we somehow don't have the right to ask for help...or that we should feel bad about needing help for something like that. We know ourselves though...we know what we NEED...we know what we can handle, we especially know what the consequences for us are if we try to push through anyway! Whenever someone tells us, that it shouldn't be an issue, they just don't know/can't imagine or don't believe our consequences. And I'm not meaning that those people are not empathic, they simply can't imagine themselves into a situation that unfamiliar to them, but that's why it's even more important for us to learn that we not only have every right to ask for help, but also we have the knowledge of why and we are not obligated to explain it to everyone else, especially those who are so willingly denying us that help. Ableism is so deeply ingrained and it sucks....
Thank you so much for this! I'm just now learning about what this is and how ableism (societal and internalized) has affected my health and success in life. It's been 40 yrs of agony and it's so meaningful and helpful to know I'm not alone.
I wish I lived in NYC and could do that for you. I would, without blinking an eye, no questions asked, just for the sheer satisfaction of helping someone that needs to be helped. Personally, for me that's one of the biggest joys ever! Plus, it actually helps me whenever I feel down - works every time! Hope you managed to get sorted - I firmly believe in the goodwill of people everywhere :)
You've articulated a lot of my difficulties. Thank you for putting yourself out there. We here want to help in whatever ways we can- even if in reality, we can't. Know you've got a large horde of well meaning strangers rooting for this trip to go really well for you
I have never successfully gotten through two TSA rounds without my Mom present(we've tried, I melted down halfway through). I stand in awe that you can manage that at all, and the idea that anyone would question that you need an aide after that sort of harrowing is at least a little bit of a dick or ignorant.
After living the vast majority of my life not being able to relate to the experiences of the average person around me, it blows my mind to now hear experiences that actually match mine so closely. I don’t know how to put my own experiences into words, so hearing you do so was very impactful. Thank you so much for being vulnerable. This was like looking in a mirror, so I’m trying to take your words of validation to heart.
Thank you for posting this. I can’t imagine travelling without a support person (ignoring the fact that I am currently bedbound). But like, mentally, sensorily, emotionally… factoring in covid, the fact that I am usually nonspeaking and Especially so in stressful situations, all the Logistics with sensory safety exhaustion... Like, managing local bus travel independently was Big Spoons pre-pandemic. Never mind air travel. So like, you are very not alone in this specific need, if that helps ease the feelings of unreasonableness that can come from feeling like one’s needs are Exceptional to oneself. And also is helpful to me, to hear about other disabled folks navigating internalised ableism, as I navigate my own (currently around using AAC and only starting to use it as an adult, needing to decline inaccessible medical “care” and how that is often perceived as noncompliance, and around only having capacity to schedule 1 appointment a month in spite of the fact that I have about 30 or 40 necessary appointments). So thank you. I hope that you can find a good support person, that your travels go as smoothly as they can, and that you can keep being kinder to yourself about access needs, even when the internalised ableism brain worms keep worming.
Thank you for being vulnerable. Completely understand where you are coming from. I, too, struggle with the self disgust/ self-loathing of internalized ablism. And the "You're smart you can do it" incites rage every time someone says it to me after I've told them I cannot do something or I need help with something. I hope you can be kind to yourself and the trip turns out well.
I really, really appreciate you making this video. It’s clear that you weren’t super comfortable doing so but you did it for us and I want you to know how amazing that is. It always helps to be reminded that other people struggle with these things too, that I’m not broken I just need to do things differently. I hope you wind up with all of the support you need and deserve during your trip ❤. Also, I am honestly amazed by people who can just get into a stranger’s car, (by themselves especially!) and just go wherever they need to. It’s wild to me, I generally don’t go places unless I can drive there, not having an independent way to get the hell out if I need to scares me to no end.
The self-loathing part I understand completely. A few weeks ago I almost broke down at the train station looking at all the people around me thinking "It's so easy for them, why isn't it just easy for me? It should just be easy."
"Why can't I do this? Why can't I handle this?" Why does a blanket expectation need to fit everyone? This made me emotional to watch because I've had those same thoughts.
Thank you for sharing. Im sorry your going through this. I used to travel, but haven't in years. The idea is so overwhelming now. My aunt who lives in another state would like me to fly to go visit her. She got re married a few months ago and I couldn't make it to her wedding, she hasn't talked to me since then.. the reason I didn't go is the overwhelm of traveling, then staying somewhere that will wreck my sensory system, on top of that I have complex health needs. The other huge reason is that I have a number of animals that I can't leave unattended for days at a time and don't have anyone to stay at my house who can watch and handle their daily needs.
To be honest your aunt doesn't sound very nice. Also I would totally watch your animals for you if I knew you personally! I bet a lot of people would. You have a right to set boundaries too and it isn't your fault travel is overwhelming, I think it's overwhelming even to neurotypical people.
Oh man, I get this at such a fundamental level. The overstimulation of air travel is awful; there are so many variables you can't plan for (delays, etc); and there's so much navigating required just to get from the plane to the car and then the car to the building you're going to! Airports in particular can be so confusing. I wish people understood that it's not about being "smart enough" to handle the process. I know I'm smart - if you gave someone an earpiece and let me sit at my PC, I could organise everything for them and talk them through the entire journey from start to finish! The problem is that the resources I have for coping with stressful situations are insufficient for actually being _in_ situations that cause that amount of stress! Having somebody on a trip with me automatically lowers my stress levels, because even if they do literally nothing the entire time, it's the fact that I know they _could_ take over if I needed them to that makes things less stressful. When I'm on my own, I have to put a LOT more energy into staying focused; making sure I'm doing everything I need to and am at the right places at the right times; fighting through the overwhelming sensory input, etc - because I know I have no backup. I know that I can't afford to screw up or let myself melt down, especially in an unfamiliar place. (Both of which are impossible to control through sheer force of will, of course!) So I don't blame you one bit for wanting someone to meet you at the airport and travel that last leg of the journey with you - especially considering your past experiences, jeez. It sucks how much trauma exacerbates the issues we already have - and in particular, people's reactions to our trauma 😣 I have a lot of anxiety about getting lost when I'm on my own, because I have such poor direction sense. When I was a kid, I was once on a school excursion and somehow got separated from everyone else and ended up thoroughly lost. I totally panicked - I was in a completely unfamiliar place, I couldn't find anyone I knew, and I was convinced that the bus was going to leave without me. When another kid finally found me they made fun of me for crying, and the teachers yelled at me for wandering off. So that sure didn't help my anxiety with regards to getting lost, lol. Man, it's so hard to be sympathetic towards ourselves. I can watch your video and think that you absolutely deserve all the support you need, and that you have plenty of valid reasons to need it! But it's hard to make myself believe that I do - I feel like if I _just tried harder_ I could do everything I need to do! Stupid ableism, lol. Be kind to yourself - your needs are valid; and you deserve all the support you require to make your journey safe, both physically and emotionally. (And I know that's the whole reason you posted the vid, to tell other people that - just wanted to reflect it back at you in actual words 😊)
The “I just need to try harder” is something I’ve told myself for many years, even before I was cognizant of my neurodivergence. Intelligence, unfortunately, does not solve executive dysfunction, nor sensory overwhelm, or a myriad of other things. I know in theory how to do things, but I don’t have the right tools to do those things. If sheer willpower will rid of my struggles, then I would not be struggling. And then there begs the question, why should we have to try so much harder than able-bodied folks, to do the same thing without the accommodations we need? Or even to just do a fraction of what they could do. Like with autism in particular, people get sensory overwhelm because our batteries are being quickly drained away by everything around us. Even if we’re not aware that that’s happening. So having to try harder is only going to deplete even more of our limited energy (everyone has a limit, but if you lose battery much more easily, the last thing you need is to have more stuff you need to attend to I still struggle with the shame. I feel like I should be able to do what others can easily do - I used to be able to do the same - actually, that’s a lie. I did not have as much on my plate, and i was also dissociating very much, so it felt like it was “easier” back then when in reality i was pushing myself every day. I never envisioned myself to be at the place I am at now, struggling so much on my own as an adult. I tell people I need a support person but ofc that’s not accessible for me because 1) money, and 2) money. The one person I do feel comfortable asking, is out of state, and she is also a busy person, so I cannot rely on her too much, or much at all really. And because they know that a support person is not feasible for my situation, it’s all a bunch of suggestions that I need to act upon when I am struggling to do what I already have on my plate.
I relate to everything you said. Idk if that makes it any better but...yeah, I relate a lot. I get lost so easily and being made fun of for it doesn't make it any easier to get better at navigating honestly.
Thank you so much for sharing this!! I never doubted your autism or that it disabled you, but actually seeing this video, where I see autistic overwhelm in your body and speech that looks like my own, where you talk about hating that you can't do a "simple" thing, is so validating. Seeing that you're so capable at communicating things through scripted monologues and skits, knowing that you're employed as a writer but still can't do this makes me feel better about my own struggles. I'm also a hyperlexical, high-masking autistic but I can't do "easy" things like make myself ANY meal that involves cooking. It's hard not to fall into the mental trap of thinking "I should be able to do this because I can do these other things so well."
Thank you. Hold the line with needing a support person -- I have been to workshops with a support person when I have been unable to figure out or articulate exactly why I need a support person, and it's been really useful. I've just given some general instructions like "keep checking in with me occasionally, and keep an eye out, and if I seem withdrawn help me figure out what it makes sense to do". And yes, it does feel like a failure that I need that, but I know in my head it isn't!
For me this kind of thing tends to be a product of burnout. Sure, the fact that I can't do things I'm used to being able to do is disabling, but the fear and frustration and embarrassment surrounding that realization can very easily cause me to spiral, and is if anything more acutely disabling. And, as I've made progress in understanding my disabilities and their accompanying internalized ableism, I've found I'm less likely to spiral. I hadn't ever thought to frame my understanding of this process in this way, but it's useful and will likely save me some headaches trying to explain my situation in the future.
Just a note about Uber, in case you decide to try it under less stressful circumstances: last time I took Uber, an option popped up asking if I prefer quiet or if I am happy to chat. I prefer quiet. The driver did say hello and check my first name and that was it. Although, I don’t know if this was something that pops up for the driver, or if he wasn’t going to chat anyway.
I'm sure a lot of people will appreciate your courage to be vulnerable! I was surprised when you said the need to explain why is ableism. I really want to understand why I do things and need things, whether or not anybody else is asking. I'm a puzzle, and I'm driven to solve it. I think understanding why I can't do something and what factors affect my functionality helps me cope and find solutions. In this situation, it seems like understanding why might be part of your healing process? I hope you find the support that works best for you where you are right now. And even if it were possible to take an Uber independently, when you have a problem it's your choice how to solve the problem.
Subscribed immediately. I don’t think I have ever heard anyone articulate my brain like this, and hearing my experiences of shame, embarrassment, coming from another person is extremely validating. Thank you for being willing to open yourself to this level of vulnerability.✌️💖
I have never felt so validated in my life. Your reality is so much like mine and I'm so sorry it's like this. Your reality isn't horrible, your requests and needs aren't ridiculous, and I get that strange intense pressure to be able to do this "completely normal easy thing". I had to resort to thoroughly training a service dog to get through daily life inside and outside the house; I can't do "simple" things yet I was able to put in 40+ hours a week for two straight years to socialize and train and public-access-train a service dog the equal of any nonprofit. The things I can do I can do incredibly well. It's such a painful moment to hit that concrete wall others don't seem to have. "Why can't you scale that wall when you can scale this wall with ease?" say those not in our skin. I hope that once you sort out the accommodation you need in this particular instance that it becomes easier to tackle in the future. But even if it doesn't that's no failure of yours; there's nothing wrong with you just because others are clueless about what they're blind to.
This is so helpful. Thank you for sharing. I'm dealing with something completely different at work, but same problem. I need to ask for support for something at work and I'm ashamed that I have to ask, judging myself because I can't explain why logically, and dreading the positive or negative pushback I may get. It feels good to know I'm not the only one, because it sure feels like it.
An interesting parallel I thought of while watching this is “how would any other animal react to being tasked with executing this entire situation on its own?”. And the answer to that is probably along the lines of “not well”. Humans are still animals and while we do have a few thousand years of very social/overstimulating exposure to guide our patterns, evolutionarily that is not a lot of time or pressure to adapt to a new environment. If you are stressing about a complex/social/traumatic situation, good! You have every right to be. The brain wasn’t designed to do all the things we expect it to, it just happens to be able to do most of them. We’ve built a society on what makes money and still gets people from point A to B, not what’s comfortable. It’s not any one person’s fault the world and the human were made this way, but it can be incredibly frustrating to do your best despite it.
Finally beginning to work again after a burnout and mental health crisis and i am beyond drained after just a 4 hour shift. It makes me feel really pathetic even though i know theres reasons i feel this way. Its retail so the sensory environment isnt great, it's pretty boring so my ADHD isnt happy, and just having to constantly be "on" and on the watch for customers takes a lot out of me.
This is the first video of yours I have come across, so it took me a while to catch on to the situation, but from the very beginning you struck me as someone who is thoughtful and reflective and not likely to ask for something they don't actually need. I hope you find someone reliable and pleasant to help you and that your bravery in taking this trip will be rewarded.
I think you just being able to talk about this and to search for some one to help you is evidence you are growing and learning how to work around your brain and with your brain. So WOOT for that!! Gotta celebrate even the tiniest of victories. I hope your trip goes super well and I hope you’re able to work out getting all the help you need.
I struggle with this so often, Im still going through the very difficult process of accepting my reality and newfound limitations...its hard. I figured out that ive been struggling with adhd and possibly autism a couple years ago at 25. Which means up to that point i was "just push through it" like everyone told me and thought everyone just secretly struggled that bad. I was trying to convince myself, at the pressure of everyone around me, that i was able-bodied. Additionally Ive developed Costochondritis as a result of other things, so that has greatly limited my physical limits as well. I cant help but feel so weak now, and frankly hate myself for not being able to do what I used to. Going from "i can" to "i cant". Its been a huge learning curve, and a difficult one at that. So yeah...the internalized ableism is strong with this one. "This one" being me. It sucks.
I understand what you experience. I get a lot of anxiety too from the FACT that I go less hours to school and that I can take more days off of school during a trip that my school offers to our class. But the thing is, all that interaction and constant symptomatic experience is what makes me not able to go to school like everyone else. Even when I think 'oh I don't know if I can handle going to that city soo far away, but why?' I don't know, like you said. I don't know which hallucinations I'm going to get or which symptoms I'll get. It's just, the fact that there IS going to be something and I know for sure.
I relate so much to your experience, I got my diagnosis last year and I have just realised how much I was pushed to do things that was way beyond what I had the capacity for. I haven't been relaxed since I was a small child, and now I have been in burnout for almost two years. I'm trying not to be hard on myself for focusing on my own needs, but it's hard when people still tell me that I don't look sick or otherwise tries to push me. You like every other person deserves to have your needs met❤ Ps! I love your videos. My mind is a clutter of anxiety, rage, loneliness from never feeling understood and existential dread. Somehow you manage to put those feelings into words, and I admire you for it.
Hi - I feel this all in my soul and almost started to cry watching it. I also have CPTSD, and I travel a lot through Africa for work. Out there, we can hire expeditor services which are basically people who handle all of the travel pieces for you and help get you through the airport. NYC is tough, but you've NEVER seen a domestic African airport... omg, it's utter madness! So the expeditors will basically meet you at the airport, handle customs, bag check and security, and where they can't, they'll tell you what you need to do, and wait for you until you've done that part, and walk you to the next part. They manage the chaos for you and just point you to the next thing, tell you what to do (or where to wait while they do it for you) so you don't have to think too hard. It sounds like you need something like that. I don't know if there are those types of services for domestic travel, but that's what I would look into. Maybe talk to a travel agency (they still exist!) and see if they know any companies that can help. Good luck! I know this is scary! I'm about to go to Japan and I'm afraid of some of the same things, and don't have anyone to help me navigate. It's a huge mental load. You're handling it better than you think, give yourself grace. Edit: This service looks pretty similar to the expeditors I'd get in Africa: usvipservices.com/?+service+new+york&gad_source=1&gclid=CjwKCAjw5ImwBhBtEiwAFHDZx0O6gUyVaBWBd5WzSIgXX5BSe_Nl0dF_Xk061HCLslYQIQ4KtnrxDBoCZcQQAvD_BwE
As someone who has needed that and not received it and then learned to go without it, you need that person. That's valid as f***"**"$$#ck. You do not have to push yourself through. The damage that we do by constantly shoving ourselves through and "learning" to mask or control our meltdowns until we're safe, etc. It's awful. You deserve support. That is so valid. SO many of us experience this. I'm so angry for you that this isn't more easily available and I so hope you'll find someone who can support you this way. 💜
I am sorry you are going through all of this. A couple of things that may be helpful with some stuff: I bought noise cancelling headphones for the plane and they make a huge difference. I never realized how loud the plane/airport are and the stress that the noise adds to my experience. Regarding the do I have to talk with the Uber driver issue. I think in Uber and Lyft, you can select a non-conversation ride. So, if someone can help you schedule a ride, they can select that option for you. Whenever I have had to take one to the airport, I upgrade to the larger vehicle to make sure there is room for my luggage. A lot of times those vehicles are driven by people who tend to help with luggage and don't chat with you because I feel like they also drive for private car services and so it is closer to that experience. Anyway, I hope these small suggestions can help at least remove some of the things that add to your anxiety. If you can control what you can to make yourself at least a bit more comfortable, hopefully it will make everything else easier to manage. Again, I am sorry you are dealing with this all. Your need for support is understandable and nothing to be ashamed of. I hope you find the support you need. ❤
Thank you for sharing this- it really helps me understand what I am going through in similar situations. Not sure if it helps - the concept of someone meeting you at an airport and taking you through to your destination, and sometimes even going with you from your home to the airport through the entire flight - is very acceptable (for NT people) when travelling abroad to places like India or China. The reasoning is to have a companion with you for the culture shock. And personally, I look at the experience as something very similar- having someone to offer support for a situation that you know will be affecting you. I hope you will be able to find your support person that will make this lag of the journey easier.
Thank you for sharing this vulnerable moment. They're hard to share, but my experience is that opening up about what you're struggling with finding support for is generally for the best. If you're with safe people, anyway. Love your channel. Love your work.
"You're a smart person, you can handle it" sets my blood on fire. I hope your arrangement to have a companion works out~! PS - Idk if it's your speed or not, but service animals for autism are available. Basically they can place themselves as barricade between you and other people, help calm you when you feel overstimulated, and make great weighted blankets. =^_^=
I feel You! I feeeeeel You! I totally feel You! It's horrible to feel like this, I hate it and I am instantly crying. I feel worthless and ashamed if it is me. And I totally understand You and it is completly okay for me that You have this need and ask for help. If I would live in the US I would be happy to support You (funny thing is that I am great with supporting others but mostly not able to do the same things fearless fpr myself on my own...). I want to send You a deep long hug if You want one🤗 And I really hope You find someone to support You in a way that fits.
What an amazing post! I love your assertiveness in asking for what you need and your vulnerability in sharing your reasons why. I wished I lived in New York so I could take the day off and be your support person. Thanks for inspiring others with what you model for us. Good luck from the UK in finding the right person to fulfill this role. Hope you enjoy your trip! 😊
It does not sound ridiculous to me at all! I know if I was in your position and needed the support, it would sound ridiculous to me as well and I would be mad at myself for needing it (and questioning if I really do) but hearing it from you, as an outsider, it makes sense and I don't see it as ridiculous or even strange. Funny how that works, huh.
It doesn't sound ridiculous at all. As someone who's always confused about how to navigate the world - specially when it involves places with so many people, bright lights and loud sounds - having someone to pick you up and help you out lessens the stress a whole lot. I know we often feel ashamed, but in reality there's nothing to be ashamed of.
It’s so inspiring to observe the effort you’ve put into understanding your needs so that you can make choices that are just right for you. I find this a beautiful reminder of the fact that we never know the full story for anyone so it’s best practice to TRUST ourselves to make the right decision for ourselves, and accord others this same respect. And if mistakes are made along the way, so be it!
This is so relatable and I am so grateful for this video. I think of so many times of my life really terrible things have happened to me when I really should have had support. I’m sorry especially for the carjacking, selective mutism, and the stress of reconnecting with family. Wow, do I relate. Thank you for helping me recognize that my experiences like this exist. I get chronic health issues from stress. No wonder.
Thank you for sharing and being vulnerable. The whole idea of needing to know "why" is very familiar. Hoping that you can find the support that you. I'd offer to help if our visits to New York sync up, but I'm thinking that might sound creepy. Your needs are valid. You deserve to get them met. They are not ridiculous. Gaslighters abound and it's difficult to deal with them. Sending good thoughts.
Standing Ovation for working so hard to recognize & work with reality to get what you need. No one gets to tell another person what is easy or not for them. Thank you for your post.
My sense of direction is so bad that I can't take long trips by myself. I can't drive on the highway either. I can't even figure out our public buses. I joke about it, but it really bothers me sometimes. I do have a friend that likes concerts so he'll drive and help me around. We call him my emotional support human. I still hate the fact that I need the help. For a long time I'd just push myself instead of being willing to accept help.
I identify with this hard. I graduated about a year ago with an engineering degree from a top 15 school (it's an absolute miracle I did) and the words "You're smart, you should be able to handle it" send me into the same tailspin you describe literally every time those words are spoken to me. The internalized ableism surrounding this false equivalence of intelligence and emotional resilience* is the main reason im in such intense burnout following college and why even looking at an email draft for a job application sends me into a full tailspin. Merely ACCEPTING that I NEED people to help me with what is supposed to be "easy" for most people has been an absolute nightmare after I've spent my entire life just barely getting by on my own. It's exactly as you said, the denying of a feeling or emotional reaction in favor of explaining it inevitably leads to pushing yourself past your limit. It's this crucial point where having a supportive community is absolutely do or die. Someday I hope to be able to do some of these things on my own. But it's... okay if I can't. As hard as it is to admit that. The internalized ableism is a shield against externalized ableism. Preventing me from being denied the help I need or ridiculed for asking by simply... never reaching out in the first place. And then rationalizing that not reaching out by telling ourselves it should be easy or we deserve to be miserable or whatever nonsense. I'm happy you were able to cut out your deeply unsupportive family and I hope you have found yourself a community of people who treat you with the care and empathy you deserve. *(im not sure if "emotional resilience" is the quite the right term to capture the meaning of "handling it" but that's what I'm going with for now)
I feel this too. You’re not alone. I broke down in Denver international airport, tears and all, because I was so tired, overwhelmed, and alone. I hope you find a support person ❤
Thank you so much for every word and truth that you shared here. ❤ I hope you continue to receive the self-compassion with your needs that you so generously offered to so many people who need to hear this everyday.
As someone who lives with CPTSD I completely understand your emotional reaction just because of what you are about to do after going no contact. Knowing that you were carjacked makes it even more understandable. So why should you expose you to a situation in which you could go non verbal or get dissociated in the middle of an unsafe place? You took the right decission.
OMG, this video hit me hard, much harder than I would ever have expected. I was particularly struck by you saying how feeling the need to explain, even to ourselves, why we are the way we are is internalised ableism. You are so right!
Imagine being responsible for so many people's path towards the cure of so many things, with this video alone. This term is new to me, and I feel the fastest I assimilate it, the better I'll be able to treat the issues. Thank you so much for your services
1st, this is so brave. 💓 2nd, thank you so much for allowing me to feel through this with you. I find so much resonance with shaming myself for needing extra support at times when "I should be able to handle this..." (And also a reminder that my daughter's selective mutism when she's dysregulated isn't something she necessarily has control over.) Something that continues to help me when I struggle with asking for or receiving the support I need is I tell myself that it is literally someone's higher purpose today to BE of service, and if I don't allow myself to receive the help they so lovingly offer, then it hinders both of us. Receiving support is blessing the person who wants to be supportive.
Thank you. I have the same PTSD response when I think about working in the service industry again. I also need my partner or kids to ride the bus with me to do errands most of the time, and regret every time I step over my needs and "just do it" I am glad I found you on YT.
Thank you so much for sharing this! I deeply admire people who are able to be vulnerable with strangers online. It’s a brave and scary thing to do. I’ve been disabled since I was in high school, but I had such deeply internalized ableism, I didn’t even recognize it as a disability until like two years ago when I was 30. I still struggle with negative self talk around my disability. Knowing that I’m not alone and seeing other people being open and transparent about their struggles helps me be more compassionate with myself. So thank you, again, for sharing this experience. You are a beautiful human and absolutely deserve all the support you need and want.
I first started watching this with thoughts of, "oh, I'm sure he could do it. He'll be fine." And then you started talking about not knowing why you couldn't do it and that you're struggling and list all the things that could go wrong and yet sharing an awareness from your past experiences, current state, and motivation to figure this out made me realize that I do that to myself. That's how I was taught, or well treated, to handle things and it doesn't even work me hence the past thre years of diagnosis and working through these things. Despite the past three years of work on that, I defaulted to what is basically, "just do it" as if that helps. Thank you for sharing and for your vulnerability. You're so very awesome for all that you do on TH-cam here and for many more things that are offline. I hope that things worked out for you with this.
Thank you for this. I was diagnosed w/ ASD in late adolescence bc despite my having almost every single symptom, it was thought that I couldn't have ASD bc I behaved in school and got good grades. My mom still has this attitude, that it's somehow fake/played-up/laziness. It's comforting knowing that when asking for help or just talking, other autists also are told "but you're smart", as if it's at all pertinent to the topic.
We've been panicking about transit lately ourselves, feeling awful that our mom has to drive us to all our appointments but not understanding the public transit system but feeling like we have to use it and learn it anyway even though it doesn't make sense to us. It sucks when it's complex like this, when I don't have an explanation. When a building doesn't have a ramp and I roll up to it in my wheelchair, the issue is obvious. How do I explain what about the public transit system is beyond my understanding? How do I justify it? *we use both "I" and "we" because of our plural identity; we are not trying to represent anyone else or use a royal we
Oh my gosh...I felt, cried and nodded all the way through. I can't even begin to count the number of times I've felt like this and tried to explain that to family/friends and even doctors just to be told, come on, you're so smart and resourceful, you can do it just like everyone else. It's heart and mind breaking. I hope you did find someone to support you in person. You need and deserve it too. I'm still at a loss for words but I wanted to say what little I did. Thank you so much for sharing this.❤
As a woman with high anxiety, having a support person you know is safe as a buddy to ride with while traveling alone sounds completely understandable! Especially since you were carjacked in the past and your family gaslit you into thinking it was entirely your fault- which, it was NOT! I am glad you went no contact with your family. I hope it has helped improve your mental health. I understand the feeling of danger while just being in the same city- I am low contact with my parents, who live in the same town as me. I get panic attacks just from seeing the family group chat (because they basically try to guilt trip me into helping them). When I get to a certain stop light, my whole body starts feeling tense, I breathe faster, and I remember the trauma that was living in *that house*, which I am driving towards in order to get to the store. I hope you are able to find someone who feels safe for this part of your travel journey. You DESERVE to feel and be SAFE. Thank you for sharing this with the world.
Years of programming that we and our ways and needs aren't enough, certainly is one huge contributing factor. Yes, all the stimulus, new stuff, the family issues/experiences. Be clear to yourself and others about your needs.
I dont really have much to say about the rest of this video, but i do want to say what im thinking here. You know, i feel like its also valid to look for those logical explanations as well. You say it's internalized ableism, and maybe it is for you, maybe for others as well, and i get that. But for me personally, i have a very logical and analytical way of navigating the world around me. I want to understand everything i can about everything i need to interact with, because understanding it helps me to actually deal with it. Myself included. I want to understand myself as well, whats going on with my body, my mind, everything, because i know that understanding it will help me to deal eith it better. I dont need the explanation to feel valid, but rather, seeking an explanation is part of my coping mechanism. I feel like it's important for people to know that whether you seek an explanation or not, its valid either way. I think, at least.
Yes! It's not necessary to validate the need, but I want to know why just as much as the NT person who might be asking me. I agree that knowing why helps find solutions.
I understand this, I also always am.calmed by "understanding" sth logicslly. But that doesn't mean it is not internalized ableism, too. One doesn't excludes the other, or am I wrong?
@@katzenbekloppt_mf maybe it depends on the reason. Autists thrive on rules and predictability, so I think if we find a reason for the limitation, know what rule the brain is following, that feels predictable and reassuring. Also, things that are illogical cause me anxiety, but doing math or something logical soothes my brain. So if I have to accept this limitation at least I can have some logic associated with it.
Thank you for sharing this. I am trying to learn to “trust myself” about what I need. I went through a mini version this morning after I’d already been inside at a bank, and filled up at the gas station. I went grocery shopping at the closest grocery store (not my normal one) and it was very busy for whatever reason. I could feel myself locking up. Then the internal dialogue- part of me saying just make this a short trip and get out of here. The other part of me saying this is ridiculous, you’re f.I.n.e nobody else in the store is having a hard time and finish your list.
Definitely a window I needed to have opened about those that deal with anxiety and PTSD on this level. I've had trauma, so I feel like I can relate, and I want to because I want to have empathy and understanding for those that struggle with these things on a daily basis.
I am sending you all my love. Thank you for being vulnerable and sharing your incredibly valid thoughts. I haven't experienced exactly what you're going through, but what you said deeply resonated with my own experiences. I had a physical therapist a few years ago who told me "Any accommodation that improves your life even 1% is worth it." And that sentiment has helped me a lot. And although I definitely still deal with my internalized ableism, I am learning that the people who help me genuinely don't mind, that I'm not inconveniencing anyone by going at my own pace, and rather than feeling embarrassed for using my accommodations I should be proud of myself for doing the thing in the first place.
I think sharing this is so courageous and noble. It’s raw and honest and a demonstration of self-validation, an incredibly important skill that isn’t well understood by so many people struggling to just keep going. Thank you, this is very inspiring.
Thank you for sharing. I have Complex PTSD, and know how hard it can be to get help. It's huge that you can recognize the need, vocalize it, and ask for help. I hope you find the care you need to have a safe trip. It really shoildnt be this hard to get support, care, and nurturing.
This is incredibly validating. I went on my first business trip a couple of years ago, and it did not go well. I'm going on a trip again this summer, and I have a strong need to know exactly what's going to happen at every step of the way. It's helpful to know that I'm not just blowing all of this out of proportion and that other smart, capable people also need support with travel.
Holy crap, this is super validating. The number of times I've shared an issue I'm having with someone, and they respond "you're smart, I know you'll work it out," and even knowing that most of it comes from a place of encouragement, it doesn't make me feel any better, usually worse in fact. It took a break down to conclude that smart isn't the issue, because I would've solved it already if that was the case.
Thank you for sharing this. I'm grappling with similar issues right now. Because it's easier for me to have compassion for someone else than for myself, hearing you talk about this has made it a lot easier to see my own situation in a kinder light.
Thank you for sharing your deep feelings. You are valid! You are helping me realize my shame and non-acceptance of myself is because of my difficulties and my own judgement of myself. On top of my family’s judgement (no contact) I hope your trip goes well. Think “what if everything goes well?” I hope you have a kind escort who puts you at ease. Perhaps this person can accompany you to the store or other places. Being alone with anxiety is terrifying! Just having a friend by your side will make things ok. A “body double.” I need a “body double,” just a friend to physically be present, to concentrate to putter around the house. They don’t have to do anything, just be there.
Thank you for explaining it so well! I didn't know it was called (internalized) ableism! I only knew how it felt heraing "why can't you just...?!" right after painfully explaining why I cannot just do a thing. It's dismissive, sometimes even condescending, and it's enraging and disheartening.
This is super helpful. Thank you for boldly putting this out into the world. In particular the gaslighting from the family, it is so familiar. The whole thing. Thank you!
I so feel this. I need logical reasoning for everything. I admire you so much for just getting to an airport and on a plane. I have done that for decades.
Omg the not realizing your trauma was traumatic. I relate so hard. Also, i teared up at the "youre smart, you'll figure it out" comment. Yeah, i KNOW i smart, Linda, but that has nothing to do with this! Thank you for sharing, even tho it was obviously hard. As a recently & late diagnosed adult, it's really validating to hear about how other high masking adults do adulting.
I generally only use ride shares as a last resort, as riding in a car in a densely populated city makes me extremely nervous and interacting with strangers gives me anxiety. Although this might not be helpful in your case, using a train or subway eliminates these stressors for me.
Interesting how different people are. Nothing is more stressful and frighting for me as public transport. I feel more safe in a car. This is why I want to make a drivers licence so badly (didn't yet because of beeing poor, in Germany it costs some thousand Euros)..
thank you so so much for sharing this, i'm learning a lot about my own internalized ableism recently and still have so much to learn but there were a lot of things that just clicked for me while watching this video. my parents in particular have a hard time understanding that my needs are not the same as preferences, and that ignoring my needs is a much much much greater danger to my physical and emotional health than doing the work to adjust my life to meet my needs, even if it's not easy to do that work and make that adjustment. and seeing this video just helped me catch myself internalizing my parents' judgments, feeling ashamed for not being able to "just get through it," being afraid of being seen as exaggerating or making it up or wanting attention, wishing i could be someone they see as strong and capable and not fragile, etc etc after a tough conversation with my mom yesterday. i'm so sorry that you had to go no contact with your family...this is the first video of yours i've seen so i'm not sure if you've talked about it before (looking forward to seeing more of your videos 😊) but as someone who is slowly recognizing more and more ways family and society can contribute to internalized ableism, i really appreciate your insight. i think i'm still at an early stage in my own journey, and this just helped me take a step forward! i hope you get the support you need for your trip, and thank you for the reminder that there is nothing wrong with needing support even when the world we live in makes it hard. best wishes 💖
Thank you for allowing us to see this - for being so publicly vulnerable while advocating for yourself to yourself. I hope this video helps someone find you that can assist, and I hope that once you get through the travel-related stress, you are still able to have a productive and even enjoyable trip. Good luck!
I wish I could be there for you! I know I struggle with this a lot in my daily life. People just don’t understand and it makes me feel like something’s wrong with me. Thank you for sharing this with all of us!!
I hate getting the "You're smart I think you can handle it" when I need support in something. It's not a matter of being smart or not. 🙄
"you're smart! I bet if you think real hard with that big shiny brain, you'll realise you CAN walk/see/whatever"
No, being smart is what he's showing right now, by knowing this was likely to be too much (pattern recognition), identifying the contributory elements, and by identifying the solution required to navigate this.
Like a wheelchair user... using their wheelchair.
Like a blind person using their guide dog.
People need people, and having an unusual need in a complex and highly emotional undertaking is, actually, not very unusual at all.
Either that or they speak to you like you're a child.
I made a meme image about that very thing recently. A scrawny kid is trying to lift a heavy barbell. He can't do it. And there's a coach next to him saying, "This is clearly a SKILLS problem! You can't lift it because you just DON'T KNOW HOW! Let's identify three ADAPTIVE WEIGHT LIFTING STRATEGIES!" Because that is exactly how people look at it! It's always about KNOWING HOW to them! They completely fail to grasp the concept. They think we can just intelligence our emotions away. And we can't.
Exactly! Intelligence is not the problem, it's an emotional reaction to the situation. He's smart enough to know he needs help and to ask for it! ❤️
And they always say it right after you tell them that you cannot, in fact, do it.
Thank you so much for sharing this, I cannot tell you how deeply I identify with what you said. It drives me crazy when I pull up the courage to tell people I'm struggling with something and desperately need help and they give me advise on how to better manage things, because "you're a very intelligent and capable person and you've got this!" A) I know I'm intelligent and capable, I didn't say I wasn't. B) Next time actually listen to what I'm saying; I didn't ask for advise on accomplishing my to-dos, I'm in need of serious, in person, hands on help. C) Please take me seriously. It took a lot for me to put aside my internal ableism and shame telling me I "should" be able to do this and ask for your help. It is traumatizing to have you invalidate and dismiss me.
It's like the person you're talking to is completely missing the point! You've already done the work of identifying and communicating your needs, you are not asking for someone to tell you that you do not in fact have those needs, you are asking for your needs to be met.
This is so true. I get this as well as a caregiver too. When you tell the medical team that your not able to handle one more thing for someone else, they immediately try to convince you otherwise instead of figuring out another way. I've only had one team that listened. I was so grateful for them. Not only did they listen, they figured out ways to help. They also took on the mantle of 'bad guy' with my father and convinced him it was their regulations why things had to be a certain way.
This was so very very well said. Thank you.
This. I hate crowds of people. I can theoretically go to concerts alone. I did it once and I did not enjoy it. I was hyperfocused on my surroundings. Everytime I go with someone else to a concert or event it's much easier for me to focus on what actually matters - even when my support person is leaving me alone for a bit or under the right circumstances for the whole concert. I enjoy having someone else next to me that can speak up for me and my needs and be a physical barrier between strangers and me. It takes a lot of stress out of the situation for me.
I hate it with a passion when someone asks me "But can't you go alone there?". It almost makes me not wanting to go there at all and then just cry at home on the day of the event because I would have loved to go there but someone just had to ruin it for me and take the whole fun and enjoyment out of it. Neurotypical people have such a hard time to understand why I can't go to big events or go on trips (especially abroad) without a support person.
Additionally I'm really bad at recognising my surroundings and finding the right way. I can even walk in the wrong direction and get lost with Google Maps open on my phone. People always expect me to have low support needs because I'm so bright and appear to be verbal (I'm mostly quiet and nonverbal if I don't have to engage in conversations with people and I can go days without saying a single word).
It's hard to impossible for neurotypical people to understand and see that I have medium to high support needs when it comes to dealing with other people and getting things done. It's frustrating and exhausting. I'm serious, I don't like "normal" people. They always get on my nerves quite quickly...
Even kind people who haven't themselves experienced ptsd/cptsd often react, in all kindness, to what they perceive as anxiety, not understanding how the conditions differ. I used to love to drive. I used to spend every waking moment out at coffee shops, working on my art and my writing. Now, I rarely leave the house, and the prospect of doing so is terrifying. Give yourself permission to feel what you feel. It's valid. YOU are valid. And you are not alone.
I don't understand what you mean at the beginning, can you please explain again? It's okay if not, I simply want to understand.
@@Absoleithe way i interpreted them was, some people treat people with certain conditions that can have extreme terror to certain situations, the same way they do to those who don’t have the conditions, but just anxiety about x. They try to be encouraging, when… simple encouragement without accommodation is not going to cut it. They think they’re being helpful, they’re doing this out of kindness, but it’s out of a lack of knowledge. Like telling a person with depression to go outside or chat with some friends to cheer up or whatnot, when it’s so much more than just plain regular being sad
Trying to not weep while facing medical leave, and facing the anxiety of having to call the doctors I know I need to reach out to.
I go through that. I'm still, going through that it never goes away. I don't know why I get so easily stressed out and why I seem unable to be able to escape my interlock. I have the ability to drive. I have a driver's license. I've had one for years and I still don't like driving. I still can barely drive but I'm able to drive. I do know that when I was in high school I was almost hit as a pedestrian and that does affect my thinking however I think I've always struggled with anxieties.
Exactly! My father has a phobia of syringes, he needs special treatment everytime it's required to have his blood taken, for example. He is able bodied, smart and in good shape, but that has nothing to do with this.
i have a caseworker who visits me weekly and takes me to medical appointments. i qualified when i was homeless and they still let me recieve services from her. i never would have got myself into housing again without their help. but i haven't lost any autonomy
I think there are people who equate self autonomy with independence, and I did too until relatively recently. Now, my interpretation is, autonomy is being able to have a say in what goes on in your life. You want/need a support person? Go for it. You need complete isolation from people for some time? Well, as long as it’s not due to self hatred, and if the isolation will help you get to a better headspace, then go for that
I'm really happy you were able to find housing! Some caseworkers can be really good people.
honey there is nothing ridiculous about it. Nothing. Nothing!! Anyone with a shred of kindness and empathy would go with you in a heartbeat. We all have our own difficulties. We’re a community. If you were going to Baltimore, I’d reach out. There’s nothing wrong with needing or asking for help, support, compassion. Your bravery to confront these issues and talk about them is remarkable. Sending you much love. 💕
Adding… that was my reaction before context as well. Context only made it more affectionate.
Exactly this ^.
It's not silly, it's not horrible, it's what you *need*. And there's nothing wrong with that. If I didn't have my SO and supportive family, I would struggle greatly with this, as well. And I would be more than happy to help anyone out in this way and I would sit there in the car with them as their emotional support human feeling good about helping out another human being feel good (or better, anyway).
Thank you for talking about this and good luck on your trip!
Baltimore, I just saw bridge coverage. Sending hope & love to Baltimore. I hope you & yours are safe tonight. XO
This echoes a lot of what I feel about myself regarding sensory sensitivities. I wear blue-light blocking glasses at night while driving, because headlights hurt my eyes. I wear earplugs often, because loud music hurts my ears. It took a long time to not want to test if I actually do need them, if I really could just go without, or if I should wear them or not. Same with body doubling. Same with food stuff. "Disgusted with myself" is sometimes what I feel. Basically, I relate. Thank you for sharing!
This is a completely reasonable thing to need. Everybody wants to be met by someone they know at the airport, particularly if they havent navigated that airport recently. Taking an uber can be frightening even for people who havent been carjacked. It's very vulnerable. Theres a lot of reasons why i generally prefer public transit when possible, and this is one of them.
This was reassuring to read, I've never had a particularly bad experience like car jacking but taxi services really scare me, so I choose public transit even if it's slower and worse for sensory issues. Something about being in control of where I'm going and just being one in a large group, without focus on me specifically, actually helps.
i'm currently in a autistic burnout due to overstimulation in a classroom. First, i thought it was silly, and thought i could just brush it off. However the days passed, and i still have a real hard time even leaving my room. And, when i got a message from a group member of college, just asking if i would come by, i broke down: Massive anxious response, i coudnt move, breathing very heavily, my view got dazed, and i just didn't get why. Turns out, it's sort of a ptsd responde, because since i was a kid i always hated noisy enclosured spaces. But classrooms most definetly were that, and since i was a kid, i always "slept" in classes whitout realizing it. I was probably fainting actually, which is more supported by:
A) how much i was nervous in classes in college since i was staying awake at those due to me loving psychology
B) I skipped Almost all classes every semester, just to the brink of failing at school every single time.
Lack of interoception sure sucks sometimes huh.
So yeah, i definetly get you, and this video made me feel less weird about myself, so thank you a lot for it :)
Like you, I have a graduate degree.
And I went undiagnosed until I paid $7k during the pandemic after my therapist suggested a few things that I just was not picking up on. And then she asked, "Has anyone asked you if you're autistic? Because I've dropped hints for 6 months based on what you talk about with your clients and how you might empathize and you don't ever seem to be able to *quite* get there." Having a professional be like, "You know how you work with this specialized population that tends to draw itself together because they can understand each other and you always have a story about how you remember being that milestone and how you're trying to help them work through it" was weirdly sobering.
And I didn't know what burnout was until I realized how pre-tired I was about the *potential* of getting back into it. Not the paperwork, not the driving, not the court but having to work with the kids and their parents and professionals about the kids' specific needs immediately felt so pre-exhausting I started working retail to pay bills instead. There's another TH-camr named Orion who did a video of autistic burnout being different than PTSD and that just hit all kinds of home and made so much sense.
My therapist unfortunately passed during April 2021 from the virus after my 2nd bout had partially destroyed my lung function and kicked off my lymphedema. Finding a new therapist in a time when everyone was realizing they had mental health struggles has been impossible. I've also been called "too high needs" by the ones I didn't list everything on because they either can't or won't listen to the types of problems in my personal life, and/or they're uncomfortable "treating" autism (as if I was there for a cure).
Now, I have to focus on how I like the mindlessness of knowing every day and every shift is roughly the same kind of necessarily restart of chaos with your occasional Karen thrown in. I also like knowing there are boundaries to my hours and constraints to control.
I literally do not know when or if I will be able to work through my burnout with my old profession because I do miss it. It was mostly a regulated day and week schedule with flavoring of emergencies. But what killed me was that the expected day-by-day chaos was fighting a losing battle unnecessarily for the good reasons that do matter for them to fall on deaf ears in broken systems based on flawed people and a listless populace that's been so degraded that minimal safety standards are being able to call the paramedics to send the kids back.
And I don't think I realized how bad it was until I went to see Wish. And I cried at the opening credits. Thank God it was the middle of the day and no one was there. I've cried three times at the theater: the opening of Lord of the Rings: Return of the King; the moment the ending of Logan was clear; and the opening credits of Wish. The first two were ends of eras I'd dedicated at least a decade of my life on (more for Logan when you count I was an 80s kid raised on comics and cartoons). Hearing, "A dream is a wish your heart makes" in the pre-movie commercial then seeing that opening felt like, "My dreams can't happen without someone getting hurt, and I'm not well enough to be the person to help stop it anymore--emotionally or physically." Which has just deepened that gap that I have to overcome to even just get *started* in the field. .
When people say, "Just X," it cuts like an absolute knife and makes it so much worse. If I *could* do X, we wouldn't be in this conversation. But dedicating 100 hours a week to driving, fighting, and arguing through something that is treated like retail but has much higher and more dire implications just...destroys me. And adding to that the masking and bravado while shoehorned into a carer position to appear normal *enough* to everyone else is a whole other depth of exhaustion I don't know how to explain.
Just know you're seen. Just know you matter. Just know you did the best you could and did the most change you had the tools to do. And always know that no one has the right or privilege to ask more of that from you. 🫂
This right here.
I can't skip classes and you can't leave the school unless your parents ask for permission to come pick you up for whatever medical reason. My classroom is hell, everyone is yelling and talking, throwing random items at eachother, hell, sometimes they will play football and volleyball _inside_ the classroom with the teachers right next to them. There's 45 students in every class, including mine, there's more than a hundred students in the whole school and a kindergarden area and yet the building is small as shit.
Also, when i was 7 i was wearing bunny ears in recess and a group of older kids _(way older than me)_ started hitting me with footballs and basketballs simply because i was wearing bunny ears, they showed up again a week later to make fun of me even further and dipped. This was a huge problem last year, every single time they played football i would get hit right in the face with the ball and i would inmediately break down because it reminded me of that lovely childhood memory and this group of guys in my class make fun of me because of my oddly-specific phobia (the same guys who play football inside the classroom).
I still get good grades and i try my best but at some point i would wake up crying every morning or get sick on purpose because i didn't want to go to school, just thinking i'd be stuck in that sensory hell for the whole day terrified me. It still does.
@@OGimouse1read this- I cannot relate directly for the most part but sympathize so much. Life is a journey and we’re all finding our way-it’s just frustrating when the world (a lot of times unknowingly) punishes us for who we are. to you, OP of this comment, to Jeremy, and everyone making it through this world with a disability, visible invisible or both-you are valid, and you are loved. Loved even if it’s just by the people on this video- know that someone who loves you is always in your future if it feels like nobody loves you now. You’ve got this. Much love ❤🫂
You are completely valid. I absolutely understand this. Any doctor’s visit I go to, I can’t go unless I have a support person, in person. I’ve struggled with that a lot, but I’m trying to get to that point where I can accept it. We’re all on this journey together. I hope while you’re on your trip, you find that it is simpler than you expected.
Well, what I'm hearing is someone who not only knows what they need, but is also brave enough to say so AND stick to it even when others, including other aspects of themselves, don't get it.
That is HUGE!
there is so much to unpack with that...we want to think we are as capable as everyone else, we want to believe that we can do whatever we need and want to do, because we are adults and we might to be able to just function normally? and we are expected all the time to try more and harder all the time? that we shouldn't be a "burden" on others if we can avoid it?...but then things that we think that "shouldn't be a big deal" often even simple things, then suddenly ARE a big deal...but because of how we have been learning from others that it SHOULD NOT be a big deal, we think we somehow don't have the right to ask for help...or that we should feel bad about needing help for something like that.
We know ourselves though...we know what we NEED...we know what we can handle, we especially know what the consequences for us are if we try to push through anyway!
Whenever someone tells us, that it shouldn't be an issue, they just don't know/can't imagine or don't believe our consequences. And I'm not meaning that those people are not empathic, they simply can't imagine themselves into a situation that unfamiliar to them, but that's why it's even more important for us to learn that we not only have every right to ask for help, but also we have the knowledge of why and we are not obligated to explain it to everyone else, especially those who are so willingly denying us that help.
Ableism is so deeply ingrained and it sucks....
Thank you so much for this! I'm just now learning about what this is and how ableism (societal and internalized) has affected my health and success in life. It's been 40 yrs of agony and it's so meaningful and helpful to know I'm not alone.
I wish I lived in NYC and could do that for you. I would, without blinking an eye, no questions asked, just for the sheer satisfaction of helping someone that needs to be helped. Personally, for me that's one of the biggest joys ever!
Plus, it actually helps me whenever I feel down - works every time!
Hope you managed to get sorted - I firmly believe in the goodwill of people everywhere :)
You've articulated a lot of my difficulties. Thank you for putting yourself out there. We here want to help in whatever ways we can- even if in reality, we can't. Know you've got a large horde of well meaning strangers rooting for this trip to go really well for you
I have never successfully gotten through two TSA rounds without my Mom present(we've tried, I melted down halfway through). I stand in awe that you can manage that at all, and the idea that anyone would question that you need an aide after that sort of harrowing is at least a little bit of a dick or ignorant.
After living the vast majority of my life not being able to relate to the experiences of the average person around me, it blows my mind to now hear experiences that actually match mine so closely. I don’t know how to put my own experiences into words, so hearing you do so was very impactful. Thank you so much for being vulnerable. This was like looking in a mirror, so I’m trying to take your words of validation to heart.
Same!
You make me realize the way I’ve been invalidating myself for needing people. Thank you for this perspective 💖
Thank you for posting this.
I can’t imagine travelling without a support person (ignoring the fact that I am currently bedbound). But like, mentally, sensorily, emotionally… factoring in covid, the fact that I am usually nonspeaking and Especially so in stressful situations, all the Logistics with sensory safety exhaustion... Like, managing local bus travel independently was Big Spoons pre-pandemic. Never mind air travel.
So like, you are very not alone in this specific need, if that helps ease the feelings of unreasonableness that can come from feeling like one’s needs are Exceptional to oneself.
And also is helpful to me, to hear about other disabled folks navigating internalised ableism, as I navigate my own (currently around using AAC and only starting to use it as an adult, needing to decline inaccessible medical “care” and how that is often perceived as noncompliance, and around only having capacity to schedule 1 appointment a month in spite of the fact that I have about 30 or 40 necessary appointments). So thank you.
I hope that you can find a good support person, that your travels go as smoothly as they can, and that you can keep being kinder to yourself about access needs, even when the internalised ableism brain worms keep worming.
Thank you for being vulnerable. Completely understand where you are coming from. I, too, struggle with the self disgust/ self-loathing of internalized ablism. And the "You're smart you can do it" incites rage every time someone says it to me after I've told them I cannot do something or I need help with something. I hope you can be kind to yourself and the trip turns out well.
I really, really appreciate you making this video. It’s clear that you weren’t super comfortable doing so but you did it for us and I want you to know how amazing that is. It always helps to be reminded that other people struggle with these things too, that I’m not broken I just need to do things differently. I hope you wind up with all of the support you need and deserve during your trip ❤.
Also, I am honestly amazed by people who can just get into a stranger’s car, (by themselves especially!) and just go wherever they need to. It’s wild to me, I generally don’t go places unless I can drive there, not having an independent way to get the hell out if I need to scares me to no end.
The self-loathing part I understand completely. A few weeks ago I almost broke down at the train station looking at all the people around me thinking "It's so easy for them, why isn't it just easy for me? It should just be easy."
"Why can't I do this? Why can't I handle this?" Why does a blanket expectation need to fit everyone? This made me emotional to watch because I've had those same thoughts.
Thank you for sharing. Im sorry your going through this. I used to travel, but haven't in years. The idea is so overwhelming now. My aunt who lives in another state would like me to fly to go visit her. She got re married a few months ago and I couldn't make it to her wedding, she hasn't talked to me since then.. the reason I didn't go is the overwhelm of traveling, then staying somewhere that will wreck my sensory system, on top of that I have complex health needs. The other huge reason is that I have a number of animals that I can't leave unattended for days at a time and don't have anyone to stay at my house who can watch and handle their daily needs.
To be honest your aunt doesn't sound very nice. Also I would totally watch your animals for you if I knew you personally! I bet a lot of people would. You have a right to set boundaries too and it isn't your fault travel is overwhelming, I think it's overwhelming even to neurotypical people.
@@dabbeatles Thank you for the support! ♡ I hate the feeling of always being a disappointment or failing at life.
Oh man, I get this at such a fundamental level. The overstimulation of air travel is awful; there are so many variables you can't plan for (delays, etc); and there's so much navigating required just to get from the plane to the car and then the car to the building you're going to! Airports in particular can be so confusing.
I wish people understood that it's not about being "smart enough" to handle the process. I know I'm smart - if you gave someone an earpiece and let me sit at my PC, I could organise everything for them and talk them through the entire journey from start to finish!
The problem is that the resources I have for coping with stressful situations are insufficient for actually being _in_ situations that cause that amount of stress!
Having somebody on a trip with me automatically lowers my stress levels, because even if they do literally nothing the entire time, it's the fact that I know they _could_ take over if I needed them to that makes things less stressful.
When I'm on my own, I have to put a LOT more energy into staying focused; making sure I'm doing everything I need to and am at the right places at the right times; fighting through the overwhelming sensory input, etc - because I know I have no backup. I know that I can't afford to screw up or let myself melt down, especially in an unfamiliar place. (Both of which are impossible to control through sheer force of will, of course!)
So I don't blame you one bit for wanting someone to meet you at the airport and travel that last leg of the journey with you - especially considering your past experiences, jeez.
It sucks how much trauma exacerbates the issues we already have - and in particular, people's reactions to our trauma 😣
I have a lot of anxiety about getting lost when I'm on my own, because I have such poor direction sense.
When I was a kid, I was once on a school excursion and somehow got separated from everyone else and ended up thoroughly lost. I totally panicked - I was in a completely unfamiliar place, I couldn't find anyone I knew, and I was convinced that the bus was going to leave without me. When another kid finally found me they made fun of me for crying, and the teachers yelled at me for wandering off. So that sure didn't help my anxiety with regards to getting lost, lol.
Man, it's so hard to be sympathetic towards ourselves. I can watch your video and think that you absolutely deserve all the support you need, and that you have plenty of valid reasons to need it! But it's hard to make myself believe that I do - I feel like if I _just tried harder_ I could do everything I need to do! Stupid ableism, lol.
Be kind to yourself - your needs are valid; and you deserve all the support you require to make your journey safe, both physically and emotionally.
(And I know that's the whole reason you posted the vid, to tell other people that - just wanted to reflect it back at you in actual words 😊)
The “I just need to try harder” is something I’ve told myself for many years, even before I was cognizant of my neurodivergence. Intelligence, unfortunately, does not solve executive dysfunction, nor sensory overwhelm, or a myriad of other things. I know in theory how to do things, but I don’t have the right tools to do those things. If sheer willpower will rid of my struggles, then I would not be struggling.
And then there begs the question, why should we have to try so much harder than able-bodied folks, to do the same thing without the accommodations we need? Or even to just do a fraction of what they could do. Like with autism in particular, people get sensory overwhelm because our batteries are being quickly drained away by everything around us. Even if we’re not aware that that’s happening. So having to try harder is only going to deplete even more of our limited energy (everyone has a limit, but if you lose battery much more easily, the last thing you need is to have more stuff you need to attend to
I still struggle with the shame. I feel like I should be able to do what others can easily do - I used to be able to do the same - actually, that’s a lie. I did not have as much on my plate, and i was also dissociating very much, so it felt like it was “easier” back then when in reality i was pushing myself every day. I never envisioned myself to be at the place I am at now, struggling so much on my own as an adult. I tell people I need a support person but ofc that’s not accessible for me because 1) money, and 2) money. The one person I do feel comfortable asking, is out of state, and she is also a busy person, so I cannot rely on her too much, or much at all really. And because they know that a support person is not feasible for my situation, it’s all a bunch of suggestions that I need to act upon when I am struggling to do what I already have on my plate.
I relate to everything you said. Idk if that makes it any better but...yeah, I relate a lot. I get lost so easily and being made fun of for it doesn't make it any easier to get better at navigating honestly.
Thank you so much for sharing this!! I never doubted your autism or that it disabled you, but actually seeing this video, where I see autistic overwhelm in your body and speech that looks like my own, where you talk about hating that you can't do a "simple" thing, is so validating. Seeing that you're so capable at communicating things through scripted monologues and skits, knowing that you're employed as a writer but still can't do this makes me feel better about my own struggles. I'm also a hyperlexical, high-masking autistic but I can't do "easy" things like make myself ANY meal that involves cooking. It's hard not to fall into the mental trap of thinking "I should be able to do this because I can do these other things so well."
Thank you. Hold the line with needing a support person -- I have been to workshops with a support person when I have been unable to figure out or articulate exactly why I need a support person, and it's been really useful. I've just given some general instructions like "keep checking in with me occasionally, and keep an eye out, and if I seem withdrawn help me figure out what it makes sense to do". And yes, it does feel like a failure that I need that, but I know in my head it isn't!
For me this kind of thing tends to be a product of burnout. Sure, the fact that I can't do things I'm used to being able to do is disabling, but the fear and frustration and embarrassment surrounding that realization can very easily cause me to spiral, and is if anything more acutely disabling.
And, as I've made progress in understanding my disabilities and their accompanying internalized ableism, I've found I'm less likely to spiral.
I hadn't ever thought to frame my understanding of this process in this way, but it's useful and will likely save me some headaches trying to explain my situation in the future.
Just a note about Uber, in case you decide to try it under less stressful circumstances: last time I took Uber, an option popped up asking if I prefer quiet or if I am happy to chat. I prefer quiet.
The driver did say hello and check my first name and that was it.
Although, I don’t know if this was something that pops up for the driver, or if he wasn’t going to chat anyway.
I'm sure a lot of people will appreciate your courage to be vulnerable! I was surprised when you said the need to explain why is ableism. I really want to understand why I do things and need things, whether or not anybody else is asking. I'm a puzzle, and I'm driven to solve it. I think understanding why I can't do something and what factors affect my functionality helps me cope and find solutions. In this situation, it seems like understanding why might be part of your healing process? I hope you find the support that works best for you where you are right now. And even if it were possible to take an Uber independently, when you have a problem it's your choice how to solve the problem.
Subscribed immediately. I don’t think I have ever heard anyone articulate my brain like this, and hearing my experiences of shame, embarrassment, coming from another person is extremely validating. Thank you for being willing to open yourself to this level of vulnerability.✌️💖
I know right!!!
I have never felt so validated in my life. Your reality is so much like mine and I'm so sorry it's like this. Your reality isn't horrible, your requests and needs aren't ridiculous, and I get that strange intense pressure to be able to do this "completely normal easy thing".
I had to resort to thoroughly training a service dog to get through daily life inside and outside the house; I can't do "simple" things yet I was able to put in 40+ hours a week for two straight years to socialize and train and public-access-train a service dog the equal of any nonprofit. The things I can do I can do incredibly well. It's such a painful moment to hit that concrete wall others don't seem to have. "Why can't you scale that wall when you can scale this wall with ease?" say those not in our skin.
I hope that once you sort out the accommodation you need in this particular instance that it becomes easier to tackle in the future. But even if it doesn't that's no failure of yours; there's nothing wrong with you just because others are clueless about what they're blind to.
This is so helpful. Thank you for sharing. I'm dealing with something completely different at work, but same problem. I need to ask for support for something at work and I'm ashamed that I have to ask, judging myself because I can't explain why logically, and dreading the positive or negative pushback I may get. It feels good to know I'm not the only one, because it sure feels like it.
This hits home...and 2nd, and 1st, and 3rd... 😢
🫂
An interesting parallel I thought of while watching this is “how would any other animal react to being tasked with executing this entire situation on its own?”. And the answer to that is probably along the lines of “not well”.
Humans are still animals and while we do have a few thousand years of very social/overstimulating exposure to guide our patterns, evolutionarily that is not a lot of time or pressure to adapt to a new environment. If you are stressing about a complex/social/traumatic situation, good! You have every right to be. The brain wasn’t designed to do all the things we expect it to, it just happens to be able to do most of them. We’ve built a society on what makes money and still gets people from point A to B, not what’s comfortable. It’s not any one person’s fault the world and the human were made this way, but it can be incredibly frustrating to do your best despite it.
Finally beginning to work again after a burnout and mental health crisis and i am beyond drained after just a 4 hour shift. It makes me feel really pathetic even though i know theres reasons i feel this way. Its retail so the sensory environment isnt great, it's pretty boring so my ADHD isnt happy, and just having to constantly be "on" and on the watch for customers takes a lot out of me.
This is the first video of yours I have come across, so it took me a while to catch on to the situation, but from the very beginning you struck me as someone who is thoughtful and reflective and not likely to ask for something they don't actually need. I hope you find someone reliable and pleasant to help you and that your bravery in taking this trip will be rewarded.
I think you just being able to talk about this and to search for some one to help you is evidence you are growing and learning how to work around your brain and with your brain. So WOOT for that!! Gotta celebrate even the tiniest of victories. I hope your trip goes super well and I hope you’re able to work out getting all the help you need.
I struggle with this so often, Im still going through the very difficult process of accepting my reality and newfound limitations...its hard. I figured out that ive been struggling with adhd and possibly autism a couple years ago at 25. Which means up to that point i was "just push through it" like everyone told me and thought everyone just secretly struggled that bad. I was trying to convince myself, at the pressure of everyone around me, that i was able-bodied. Additionally Ive developed Costochondritis as a result of other things, so that has greatly limited my physical limits as well. I cant help but feel so weak now, and frankly hate myself for not being able to do what I used to.
Going from "i can" to "i cant". Its been a huge learning curve, and a difficult one at that.
So yeah...the internalized ableism is strong with this one. "This one" being me. It sucks.
I understand what you experience. I get a lot of anxiety too from the FACT that I go less hours to school and that I can take more days off of school during a trip that my school offers to our class.
But the thing is, all that interaction and constant symptomatic experience is what makes me not able to go to school like everyone else. Even when I think 'oh I don't know if I can handle going to that city soo far away, but why?' I don't know, like you said. I don't know which hallucinations I'm going to get or which symptoms I'll get. It's just, the fact that there IS going to be something and I know for sure.
I relate so much to your experience, I got my diagnosis last year and I have just realised how much I was pushed to do things that was way beyond what I had the capacity for. I haven't been relaxed since I was a small child, and now I have been in burnout for almost two years. I'm trying not to be hard on myself for focusing on my own needs, but it's hard when people still tell me that I don't look sick or otherwise tries to push me.
You like every other person deserves to have your needs met❤
Ps! I love your videos. My mind is a clutter of anxiety, rage, loneliness from never feeling understood and existential dread. Somehow you manage to put those feelings into words, and I admire you for it.
I can relate to that. I too, am afraid to fly abroad alone, exactly because of such considerations.
you DESERVE to both feel and be safe. be kind to yourself, love ❤️🩹
Hi - I feel this all in my soul and almost started to cry watching it. I also have CPTSD, and I travel a lot through Africa for work. Out there, we can hire expeditor services which are basically people who handle all of the travel pieces for you and help get you through the airport. NYC is tough, but you've NEVER seen a domestic African airport... omg, it's utter madness! So the expeditors will basically meet you at the airport, handle customs, bag check and security, and where they can't, they'll tell you what you need to do, and wait for you until you've done that part, and walk you to the next part. They manage the chaos for you and just point you to the next thing, tell you what to do (or where to wait while they do it for you) so you don't have to think too hard. It sounds like you need something like that. I don't know if there are those types of services for domestic travel, but that's what I would look into. Maybe talk to a travel agency (they still exist!) and see if they know any companies that can help. Good luck! I know this is scary! I'm about to go to Japan and I'm afraid of some of the same things, and don't have anyone to help me navigate. It's a huge mental load. You're handling it better than you think, give yourself grace.
Edit: This service looks pretty similar to the expeditors I'd get in Africa: usvipservices.com/?+service+new+york&gad_source=1&gclid=CjwKCAjw5ImwBhBtEiwAFHDZx0O6gUyVaBWBd5WzSIgXX5BSe_Nl0dF_Xk061HCLslYQIQ4KtnrxDBoCZcQQAvD_BwE
As someone who has needed that and not received it and then learned to go without it, you need that person. That's valid as f***"**"$$#ck. You do not have to push yourself through. The damage that we do by constantly shoving ourselves through and "learning" to mask or control our meltdowns until we're safe, etc.
It's awful. You deserve support. That is so valid. SO many of us experience this. I'm so angry for you that this isn't more easily available and I so hope you'll find someone who can support you this way. 💜
If you need support, you need support. It's not a shameful thing. I hope you get the help you need!
I am sorry you are going through all of this. A couple of things that may be helpful with some stuff: I bought noise cancelling headphones for the plane and they make a huge difference. I never realized how loud the plane/airport are and the stress that the noise adds to my experience. Regarding the do I have to talk with the Uber driver issue. I think in Uber and Lyft, you can select a non-conversation ride. So, if someone can help you schedule a ride, they can select that option for you. Whenever I have had to take one to the airport, I upgrade to the larger vehicle to make sure there is room for my luggage. A lot of times those vehicles are driven by people who tend to help with luggage and don't chat with you because I feel like they also drive for private car services and so it is closer to that experience. Anyway, I hope these small suggestions can help at least remove some of the things that add to your anxiety. If you can control what you can to make yourself at least a bit more comfortable, hopefully it will make everything else easier to manage. Again, I am sorry you are dealing with this all. Your need for support is understandable and nothing to be ashamed of. I hope you find the support you need. ❤
Thank you for sharing this- it really helps me understand what I am going through in similar situations.
Not sure if it helps - the concept of someone meeting you at an airport and taking you through to your destination, and sometimes even going with you from your home to the airport through the entire flight - is very acceptable (for NT people) when travelling abroad to places like India or China. The reasoning is to have a companion with you for the culture shock.
And personally, I look at the experience as something very similar- having someone to offer support for a situation that you know will be affecting you. I hope you will be able to find your support person that will make this lag of the journey easier.
Thank you for sharing this vulnerable moment. They're hard to share, but my experience is that opening up about what you're struggling with finding support for is generally for the best. If you're with safe people, anyway. Love your channel. Love your work.
"You're a smart person, you can handle it" sets my blood on fire.
I hope your arrangement to have a companion works out~!
PS - Idk if it's your speed or not, but service animals for autism are available. Basically they can place themselves as barricade between you and other people, help calm you when you feel overstimulated, and make great weighted blankets. =^_^=
Thank you for this vulnerability. It is so validating to hear someone else's struggles with these things.
I feel You!
I feeeeeel You!
I totally feel You!
It's horrible to feel like this, I hate it and I am instantly crying. I feel worthless and ashamed if it is me.
And I totally understand You and it is completly okay for me that You have this need and ask for help. If I would live in the US I would be happy to support You (funny thing is that I am great with supporting others but mostly not able to do the same things fearless fpr myself on my own...).
I want to send You a deep long hug if You want one🤗
And I really hope You find someone to support You in a way that fits.
Me too!
What an amazing post! I love your assertiveness in asking for what you need and your vulnerability in sharing your reasons why. I wished I lived in New York so I could take the day off and be your support person. Thanks for inspiring others with what you model for us. Good luck from the UK in finding the right person to fulfill this role. Hope you enjoy your trip! 😊
It does not sound ridiculous to me at all! I know if I was in your position and needed the support, it would sound ridiculous to me as well and I would be mad at myself for needing it (and questioning if I really do) but hearing it from you, as an outsider, it makes sense and I don't see it as ridiculous or even strange. Funny how that works, huh.
It doesn't sound ridiculous at all. As someone who's always confused about how to navigate the world - specially when it involves places with so many people, bright lights and loud sounds - having someone to pick you up and help you out lessens the stress a whole lot. I know we often feel ashamed, but in reality there's nothing to be ashamed of.
this video brought tears to my eyes, ty man, ty.
Thank you so much for sharing this 🙏
All my support from France 🇫🇷
I hope you have a peaceful and smooth trip.
It’s so inspiring to observe the effort you’ve put into understanding your needs so that you can make choices that are just right for you. I find this a beautiful reminder of the fact that we never know the full story for anyone so it’s best practice to TRUST ourselves to make the right decision for ourselves, and accord others this same respect. And if mistakes are made along the way, so be it!
This is so relatable and I am so grateful for this video. I think of so many times of my life really terrible things have happened to me when I really should have had support. I’m sorry especially for the carjacking, selective mutism, and the stress of reconnecting with family. Wow, do I relate. Thank you for helping me recognize that my experiences like this exist. I get chronic health issues from stress. No wonder.
Thank you for sharing and being vulnerable. The whole idea of needing to know "why" is very familiar.
Hoping that you can find the support that you. I'd offer to help if our visits to New York sync up, but I'm thinking that might sound creepy.
Your needs are valid. You deserve to get them met. They are not ridiculous. Gaslighters abound and it's difficult to deal with them.
Sending good thoughts.
Standing Ovation for working so hard to recognize & work with reality to get what you need. No one gets to tell another person what is easy or not for them. Thank you for your post.
If those people really BELIEVED we are intelligent and capable, they would hear our fully informed evaluation of our need for assistance.
My sense of direction is so bad that I can't take long trips by myself. I can't drive on the highway either. I can't even figure out our public buses. I joke about it, but it really bothers me sometimes. I do have a friend that likes concerts so he'll drive and help me around. We call him my emotional support human. I still hate the fact that I need the help. For a long time I'd just push myself instead of being willing to accept help.
Thank you for your vulnerability!
I identify with this hard. I graduated about a year ago with an engineering degree from a top 15 school (it's an absolute miracle I did) and the words "You're smart, you should be able to handle it" send me into the same tailspin you describe literally every time those words are spoken to me. The internalized ableism surrounding this false equivalence of intelligence and emotional resilience* is the main reason im in such intense burnout following college and why even looking at an email draft for a job application sends me into a full tailspin. Merely ACCEPTING that I NEED people to help me with what is supposed to be "easy" for most people has been an absolute nightmare after I've spent my entire life just barely getting by on my own. It's exactly as you said, the denying of a feeling or emotional reaction in favor of explaining it inevitably leads to pushing yourself past your limit. It's this crucial point where having a supportive community is absolutely do or die.
Someday I hope to be able to do some of these things on my own. But it's... okay if I can't. As hard as it is to admit that. The internalized ableism is a shield against externalized ableism. Preventing me from being denied the help I need or ridiculed for asking by simply... never reaching out in the first place. And then rationalizing that not reaching out by telling ourselves it should be easy or we deserve to be miserable or whatever nonsense.
I'm happy you were able to cut out your deeply unsupportive family and I hope you have found yourself a community of people who treat you with the care and empathy you deserve.
*(im not sure if "emotional resilience" is the quite the right term to capture the meaning of "handling it" but that's what I'm going with for now)
I feel this too. You’re not alone. I broke down in Denver international airport, tears and all, because I was so tired, overwhelmed, and alone. I hope you find a support person ❤
Thank you so much for every word and truth that you shared here. ❤ I hope you continue to receive the self-compassion with your needs that you so generously offered to so many people who need to hear this everyday.
As someone who lives with CPTSD I completely understand your emotional reaction just because of what you are about to do after going no contact. Knowing that you were carjacked makes it even more understandable. So why should you expose you to a situation in which you could go non verbal or get dissociated in the middle of an unsafe place?
You took the right decission.
OMG, this video hit me hard, much harder than I would ever have expected.
I was particularly struck by you saying how feeling the need to explain, even to ourselves, why we are the way we are is internalised ableism. You are so right!
Imagine being responsible for so many people's path towards the cure of so many things, with this video alone. This term is new to me, and I feel the fastest I assimilate it, the better I'll be able to treat the issues. Thank you so much for your services
Thank you so much for sharing this ❤️
Travelling is such an overwhelming experience and you shouldn't feel bad for asking for help ❤
1st, this is so brave. 💓 2nd, thank you so much for allowing me to feel through this with you. I find so much resonance with shaming myself for needing extra support at times when "I should be able to handle this..." (And also a reminder that my daughter's selective mutism when she's dysregulated isn't something she necessarily has control over.) Something that continues to help me when I struggle with asking for or receiving the support I need is I tell myself that it is literally someone's higher purpose today to BE of service, and if I don't allow myself to receive the help they so lovingly offer, then it hinders both of us. Receiving support is blessing the person who wants to be supportive.
Thank you. I have the same PTSD response when I think about working in the service industry again. I also need my partner or kids to ride the bus with me to do errands most of the time, and regret every time I step over my needs and "just do it"
I am glad I found you on YT.
Thank you so much for sharing this! I deeply admire people who are able to be vulnerable with strangers online. It’s a brave and scary thing to do. I’ve been disabled since I was in high school, but I had such deeply internalized ableism, I didn’t even recognize it as a disability until like two years ago when I was 30. I still struggle with negative self talk around my disability. Knowing that I’m not alone and seeing other people being open and transparent about their struggles helps me be more compassionate with myself. So thank you, again, for sharing this experience. You are a beautiful human and absolutely deserve all the support you need and want.
I first started watching this with thoughts of, "oh, I'm sure he could do it. He'll be fine." And then you started talking about not knowing why you couldn't do it and that you're struggling and list all the things that could go wrong and yet sharing an awareness from your past experiences, current state, and motivation to figure this out made me realize that I do that to myself. That's how I was taught, or well treated, to handle things and it doesn't even work me hence the past thre years of diagnosis and working through these things. Despite the past three years of work on that, I defaulted to what is basically, "just do it" as if that helps.
Thank you for sharing and for your vulnerability. You're so very awesome for all that you do on TH-cam here and for many more things that are offline. I hope that things worked out for you with this.
Thank you for this. I was diagnosed w/ ASD in late adolescence bc despite my having almost every single symptom, it was thought that I couldn't have ASD bc I behaved in school and got good grades.
My mom still has this attitude, that it's somehow fake/played-up/laziness. It's comforting knowing that when asking for help or just talking, other autists also are told "but you're smart", as if it's at all pertinent to the topic.
We've been panicking about transit lately ourselves, feeling awful that our mom has to drive us to all our appointments but not understanding the public transit system but feeling like we have to use it and learn it anyway even though it doesn't make sense to us.
It sucks when it's complex like this, when I don't have an explanation. When a building doesn't have a ramp and I roll up to it in my wheelchair, the issue is obvious. How do I explain what about the public transit system is beyond my understanding? How do I justify it?
*we use both "I" and "we" because of our plural identity; we are not trying to represent anyone else or use a royal we
Oh my gosh...I felt, cried and nodded all the way through. I can't even begin to count the number of times I've felt like this and tried to explain that to family/friends and even doctors just to be told, come on, you're so smart and resourceful, you can do it just like everyone else. It's heart and mind breaking. I hope you did find someone to support you in person. You need and deserve it too. I'm still at a loss for words but I wanted to say what little I did. Thank you so much for sharing this.❤
❤
As a woman with high anxiety, having a support person you know is safe as a buddy to ride with while traveling alone sounds completely understandable! Especially since you were carjacked in the past and your family gaslit you into thinking it was entirely your fault- which, it was NOT! I am glad you went no contact with your family. I hope it has helped improve your mental health.
I understand the feeling of danger while just being in the same city- I am low contact with my parents, who live in the same town as me. I get panic attacks just from seeing the family group chat (because they basically try to guilt trip me into helping them). When I get to a certain stop light, my whole body starts feeling tense, I breathe faster, and I remember the trauma that was living in *that house*, which I am driving towards in order to get to the store.
I hope you are able to find someone who feels safe for this part of your travel journey. You DESERVE to feel and be SAFE. Thank you for sharing this with the world.
Years of programming that we and our ways and needs aren't enough, certainly is one huge contributing factor.
Yes, all the stimulus, new stuff, the family issues/experiences.
Be clear to yourself and others about your needs.
I dont really have much to say about the rest of this video, but i do want to say what im thinking here. You know, i feel like its also valid to look for those logical explanations as well. You say it's internalized ableism, and maybe it is for you, maybe for others as well, and i get that. But for me personally, i have a very logical and analytical way of navigating the world around me. I want to understand everything i can about everything i need to interact with, because understanding it helps me to actually deal with it. Myself included. I want to understand myself as well, whats going on with my body, my mind, everything, because i know that understanding it will help me to deal eith it better. I dont need the explanation to feel valid, but rather, seeking an explanation is part of my coping mechanism. I feel like it's important for people to know that whether you seek an explanation or not, its valid either way. I think, at least.
Yes! It's not necessary to validate the need, but I want to know why just as much as the NT person who might be asking me. I agree that knowing why helps find solutions.
I understand this, I also always am.calmed by "understanding" sth logicslly.
But that doesn't mean it is not internalized ableism, too. One doesn't excludes the other, or am I wrong?
@@katzenbekloppt_mf maybe it depends on the reason. Autists thrive on rules and predictability, so I think if we find a reason for the limitation, know what rule the brain is following, that feels predictable and reassuring. Also, things that are illogical cause me anxiety, but doing math or something logical soothes my brain. So if I have to accept this limitation at least I can have some logic associated with it.
Thank you for sharing this. I am trying to learn to “trust myself” about what I need. I went through a mini version this morning after I’d already been inside at a bank, and filled up at the gas station. I went grocery shopping at the closest grocery store (not my normal one) and it was very busy for whatever reason. I could feel myself locking up. Then the internal dialogue- part of me saying just make this a short trip and get out of here. The other part of me saying this is ridiculous, you’re f.I.n.e nobody else in the store is having a hard time and finish your list.
Definitely a window I needed to have opened about those that deal with anxiety and PTSD on this level. I've had trauma, so I feel like I can relate, and I want to because I want to have empathy and understanding for those that struggle with these things on a daily basis.
I am sending you all my love. Thank you for being vulnerable and sharing your incredibly valid thoughts. I haven't experienced exactly what you're going through, but what you said deeply resonated with my own experiences.
I had a physical therapist a few years ago who told me "Any accommodation that improves your life even 1% is worth it." And that sentiment has helped me a lot. And although I definitely still deal with my internalized ableism, I am learning that the people who help me genuinely don't mind, that I'm not inconveniencing anyone by going at my own pace, and rather than feeling embarrassed for using my accommodations I should be proud of myself for doing the thing in the first place.
I think sharing this is so courageous and noble. It’s raw and honest and a demonstration of self-validation, an incredibly important skill that isn’t well understood by so many people struggling to just keep going. Thank you, this is very inspiring.
Thank you for sharing.
I have Complex PTSD, and know how hard it can be to get help. It's huge that you can recognize the need, vocalize it, and ask for help. I hope you find the care you need to have a safe trip. It really shoildnt be this hard to get support, care, and nurturing.
This is incredibly validating. I went on my first business trip a couple of years ago, and it did not go well. I'm going on a trip again this summer, and I have a strong need to know exactly what's going to happen at every step of the way. It's helpful to know that I'm not just blowing all of this out of proportion and that other smart, capable people also need support with travel.
Holy crap, this is super validating. The number of times I've shared an issue I'm having with someone, and they respond "you're smart, I know you'll work it out," and even knowing that most of it comes from a place of encouragement, it doesn't make me feel any better, usually worse in fact. It took a break down to conclude that smart isn't the issue, because I would've solved it already if that was the case.
Thank you for sharing this. I'm grappling with similar issues right now. Because it's easier for me to have compassion for someone else than for myself, hearing you talk about this has made it a lot easier to see my own situation in a kinder light.
Thank you for sharing your deep feelings. You are valid! You are helping me realize my shame and non-acceptance of myself is because of my difficulties and my own judgement of myself. On top of my family’s judgement (no contact) I hope your trip goes well. Think “what if everything goes well?”
I hope you have a kind escort who puts you at ease. Perhaps this person can accompany you to the store or other places. Being alone with anxiety is terrifying! Just having a friend by your side will make things ok. A “body double.” I need a “body double,” just a friend to physically be present, to concentrate to putter around the house. They don’t have to do anything, just be there.
Thank you for explaining it so well! I didn't know it was called (internalized) ableism!
I only knew how it felt heraing "why can't you just...?!" right after painfully explaining why I cannot just do a thing.
It's dismissive, sometimes even condescending, and it's enraging and disheartening.
This is super helpful. Thank you for boldly putting this out into the world. In particular the gaslighting from the family, it is so familiar. The whole thing. Thank you!
I so feel this. I need logical reasoning for everything. I admire you so much for just getting to an airport and on a plane. I have done that for decades.
Omg the not realizing your trauma was traumatic. I relate so hard. Also, i teared up at the "youre smart, you'll figure it out" comment. Yeah, i KNOW i smart, Linda, but that has nothing to do with this! Thank you for sharing, even tho it was obviously hard. As a recently & late diagnosed adult, it's really validating to hear about how other high masking adults do adulting.
Thank you for being wiling to share, and tank you for making sure your needs are met so you can enjoy your trip.
I generally only use ride shares as a last resort, as riding in a car in a densely populated city makes me extremely nervous and interacting with strangers gives me anxiety. Although this might not be helpful in your case, using a train or subway eliminates these stressors for me.
Interesting how different people are. Nothing is more stressful and frighting for me as public transport. I feel more safe in a car. This is why I want to make a drivers licence so badly (didn't yet because of beeing poor, in Germany it costs some thousand Euros)..
thank you so so much for sharing this, i'm learning a lot about my own internalized ableism recently and still have so much to learn but there were a lot of things that just clicked for me while watching this video. my parents in particular have a hard time understanding that my needs are not the same as preferences, and that ignoring my needs is a much much much greater danger to my physical and emotional health than doing the work to adjust my life to meet my needs, even if it's not easy to do that work and make that adjustment. and seeing this video just helped me catch myself internalizing my parents' judgments, feeling ashamed for not being able to "just get through it," being afraid of being seen as exaggerating or making it up or wanting attention, wishing i could be someone they see as strong and capable and not fragile, etc etc after a tough conversation with my mom yesterday. i'm so sorry that you had to go no contact with your family...this is the first video of yours i've seen so i'm not sure if you've talked about it before (looking forward to seeing more of your videos 😊) but as someone who is slowly recognizing more and more ways family and society can contribute to internalized ableism, i really appreciate your insight. i think i'm still at an early stage in my own journey, and this just helped me take a step forward! i hope you get the support you need for your trip, and thank you for the reminder that there is nothing wrong with needing support even when the world we live in makes it hard. best wishes 💖
Thank you for allowing us to see this - for being so publicly vulnerable while advocating for yourself to yourself.
I hope this video helps someone find you that can assist, and I hope that once you get through the travel-related stress, you are still able to have a productive and even enjoyable trip. Good luck!
I wish I could be there for you! I know I struggle with this a lot in my daily life. People just don’t understand and it makes me feel like something’s wrong with me. Thank you for sharing this with all of us!!