I was at the end of my rope and the only solution I could think was contacting a therapist. But I couldn't call him. I was looking at the contact on my phone and melting down and putting it off for MONTHS! Finally I called and it went terrible but it went and now I'm in therapy which is not necessarily better yet but I guess it's still early. I told him to please always tell me when the next appointment is because if we leave it up to me I'm just never going to call again. I've expressed multiple times how hard phone calls are and he's still giving me phone call homework... But maybe he's just testing my limits.
Same, I even managed to get "support" to get support, but then they were talking about me having to interview people and you get a fund from the council and you pay their wage out of that and I'm like I can't even manage my own money properly 🙃
The first thing my mum said when I told her about my autism diagnosis was "but you seem to struggle with only the social aspects of things" and I was like ONLY the social aspects?? Almost everything in life involves having to be social, so I struggle with almost everything 🤦
I’m so tired of people acting like it’s just making friends that takes social skills when like 90% of life required some level of socialising with someone 😭
@@DanaAndersen Exactly. I tried to explain that I struggle with even just walking down the corridor to the toilet in work because I'm incapable of making eye contact and giving a brief "hi!" to everyone I meet along the way, so I often just don't go to the toilet.
omg - I went to law school. When I talk to every single Neurotypical lawyer or judge, and I ask a question, the question they answer is not the question I asked ! It's exactly like you say !!
I started a new job, and someone was talking to me, literally told me to stop shaking there is no reason for it. My anxiety levels were off the charts, shaking and sweating thought I was gonna pass out.
One of my biggest hates is when people notice my anxiety and tell me there’s no reason 🙃 Gee thanks, that helped literally not at all! Sorry you’ve had to deal with it too 😭💕
yup, 41, had these issues my whole life and still havent been able to get support or a job, my entire adult life. Not sure what I'll do when my mom stops being able to be my support, as its all i have right now.
i am 54 and my parents are in their 80's. i get scared too. i feel like i can rely on my younger sister for a lot of support but her husband doesn't seem to like me very much. one day at a time i suppose. anyhow, i feel you for realz.
Hi Dana, I was only able to ‘push through’ and get and then actually hold down (!) jobs where I had amazing support from non judgemental bosses and colleagues. And this was way before I knew I was autistic. The last 15 years or so, I kept trying to push through’ in situations that were incredibly stressful, disorganised, I was actively bullied etc. I have been burnt out and no longer able to ‘push through’ for the last few years! I am suffering from multiple health issues and I now understand why. Anyone who tries to tell you that you need to ‘try harder’ is not even worthy of breathing the same air as you! Trust yourself and don’t let others make you feel bad because you experience things differently xx
Having experienced the everyone else knows what's going on and what to do, and the confusion of how does everyone know and I don't? It have the effect of making one feel more of an outcast, especially when asking for help and being ridiculed and humiliated in front of everyone, it just makes ya want to disappear, hide away for the rest of your life.
It makes me feel like I'm crazy. How does everyone just know?! I'm not stupid I swear, I actually think my IQ is pretty high but it feels as if whenever someone looks at me they think I'm the dumbest person alive. No, it's worse. I think people can tell that I'm smart so they are extra confused when I can't grasp these things. Their solution usually is to tell me I'm overthinking things and confusing myself. I'm not. I'm just genuinely confused and trying to figure it out. For some reason the information that just appears in all of their heads, doesn't appear in mine.
I suffer from background noise issues too. I was at the job centre once and the advisor was talking to me and I couldn't hear a single word he was saying. I had to say I can't hear you because it is too noisy in here can we go somewhere quieter. I call it background deafness. Edit: Congrates on 10k subs by the way.
"i cant" - appears to make people uncomfortable. i was saying it today to the pharmacist as i had ALREADY taken a big hit simply by going out to the pharmacy and sitting for 40 mins waiting. I am mostly housebound and for good reason. he didnt get it at all and instead of waiting the 10 more mins and risk a full meltown in public, i ran off. i couldnt wait 10 more minutes. its as though saying "i cant" somehow reflects poorly on them? (not sure exactly) but it is silly because thats not at all true, but pprobably does become the truth if they are behaving in a less than welcomed way in response to stating your limitations (i cant). i super relate to all you said tho, thx!
The expectation to "push through" is so prevalent and I have internalised it so deeply, that I am now as much to blame for my current year long burnout as anyone else. This is not an expectation that society places on visible disabilty. I also have "invisible" physical disabilities and I've fucked my body too by trying to push through. The only solution is to learn to advocate for myself better and I'm really trying but (even my closest) people act like I'm suddenly just not trying. Which is bad enough without me, on some level, agreeing with them because "I used to be able to do x, so why can't I now?" The inherent internalised ableism of high masking autism is killing me.
It's probably not your fault that people aren't answering your questions. I get the same problem sometimes. Some people are worse than others. They make assumptions about what you're saying instead of just focusing on the actual words. It's really obvious when you ask a question that requires a "yes" or "no" answer, and instead you get a paragraph with neither. Sometimes I can infer the answer in that paragraph, but more often I can't even find a hint. Maybe they're trying to anticipate my next question and failing. Sometimes I repeat my question verbatim and get the answer I was looking for. It's kinda funny. I have trouble hearing through background sound too, but I don't have people blaming me for it (unless I'm even more dense than I thought). Either you're running into more a$$holes (I hate the algorithm) than I am, or I'm somehow intimidating them into being more polite. Usually saying, "I don't hear well. Can you say that louder please?" is enough. Sometimes I have to repeat it. That therapist trying to give you therapy in public is a definite moron if you ask me. That should always be private. I think I'd have reported them. It is isolating. I can be at a restaurant with friends, and though they're not even 5 feet from me, I can't hear what they're saying to each other. I try to listen as I eat, and if the mood strikes me I'll interrupt with, "Was I meant to hear any of that? It's too loud in here for me." I don't expect anyone to think I'm rude for doing that. On the contrary, it's thoughtless of people who know me and my issues not to speak loud enough, and it'd be more than rude of anyone to resent my question.
One of my best friends is an autistic Expert by Experience for the charity, Grapevine, primarily for the NHS. We both agree with you that it shouldn't be necessary to phone the doctor when you need an appointment.
This isnt massively useful but it does make me feel better, but I've realised recently that although there are a lot of things that are obvious to NT's but not obvious to us, it also works the other way around. Lots of things go wrong for me socially that have to do with the way I speak, but at the same time there's a bunch of things that I realise are just not going to get across to them on a fundamental level, because they just are unable to notice the things I notice, or see how things relate or the patterns I'm life. When something's obvious to us we don't feel the need to explain it, the obvious thing is understood almost unconsciously, so unless we are put into situations where we have to deconstruct our words and beliefs we don't tend to even know how to articulate that thing, and take its existence in our lives for granted without ever thinking about how or why it is. We ask NT's about things which are so obvious to them that they don't even think to explain it, it doesnt occur that we could be asking them about that things, I believe that because they haven't thought about it they too would have difficulty articulating themselves (outside language processing speed). As autistic people we are constantly pushed into scenarios where we have to explain things which are obvious to us to NT people, finding ourselves trying to come up with numerous ways to say one thing that are unnatural to us, but unable to pinpoint why it isn't obvious to the NT. We are more likely to be seen as stupid because of this, because the NT point of view is the default, and what a NT doesn't get something it's because that thing doesn't make sense objectively. It's like talking in analytical academic language to someone who speaks only in art speak, or speaking the way the bible is written to someone who only understands satire. I hope that makes sense. Everyone thinks their view is objective, the only way to understand things, however as autistic people we are aware of this dissonance between our experience and NT experience because we are constantly faced with it. NT's are never challenged to reword or analyse their words, so they are not aware that their view of things isn't objective. They don't need to think about why something might not be obvious to us. Anyway a bit convoluted, but I thought I'd say it since it helps me not to blame myself every time NT's dont get what I'm saying, or when I don't get what they're saying.
if NT's would put a tenth of the effort into understanding ND's that we put into trying to understand them that would sure be something! the double empathy struggle is real...they could at least try!
my sister usually drives me around on my errands but she was out of town and i needed to go to the bank, the medical dispensary, a dollar store and grocery. on foot about 7 miles total in 87 degree weather. somehow decided that i could do this myself but boy was i wrong. i managed to get all the stuff done (while not having food or medicine) but i just collapsed the moment i got home and could barely functiion for 4 days after. i keep pushing up against what i need to do, what i am expected to be able to do, and what i can actually do without a meltdown/shutdown. this world seems designed for a very specific type of person and that person is apparently not me. love all your videos! i'm rooting for you!
I feel like that is SO MUCH to do in one day on foot in a place not designed for walking though, I doubt many people would manage that in one day without a car! I’m rooting for you too! 💕💕💕
As someone with social anxiety and autism: it is possible for some people to get better at this stuff with practice and desensitization (to the stress and anxiety). But then again it took me a huge amount of effort over many years, and I am still only good relative to mostly other people with autism. I am glad it is a skill I developed, but after I found out I had autism as an adult was the first time I noticed that not only acquiring that skill was stressful, but using it is still stressful. I still miss cues especially if my focus is on something else. On one hand it is probably a big reason why my support needs are so low, but on the other hand I am not always 100% sure it was worth it. Anyway, it doesn't cure the problem because it is a form of masking, but the cope that gets me through the most is roleplay. I am not doing the thing, I am an actor pretending to be a person who can do that thing confidently. Alternatively I am playing a video game and the next mission is to call the doctor and make an appointment. And if you are in embarrassing situations enough they often stop being as embarrassing.
I hate when people say I just need to push through the anxiety and once I do it enough times I'll learn to not be anxious because like... no. My whole entire life has been me trying to push though and everytime I try it just gets worse and worse - being suicidal, developing an eating disorder, breaking bones during a meltdown, etc. and people never see these as "okay maybe you should stop", they see it as "you just aren't trying hard enough." If I try any harder I'll just be dead - but people see me not being dead as "see, you can do these things when you try!!"
If it hasn"t been said already, 🧡 dear Dana: "I need to know, exactly who and exactly where I should pay my Council Tax to. And those are the only things I need to know please." Hoping they again do not try to "read between the lines" anything else as being meant. NTs express implications as much as the real words, eh ? You travel by yourself to Manchester ! If i had to go to another city (in Canada especially from Winnipeg we have no train travel as easy and common as England does at all) unguided i'd get lost and surely have a massive anxiety or panic attack. Good on you ! i just can't handle strange places --- ominous and consequential ! i wish i could control that.
Oooh a question for your Q&A!! 🤩😄 Something that I deal with periodically and it never gets easier; Do you also get the nightmare of Universal Credit or PIP getting back in touch, (yearly or so), for the routinely check to see if you've miraculously grown out of your lifelong disabilities? 🫠 The PIP renewal process and the Capability for work assessments from DWP are traumatizing every time. Do you have these too and if so, how do you manage going through it all again? Great video again Dana! 😊 The point about needing support to access support (and the fact that it's always job focused 'support') is so spot on. It's dehumanising living with ASD in our society. Cuddle sweet Oat man (and any other furbabies you may have) from mee!! 🤗🐾
i remember standing in an airport and i swear the closer i got to checking in as the queue went on the more stressed i became. even though i was doing nothing wrong! ;w; if i didn't have a bottle of water with me to calm me i probably would have been ill and then everyone would have been staring... *Congrats on the 10k!* and thank you so much for sharing your experiences. they are very relatable and its awesome to not....wellll feel so alone in it all.
Good topic. Thanks Dana. I often rely on others, to take care of my social needs, meaning grocery shopping, dealing with kid’s school issues, making doctor’s appointments, etc. My insufficiencies cause issues, and they keep me from advancing at my job. Dealing with the public, I’ve had cops called on me more than once, by hostile people, after I misread their intentions. I thought they were being nice, when they were actually angry at me. I adapted by adopting a stone face, when approached by strangers, and don’t drop my guard, until they smile, and I know their intentions are good.
Zoom calls are calls from hell Also during lockdown my uni exams were online and we had to answer scan every single. Page and upload it. Each step was physically and mentally impossible and timed 😐
oh my god this video is so spot on. trying to get the answer you need, trying to get the information you’re looking for, and everyone just treating you like some kind of idiot is something I’ve dealt with for basically my whole life. even when I’m asking a question the first time people will react like I’m bothering them, and I’m so nervous to have to keep asking all these things because the answers they’re giving me just aren’t answering my actual question, so I’m standing there regretting my very existence more and more each time I have to politely ask for more information, and the whole time they’re getting more and more visibly irritated. oftentimes either they will give up with me because they’re fed up with me or I will give up trying to ask for help because I’m just not getting anywhere and I don’t know what the hell I’m supposed to ask to get the information I need. I don’t know how they all just seem to know all this stuff like magic, and it hurts how much people treat me like I’m fucking stupid just because I don’t know what they do. people say you shouldn’t be afraid to ask for help, but how can I not be when it goes like this?
6:10 I have tinitis as well, I have given up trying to follow anything that isn't isolated. I used to mix sound in clubs without earplugs😢. I can't even talk to a person at home while the TV or radio is on, I won't grasp the message at all😮
You made a very good point near the end about the unhelpful attitude of many people who don't have problems and who then judge the people that do. As you say it's great that those people are on top of everything but not everyone is so fortunate. They should be trying to help those who struggle and not assume that someone who is struggling is lazy, stupid, disorganised, etc.
The thing we need help with will sound bizarre and counter intuitive for Allistics, they ASSUME these problems are society 101 how could anyone who is an adult not know it??😹
Sailors fighting in the dance hall Oh, man, look at those cavemen go It's the freakiest show Take a look at the lawman Beating up the wrong guy Oh, man, wonder if he'll ever know He's in the best selling show Is there life on Mars?
I see the problem of "can't" as a problem of moving goal posts and sophistry, even in neurotypicals. That being that "can't" often has an idiomatic connotation (especially for non physical impairment) i,e my dad has horrendous hand wrist injuries that would stop 99%< people from typing but he can push through that someof the time. He can type, but there are consequences that mean that it is significantly harder in a physical sense. Where i have something of a phobia of writing (the irony, i know) mixed up with demand avoidance, because i my impairment is psychological (and probably neurological) it assumed by him and others that it is easier to over come. There are things that i have no problem writing and they are usually not particularly important. But the things that overwhelm me are the important things. It is easy for people to write such things off as laziness or obstinance. I am trying to improve, but it is difficult and slow And there are many times that i "can't" write regardless of how much i want to.
Wow - you just gave me some insight. I also have huge problems with phone calls. (Also, with small print black and white papers). I always get into it with lawyers and court staff about phone calls. I didn't really think about it, but I also have to spend a lot of time scripting it out. It just occurred to me that when these Florida state courts and lawyers like Morgan & Morgan are ignoring my phone problems, they are actually violating my ADA reasonable accommodation rights because of the nature, duration, and manner in which I have to script, etc for a phone call. It substantially limits me in the major life activity of talking. TY for the insight ! I never really thought about it before, but I have the same problems with phone calls.
8:47 legit I think autism is being commodified because Autism Speaks does "Workplace Inclusion". Ember Green on UA-cam goes at length about how autism exists, like most things currently, within broader structures/systems. Idk if it sounds overwhelming, but it might be validating. :) Also, you are giving speech to the speechless. You do awesome work, I hope you understand that your labor is greatly appreciated. Much love from so-called Missouri.
Oh, yeah, the social aspect of... everything can be debilitating. I really need to go to a GP/PCP and at this point I have an actual list of things I need from them but actually getting that appointment is immensely difficult. And in this case you can't even ask anyone to help you because of confidentiality. I also hate how everything goes absurdly faster when you make a phone call, setting up an appointment with some organization/doctor/etc. can take literal days over email, meanwhile - for people who can make calls easily - it's a 5 minute thing
You can nominate someone to advocate for you and the confidentiality thing is then null and void when it comes to the particular person you've nominated. You just need to give your GP written permission for this person to act on your behalf/be involved. It works that way in the UK but, of course, I don't know which country you live in.
@@DanaAndersen That's awful. Sounds as though I have just been lucky with this then. Which is surprising, as my GP surgery has been/still is absolutely useless in so many other ways.
@@letsrock1729 Ok, so, I'm not in the UK, no, and it's a little different here. First of all, I don't actually need someone to make decisions on my behalf, that's kind of a complex matter anyway, I'd need to get that notarized and stuff. Second, I _can_ let someone have full access to my medical information at a given provider. Note I said "at a given provider" - I really like that my country doesn't have a centralized patient database like some places do, because that risks discrimination or mistreatment on the basis of autism/gender/mental health/addictions/etc, You can keep that secret this way. The crappy part of it is you need to do admin stuff from scratch ever time - that's where the problem starts, I would need to _go to the clinic_ and make a written declaration and _then_ the person I nominated can have access. So, at this point, I'm already there, why not ask my questions and set up an appointment while I'm at it... Third and last thing: say I have already made that declaration because I've been to that place before. It may be that someone calls for me and tries to figure out something on my beha *BZZZZT* the receptionist doesn't know they have my permission and would need to look it up in their IT. Sometimes admin staff doesn't know who can do what exactly and will err on the side of caution - it's better to mess up a phone call than it is to break the law. Usually mental health practices are better about this, because - I assume - they get a lot more patients who don't do great with this stuff
The worst thing is when you're trying to explain to someone why you find an aspect of socialising difficult and they hit you with the "stop using autism as an excuse" like !!!!?!?! I WANT TO DO THE THING BUT ITS IMPOSSIBLE FOR ME. I swear, autistic people get called unempathetic but NTs who say stuff like this lack any ability to empathise with people who literally have a DISABILITY that affects their ability to socialise.
Thank you for putting words to your experience because it mirrors my own. Asking for specific help and always being given something else as if it’s what I asked for has led me to just stop asking now, if I can do it it doesn’t get done.
I can relate to a lot of these. Background noise issues is a big one for me. Also I have always struggled in large groups where everyone is talking. Besides the fact that socially I usually cannot think of what to say or I'm anxious, all the conversations around make it extremely difficult for me to concentrate on one conversation if I even can think of something to say.
I feel like that thing when NTs don’t answer the question that you are asking is more of a them problem. That doesn’t help much when it concerns something important but it can be a good way to think to not lean in too much to the medical model thinking, that being autistic means having deficits. NTs work a lot on the context and honestly that is a deficit in communication if anything. I find that in writing you can at least show how inconsistent the other person is in their communication afterwards. In my country health services etc have to accept the way of communication that the person reveiving services chooses, so I haven’t really spoken on the phone with people other than my near and dear in the last 6 months.
I've certainly had cases where I've been given the impression that the question I've asked is really stupid and that I shouldn't have needed to ask it. The flip side of this is I worry about this happening and even though I need help I just carry on in the hope I'll work out what to do but usually that doesn't happen so I keep making mistakes. This wouldn't happen if more people had the attitude that "no question is a stupid question" and realised that not everything is obvious to everyone.
I’m autistic and I can definitely see how this happens :( luckily I’ve learned a lot of communication skills from having to predict/ appease my parental figures’ feelings and then going on to develop good friendships on high school … when it comes to ‘people answering different questions than the question you asked‘ thing, and for like a workplace i find that its really helpful figure out why they think you’re asking a different question, and kindly try to fill them in on what you’re trying to get to,, this can be really tedious to come off well; but saying “oh okay, I understand this part, but I don’t understand this!” (making a facial expression that looks confused but like you’re trying to understand what they’re saying in a positive way) can be a good start. after a while you can start pick up on where miscommunications are likely to happen before they happen and eventually learn to prevent them.,., I think it’s important to make the person feel like you’re on their side; it’s hard to tell someone that they misunderstood you, so you kind of have to frame it in a way that prevents them from feeling insecure or anything 😅 I hope that helps I feel like I used way too many words
I sometimes have similar issues with asking people things. One thing you can do is try to ask closed-end questions instead of open-end questions. E.g. if they don't understand the question "How am I supposed to pay it?" you could start asking things like "Am I supposed to send the money to their bank account? What is the number of their bank account? Do I have to go there and give them the money personally?" Something like that. Sometimes it's not your fault, if people don't grasp your question. 🤷♀️ Not answering questions appropriately is sometimes also used as a means of intimidating or even bullying the other person, e.g. at some workplaces. It's meant to show you their disrespect and to make you feel stupid and like a piece of shit. If that's the way, communication repeatedly works at a workplace, I'd suggest trying to try to get out of there asap. This kind of treatment is only going to make you sick.
I have to think of those dozens of situations when entering rooms, where they was some tremendous buzzing or whistling noise in the room, and I thought "How can anybody stay in this room for more than one minute or even work in it or talk to customers?" (I think they must have lost customers with that noise going on.) And they didn't even seem to realise there was a problem. Having got older and being 63 now, this issue has improved, because I don't hear very high frequencies so well any more. 😅 It's one of the advantages of getting older. But still - last year my boss put up a device to keep the mice away. Whenever somebody stepped outside, it started making a hell of a racket - a loud high pitched whistle. 🤯 Apparently the frequency is above what the human ear can detect. I complained to my boss, but he didn't understand, what I was on about. I asked my younger colleagues, and they confirmed, they were able to hear it as well, but it didn't bother them quite so much. A couple of my clients also asked, what the noise was. They were clients, who were also neurodivergent. I repositioned that device for the mice, so the alarm wouldn't go off any more. My boss wouldn't have been able to realize, because he couldn't hear it anyway.
Random but it would be supes awesome if it were normalized in society that we could just like hand people a piece of paper with what we need them to interact with spelled out in very intricate detail and it not seem like a bank stck em up...🤷♀️🤔 Also... why for can we not just like speak in emoji?😏😁😎
I think it would be alright to do that in most situations, at least where I live. Certainly not "normal", no, but if you need someone to do something for you, you could do it. Or maybe I'm not understanding what you mean
Question for the Q & A: What's your favorite episode of Doctor Who and what is it you love about it? If that's too difficult, what is one random episode that you like a lot?
"I need support to access the support" I definitely relate to this. Also, the support itself will be an ordeal!
I was at the end of my rope and the only solution I could think was contacting a therapist. But I couldn't call him. I was looking at the contact on my phone and melting down and putting it off for MONTHS! Finally I called and it went terrible but it went and now I'm in therapy which is not necessarily better yet but I guess it's still early. I told him to please always tell me when the next appointment is because if we leave it up to me I'm just never going to call again. I've expressed multiple times how hard phone calls are and he's still giving me phone call homework... But maybe he's just testing my limits.
@@Hopie_T well done!
Same, I even managed to get "support" to get support, but then they were talking about me having to interview people and you get a fund from the council and you pay their wage out of that and I'm like I can't even manage my own money properly 🙃
I’ve had a list of the support agencies that I have to call prepared since February. Thank you for articulating the issue. Take care
So true.
The first thing my mum said when I told her about my autism diagnosis was "but you seem to struggle with only the social aspects of things" and I was like ONLY the social aspects?? Almost everything in life involves having to be social, so I struggle with almost everything 🤦
I’m so tired of people acting like it’s just making friends that takes social skills when like 90% of life required some level of socialising with someone 😭
@@DanaAndersen Exactly. I tried to explain that I struggle with even just walking down the corridor to the toilet in work because I'm incapable of making eye contact and giving a brief "hi!" to everyone I meet along the way, so I often just don't go to the toilet.
Moms... 🤷
omg - I went to law school. When I talk to every single Neurotypical lawyer or judge, and I ask a question, the question they answer is not the question I asked ! It's exactly like you say !!
I started a new job, and someone was talking to me, literally told me to stop shaking there is no reason for it. My anxiety levels were off the charts, shaking and sweating thought I was gonna pass out.
One of my biggest hates is when people notice my anxiety and tell me there’s no reason 🙃 Gee thanks, that helped literally not at all! Sorry you’ve had to deal with it too 😭💕
@@DanaAndersen never in the history of calming down has anyone calmed down by being told to calm down.
I have shaken with anxiety too eg starting a job.
@@laurencewinch-furness9450I'm gonna print this on tshirts
Noooo, I live in de nile, I'm a crocodile@Psycho-y6g
yup, 41, had these issues my whole life and still havent been able to get support or a job, my entire adult life. Not sure what I'll do when my mom stops being able to be my support, as its all i have right now.
i am 54 and my parents are in their 80's. i get scared too. i feel like i can rely on my younger sister for a lot of support but her husband doesn't seem to like me very much. one day at a time i suppose. anyhow, i feel you for realz.
Love you, hope it all works out.
@@Broken_robot1986 thank you!
Hi Dana, I was only able to ‘push through’ and get and then actually hold down (!) jobs where I had amazing support from non judgemental bosses and colleagues. And this was way before I knew I was autistic. The last 15 years or so, I kept trying to push through’ in situations that were incredibly stressful, disorganised, I was actively bullied etc.
I have been burnt out and no longer able to ‘push through’ for the last few years! I am suffering from multiple health issues and I now understand why.
Anyone who tries to tell you that you need to ‘try harder’ is not even worthy of breathing the same air as you! Trust yourself and don’t let others make you feel bad because you experience things differently xx
Having experienced the everyone else knows what's going on and what to do, and the confusion of how does everyone know and I don't? It have the effect of making one feel more of an outcast, especially when asking for help and being ridiculed and humiliated in front of everyone, it just makes ya want to disappear, hide away for the rest of your life.
It makes me feel like I'm crazy. How does everyone just know?! I'm not stupid I swear, I actually think my IQ is pretty high but it feels as if whenever someone looks at me they think I'm the dumbest person alive.
No, it's worse. I think people can tell that I'm smart so they are extra confused when I can't grasp these things. Their solution usually is to tell me I'm overthinking things and confusing myself. I'm not. I'm just genuinely confused and trying to figure it out. For some reason the information that just appears in all of their heads, doesn't appear in mine.
I suffer from background noise issues too. I was at the job centre once and the advisor was talking to me and I couldn't hear a single word he was saying. I had to say I can't hear you because it is too noisy in here can we go somewhere quieter.
I call it background deafness.
Edit: Congrates on 10k subs by the way.
"i cant" - appears to make people uncomfortable. i was saying it today to the pharmacist as i had ALREADY taken a big hit simply by going out to the pharmacy and sitting for 40 mins waiting. I am mostly housebound and for good reason. he didnt get it at all and instead of waiting the 10 more mins and risk a full meltown in public, i ran off. i couldnt wait 10 more minutes. its as though saying "i cant" somehow reflects poorly on them? (not sure exactly) but it is silly because thats not at all true, but pprobably does become the truth if they are behaving in a less than welcomed way in response to stating your limitations (i cant). i super relate to all you said tho, thx!
The expectation to "push through" is so prevalent and I have internalised it so deeply, that I am now as much to blame for my current year long burnout as anyone else.
This is not an expectation that society places on visible disabilty.
I also have "invisible" physical disabilities and I've fucked my body too by trying to push through.
The only solution is to learn to advocate for myself better and I'm really trying but (even my closest) people act like I'm suddenly just not trying. Which is bad enough without me, on some level, agreeing with them because "I used to be able to do x, so why can't I now?"
The inherent internalised ableism of high masking autism is killing me.
It's probably not your fault that people aren't answering your questions. I get the same problem sometimes. Some people are worse than others. They make assumptions about what you're saying instead of just focusing on the actual words. It's really obvious when you ask a question that requires a "yes" or "no" answer, and instead you get a paragraph with neither. Sometimes I can infer the answer in that paragraph, but more often I can't even find a hint. Maybe they're trying to anticipate my next question and failing. Sometimes I repeat my question verbatim and get the answer I was looking for. It's kinda funny.
I have trouble hearing through background sound too, but I don't have people blaming me for it (unless I'm even more dense than I thought). Either you're running into more a$$holes (I hate the algorithm) than I am, or I'm somehow intimidating them into being more polite. Usually saying, "I don't hear well. Can you say that louder please?" is enough. Sometimes I have to repeat it. That therapist trying to give you therapy in public is a definite moron if you ask me. That should always be private. I think I'd have reported them. It is isolating. I can be at a restaurant with friends, and though they're not even 5 feet from me, I can't hear what they're saying to each other. I try to listen as I eat, and if the mood strikes me I'll interrupt with, "Was I meant to hear any of that? It's too loud in here for me." I don't expect anyone to think I'm rude for doing that. On the contrary, it's thoughtless of people who know me and my issues not to speak loud enough, and it'd be more than rude of anyone to resent my question.
One of my best friends is an autistic Expert by Experience for the charity, Grapevine, primarily for the NHS.
We both agree with you that it shouldn't be necessary to phone the doctor when you need an appointment.
“We wouldn’t diagnose it if I could just push through it.”
Damn. This is such a good way to put that. Thank you for sharing
This isnt massively useful but it does make me feel better, but I've realised recently that although there are a lot of things that are obvious to NT's but not obvious to us, it also works the other way around. Lots of things go wrong for me socially that have to do with the way I speak, but at the same time there's a bunch of things that I realise are just not going to get across to them on a fundamental level, because they just are unable to notice the things I notice, or see how things relate or the patterns I'm life. When something's obvious to us we don't feel the need to explain it, the obvious thing is understood almost unconsciously, so unless we are put into situations where we have to deconstruct our words and beliefs we don't tend to even know how to articulate that thing, and take its existence in our lives for granted without ever thinking about how or why it is. We ask NT's about things which are so obvious to them that they don't even think to explain it, it doesnt occur that we could be asking them about that things, I believe that because they haven't thought about it they too would have difficulty articulating themselves (outside language processing speed).
As autistic people we are constantly pushed into scenarios where we have to explain things which are obvious to us to NT people, finding ourselves trying to come up with numerous ways to say one thing that are unnatural to us, but unable to pinpoint why it isn't obvious to the NT. We are more likely to be seen as stupid because of this, because the NT point of view is the default, and what a NT doesn't get something it's because that thing doesn't make sense objectively. It's like talking in analytical academic language to someone who speaks only in art speak, or speaking the way the bible is written to someone who only understands satire. I hope that makes sense. Everyone thinks their view is objective, the only way to understand things, however as autistic people we are aware of this dissonance between our experience and NT experience because we are constantly faced with it. NT's are never challenged to reword or analyse their words, so they are not aware that their view of things isn't objective. They don't need to think about why something might not be obvious to us.
Anyway a bit convoluted, but I thought I'd say it since it helps me not to blame myself every time NT's dont get what I'm saying, or when I don't get what they're saying.
You're talking about privilege, and you're right. The person who has it often doesn't even realize it. That's just how it works.
if NT's would put a tenth of the effort into understanding ND's that we put into trying to understand them that would sure be something! the double empathy struggle is real...they could at least try!
my sister usually drives me around on my errands but she was out of town and i needed to go to the bank, the medical dispensary, a dollar store and grocery. on foot about 7 miles total in 87 degree weather. somehow decided that i could do this myself but boy was i wrong. i managed to get all the stuff done (while not having food or medicine) but i just collapsed the moment i got home and could barely functiion for 4 days after. i keep pushing up against what i need to do, what i am expected to be able to do, and what i can actually do without a meltdown/shutdown. this world seems designed for a very specific type of person and that person is apparently not me. love all your videos! i'm rooting for you!
I feel like that is SO MUCH to do in one day on foot in a place not designed for walking though, I doubt many people would manage that in one day without a car! I’m rooting for you too! 💕💕💕
As someone with social anxiety and autism: it is possible for some people to get better at this stuff with practice and desensitization (to the stress and anxiety). But then again it took me a huge amount of effort over many years, and I am still only good relative to mostly other people with autism. I am glad it is a skill I developed, but after I found out I had autism as an adult was the first time I noticed that not only acquiring that skill was stressful, but using it is still stressful. I still miss cues especially if my focus is on something else.
On one hand it is probably a big reason why my support needs are so low, but on the other hand I am not always 100% sure it was worth it.
Anyway, it doesn't cure the problem because it is a form of masking, but the cope that gets me through the most is roleplay. I am not doing the thing, I am an actor pretending to be a person who can do that thing confidently. Alternatively I am playing a video game and the next mission is to call the doctor and make an appointment. And if you are in embarrassing situations enough they often stop being as embarrassing.
I hate when people say I just need to push through the anxiety and once I do it enough times I'll learn to not be anxious because like... no. My whole entire life has been me trying to push though and everytime I try it just gets worse and worse - being suicidal, developing an eating disorder, breaking bones during a meltdown, etc. and people never see these as "okay maybe you should stop", they see it as "you just aren't trying hard enough." If I try any harder I'll just be dead - but people see me not being dead as "see, you can do these things when you try!!"
If it hasn"t been said already, 🧡 dear Dana: "I need to know, exactly who and exactly where I should pay my Council Tax to. And those are the only things I need to know please."
Hoping they again do not try to "read between the lines" anything else as being meant. NTs express implications as much as the real words, eh ?
You travel by yourself to Manchester ! If i had to go to another city (in Canada especially from Winnipeg we have no train travel as easy and common as England does at all) unguided i'd get lost and surely have a massive anxiety or panic attack. Good on you !
i just can't handle strange places --- ominous and consequential ! i wish i could control that.
That's what I say to them all the time, as well ""Listen to the fucking words coming out of my mouth."
Oooh a question for your Q&A!! 🤩😄 Something that I deal with periodically and it never gets easier;
Do you also get the nightmare of Universal Credit or PIP getting back in touch, (yearly or so), for the routinely check to see if you've miraculously grown out of your lifelong disabilities? 🫠
The PIP renewal process and the Capability for work assessments from DWP are traumatizing every time. Do you have these too and if so, how do you manage going through it all again?
Great video again Dana! 😊 The point about needing support to access support (and the fact that it's always job focused 'support') is so spot on. It's dehumanising living with ASD in our society.
Cuddle sweet Oat man (and any other furbabies you may have) from mee!! 🤗🐾
Thank you for talking so openly about these struggles, it helps me accept my needs and my brain more!
i remember standing in an airport and i swear the closer i got to checking in as the queue went on the more stressed i became. even though i was doing nothing wrong! ;w;
if i didn't have a bottle of water with me to calm me i probably would have been ill and then everyone would have been staring...
*Congrats on the 10k!* and thank you so much for sharing your experiences. they are very relatable and its awesome to not....wellll feel so alone in it all.
Good topic. Thanks Dana. I often rely on others, to take care of my social needs, meaning grocery shopping, dealing with kid’s school issues, making doctor’s appointments, etc. My insufficiencies cause issues, and they keep me from advancing at my job. Dealing with the public, I’ve had cops called on me more than once, by hostile people, after I misread their intentions. I thought they were being nice, when they were actually angry at me. I adapted by adopting a stone face, when approached by strangers, and don’t drop my guard, until they smile, and I know their intentions are good.
Zoom calls are calls from hell
Also during lockdown my uni exams were online and we had to answer scan every single. Page and upload it. Each step was physically and mentally impossible and timed 😐
oh my god this video is so spot on. trying to get the answer you need, trying to get the information you’re looking for, and everyone just treating you like some kind of idiot is something I’ve dealt with for basically my whole life. even when I’m asking a question the first time people will react like I’m bothering them, and I’m so nervous to have to keep asking all these things because the answers they’re giving me just aren’t answering my actual question, so I’m standing there regretting my very existence more and more each time I have to politely ask for more information, and the whole time they’re getting more and more visibly irritated. oftentimes either they will give up with me because they’re fed up with me or I will give up trying to ask for help because I’m just not getting anywhere and I don’t know what the hell I’m supposed to ask to get the information I need. I don’t know how they all just seem to know all this stuff like magic, and it hurts how much people treat me like I’m fucking stupid just because I don’t know what they do. people say you shouldn’t be afraid to ask for help, but how can I not be when it goes like this?
6:10 I have tinitis as well, I have given up trying to follow anything that isn't isolated. I used to mix sound in clubs without earplugs😢. I can't even talk to a person at home while the TV or radio is on, I won't grasp the message at all😮
You made a very good point near the end about the unhelpful attitude of many people who don't have problems and who then judge the people that do. As you say it's great that those people are on top of everything but not everyone is so fortunate. They should be trying to help those who struggle and not assume that someone who is struggling is lazy, stupid, disorganised, etc.
The thing we need help with will sound bizarre and counter intuitive for Allistics, they ASSUME these problems are society 101 how could anyone who is an adult not know it??😹
Yeah I'm not fond of talking on the phone either, as often people think I come off as if I have a speech impediment
The struggle is real Dana 🤲🏾
Beeing at the beach feels like beeing on mars.
Sailors fighting in the dance hall
Oh, man, look at those cavemen go
It's the freakiest show
Take a look at the lawman
Beating up the wrong guy
Oh, man, wonder if he'll ever know
He's in the best selling show
Is there life on Mars?
I see the problem of "can't" as a problem of moving goal posts and sophistry, even in neurotypicals. That being that "can't" often has an idiomatic connotation (especially for non physical impairment) i,e my dad has horrendous hand wrist injuries that would stop 99%< people from typing but he can push through that someof the time. He can type, but there are consequences that mean that it is significantly harder in a physical sense. Where i have something of a phobia of writing (the irony, i know) mixed up with demand avoidance, because i my impairment is psychological (and probably neurological) it assumed by him and others that it is easier to over come. There are things that i have no problem writing and they are usually not particularly important. But the things that overwhelm me are the important things. It is easy for people to write such things off as laziness or obstinance.
I am trying to improve, but it is difficult and slow And there are many times that i "can't" write regardless of how much i want to.
Wow - you just gave me some insight. I also have huge problems with phone calls. (Also, with small print black and white papers). I always get into it with lawyers and court staff about phone calls. I didn't really think about it, but I also have to spend a lot of time scripting it out. It just occurred to me that when these Florida state courts and lawyers like Morgan & Morgan are ignoring my phone problems, they are actually violating my ADA reasonable accommodation rights because of the nature, duration, and manner in which I have to script, etc for a phone call. It substantially limits me in the major life activity of talking. TY for the insight ! I never really thought about it before, but I have the same problems with phone calls.
Critical error:social skills not found
8:47 legit I think autism is being commodified because Autism Speaks does "Workplace Inclusion".
Ember Green on UA-cam goes at length about how autism exists, like most things currently, within broader structures/systems. Idk if it sounds overwhelming, but it might be validating. :)
Also, you are giving speech to the speechless. You do awesome work, I hope you understand that your labor is greatly appreciated. Much love from so-called Missouri.
Oh, yeah, the social aspect of... everything can be debilitating. I really need to go to a GP/PCP and at this point I have an actual list of things I need from them but actually getting that appointment is immensely difficult. And in this case you can't even ask anyone to help you because of confidentiality.
I also hate how everything goes absurdly faster when you make a phone call, setting up an appointment with some organization/doctor/etc. can take literal days over email, meanwhile - for people who can make calls easily - it's a 5 minute thing
You can nominate someone to advocate for you and the confidentiality thing is then null and void when it comes to the particular person you've nominated. You just need to give your GP written permission for this person to act on your behalf/be involved. It works that way in the UK but, of course, I don't know which country you live in.
@letsrock1729 it also often just doesn’t work, I’ve done this multiple times and it hasn’t been registered/used once
@@DanaAndersen That's awful. Sounds as though I have just been lucky with this then. Which is surprising, as my GP surgery has been/still is absolutely useless in so many other ways.
@@letsrock1729 Ok, so, I'm not in the UK, no, and it's a little different here. First of all, I don't actually need someone to make decisions on my behalf, that's kind of a complex matter anyway, I'd need to get that notarized and stuff. Second, I _can_ let someone have full access to my medical information at a given provider. Note I said "at a given provider" - I really like that my country doesn't have a centralized patient database like some places do, because that risks discrimination or mistreatment on the basis of autism/gender/mental health/addictions/etc, You can keep that secret this way. The crappy part of it is you need to do admin stuff from scratch ever time - that's where the problem starts, I would need to _go to the clinic_ and make a written declaration and _then_ the person I nominated can have access. So, at this point, I'm already there, why not ask my questions and set up an appointment while I'm at it... Third and last thing: say I have already made that declaration because I've been to that place before. It may be that someone calls for me and tries to figure out something on my beha *BZZZZT* the receptionist doesn't know they have my permission and would need to look it up in their IT. Sometimes admin staff doesn't know who can do what exactly and will err on the side of caution - it's better to mess up a phone call than it is to break the law. Usually mental health practices are better about this, because - I assume - they get a lot more patients who don't do great with this stuff
The worst thing is when you're trying to explain to someone why you find an aspect of socialising difficult and they hit you with the "stop using autism as an excuse" like !!!!?!?! I WANT TO DO THE THING BUT ITS IMPOSSIBLE FOR ME. I swear, autistic people get called unempathetic but NTs who say stuff like this lack any ability to empathise with people who literally have a DISABILITY that affects their ability to socialise.
Thank you for putting words to your experience because it mirrors my own. Asking for specific help and always being given something else as if it’s what I asked for has led me to just stop asking now, if I can do it it doesn’t get done.
I can relate to a lot of these.
Background noise issues is a big one for me. Also I have always struggled in large groups where everyone is talking. Besides the fact that socially I usually cannot think of what to say or I'm anxious, all the conversations around make it extremely difficult for me to concentrate on one conversation if I even can think of something to say.
One way to try could be: 'Could you please walk me through the steps of how to make the payment?'
I feel like that thing when NTs don’t answer the question that you are asking is more of a them problem. That doesn’t help much when it concerns something important but it can be a good way to think to not lean in too much to the medical model thinking, that being autistic means having deficits. NTs work a lot on the context and honestly that is a deficit in communication if anything. I find that in writing you can at least show how inconsistent the other person is in their communication afterwards.
In my country health services etc have to accept the way of communication that the person reveiving services chooses, so I haven’t really spoken on the phone with people other than my near and dear in the last 6 months.
I've certainly had cases where I've been given the impression that the question I've asked is really stupid and that I shouldn't have needed to ask it. The flip side of this is I worry about this happening and even though I need help I just carry on in the hope I'll work out what to do but usually that doesn't happen so I keep making mistakes. This wouldn't happen if more people had the attitude that "no question is a stupid question" and realised that not everything is obvious to everyone.
Im 41 , late diagnosis and I agree so much with alot of your video. Great job!
I’m autistic and I can definitely see how this happens :( luckily I’ve learned a lot of communication skills from having to predict/ appease my parental figures’ feelings and then going on to develop good friendships on high school … when it comes to ‘people answering different questions than the question you asked‘ thing, and for like a workplace i find that its really helpful figure out why they think you’re asking a different question, and kindly try to fill them in on what you’re trying to get to,, this can be really tedious to come off well; but saying “oh okay, I understand this part, but I don’t understand this!” (making a facial expression that looks confused but like you’re trying to understand what they’re saying in a positive way) can be a good start. after a while you can start pick up on where miscommunications are likely to happen before they happen and eventually learn to prevent them.,., I think it’s important to make the person feel like you’re on their side; it’s hard to tell someone that they misunderstood you, so you kind of have to frame it in a way that prevents them from feeling insecure or anything 😅 I hope that helps I feel like I used way too many words
Hi Dana. I hope you're well, and no riots in your area are distressing you. 👍
Congratulations on 10,000 🎇
Can't remember if I congratulated you on the 10000 subs last vid so congrats!!!
Congratulations on 10k subs!
I love your cat
Last night I said these words to my girl...
I sometimes have similar issues with asking people things.
One thing you can do is try to ask closed-end questions instead of open-end questions. E.g. if they don't understand the question "How am I supposed to pay it?" you could start asking things like "Am I supposed to send the money to their bank account? What is the number of their bank account? Do I have to go there and give them the money personally?" Something like that.
Sometimes it's not your fault, if people don't grasp your question. 🤷♀️
Not answering questions appropriately is sometimes also used as a means of intimidating or even bullying the other person, e.g. at some workplaces. It's meant to show you their disrespect and to make you feel stupid and like a piece of shit. If that's the way, communication repeatedly works at a workplace, I'd suggest trying to try to get out of there asap. This kind of treatment is only going to make you sick.
I have to think of those dozens of situations when entering rooms, where they was some tremendous buzzing or whistling noise in the room, and I thought "How can anybody stay in this room for more than one minute or even work in it or talk to customers?" (I think they must have lost customers with that noise going on.) And they didn't even seem to realise there was a problem.
Having got older and being 63 now, this issue has improved, because I don't hear very high frequencies so well any more. 😅 It's one of the advantages of getting older.
But still - last year my boss put up a device to keep the mice away. Whenever somebody stepped outside, it started making a hell of a racket - a loud high pitched whistle. 🤯 Apparently the frequency is above what the human ear can detect. I complained to my boss, but he didn't understand, what I was on about. I asked my younger colleagues, and they confirmed, they were able to hear it as well, but it didn't bother them quite so much.
A couple of my clients also asked, what the noise was. They were clients, who were also neurodivergent.
I repositioned that device for the mice, so the alarm wouldn't go off any more. My boss wouldn't have been able to realize, because he couldn't hear it anyway.
1:11 all the time!
So many arguments because of this😮
OMG dude, 5:52 , did Chuck McGill have autism??!! Fuuuuu i cannot even rn . Imma have watch BCS again now yes!
Still love the pillow
Dana ❤❤❤
i feel you
4:37 yes😢
Random but it would be supes awesome if it were normalized in society that we could just like hand people a piece of paper with what we need them to interact with spelled out in very intricate detail and it not seem like a bank stck em up...🤷♀️🤔
Also... why for can we not just like speak in emoji?😏😁😎
I think it would be alright to do that in most situations, at least where I live. Certainly not "normal", no, but if you need someone to do something for you, you could do it. Or maybe I'm not understanding what you mean
3:21 I don't miss context, I have completely different context from the same situation. Even if I "got the context" if would make no sense to me.😮
Question for the Q & A: What's your favorite episode of Doctor Who and what is it you love about it? If that's too difficult, what is one random episode that you like a lot?
You can go through your Universal Credit contact to get someone registered as your appointee.
Are you Dana?
She looks 18 and 80 at the same time