Life would be so much easier without people constantly making random assumptions / dana_._andersen / danaoandersen ko-fi.com/danaandersen / dana_._andersen patreon.com/DanaAndersen
people vastly underestimate the state of utter confusion that autistics live in most of the time, and they also assume we're lying or not trying hard enough because we don't fit their narrow view of what disability "looks" like
I used to assume everyone went through that confusion all the time too, because I assumed I was just like everyone else! Although everyone else knew I wasn't like them & treated me differently, which I never understood either
@@lauraburystedmundsyoga8231 When I was old enough to realize I was being excluded I used to think people must be secretly psychic! That they must be communicating in some special way that I couldn't, like being born without hearing or sight but for whatever they had. I thought they must have a special code or law that meant they never talked about it out loud and denied it to anyone left out, for reasons, and it's why I could never figure anything out like they did. I was just so left out and so lost all of the time.
I feel like people just don't want to understand, we bend over backwards to blend in, intergrate etc which takes a significant toll on us sometimes, but as soon as we ask for an accommodation they act like we are inconveniencing their lives.
People don't understand that just because you make yourself do it doesn't mean doing it didn't cost you. I can answer the door to the Tesco man but I'm gonna need to decompress after
Or rather thing because it's usually things that also bother them but they do them anyway, they think that anybody doing them has to put the same effort and has the same toll on him, whereas for autistics doing the same thing that hurts a NT 10% might exhaust us to 80%
"You're so smart, you can do this, you can do that, why do you not have common sense?" Story of my life. My range of skills (anything from trivial knowledge to people skills) is so utterly disproportionate, when I'm not being straight-up called a child, I get comments like "you're the stupidest smart person I've ever met" and such. I don't care much, people conflating and drawing false equivalencies between unrelated things is a them issue, not a me issue. It's their expectations and assumptions that are wrong. As for expecting the worst, yea, I'm right there with you. "Expect the worst, hope for the best."
You are so good at articulating what it means to have an invisible disability. I love that you speak from your experience and don't try to generalize. I love watching this style of videos, where you're just talking your truth without frills and fancy editing. a rarity on RU-vid. Also I don't know how you end up with a coherent video, if I tried to do what you do I would ramble in a million directions and bore everyone including myself 🙂
I especially relate to what you said "if you can do that, then you can do it all". No, actually, if I can do that, it's because I've orchestrated my life and my energy in order to do just that, and everything else falls to the wayside just so I could "be normal" and do that one thing. If workplaces were more accommodating of what I need to not collapse, I would be able to participate. But no place really wants to be accommodating.
People insisting that I be responsible for roles and tasks I assured them I wouldn't be a good fit for directly led to the burnout that ended my ability to work. Humiliation after humiliation trying to be the extra capable person they assured me I am. The other traumas were piling up already at that point, so adding the extra demands at work broke me. Realizing I couldn't inflict the torture of working on myself one more day really closed a door on my life. It only got worse from there. Sooo many people ask "What do you do for work?" the first time they meet you in order to gauge how much respect they will show you. I like to answer honestly, I don't work, and watch the charm and interest drain from their face, watch them set themselves to their lowest socially acceptable level of politeness or even just become rude for me specifically. It's an easy way to tell if that person is worth wasting my spoons talking to, or if they'll abandon me the first time I accidentally do something "suspicious" like dinosaur arms in front of them. The distress and frustration you're communicating in these videos is really cathartic, is that weird? I hate that we have to go through this life like this. Watching you, clearly intelligent and trying to be a good person and wanting so badly to be able to live this life. And just not managing it no matter how hard you tried, like how I feel, it makes me feel less alone.
I really relate to what you're saying. It is almost funny, at this point, how many times I get asked "what do you do for work?" I haven't been able to work for most of my adult life, and people just can't comprehend it because "I don't seem autistic." They don't even believe that I can't work when I tell them I am also physically disabled and have chronic daily pain as a symptom because "I don't look disabled." I've been told so many times that I'm wasted potential, "what a beautiful, young, intelligent, educated woman you are- don't waste it!" The years I spent in university trying to not be wasted potential, not having any support, and then going through the most difficult time in my life, left me with such a profound burnout that I was bedridden for a year, and it likely contributed to my physical disability now. Trying desperately to be something I can't be left me as sick as a dog, and yet people expect me to willingly put myself through that again, when I have even less physical ability now.
it’s always “you’re so smart but..”. i’ve definitely had the experience of people just assuming that i should be able to do certain things and not understanding why i haven’t accomplished certain things but then at the same time shaming me for the things i do end up trying and not getting right but then still expecting me to be able to do it.. so it all just feels like i should be able to do things and that i’m also not allowed to ask for help. (i hope this made sense, don’t have a lot of time to try to word this properly)
A sneaky version of this comes in the form of "you have so much potential" onto a list of accomplishments or things I am able to do. Worst off, this one pops up in otherwise productive (even if still uncomfortable) conversations about support needs and derails things
How we process things much, much slower and sometimes not at all, due to the stresses of the particular environment, is just not at all understood by others. People need to listen to us when we explain what it is we need in order to have a chance of processing things! I constantly have imposter syndrome largely due to people not listening to me when I explain what I need and how I feel! ❤
Hi Dana, often us as autistic people are very good at putting our point across in great detail and we sound highly articulate so many mistake that for being highly able to take on life's challenging everyday things but its so far from the truth. people often mistake intelligence and speaking skills with having high levels of life skills. I have been hurt many times from peoples judgments of me not doing what an adult should be doing personally and managing to work and some are plain ignorant to me being diagnosed by professionals and say things like I'm fully capable but I'm just lazy and that I have decided in my mind I have a condition and I can think my way out of having the make up that makes me who I am as an autistic person.
Well, a camera doesn't look you in the eye. It doesn't require you to navigate social interaction. I can talk to cameras, too. But, I almost never answer my phone, because I can't navigate impromptu social interactions especially with people I don't know, It's like, if they really want to talk to me, they will e-mail me.
I an registered blind with moderate hearing loss and tinnitus. I can so relate to you discussing fatigue, and how doing everyday tasks is draining. People who are able-bodied don't grasp this, and yeah, when you do need a recovery day and possibly need to let someone down because you can't meet them sucks. Sending virtual hugs.
I get all of this so much. I have struggles going to the store. I have been with family shopping and need to find something and they'll be like "just ask someone" and it throws me into a panic so they'll ask for me. If I'm by myself I will look all over the store for that item before I ask someone and I'm fine with it. If I'm thrown into talking to people unexpectedly, I fumble over words and it doesn't go well. But if I know ahead of tone. I script and prepare what to say. I look so normal (I guess) but inside I'm hiding anxiety the whole time.
I had this idiot Judge, "Monica," who punished me for my Autistic traits while writing "You know better." It was such a direct Autism discrimination ! First of all, I'm Autistic, so I have a different brain than hers. Second, because I'm Autistic, I learn differently. Third, I have very spikey skills and abilities and this is VERY Autistic. But, finally, I didn't even know how to get or use a bank checking account until my Mom opened one for me when I was age 19 and almost 20. All the other kids had one when they were much younger, but not me - I had no clue.
Omg literally had a caseworker suggest I ask people I meet at my substance abuse recovery meetings for their phone numbers to practice phone calls when I'm literally having trouble speaking to her because she called me after I made a phone call 2 hours earlier and she's supposed to support me with my issue of having terrible with phone calls. Like babes it's not anxiety, my brain is literally overflowed from a 5 minute phone call how is doing that more going to help??? Glad to know I'm not alone in being frustrated with people that are supposed to help literally paying no attention to me the human in front of them and just their concept of whatever is going on in their brain
They're probably thinking "practice makes perfect". Are you at all better at it than you used to be? I used to be worse at talking to people, but I don't think I'll ever be good.
@@thethegreenmachine oh I'm great at talking to people in person, phone calls or video chats turn my brain to mush. Even writing out a literal script or knowing exactly what I need to say still make my brain feel like a wet wrung out paper towel after lol I'm not sure what I would be practicing?
@@thethegreenmachine I don't know how I'm supposed to practice my brain not turning to mush? I'm 38 I've had to make a looooot of phone calls throughout my life and still they send me into shutdowns. The point it's not something I can get better at, yet like this video was pointing out saying for me to just do it isn't helpful lol
@@allisontyler8174 In this case it would've been more like endurance training. Yeah practice doesn't always help. Everyone reaches a plateau -- some sooner than others.
The same person can have very different skill levels across activities and nowhere is this more true than with autism - autists usually have a "spiky profile" where they may be very able in some areas and extremely poor in others. It is quite possible for someone like yourself to make good videos speaking to a camera and struggle at social interactions others seem to do effortlessly. Even with making videos someone who can make very good videos on autism might really struggle if they had to cover different topics outside their interest and experience. Too many people are quick to judge and assume that everyone should be able to perform well and that anyone who doesn't is "stupid" or "lazy" or "just needs to relax / have confidence in themselves". If it were that easy to do better everyone would be doing it. Change is hard, even harder when others are so unsupportive.
💯👏👏 I have college degrees - miracle - and somehow work a job in my special interest but I can't manage the office stuff and figuring out health insurance and taxes being taken out of my paycheck. It doesn't all make sense.
I refer to myself as having medium support needs, but honestly its so hard to know what my support needs are when they've never been met. I was semi verbal up until around age 20. I can communicate clearly and mask effectively in my everyday social situations now with minimal awkwardness, but i hate speaking and always have. It doesn't feel natural to me. But even when I was small, showing signs of significant speech delays, unable to speak in full, clear sentences while my peers were having long conversations around me, it was assumed I simply wasn't trying hard enough or was faking it out of laziness or for attention. Its been like this for all of my support needs for my entire life. People see me struggling to achieve the bear minimum and will assume I am capable of doing it all and assume I am being lazy or overdramatic. I hate how people would rather believe that I am lazy or stupid than that I have a disability that requires accomodations.
I'm unsure if i am autistic but your videos make me feel very seen and like im not the only one massively struggling in the world . I appreciate you !! I am struggling keeping up with life .
It's like you ran a marathon, but you're not visibly tired, so people think you can keep on running or don't even know you just ran a marathon. I wouldn't get it either unless the person I've misjudged said something like, "I'm autistic. My brain's pretty much spent for the day." That is, unless I was working at the place where autistics go to get help. There seems to be a lack of training there. Most likely, it's just your standard government trying to get away with providing as few legally mandated services as it can. It sounds like you and your friend make a good team. You said you're always stressed out. Is there ever a time when you're not?
Hi 👋 i have to talk to alot of health and social care professionals, such as pyschiatrists/carers, etc....but even when i deal with these professionals, they assume because I look and sound normal that I dont have problems.... I think with hidden disabilities, such as autism/mental health, etc....most people don't get it. I dont think even professionals get it, sadly.
Thank you for talking so openly and honestly about your experience! I think the people who've left critical comments simply don't believe you- their empathy doesn't reach far enough for them to imagine a reality where autistic people don't fit into perfect little boxes of "high support needs" and "low support needs," when the reality is that it often varies & every autistic person needs extra support in some facet of life. Trying to cope without any support during an incredibly difficult time in my life left me bed-ridden for a year from profound autistic burnout, even though most people wouldn't be able to tell I'm autistic from observing me. There is always a huge cost for us.
I was able to say a little bit of small talk, because I spent the last 2 hours massively over-thinking every single permutation of how the little conversation could go.
my wife and i are both autistic but people fucking hate me for reasons i just don't know becuase they don't tell me. i'm glad they love her but she's ended friendships because her friends have been abusive and awful to me, which of course i'm extremely grateful for but like... why do they hate me? i have no idea
@@Catlily5 i just treat people with the same respect they show me so if they're rude to me then i'm gonna be rude to them. i always give people the benefit of the doubt though, i'm never going to be rude to someone as soon as i meet them, but i've had so many people be outright horrible to me for no reason.
@@aubigney Fair enough!. In my case some people think that I am rude when I don't even mean to be. But you might be having a completely different issue.
@@Catlily5 i'm sorry you have that reaction! i know that some autistics have the same problem, and it's always so frustrating to me when people misunderstand me.
All I can say is ditto. Your openness and honesty is refreshing and you are helping me to validate my condition in a way I haven't experienced before. It seems that professionals are set on invalidating our condition and 'normalising' our behaviour, which to me is a very Victorian process and does more harm than good. I am 3hrs into planning a shopping trip, 2hrs to go. I'm rural so I have a half hour walk to bus stop and a 25 min bus ride. 2 1/2 hrs till next bus home. In all a 4hr round trip for a loaf of bread, some milk and veggies. I'll be good for nothing tomorrow. I could move but that would be the 32nd move I've made. I just crave stability and simplicity. Thanks. 🧔 👍
I have had people yell at me for not having a job. Even my boyfriend asked me why I wasn't working. Later on he figured it out. I had 2 jobs when I was 18 and one yelled at me non-stop for doing things too slowly. The second one they liked me but I went to the psych hospital. I went to the hospital too much to keep jobs and my executive functioning sucks. I can't even keep my house up enough. Especially since I have a physical illness as well.
Thank you for your videos! I don't have autism myself--I've got BP and some fun comorbidities/chronic illnesses, and I know that's totally different--but it just means a lot to hear about other people's experiences and learning about similarities and differences. Like the whole thing of "if you can do this, of course you can do [x,y,z]" and it's like, absolutely not--I was able to do [insert major people interaction] because I planned EVERYTHING out before hand and everything afterwards knowing I'm gonna need literal weeks to recover. And the processing things differently is SUCH a big thing for me too, not to mention the "oh my god I've been talking for too long" thing as well. So yeah, I relate a lot! 😅 But anyway, thank you for sharing your experiences!! I know every autistic person is different but what you talk about has also been really helpful for me when it comes to understanding stuff about my autistic friends as well! 😊
Even if you could turn in a video instead of pip paperwork, it’s not like you would know exactly what to display in your video to argue your case for what your needs are and why, adequately for a random person to understand who may or may not understand what autism really is. The general public’s understanding of disability is abysmal.
Hi I can sometimes debate. Took me years. However at the moment I am once a month attending a local government project meeting which looks into issues for support etc for various people. There might only be 8 people there. It lasts 2 and a half hours. However the noise makes me ill even though only 8 people talking in turns. The last time I have decided I won’t be able to keep attending. One leader said they need me because of my contributions. As such I will feel guilty. But the noise made me quite ill. I have bought some Loop ear plugs but they don’t seem to help. Have tried other types. They did not help. I have some noise cancelling headphones. I can hear some talk through them but will feel silly sitting with them on. Will give it a go and explain. Also there are many other things that stop me from working. I have recently been diagnosed with Functional Neurological Disorder. The Neurologist said it is common with Autism. He said there is no treatment. Also there are other things that limit me even though I have degrees. It can seem like I can do stuff with small snapshots of my life but small does not represent always or often. So much can appear OK or generalised from with a person.
On the paperwork not making sense thing... it DOESN'T make sense. It literally doesn't most of the time. It's a bunch of bureaucratic nonsense that not only doesn't make sense, PAPERWORK ITSELF is nonsensical to me 99% of the time.
I really like you Dana! 🪼you make such important Videos, thanks for expressing your perspectives! I am not autistic but have adhd (with some add ons) and you voice so well what a neurodivergent experience can be like from the inside, in a neurotypical world! I am learning so much about autism thanks to you!! You are wonderful „I can‘t help the way that i think“- i felt that so deaply
I’m totally with you on these experiences Dana. Especially paperwork and not understanding it, and not realising something bad happened until 10 years later. I couldn’t even make the first steps to making a video though. I can’t even do a voice note.
Dana, fyi, at 5:42 what (in my, still ASD, opinion) you were experiencing was a SCAM, being emotionally pressured into something; being 'MUGGED' implies a threat of violence, aka a baseball bat, firearm, etc. like in the movies... that cliché line : "gimme your cash or else...." kind of thing. Love your straight talking, good ideas, and Yes, I get you, you aren't alone, my week is planned on a calendar at least two weeks in advance, if practicable, so not only clothes to wear, but thoughts of why I am doing something, or going there, can be mentally processed, just like any actor, etc. it's a professional job because of the hours of preparation beforehand and thats why asd is one of those "invisible" or hidden disabilities; we look normal, so everyone else ASSUMES we are, but, they don't have a clue how our week has gone, sensory wise; we have 6V batteries!, not 24 or 48V, so what power we do have, Must be used carefully and constructively, and at the end of a day, we, like all battery operated devices NEED a recharge, before we can go back to 'normal operation' again.
Like he didn’t say “or else” but also moved to fully block me from going anywhere but to the cash point, so I do think if I’d tried more to leave/been less awkward there would have been a threat of violence 😅
dude, don't put FYI, and then try to 'correct' her, that's very condescending, and the action of not letting her leave until she gave him money is in itself a legal act of aggression and does count as a threat and so IS a mugging .... FYI (see what I did there? come on)
@@WitchPaper1 I have Autism..... ergo, we have this exact issue, we have trouble reading body language, and written, esp. in ascertaining what is subtly meant by peoples words... a pure misinterpretation on my part.
This describes me and my experience so much. I have often thought that i wished my autism was “worse”, so I could actually get some help. I have finally gotten help in form of a lady who comes to my Home and help with letters and calling places and just general support wich is Nice. 29th of May I am going to a meeting where I Will hopefully be granted an early pension after almost 10 years of showing that nope I still cant work like everyone Else even 2 hours a week is too much for me.
