It’s hard that “spontaneity” is considered so great and fun but it’s not fun for me. I’ve been picked on for being inflexible. But I don’t like sudden changes to my schedule and having my routines disrupted.
Not having a clue about something that's going on socially, and feeling like there is no way to begin to understand it, because people don't like being honest about that kind of stuff. So you don't learn from it. You can't learn from it, and these situations happen over and over. If I am in a group for a long time, I will eventually get better at navigating that particular group, and sometimes what I learn there can be applied to other situations. I find that my neurotypical friends have absolutely no idea what I go through. They think I'm smart, and just assume that I can read a situation intelligently. I can't, and there are lots of repercussions, not the least of which is losing friends. I think they misread my "direct, blunt" style of communication as some kind of choice--a poor choice. But It isn't a choice; it's the only way I know how to communicate.
My least favorite thing about being autistic is probably my inertia lol. It can be so hard for me to start something, but once I get going then I can't stop until the thing is complete. Which is sometimes a GREAT skill if I'm working, but then it's just so silly and inconvenient when I need to do something like get up and brush my teeth
The thing about the lights in recent public buildings is crazy. What do you mean you can't adjust it ? I have been at a relaxation activity where there was guided meditation in a psychiatric institution and they don't have the means to adjust the lights, it's incredibly stupid with all the norms they have to account for, they can't have a switch for each room. Lay down and shut your eyes and try to ignore the fluorescent lights burning through eyelids.
I’m inclined to think that you’re just getting blown off, when told that there’s nothing they can do. . . Unless we start speaking up/self-advocating, crap like what you’ve so beautifully described above, will continue to be the “norm”.
I love that !, "I can't physically be in here" and I totally get that ! It's the same for me. But not just bright lights - also loud noises, too much speech, and hundreds and hundreds of food (even on people's breath and clothes) and chemical smells !!!!!!!!!! I can't physically be in those places and experience a survival reaction I have to get out ! Immediately !!
I definitely understand the aversion to bright lights. I had an appointment at a job centre where they'd asked me beforehand if there were any accommodations that I required, so I asked if the appointment could be in a separate room with the flourescent lights off. It ended up being at a brightly-lit desk in the middle of the office with about six other conversations going on around us. They said what I asked for weren't the sort of accommodations they meant. I agree with so much of what you said, but the unnecessarily bright, overstimulating public spaces make me feel physically sick. Thanks as always for the video. Toby
The world isnt built for us, but I think you are doing great all things considered. I dont regret being autistic either. Its not all roses and happy rainbows, but we have to do the best we can until society catches up and acceptance and understanding are widespread.
Last two are definitely my least fav, society makes it so hard to exist as a autistic person and communication is way too hard and it's getting harder in this modern age >.
That about sensory issues reminded me how visual noise disturbs me. I've had a whiteboars out with some writing on it to remind me of things to say, but having it out for extended time disrupts my mood so much it becomes useless. In this sense I'm a mininalist. But I have ADHD too so if I remove something essential then it's gone forever, so if I keep a bunch of stuff then I can randomly find things and try a use for them which adds to my life structuring.
They couldn't turn the lights off. I am a piano tuner, and I was tuning in an old age home , and they couldn't turn off the piped music. So I had to try to focus on single very faint overtones, while this loud, awful music was going on. I needed the money, so I did it, but talk about exhaustion. Another time, I tuned a piano that was part of an art installation. They had underwater whale sounds that they couldn't turn off. The whole thing was so spooky that it was at least interesting.
The glaring bright lights thing -- I have blue eyes, so can see better in low light and the dark, whereas my husband does not have blue eyes and is blinded by low light and the dark. So, in my areas where I most hang out in the house, I have low light and it dark which is comforting. In his areas, he has every single bright light glaring, so many bright lights it would light up a football stadium. He used to come into my areas and flip on multiple bright light, and that would always cause a sensory overload and meltdown. So, eventually, he got it and left my low and no lights alone. But then, he bought some very bright headlamps to wear on his head, and they were really for the outdoors at night. But, when he stopped messing with my light situation in my areas, he started wearing his bright lazerbeam headlamps in the house and coming into my areas with it ! And, worse, if he goes to talk to me, he turns his head in my direction, forgetting he is wearing that headlamp, and it strikes me right in the eyeballs and is an instant meltdown. So, yeah, it can get really intense, and I think you have to understand, other people apparently really can't see in low light or the dark so have to have lots of bright lights. It's very incompatible with those of us who have blue eyes and see great in low light and the dark, but can't cope with bright lights in a building at all. It'a really a complete impass, and maybe the best thing for them is night-vision so as they can see but not impact Autistics with blue eyes.
Oh Lordy no, I’ve been attending a Unitarian service, and have been reading the Book of Mormon out of curiosity and a strong sense of ‘they can’t be serious’ 😅 I just sit on the couch to read and didn’t think when I stuck it back there 😂
It’s hard that “spontaneity” is considered so great and fun but it’s not fun for me. I’ve been picked on for being inflexible. But I don’t like sudden changes to my schedule and having my routines disrupted.
Not having a clue about something that's going on socially, and feeling like there is no way to begin to understand it, because people don't like being honest about that kind of stuff. So
you don't learn from it. You can't learn from it, and these situations happen over and over. If I am in a group for a long time, I will eventually get better at navigating that particular group, and sometimes what I learn there can be applied to other situations. I find that my neurotypical friends have absolutely no idea what I go through. They think I'm smart, and just assume that I can read a situation intelligently. I can't, and there are lots of repercussions, not the least of which is losing friends. I think they misread my "direct, blunt" style of communication as some kind of choice--a poor choice. But It isn't a choice; it's the only way I know how to communicate.
My least favorite thing about being autistic is probably my inertia lol. It can be so hard for me to start something, but once I get going then I can't stop until the thing is complete. Which is sometimes a GREAT skill if I'm working, but then it's just so silly and inconvenient when I need to do something like get up and brush my teeth
The thing about the lights in recent public buildings is crazy.
What do you mean you can't adjust it ?
I have been at a relaxation activity where there was guided meditation in a psychiatric institution and they don't have the means to adjust the lights, it's incredibly stupid with all the norms they have to account for, they can't have a switch for each room. Lay down and shut your eyes and try to ignore the fluorescent lights burning through eyelids.
I’m inclined to think that you’re just getting blown off, when told that there’s nothing they can do. . . Unless we start speaking up/self-advocating, crap like what you’ve so beautifully described above, will continue to be the “norm”.
I love that !, "I can't physically be in here" and I totally get that ! It's the same for me. But not just bright lights - also loud noises, too much speech, and hundreds and hundreds of food (even on people's breath and clothes) and chemical smells !!!!!!!!!! I can't physically be in those places and experience a survival reaction I have to get out ! Immediately !!
Bad smells make me retch, it's awful
I get that in shopping malls, cannot go into those things cos when that smell/sound/increase in volume of bodies happens I cannot find the exit 😵💫
The post enjoyable thing meltdown is so confusing and upsetting 😑 thank you for speaking on this, felt so alone in that.
I definitely understand the aversion to bright lights. I had an appointment at a job centre where they'd asked me beforehand if there were any accommodations that I required, so I asked if the appointment could be in a separate room with the flourescent lights off. It ended up being at a brightly-lit desk in the middle of the office with about six other conversations going on around us. They said what I asked for weren't the sort of accommodations they meant. I agree with so much of what you said, but the unnecessarily bright, overstimulating public spaces make me feel physically sick. Thanks as always for the video. Toby
The world isnt built for us, but I think you are doing great all things considered. I dont regret being autistic either. Its not all roses and happy rainbows, but we have to do the best we can until society catches up and acceptance and understanding are widespread.
I wish that autism was treated the same as other disabilities. I feel like the world understood what autism is. We are pushed about sometimes
People with other disabilities aren't actually treated much better unfortunately
Last two are definitely my least fav, society makes it so hard to exist as a autistic person and communication is way too hard and it's getting harder in this modern age >.
That about sensory issues reminded me how visual noise disturbs me. I've had a whiteboars out with some writing on it to remind me of things to say, but having it out for extended time disrupts my mood so much it becomes useless.
In this sense I'm a mininalist. But I have ADHD too so if I remove something essential then it's gone forever, so if I keep a bunch of stuff then I can randomly find things and try a use for them which adds to my life structuring.
They couldn't turn the lights off. I am a piano tuner, and I was tuning in an old age home , and they couldn't turn off the piped music. So I had to try to focus on single very faint overtones, while this loud, awful music was going on. I needed the money, so I did it, but talk about exhaustion. Another time, I tuned a piano that was part of an art installation. They had underwater whale sounds that they couldn't turn off. The whole thing was so spooky that it was at least interesting.
The glaring bright lights thing -- I have blue eyes, so can see better in low light and the dark, whereas my husband does not have blue eyes and is blinded by low light and the dark. So, in my areas where I most hang out in the house, I have low light and it dark which is comforting. In his areas, he has every single bright light glaring, so many bright lights it would light up a football stadium. He used to come into my areas and flip on multiple bright light, and that would always cause a sensory overload and meltdown. So, eventually, he got it and left my low and no lights alone. But then, he bought some very bright headlamps to wear on his head, and they were really for the outdoors at night. But, when he stopped messing with my light situation in my areas, he started wearing his bright lazerbeam headlamps in the house and coming into my areas with it ! And, worse, if he goes to talk to me, he turns his head in my direction, forgetting he is wearing that headlamp, and it strikes me right in the eyeballs and is an instant meltdown. So, yeah, it can get really intense, and I think you have to understand, other people apparently really can't see in low light or the dark so have to have lots of bright lights. It's very incompatible with those of us who have blue eyes and see great in low light and the dark, but can't cope with bright lights in a building at all. It'a really a complete impass, and maybe the best thing for them is night-vision so as they can see but not impact Autistics with blue eyes.
Do blue eyes affect how you react to light?
@@Surreally_St Yes ! Very definitely. And there are scientific studies on this !!
wait people with blue eyes can see better in the dark !? 0_0 ( I have blue eyes )
Gizmo yay
I hate it when people treat me like I'm mentally slow once they find out I'm on the spectrum.🫤
Or when they say you can't be autistic because you are not intellectually disabled.
Set dressing book of Mormon? Interesting choice. This must be what you meant when you said you'd joined 'the church'.
Oh Lordy no, I’ve been attending a Unitarian service, and have been reading the Book of Mormon out of curiosity and a strong sense of ‘they can’t be serious’ 😅 I just sit on the couch to read and didn’t think when I stuck it back there 😂
@DanaAndersen ok I am sorry, that group is just a trigger for me and I felt like I had been tricked
Thank you for taking the time to clarify