Autistics Speaking Day, belated.
Nov. 3rd, 2010 10:21 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
catsidheI thought I'd give this a miss, mainly because I didn't think I had anything to say. But having a look at what other people have said, it turns out that I do.
Autistics Speaking Day was on Nov 1, but the fallout is only happening now, because it's Nov 1 somewhere for 48 hours. It was set up as a reaction to Communication Shutdown, where lots of famous people paid for the privilege of not twittering for a day. This was meant to give NT people a taste of what it's like to be autistic.
Here's what I have to say about that: It's bullshit.
For a start, it's patronising. By voluntarily doing it for a day, you do not know what it's like to be that way every day. Don't get me wrong, it's nice to know that you care, but don't pretend that it gives you any insights. For that you would have to actually listen to what an Autistic person tells you, which you can't do if you've turned off your internet.
And it's doubly patronising because it's exactly wrong: it's what autism looks like from the outside. The problem for autists isn't silence: indeed, that's usually where we're most comfortable. Our problem is not enough silence. Our experience is of overload, of too much feeling, too much sensation, and not being able to make any sense of it.
So to that extent, if you want to experience what it's like to be on the spectrum, try this:
Turn on all your lights, until it's too bright, until it hurts your eyes and gives you a headache. Don't turn it off or down, no matter how much you want to, because it's usually NT's comfort levels which are the defaults. I don't get to turn down or block out the blinding fluorescent lights at work just because I need to wear sunglasses indoors. And I don't even get to do that, because polarisation means I can't see my monitor. Believe me, if I could wear sunglasses at my computer, I would.
Turn on at least three radios, all tuned to different stations. Make as many as possible to talk stations broadcasting in languages you don't speak. Turn them all up. Again, NTs don't stop yelling at each other in the open-plan cube farm just because you're overloading. If you think it will help, you are allowed to put on headphones and try to drown out all the other noise. Remember thatif when someone demands your attention, you must remove the headphones. You may not turn down the radios. The other person doesn't notice them. It's your job to make sense of what they're saying over the din. If you can't, it's your fault and your problem.
Find an item of clothing which irritates you, which is itchy, or is too tight, or falls off, or has a tag made of sandpaper and chilli-oil, or all of the above. Wear it next to your skin.
Have people act unpredictably around you. Their behaviour should be surprising, and without comprehensible explanation. They should sneak up on you, make baffling demands and be upset when you don't understand, get annoyed when you can't keep track of who wants what, or make sense of them over the lights and noise. They should stand too close, or shout at you from the other side of the room. They are comfortable in the light, they can't hear the noise. They don't notice that they're SHOUTING! ALL! THE! TIME! (Or failing that, they're all whispering.) But be assured that they will notice if you raise your voice to match their perceived volume, so that you can hear yourself over the din.
Think of every interaction with another person as a job interview. Every interaction, with everyone. Your wife, children, parents, friends, the checkout chick, strangers in the street, everyone. Everyone is judging you on things you don't understand, and they all have lists which you aren't allowed to see. You must always be as alert as you possibly can be whenever talking to another person, because you never know which bit will be important, which innocent phrase will cause a frown and a black mark against you. Or why. Again, they're fine with it, so your nervousness and anxiety is just something else wrong with you. Maybe it would help to talk about it? (Well, why wouldn't you talk about your personal problems with the CEO?)
Have people get annoyed with you when you plead for some time alone in a quiet dark place. They don't notice anything wrong, after all. Your request for the lights to be turned back to comfortable levels, to find a place away from the radios, to not have to be consciously watching every single word you say, to not have to filter meaning from a confusing maelstrom of randomness, is an imposition on them. If they do begrudgingly grant you a few moments, be grateful for whatever few moments you can steal. And know that any respite, no matter how short, will have to do, will have to be savoured, because you will be dumped back into the chaos, and what are you complaining about, you had some time off, you malingerer! You don't get to say when you've recovered. Or if. And for even more fun; be trained like Pavlov's dog to expect that reaction, even if the person you're with is perfectly reasonable and sympathetic, so that you stop even asking, so you just put up with it until you snap and meltdown.
Now think about living like that all the time. Indeed, of spending most of your life thinking that this continual anxiety and confusion and incomprehension and distress is normal.
It's not the same for all of us, obviously. Some of us are high-functioning, such that the lights are just uncomfortable, and the radios annoying. For others, the radios are deafening, the lights blinding, no sense can be made of anything, and the world is made of confusion and pain and fear.
Autism is not about silence, not for the autist.
A day of silence would be bliss. And using silence as one of the things wrong with being on the spectrum is a massive display of Missing The Point. It's what NTs see, it's not what we experience.
So... yeah.
ETA:
PS. Do all the above without losing your temper.
Autistics Speaking Day was on Nov 1, but the fallout is only happening now, because it's Nov 1 somewhere for 48 hours. It was set up as a reaction to Communication Shutdown, where lots of famous people paid for the privilege of not twittering for a day. This was meant to give NT people a taste of what it's like to be autistic.
Here's what I have to say about that: It's bullshit.
For a start, it's patronising. By voluntarily doing it for a day, you do not know what it's like to be that way every day. Don't get me wrong, it's nice to know that you care, but don't pretend that it gives you any insights. For that you would have to actually listen to what an Autistic person tells you, which you can't do if you've turned off your internet.
And it's doubly patronising because it's exactly wrong: it's what autism looks like from the outside. The problem for autists isn't silence: indeed, that's usually where we're most comfortable. Our problem is not enough silence. Our experience is of overload, of too much feeling, too much sensation, and not being able to make any sense of it.
So to that extent, if you want to experience what it's like to be on the spectrum, try this:
Turn on all your lights, until it's too bright, until it hurts your eyes and gives you a headache. Don't turn it off or down, no matter how much you want to, because it's usually NT's comfort levels which are the defaults. I don't get to turn down or block out the blinding fluorescent lights at work just because I need to wear sunglasses indoors. And I don't even get to do that, because polarisation means I can't see my monitor. Believe me, if I could wear sunglasses at my computer, I would.
Turn on at least three radios, all tuned to different stations. Make as many as possible to talk stations broadcasting in languages you don't speak. Turn them all up. Again, NTs don't stop yelling at each other in the open-plan cube farm just because you're overloading. If you think it will help, you are allowed to put on headphones and try to drown out all the other noise. Remember that
Find an item of clothing which irritates you, which is itchy, or is too tight, or falls off, or has a tag made of sandpaper and chilli-oil, or all of the above. Wear it next to your skin.
Have people act unpredictably around you. Their behaviour should be surprising, and without comprehensible explanation. They should sneak up on you, make baffling demands and be upset when you don't understand, get annoyed when you can't keep track of who wants what, or make sense of them over the lights and noise. They should stand too close, or shout at you from the other side of the room. They are comfortable in the light, they can't hear the noise. They don't notice that they're SHOUTING! ALL! THE! TIME! (Or failing that, they're all whispering.) But be assured that they will notice if you raise your voice to match their perceived volume, so that you can hear yourself over the din.
Think of every interaction with another person as a job interview. Every interaction, with everyone. Your wife, children, parents, friends, the checkout chick, strangers in the street, everyone. Everyone is judging you on things you don't understand, and they all have lists which you aren't allowed to see. You must always be as alert as you possibly can be whenever talking to another person, because you never know which bit will be important, which innocent phrase will cause a frown and a black mark against you. Or why. Again, they're fine with it, so your nervousness and anxiety is just something else wrong with you. Maybe it would help to talk about it? (Well, why wouldn't you talk about your personal problems with the CEO?)
Have people get annoyed with you when you plead for some time alone in a quiet dark place. They don't notice anything wrong, after all. Your request for the lights to be turned back to comfortable levels, to find a place away from the radios, to not have to be consciously watching every single word you say, to not have to filter meaning from a confusing maelstrom of randomness, is an imposition on them. If they do begrudgingly grant you a few moments, be grateful for whatever few moments you can steal. And know that any respite, no matter how short, will have to do, will have to be savoured, because you will be dumped back into the chaos, and what are you complaining about, you had some time off, you malingerer! You don't get to say when you've recovered. Or if. And for even more fun; be trained like Pavlov's dog to expect that reaction, even if the person you're with is perfectly reasonable and sympathetic, so that you stop even asking, so you just put up with it until you snap and meltdown.
Now think about living like that all the time. Indeed, of spending most of your life thinking that this continual anxiety and confusion and incomprehension and distress is normal.
It's not the same for all of us, obviously. Some of us are high-functioning, such that the lights are just uncomfortable, and the radios annoying. For others, the radios are deafening, the lights blinding, no sense can be made of anything, and the world is made of confusion and pain and fear.
Autism is not about silence, not for the autist.
A day of silence would be bliss. And using silence as one of the things wrong with being on the spectrum is a massive display of Missing The Point. It's what NTs see, it's not what we experience.
So... yeah.
ETA:
PS. Do all the above without losing your temper.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
(no subject)
Date: 2010-11-03 01:46 am (UTC)(no subject)
Date: 2010-11-03 01:47 am (UTC)(no subject)
Date: 2010-11-03 08:12 pm (UTC)(no subject)
Date: 2010-11-05 01:31 pm (UTC)Thank you thank you thank you! My 15-year-old goddaughter has recently been diagnosed with Asperger's (she coped at one school, and there was Other Stuff going on in her family; then she changed schools to somewhere modern, bright and noisy and she just went into panic/lockdown mode...suddenly there was a diagnosis and all of us going "bwuh"?); and so trying to find some way in to understanding where she is and why she can't deal with stuff *even though she seemed to in the past* has been tricky.
This is the first coherent, relevant thing I've been able to find written by someone whose personality traits remind me of Sarah. this really really helps.
Especially understanding things like: "but how can she come to my loud soprano concert and actually appear to enjoy it?" and the answers we have guessed at are: she knows me and my accompanist; it was very structured and formal; I provided verbal introductions and full written translations for every piece; everyone was quiet except for me and the pianist; it was one voice and one piano; the post-concert affair was extremely sedate with cups of tea. would i be on the right track here?
Seriously, this is great. So at social things, she isn't standing there silently; probably she's standing there *gritting her teeth*.
(no subject)
Date: 2010-11-05 09:36 pm (UTC)I love music, especially Bach. And if that's all I can hear, I happily get lost in the interplaying voices of a toccata. I think Pergolesi's Stabat Mater is the best piece of music written for voice ever, narrowly beating out Spem in alium.
But two conversations at the same time breaks my brain. I can't hear either one over the other unless I really concentrate, and if there's background noise, or there are three or more conversations going on, forget it. But it's worse than that: there are still words in there, and my brain can't stop trying to extract meaning from it. But it can't, it simply doesn't have the capacity. There's not enough structure to grasp. It's like compulsively trying to lift a weight that's too heavy. Not only does it not work; if you only exhaust yourself in the attempt, think yourself lucky. This is where I usually withdraw in an attempt to lock out the chaos, close out the inputs until there's enough to deal with. Sometimes I have to stick my fingers in my ears until I get myself together.
Before I even knew that it was another symptom of AS, I knew myself to be Demophobic. I hate crowds. Chadstone is Hell. It's not the presence of people per se, it's the unpredictable, milling mass. They're everywhere, they're always moving, there's action in every part of my field of view, and worse, they're coming up behind me, bumping into me, I'm in their way, they magically appear next to me, ... I get the powerful urge to just freak out and flee.
I don't always mind parties, especially if I know enough people there, but even then there are times when I just need to find somewhere dark and quiet and lonely for a while. And that's not even taking into account that conversation is hard, it takes effort in its own right, and most small-talk makes little sense anyway. Unless the subject is a perseverance of mine, in which case you will have difficulty shutting me up.
I think describing the Aspie experience has become a perseverance for me... let me know when I've said too much.
(no subject)
Date: 2010-11-05 10:10 pm (UTC)(and FWIW: most of the people I know, Asperger's or not, hate shopping centres with the fire of your apocryphal thousand burning suns, and for exactly those reasons...so maybe people *just aren't meant to be be in these places*, but for people with Asperger's it's a kind of SPECIAL HELL.)
I shall think upon your words. And then try and think of things to help Sarah. I was researching musician's ear plugs last night on the internet: would these be something? If it still lets you hear but turns the volume right down, they might help her a bit with school...? It won't help with the 'more than one conversation' thing, but the noise level irritant may be reduced. Also, she wears glasses, so what about transition lenses? My mother wears them and swears by them. Anyway.
(no subject)
Date: 2010-11-05 10:51 pm (UTC)Many people hate shopping centers, and with good reason, but most of them don't have to fight the urge to get their back to a wall and shut down, or else freak out completely and GTFO now. Strangely, it's not as bad if I'm on my own. I think there's an attention threshold, and dealing with the crowds and the people I'm there with tips me over the edge.
The thing about Aspies is: when you've met one Aspie, you've met one Aspie. Sarah's tolerances and personal irritants will be different from mine. Transitions lenses certainly may be a good thing, especially in an over-bright distracting environment. Sunglasses inside tends to draw the wrong sort of attention. The earplugs might help, they might not, depending on the context. If she's particularly bad with sound distractions, as I am, then it's the distractions, not the raw decibel level, which is the killer. She will likely have trouble in a noisy classroom either way; just dropping the dB level will silence the teacher as well. Better for ignoring distractions for study, I find, is listening to music. It gives something to concentrate on, and in my case visual input overrides audio: when I get into what I'm reading, I stop being able to hear. No, really, my brain turns off my ears. The trouble is, it's harder to get into that state if I'm distracted by what I'm hearing. Putting headphones on and music I like enables me to acclimatise and tune it out, and focus on what I'm reading.
But then, maybe her brain works differently: the trick is to ask her what works for her, and see what you can do to accommodate that.
And, as well, while I'm trying to explain how my brain works differently from yours, it's hard because it's not like I can take an NT brain and an AS brain, run a diff and show you only the differences. When I have a reaction to something, I don't know whether it's normal or Aspie, or whether it's a normal reaction but with abnormal tolerances. It's taken me 36 years to get to the level of self-awareness to realise that I really do think and react differently than most people, and I'm still figuring out the (fuzzy) edges of the differences.
(no subject)
Date: 2010-11-03 03:46 am (UTC)(no subject)
Date: 2010-11-03 04:37 am (UTC)(ETA: I know it's a huge overgeneralisation to assume that your experiences are the be-all and end-all of the entire Spectrum, but I'm just thinking idly here.)
(no subject)
Date: 2010-11-03 04:39 am (UTC)I don't know what that means.
Certainly my tolerance levels and coping abilities drop sharply when I'm fatigued. Or depressed.
Absolutely
Date: 2010-11-03 07:55 pm (UTC)And people don't understand why, when I've hurt myself, the last thing I want is a sympathy hug.
Thank you for posting this, it is an excellent explanation. If it's alright I shall forward the link to some of my NT friends.
Re: Absolutely
Date: 2010-11-03 08:00 pm (UTC)(no subject)
Date: 2010-11-03 07:09 am (UTC)I've been wondering about stimulants and ASDs myself, lately.
Stimming behaviour, stimulant dependency and overuse might constitute a form of unrecognised(?) ad-hoc self-medication. A brilliant friend of mine from long, long ago who was on heavy-duty psych meds (except when he wasn't. eek) commented on the number of drug users he had met in psych institutions (it was so long ago that there were still such things in Australia) who said that the drugs they used helped control some symptoms of their mental illness. We had long conversations about the chicken-and-egg nature of mental illness and drug use, and the likelihood of post-facto rationalisations for doing things that screwed them up. But more recently I saw an article noting the high proportion of mental patients who smoke. Again, maybe due to boredom in mental hospitals, maybe due to higher susceptibility to addiction but possibly because the nicotine or the ritual helps manage their illness in some way.
The way stimulants are used to bring about more calm and focused behaviour in people with ADHD is the closest parallel I can think of to the elusive thoughts I've been having regarding ASDs and energy/alertness/strength to cope, and the frequency of co-morbidity of AS with ADHD is sort of interesting, too.
I expect that people with AS put a lot of energy into coping with things that NTs manage relatively effortlessly, so get tired. I believe that the caffeine escalation cycle that we all know and... well, know, goes from 'helpful' to 'unhelpful' to 'actively exacerbating the problem' more rapidly.
Hrm. I think I'm going to head over to the asperger's community on LJ and ask about people's experience of stimulants like caffeine.
(no subject)
Date: 2010-11-03 08:20 am (UTC)And yet it doesn't count as self-medication. The Nicotine actively binds to the receptors which the actual medication is supposed to, thus preventing it from working. He has to be brought off the ciggies hard before the meds can start working, and he stops hearing the aliens.
If it's anything, it's a calming habit; stimming. In pharmacological effect, it is the opposite of helpful medication.
(no subject)
Date: 2010-11-03 05:01 am (UTC)Except the chili embedded clothes part. More chili please!
(no subject)
Date: 2010-11-03 05:22 pm (UTC)(no subject)
Date: 2010-11-03 07:47 pm (UTC)I also like my music loud, within reason, and I love thunder. But a truck going past on the street sets me to grinding my teeth and grimacing in pain until it's gone.
The conversation in the cube farm isn't really loud, but it's there, and I can't filter it out. And I can't make any sense out of the word soup either. I can't focus on any given conversation and listen to that: I get all of them at once as a noxious soup. Occasionally one or two words will bubble to the top and be noticed, but sink again before I can figure out what's being said.
Ironically, my CAPD is my best defence: to turn up the music and get involved in the visual/written world on the screen, and after a while I can't hear anything. No, really, the auditory center of my brain figures it's not needed and switches off for a while.
And then someone needs to talk to me, and their voice is just one in the background, and unless it's quiet enough (and my standards of ‘quiet enough’ differ from most folk's), I really have to concentrate to keep hold of their voice, like catching an eel with slippery hands.
(no subject)
Date: 2010-11-05 02:19 am (UTC)But yes. exactly that.