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What's it like to have autism?
May 6, 2011 7:20 AM   Subscribe

You don't understand the nuances of social interaction. Casual encounters can become an ordeal. Sincere attempts to get needed information can create problems. Even the ability to react "correctly" to an emergency situation may be impossibly difficult.

The National Autistic Society created these videos to help people better understand the obstacles faced by the autistic. Although they're not new, they are worth viewing if only for a fresh perspective.
posted by kinnakeet (81 comments total) 30 users marked this as a favorite

 
I like them all except the first one, it seems a bit off. Either the group would know the guy well enough to invite him to sit with them and not be surprised by his behaviour or they wouldn't invite him to sit with them considering the one women is going through a breakup.
posted by Harpocrates at 7:31 AM on May 6, 2011


Well, also, the "Maybe he thought you were ugly" only makes sense if the girl was potentially ugly. So even if he were just being honest, it would still be insulting.
posted by delmoi at 7:33 AM on May 6, 2011


delmoi: "Well, also, the "Maybe he thought you were ugly" only makes sense if the girl was potentially ugly. So even if he were just being honest, it would still be insulting."

But I think that's the point. Autistic people might make true (but insulting) comments without realizing that they would cause people to dislike them or be offended by them. You can try explaining until you're blue in the face why it's inappropriate and they'll just say "but she was asking why..." They feel like their answer was a legitimate option and really don't understand why someone would ask a question but only want a subset of the possible answers. In addition, it's difficult for them to determine which subset of those answers are socially appropriate versus incredibly insulting.
posted by victoriab at 7:44 AM on May 6, 2011 [10 favorites]


Obligatory Onion link.
Sorry, not to be insensitive, but this has got to be one their best tropes. And there are more on the site. The coverage of the man hit by a train is great. It's exaggerated for comedic purposes. My former business partner has Asperger's, he isn't quite this extreme. But for a while he was prohibited from answering the phone.
posted by Xoebe at 7:44 AM on May 6, 2011 [10 favorites]


the "Maybe he thought you were ugly" only makes sense if the girl was potentially ugly.

Disagree. This kid has probably memorized a rule that says something like "guys like hot women" and now he knows a guy who doesn't like this woman, so he theorizes that that guy thinks she is not hot.

His theory is about the guy's state of mind being "she is not hot". His theory is not about this guy's perception being "she is not hot".

As an autistic person, he is probably used to having to reason about states of mind but probably less able to empathize to the "maybe he sees things differently than I do" perception problem. It is certainly like this with small children. I've found that younger children are able to tell you thinks that other people know/don't know but NOT able to figure out if you can see something. For instance, small children frequently hold up a drawing they've done to have it praised but face the picture towards themselves and don't understand how to point it the right direction.
posted by DU at 7:45 AM on May 6, 2011 [3 favorites]


As an autistic person, he is probably used to having to reason about states of mind but probably less able to empathize to the "maybe he sees things differently than I do" perception problem. It is certainly like this with small children. I've found that younger children are able to tell you thinks that other people know/don't know but NOT able to figure out if you can see something. For instance, small children frequently hold up a drawing they've done to have it praised but face the picture towards themselves and don't understand how to point it the right direction.

Or, for that matter, nerd fights on the Internet. They never think to themselves "maybe this person is seeing the situation differently". They think "this person has an incorrect state of mind [after processing the same perception that I have]".
posted by DU at 8:11 AM on May 6, 2011 [3 favorites]


There are definitely degrees of autism, correct? The only person I've personally known had a severe case in which communication was at a toddler level and who was video 3 for much of the time--shaking hands, rocking, covering his ears.

I think these videos are a little misleading, in that they attempt to portray a mental condition with altered visual/aural perceptions. I'm not sure that's totally accurate (but I suppose that's a limitation of the medium.)

I've found that younger children are able to tell you thinks that other people know/don't know but NOT able to figure out if you can see something.

Too true. It makes giving birthday presents difficult, as she can't resist telling the recipient what's inside. ^_^
posted by mrgrimm at 8:16 AM on May 6, 2011 [2 favorites]


Obligatory Onion link.

This is the "maybe he thought you were ugly" equivalent for this thread, I think.
posted by jessamyn at 8:17 AM on May 6, 2011 [12 favorites]


(nevermind, I guess Asperger syndrome is now Autism.)
posted by mrgrimm at 8:19 AM on May 6, 2011


I assume the woman going on about her failed relationship in the first ad is the one with autism, repeatedly failing to take in her friend's obvious social cues that she's gone on about it enough and should shut up about, and the "maybe he thinks you're ugly" comment is just a very clever way to get her to stop talking.
posted by Astro Zombie at 8:21 AM on May 6, 2011 [8 favorites]


It's like neurotypicals are waaaaaaaaaaaaaaay over in the Guess Culture aisle with a huge helping of "yes-we-said-that-but-we-did-not-really-mean-that" on the side.
posted by adipocere at 8:27 AM on May 6, 2011 [9 favorites]


This is a nice effort, but even when you know someone has an Autism Spectrum Disorder it can be difficult to not be hurt or offended when they say the obvious (to them) thing. There's a lot of human interaction that succeeds only because we know when to lie or just shut up.
posted by tommasz at 8:27 AM on May 6, 2011 [4 favorites]


(nevermind, I guess Asperger syndrome is now Autism.)


According to wikipedia Asperger is an autism spectrum disorder, and the National Institute of Health PubMed site refers to is as "high functioning autism"...so it's related enough, and it's more likely you'd encounter someone in a public place with Asperger/high functioning autism than someone with the kind of Autism that prevents them from leaving the house without assistance.

So this stuff is kind of helpful, and the "maybe he thinks you're ugly" one doesn't seem out of place to me at all. I used to work with some high functioning autistic kids and they really do talk like that, it's not a gross stereotype. Besides, it's meant to illustrate a point: autistic folks don't tend to think about things the way we do, and it's good to remember that.

I agree it's hard not to feel hurt when an autistic person does/says something to you that isn't socially appropriate, which is why I try to remember that a) they aren't being mean and b) they've probably got it a lot tougher (socially) than I do, so I can just get over their unintentional jabs and try to empathize with them.

There's a lot of (better) human interaction that succeeds only when we learn to forget our own feelings and focus on helping each other out.
posted by jnrussell at 8:35 AM on May 6, 2011


It's like neurotypicals are waaaaaaaaaaaaaaay over in the Guess Culture aisle with a huge helping of "yes-we-said-that-but-we-did-not-really-mean-that" on the side.

I don't understand what this means.
posted by codacorolla at 8:35 AM on May 6, 2011 [1 favorite]


I like that these videos are from the perspective an adult who has autism. It seems to me that they often get overlooked in the national conversation, which often focuses on the difficulties of neurotypical parents who care for autistic children.

I can't really comment on their accuracy at all.
posted by muddgirl at 8:36 AM on May 6, 2011


this is really interesting. is there a way that autistic people can let others (strangers) know that they are autistic so people can know not to react to them in negative ways?
posted by cristinacristinacristina at 8:36 AM on May 6, 2011


Well, some people with autism also experience synesthesia, more than the general population's chance of experiencing it.

But yeah, my sister has autism, and I think autism is really more about how people process their perceptions, rather than their sensory perceptions being warped, at least in most cases. For example, certain sounds or textures can cause anxiety, and it's easy to be overwhelmed by senses, but it's not like they actually see a radically different environment.
posted by mccarty.tim at 8:38 AM on May 6, 2011


adipocere: “It's like neurotypicals are waaaaaaaaaaaaaaay over in the Guess Culture aisle with a huge helping of "yes-we-said-that-but-we-did-not-really-mean-that" on the side.”

codacorolla: “I don't understand what this means.”

I may be wrong, but I think it means: sure, autistics have a problem gauging social niceties. But it seems like lots of "normal" people have a problem with saying things they don't actually mean.
posted by koeselitz at 8:38 AM on May 6, 2011 [3 favorites]


Jesus, I would be overjoyed if my son was functional enough to just make those kind of social blunders. Ride a bus on his own to go to a job, that he can actually do in a primarily self-directed manner? Hallelujah! Currently at age 17, about the best he can manage is to pick out his own clothes for the day.

Still, it's a good series of videos and a good representation of what the higher functioning autistics go through.
posted by Lokheed at 8:38 AM on May 6, 2011 [1 favorite]


It's also hard for me to believe the altered reality shown in "Casual encounters can become an ordeal" as if the autistic guy was drunk or on drugs.
posted by grouse at 8:40 AM on May 6, 2011


It's also hard for me to believe the altered reality shown in "Casual encounters can become an ordeal" as if the autistic guy was drunk or on drugs.

I think they depicted it that way because otherwise it would be hard to visualize the sensory overload that a person with autism is experiencing.
posted by echolalia67 at 8:44 AM on May 6, 2011


grouse
It's also hard for me to believe the altered reality shown in "Casual encounters can become an ordeal" as if the autistic guy was drunk or on drugs.


It's being used to illustrate that situations that we don't find scary or threatening can be perceived that way by autistic people. We have no idea how they really perceive the world but certainly some of them have reactions to situations that seem out of wack with what's actually happening.
posted by victoriab at 8:45 AM on May 6, 2011 [1 favorite]


It would still make sense and be insulting even if the woman was beautiful. It would be insulting even if the person said "Maybe it will rain today". And even a rehearsed "I'm sorry. He's a jerk and you deserve better." said with a flat affect, no eye contact and stiff body posture might be misperceived as insincere or dismissive. The problems involve empathy and pragmatics, which are expressed at multiple levels of discourse, ranging from which words are used to how your eyes crinkle while your intonation peak lines up with a gestural sweep of the hand. All of this informs our impression of how much people are 'listening' or 'care' about us. Sometimes we take shortcuts in parsing or are under duress and don't have the emotional energy to lend to the task. But in most situations, if we pay extra intention to the mismatch between the content ("Maybe he thought you were ugly") and the missing cues in the delivery (incongruent intonation pattern, pacing, body language), we can see that something is 'off' with the message at a much higher level than simply offensive content and then therefore the offending content can't reliably be interpreted pragmatically as an intended insult.

Basically, with some awareness, we can tease out intention and capability. And then practice some patience and acceptance.

(I think this applies to everybody and for everybody...'cause we all have our things.)
posted by iamkimiam at 8:47 AM on May 6, 2011 [4 favorites]


I don't understand what this means.

Well there's the Ask/Guess divide which we've seen discussed on MeFi here. So there are a lot of unstated assumptions in Guess culture which works out okay if everyone's working from the same playsheet. However people often aren't. So you get one person saying "This was nice. We should do this again sometime." and someone who is more literal minded will likely say "Okay WHEN" Or the more problematic "I'll call you." which gets followed-up with later "Hey you said you'd call but you didn't call. Everything okay?" which can be awkward.

There are social reasons you make nice comments like "I'll call you." or "We should do this again sometimes." but to someone who is more literal minded these seem like really perplexing and persistent lies. Like why say you'll call if you won't call? No one needs you to say that. Why did you say that? Why do you always say that?
posted by jessamyn at 8:48 AM on May 6, 2011 [15 favorites]


All right, Jess, I'll call. Jeez.
posted by Astro Zombie at 8:53 AM on May 6, 2011 [9 favorites]


The point of the autistic person saying "Maybe he thought you were ugly?" isn't really whether or not he thought she was ugly. The thing is that autistic people often have trouble with the empathy aspect of social skills, at least in a way to have a timely reaction, which prevents them from thinking through how people will react to what you say by the time they speak.

He either didn't think she was attractive himself, or he thought through reasons a person might break up with a person and decided to suggest one, even though he didn't think she was ugly. I think suggesting a reason at random is most likely. He could have also said "Maybe you nagged him too much," or "Maybe he found somebody he likes better," which would also have been ill-advised things to say. Sometimes neurotypical people find themselves having these thoughts, but they usually realize they'd be a bad thing to say.

Notice I'm not saying autistic people lack empathy like sociopaths. The problem is they don't have a quick enough understanding of empathy to put it in action socially. People on the higher-functioning end of the spectrum (Asperger's) sometimes have insight about how what they said is offensive, just after they said it, which gives them a chance to try to apologize, which is still really awkward.
posted by mccarty.tim at 8:56 AM on May 6, 2011


It's difficult because in many ways Asperger's is a hidden disability, and unless the person with Asperger's comes out and states it as such, then other people around them will just take it as intentionally rude, or poor breeding. This is the reason I don't like these videos. They make it seem like it's the fault of the people taking exception, and that they're bigoted.

Hidden disabilities are a tricky subject because it's hard to tell where someone's neurochemistry ends and where their personality begins, plus you don't want a society where everyone wears badges with their disabilities on their shirt.

I think this video series is well intentioned, but it flattens out a complicated issue, takes liberties with the perceptions of people with Asperger's, making them all seem to be one homogeneous group, and is really preachy when (honestly) all of the people in those videos have a very good reason to be offended. If your goal is to raise awareness, then I don't think these videos accomplish that.
posted by codacorolla at 8:57 AM on May 6, 2011 [1 favorite]


is there a way that autistic people can let others (strangers) know that they are autistic so people can know not to react to them in negative ways?

They already give out chocolate if you guess correctly. When you receive a Hershey's Kiss you'll know you're doing it right.
posted by hal9k at 9:06 AM on May 6, 2011 [1 favorite]


Hidden disabilities are a tricky subject because it's hard to tell where someone's neurochemistry ends and where their personality begins,

It doesn't really matter much, does it? You don't have to be best friends with someone autistic, or put them in charge of customer service, but maybe you could not make fun of them behind their back, taunt them, or decide that they're looking for a physical fight.

Once you get the hang of it, it's not horribly difficult to figure out "hey, maybe that person has autism, so I'll just avoid talking about sensitive topics and give them a break if they say rude things".
posted by the young rope-rider at 9:06 AM on May 6, 2011 [1 favorite]


It's also hard for me to believe the altered reality shown in "Casual encounters can become an ordeal" as if the autistic guy was drunk or on drugs.

Yeah, like a bad acid trip - just getting started. Which is as much as telling me that Aspergers is akin to schizophrenia.

Meanwhile, in defense of the Onion link, it actually conveyed for me a far more striking sense of empathy than the official links, because way back when, in student radio days, I knew a guy (a wannabe beat reporter) who's behavior was frighteningly similar. And, of course, we being thoughtful, mature undergraduate-age adults tended to make fun of him, or just tried to ignore him completely. Whereas, credit to the Onion, the appropriate response seems to be that of the City Councilman, who, upon "grokking" that the reporter does have an empathy disorder, firmly yet non-judgmentally (and unemotionally) corrects him, or more to the point, gives him time and space to correct himself.
posted by philip-random at 9:08 AM on May 6, 2011 [5 favorites]


Thanks for posting that, Jessamyn. So Guess culture has a kind of built-in "this is our special club with secret handshakes and byzantine protocols" vibe. Or at least that's my perception, which must mean I'm an Ask person.

On preview: codacorolla, I'm curious to know more about your definitions of "good reasons" to be offended. I can see the one where the people are in the emergency situation...but even then it's not unreasonable to assume if a person isn't responding or helping out they just might be in shock...so again I'm just curious, is there a sort of universal unwritten list that says "these are good reasons to take offense?" Not trying to be rude here, just trying to understand the perspective better.
posted by jnrussell at 9:08 AM on May 6, 2011


I don't think I'm on the autism spectrum, but jesus, navigating social mores often feels like a full-time job. I can see how figuring out the behavior of the humans in the first link can seem like decoding an ancient text in a strange language, even for "normal" people like me. And if you stop and try to "unlearn" your social conditioning and really try to parse out all the motivations and reasonings behind why we say the things we do in these situations, it can be overwhelming. So anyone who has trouble figuring this stuff out, or who can't comprehend that there IS something to figure out, has my total sympathy.
posted by naju at 9:15 AM on May 6, 2011 [2 favorites]


I thought the one with the jiggly boobs was kind of funny.
posted by KokuRyu at 9:18 AM on May 6, 2011


Watching that first link again, everyone in the video except the crying lady seems very off or rude to me (those little smirky expressions!)
posted by naju at 9:18 AM on May 6, 2011 [1 favorite]


On preview: codacorolla, I'm curious to know more about your definitions of "good reasons" to be offended. I can see the one where the people are in the emergency situation...but even then it's not unreasonable to assume if a person isn't responding or helping out they just might be in shock...so again I'm just curious, is there a sort of universal unwritten list that says "these are good reasons to take offense?" Not trying to be rude here, just trying to understand the perspective better.

Someone can make a stupid statement, or be unfriendly to an old man on a bus and not have Asperger's. Some people are either having a bad day, or are just jerks. These videos act like it's the fault of the people reacting to the main character for having understandable emotional responses. I don't know what you mean by an unwritten list of good reasons to take offense. That's a weird idea.

These videos strike me as the same thing as a person putting on black face, and then saying "wow, now I truly know what it's like to be black!" If you want to raise awareness then maybe you could, I dunno, talk to people with Asperger's? Maybe interview someone who studies it on a professional level? When you treat a population with disabilities as a caricature in a video series, instead of actually presenting them as real people with diverse backgrounds, cultures, and experiences that range beyond the narrow definitions of a disability, then I feel it's about the same thing as the Onion's autistic reporter series, possibly even worse, since the Onion's series at least manages to engage the viewer with humor.

Don't forget that Autism is a spectrum disorder, so while some people with Asperger's may experience synesthesia, it's by no means a universal symptom of the disease.

These videos strike me as lazy generalizations that don't do much to help the population that they describe.
posted by codacorolla at 9:20 AM on May 6, 2011


everyone in the video except the crying lady seems very off or rude to me

Yes. The world of these videos is populated almost entirely by autistic people and gigantic assholes. In many of the cases it doesn't seem like they would've been any pleasanter to a neurotypical person — the co-workers are basically quietly mocking their colleague as she cries about her breakup, the bus guy and the receptionist woman are both narcissistic blowhards without any empathy of their own, and the first people who show up at the accident scene seem more angry that an ambulance hasn't already been called than they are concerned with helping. If the message is "don't be an asshole to autistic people" then it might've helped to provide an example of how, or even to show someone trying not to be an asshole by some reasonable set of social rules; all these people are being pretty horrible by non-autistic standards, too.
posted by RogerB at 9:45 AM on May 6, 2011 [2 favorites]


I guess what I'm saying is that it seems to me a weirdly presumptuous idea that there are any "good" reasons to take offense. There are certainly reasons, but saying they are good reasons implies that there's some universal law of proper behavior that everyone should know and observe, which strikes me as arbitrary and exclusive.

And actually I think that same presumption is why, as you've pointed out, these videos aren't as helpful as they could be. These videos are operating in the language of Guess culture, the idea that there's a right way to interact with other people and if somebody isn't following protocol, well it's probably because he's autistic and he's seeing exaggerated acid-shadows when people talk to him.

But then again, I think I'm ok with making the people in these videos feel a little bad about getting offended over small things (minus the car crash one, obviously). What, the young guy in a suit doesn't want to talk to you on the bus? Big deal! Get over it. You don't know anything about him, so why do you care if he doesn't talk to you. There are a million reasons why a person might not respond (jerk, autistic, scared, sore throat, non-native speaker, hard of hearing, half-asleep, angry, depressed, not interested, whatever). The fact that you just assume everybody you meet wants to talk to you seems a little self-absorbed to me.
posted by jnrussell at 9:50 AM on May 6, 2011 [2 favorites]


I could go my whole life without being snidely described as "neurotypical" one more time and I would be just fine with that.
posted by pts at 10:07 AM on May 6, 2011 [4 favorites]


I think these videos are a little misleading, in that they attempt to portray a mental condition with altered visual/aural perceptions.

Actually they didn't do too badly. Speaking as an aspie with sensory integration difficulties. The overly saturated colour may be the best possible way to use film to convey that some stuff is just... shiny and vibrant to the point of grabbing all your attention. I haven't made any serious social gaffes since high school, but some of these videos are true to my more extreme reactions.

You don't actually get the "menace" sensation unless you're also suffering from social anxiety, and if the experience of other aspies is like mine you should just turn all sounds up to 11, instead of distorting them.

But codacorolla, any number of people in that video could have had Aspergers. It's not like you can tell, which was part of their point.

See- the fact that people are assholes is actually part of the normal human spectrum of things. For example the fact that one of the guys at the lunch table is mocking the sniffling woman and one of the people comforting her is being a tad sexist means that trying to puzzle out the correct response is harder than if everyone was following a script like a flock of automatons. Learning to have empathy, for me, is learning about the maybe stories- maybe the receptionist is crabby because whenever she gives a tour she gets yelled at for not answering the phone. Maybe the sarcastic dude is actually behaving shamefully, maybe the crying co-worker in a leech who lives for drama. We're getting everything through his (broken) social filter which should tell you how hard it is to puzzle this out.

Aspergers is not just being socially deaf in a world of socially astute folk, otherwise they'd rapidly ID the problem and work around you. It's navigating the million little emotions, ambivalence and agendas that make up the human condition.

For example the pushy gentleman nattering on and on also needs to know if he offended the nice young man in the suit who always looks so twitchy, and if he's going to be helpful (because one of the reasons why people chatter like sparrows is to build community) a reason to understand that Mr. Twitchy needs to grab the seat on the non-sunny side of the bus and tune things out is a good thing.
posted by Phalene at 10:09 AM on May 6, 2011 [7 favorites]


pts, I don't read the use of that word as "snide." Is there another term you prefer, something that connotes people who do not have autism spectrum disorders, but doesn't stigmatize either you or people who do have such disorders?
posted by decathecting at 10:11 AM on May 6, 2011


previously - law enforcement and persons with autism
posted by desjardins at 10:28 AM on May 6, 2011


decathecting: The onus of not being offended by the term probably lies with me. I don't have a better alternative that doesn't marginalize the Other (i.e., "normal" is right out).

I'm aware that I'm on the privileged side of the divide, and thus quibbling over nomenclature all too often becomes a way to discredit the oppressed/nonprivileged side (see also: every discussion of "reverse racism" ever), and I don't want to do that.

But to the extent that my irritation is at all justified, it's because I often get the sense that the term seems to carry a sense that my notional neurotypicality precludes true understanding the experience of autism—which in a sense perhaps it does, but the reality is that in this imagined debate between the autistic and the neurotypical, one side is ill-equipped to really empathize with the other, and it ain't my side.
posted by pts at 10:32 AM on May 6, 2011


it's because I often get the sense that the term seems to carry a sense that my notional neurotypicality precludes true understanding the experience of autism

Well yes, just as the fact that I'm straight means that I can never have a true understanding of being gay. Just as the fact that I'm white means I can never have a true understanding of being black. It has nothing to do with the fact that autistic people are "ill-equipped to empathize" (which seems like an overly-simplified description of the autism spectrum).

Neurotypical is just a description or a label. Like white, straight, cisgender (which a lot of people oddly don't like), etc.
posted by muddgirl at 11:08 AM on May 6, 2011 [1 favorite]


What's the opposite of autism with regard to people that pick up even extremely subtle clues about others' behavior, information gathering is second nature and reacting in emergency situations comes naturally when presented, despite completely unfamiliar circumstances? Is there one?
posted by horsemuth at 11:09 AM on May 6, 2011


Not-ism?

That's a great question, actually, and something I'd be curious to learn more about; as a kid I had terrible trouble figuring out social interactions etc but at 34 I find myself picking up on nonverbal cues in a way that shocks* my GF. Maybe it's from having been raised in a barn (by wolves), then spending years self-medicating** and existing in a social sphere that eschewed mediation***? Dunno, I don't have no fancy schoolin'.

* shock is an inaccurate word; I'm aiming for something between baffle and impress
** funny how much less regular alcohol consumption is central to my life now that I've got a good shrink...
*** the years spent working with teenagers and at a bar probably had a fair bit to do with this

posted by jtron at 11:38 AM on May 6, 2011


But to the extent that my irritation is at all justified, it's because I often get the sense that the term seems to carry a sense that my notional neurotypicality precludes true understanding the experience of autism

That's because it does.

- My being male precludes true understanding of the experience of being female.
- My being white precludes true understanding of the experience of being African-American.
- My being heterosexual precludes true understanding of the experience of being homosexual.
- My being neurotypical precludes true understanding of the experience of being autistic.

You are ill-equipped to understand the experience of being autistic. So am I.
posted by DWRoelands at 11:51 AM on May 6, 2011


I am a high-functioning autistic (ASD) who has worked with members of the National Autistic Society on behavioural/social cues. While not perfect, these examples do possess some merit.
posted by malusmoriendumest at 11:57 AM on May 6, 2011 [3 favorites]


I knew that neurotypical had come out of the autistic community, but I had always taken it to mean anyone who wouldn't be considered psychologically typical, not just people who are not autistic, but browsing around suggest that may not be correct. Have I been misreading this term?
posted by Marty Marx at 12:06 PM on May 6, 2011


Hey, guys, I thought my comment above made it pretty clear that I understand issues of privilege, so please don't lecture me on that count. It's tiresome.

My wording, however, was careless. Yes, obviously I can never be autistic, and thus an intuitive understanding of that experience is impossible for me.

That said, I can understand, intellectually, what the consequences of the condition are, and broadly speaking, what challenges it presents to those who bear it; I am in fact better positioned to understand at some level what the world is like for an autistic person than an autistic person is to understand what the world is like for a "neurotypical"—that is the point I was trying to make.

The consequence of that, of course, is that the burden is on me to make allowances for their them, and not the other way around, which brings us back to the purpose of these videos.
posted by pts at 12:07 PM on May 6, 2011 [1 favorite]


I am in fact better positioned to understand at some level what the world is like for an autistic person than an autistic person is to understand what the world is like for a "neurotypical"—that is the point I was trying to make

Again, this seems like a very simple understanding of autism. Dr. Temple Grandin, for example, seems perfectly capable of conceptualizing the way she moves through the world, and how it is different from the ways I move through the world. She seems capable of understanding that other people are different from her, and how the world is set up to accomodate me and not her. Through her work with the livestock industry, she works with neurotypical people on a day to day basis and must accommodate the ways that they process information.
posted by muddgirl at 12:30 PM on May 6, 2011 [3 favorites]


There's something to be said for portraying the neurotypical people as assholes. For someone on the autistic spectrum, the world really is populated by short-tempered people who say confusing things and get angry for seemingly no reason.
posted by Sticherbeast at 12:34 PM on May 6, 2011 [8 favorites]


I was diagnosed as high functioning autistic when I was a little kid. This was a long time ago, so I suspect if I were a little younger than I am, the diagnosis would have been Asperger's. But overall, while I understand I'm not entirely neurotypical, I reject the notion that I have a disability or that my condition is really in any way pathological.

I am just the way I am, and I don't say this in a squishy kind of feel-good way (I'm autiiiiiistic! I can't!), but I seriously would not become neurotypical even if I could.

My condition isn't at all debilitating in itself.* I was never non-verbal (in fact, I think my being hyperarticulate was one of my symptoms). I have a sense of humor. I am OK at reading social cues, although I learned it mostly through diligent pattern recognition. In fact, in a lot of cases, I think I'm better than neurotypical people at discerning social cues, because I actually know and can articulate them. More than a few times, I've served as interpreter for people who are too emotionally wrapped up in something to discuss it among themselves.

The only really vexing aspect of things for me is that I get a little resentful that I have put so much time and effort into accommodating other people, and nobody seems to really make an effort to accommodate me, even if I tell them very explicitly how to.

I'm not really all that fussy, but I don't like a lot of types of noise and distractions, and I need less social interaction than a lot of people, and can only tolerate so much. I don't like people staring at me or invading my personal space, following me around or asking me too many questions (oh, how I despise "Whatcha doing?"), and certain types of repetitive or disruptive noises really set me on edge. But a lot of the time when I explicitly tell someone that, they ignore it completely, treat me like a Very Special Person, or even make a point of doing it intentionally, like it's some kind of a running joke.

My neurology in itself is a boon. It's earned me a nice living. It paid for my house, supported my child, and has kept me interested and involved and motivated. I like the way I think. I don't want to become one of those people who has to process information through social interactions, or who gets lonely and bored the minute nobody else is around. It would not be 'good for me' to socialize more or to become more outgoing and stuff. That is not my goal, and it's a little offensive that so many people seem to think it is. I've met people more than halfway, and I don't think it's too much to ask that people actually make some effort to accommodate my preferences for a change. Hell, maybe they should try to be more like me.

* OK. Every now and again, I do get distracted by a pattern. I might be listening to someone, watching TV or a movie or something, trying to follow a narrative, and I see a complicated pattern in some wallpaper or tiles or something, and I get a little lost in it for a while.**

** And sometimes I ramble on topics that are of more interest to me than they are to anyone else, and people get bored. (Ha ha! Shoe's on the other foot now!) ***

*** That's all. Everything else is good.
posted by ernielundquist at 12:40 PM on May 6, 2011 [8 favorites]


My condition isn't at all debilitating in itself.... The only really vexing aspect of things for me is that I get a little resentful that I have put so much time and effort into accommodating other people, and nobody seems to really make an effort to accommodate me, even if I tell them very explicitly how to.

This is one part of the social model of disability.
posted by muddgirl at 12:44 PM on May 6, 2011 [6 favorites]


Xoebe: “Obligatory Onion link.”

jessamyn: “This is the ‘maybe he thought you were ugly’ equivalent for this thread, I think.”

Huh?
posted by koeselitz at 1:25 PM on May 6, 2011


There's something to be said for portraying the neurotypical people as assholes. For someone on the autistic spectrum, the world really is populated by short-tempered people who say confusing things and get angry for seemingly no reason.

They're right.
posted by furiousxgeorge at 1:30 PM on May 6, 2011 [4 favorites]


"maybe he thought you were ugly" is a sort of show-stoppingly clumsy way of trying to be socially interactive while at the same time missing the point. I didn't mean to belabor this, but including an Onion link, even a not-really-that-snarky-and-mean Onion link, early on in a thread about the complicated world of austic people learning to interact socially seemed itself like a bit of an attempt to interact while being sort of tone-deaf to the fact that some people might take it the wrong way, even with caveats. So I came over here, saw that it was flagged a lot, decided to not delete the comment since it's clearly well-intentioned, and make a sort of sideways joke about it instead. That's it.
posted by jessamyn at 1:31 PM on May 6, 2011


It's also kind of tone deaf to compare someone being rude because of insensitivity with someone being rude because of disability.
posted by furiousxgeorge at 1:34 PM on May 6, 2011


I've never claimed not to be tone deaf. My apologies if I hurt anyone's feelings in the attempt to make a mild joke.
posted by jessamyn at 1:41 PM on May 6, 2011 [1 favorite]


Ah, that makes sense. Sorry, jessamyn, I just didn't understand.
posted by koeselitz at 1:44 PM on May 6, 2011


People with mental disorders do experience strange visual and aural effects - they aren't exactly the same as the film presented, because film can never eactly depict what is happening entirely within one person's head, but it makes a good attempt at showing how sensory imput can be overwhelming and disorienting.

Also, I always assumed that "neurotypical" means what it sounds like it means: someone whose neural functioning is "typical" or "normal". So that would mean someone without autism, but also without serious depression, schizophrenia or any other mental disorder or disability. It's a good word - it's not insulting, just noting that most people's brains work in certain ways, while a few people's brains work very differently.
posted by jb at 2:06 PM on May 6, 2011 [1 favorite]


Curiously, the wikipedia article on the social model of disability has nothing about the WHO work on defining and describing disability, which combines the social and medical understandings of disability. It breaks disability down into how parts of your body don't work (or work atypically), how this affects whether you can do certain tasks (like walk, see clearly, do addition), and how this affects you socially (reducing your mobility, restricting your job options, causing social problems).
posted by jb at 2:15 PM on May 6, 2011


Is there a way that autistic people can let others (strangers) know that they are autistic so people can know not to react to them in negative ways?

My husband has Aspergers and he has printed out little cards with information about what Aspergers means to hand to people he's just met who ask about it. It seems to help the discussion.

ernielundquist: I agree that people are too often unwilling to cut the AS some slack, even those who know better. I find myself getting all mother bear about it sometimes.
posted by lazydog at 3:14 PM on May 6, 2011 [1 favorite]


Is autism over-diagnosed? I think that every edition of the DSM makes it easier and easier to diagnose someone with a mental disorder. It's almost like there's no assholes any more, just those with mental illnesses.*

so, is over diagnosis a problem? And if so, what should be done to reduce it?

*(isn't it interesting that it's ok to say "assholes" but not "the mentally ill"?)
posted by rebent at 3:47 PM on May 6, 2011


It's also kind of tone deaf to compare someone being rude because of insensitivity with someone being rude because of disability.

But at what point does insensitivity become disability? Or as rebent just put it ...

It's almost like there's no assholes any more, just those with mental illnesses.*

My own experience is that my moments of assholism tend to pop up when I'm under stress, exhausted, drinking way too much under the wrong circumstances, or otherwise lacking the focus and/or the energy to seek to understand what exactly is motivating the behavior of those who are getting on my nerves, under my skin -- whether they be immediate family members, neighbors, elected officials, entire cultures on the far side of the world.

Am I disabled/mentally ill in that moment that I negatively act on this aggravation? I suspect that I am.
posted by philip-random at 4:22 PM on May 6, 2011


I get what you're saying, but I would suggest maybe the word "impaired" would fit better there.
posted by furiousxgeorge at 4:27 PM on May 6, 2011


*looks up dictionary definition of impaired"

Having a disability of a specified kind.

Damn it. Well, whatever, in common parlance people associate that more with temporary disability I would say.
posted by furiousxgeorge at 4:28 PM on May 6, 2011 [1 favorite]


"Is autism over-diagnosed? "

If anything, it's under-diagnosed in girls and women.

Having had experience with people on the autism spectrum, more and less severe, it is notably different from "just an asshole".
posted by the young rope-rider at 4:29 PM on May 6, 2011


rebent: “I think that every edition of the DSM makes it easier and easier to diagnose someone with a mental disorder. It's almost like there's no assholes any more, just those with mental illnesses.”

Given the fact that psychiatry aims at curing or at least easing the maladies it diagnoses, it's hard to see why this is a problem. Are you saying you'd prefer a world in which people who are antisocial jerks were just free to be antisocial jerks to everybody, without anybody trying to help them be happier?

In any case, no, autism is not overdiagnosed. Autism is underdiagnosed. Here is a pretty good study which found that fifty-five percent of children who demonstrate autistic tendencies aren't being identified as such. That's a pretty huge underdiagnosis, even if it's half as much as that.
posted by koeselitz at 4:38 PM on May 6, 2011


Why is it under-diagnosed in girls?
posted by furiousxgeorge at 4:43 PM on May 6, 2011


Good question. I'm sure there are a lot of factors that affect diagnosis, perhaps in part because it used to be conceptualized as the result of a "hyper-masculine" brain.
posted by the young rope-rider at 4:59 PM on May 6, 2011


Koeselitz, TYR-R, I wasn't clear. On a spectrum of really bad autism to no autism, we draw the line somewhere.

Spectrum:
BAD<>None

What you are saying is that regardless of whether the line is at Y or Z, people at X may be under-diagnosed. I agree with this. But my question is, do we perhaps have the line drawn at Z when it should be at Y? If so, how do we know? If not, how do we know?

The point I am presenting is that perhaps we have "diagnosis creep," which ignores (for the sake of this topic) the under-diagnosis of those at X, and focuses only on the over-diagnosis of those at Z.
posted by rebent at 5:04 PM on May 6, 2011 [1 favorite]


dang it, the spectrum didn't show up.

BAD{-------X-------Y------Z-------}NONE

(as an aside, how come that's the way the spectrum looks instead of something like this?

NONE
REALLY BAD{-----X----Y----Z----}ONLY A LITTLE BAD
posted by rebent at 5:07 PM on May 6, 2011


One of the biggest reasons for providing services for autistic children is that early intervention has a huge impact on the course of the disorder and doesn't have any horrific side effects (I'm talking about behavioral and occupational therapy, speech therapy, extra aides, etc.) When you start medicating kids, well, that's another issue.

So in terms of early intervention, it's better to catch a few extra kids than it is to miss kids who could benefit from the assistance (and won't benefit as much 3, 5, or 10 years from now).

I really don't get where this theory that normal kids are being diagnosed as autistic is coming from. I hear it constantly about ADHD as well but it seems more like a "well, I feel that it's overdiagnosed" than the result of any actual knowledge or experience.
posted by the young rope-rider at 5:18 PM on May 6, 2011 [2 favorites]


AUTISTIC{REALLY BAD-----SEVERE MIXED BLESSING-----DECIDED STRENGTHS AND WEAKNESSES-----MYTHICAL AVERAGE-----DECIDED STRENGTHS AND WEAKNESSES-----SEVERE MIXED BLESSING-----REALLY BAD}WHATEVER THE OPPOSITE OF AUTISTIC IS
posted by jsturgill at 5:42 PM on May 6, 2011 [1 favorite]


The more I read about autism, the more I think I'm mildly autistic, undiagnosed.
posted by outlandishmarxist at 7:30 PM on May 6, 2011 [2 favorites]


I've been on that bus. This is why I walk even though it takes longer.
posted by madcaptenor at 8:06 PM on May 6, 2011


To the person who said that it was nice to see something from the perspective of an adult rather than on parenting children with autism - yes! I have tried looking up autism in adults so that I could figure out how to better live with my housemate, and google was not helpful.

They never think to themselves "maybe this person is seeing the situation differently". They think "this person has an incorrect state of mind [after processing the same perception that I have]".

This is why I'm moving out of the house I live in right now. I've been housemates with a friend who was diagnosed with autism as a child (and who no longer believes he is autistic) for about a year. Even though I *know* he works differently than I do - I can every single one of those movie clips in him, they were helpful - I still have had a hard enough time living with him that now it's to the point where I need to move out. And the tipping point was precisely what I quoted above.

He may work differently than I do, but the pain I feel as a result of his strong, non-negotiable negative beliefs about me and our other housemates is still real.

These clips are good in that they show us what it's like to be an adult with autism. I'd love to see some follow-up clips that show good ways to mentally and emotionally approach interactions with adults with autism.
posted by lover at 8:35 PM on May 6, 2011 [1 favorite]


so, is over diagnosis a problem? And if so, what should be done to reduce it?

Yes and no. I think diagnosis is much more common now than it was in the past, but it isn't necessarily over-diagnosis and it isn't necessarily a problem. I can share my view after working in a research group that dealt with many people on the spectrum. First, there is a difference between being "having autism" and having something that falls under the spectrum (think of it as a line graph of severity) which includes Asperger's. Although I don't have a copy handy, the DSM definitely makes this distinction and there are specific criteria that must be met for each.

Additionally, many of those I talked to who were qualified to diagnose such conditions told me that giving someone a diagnosis that may be borderline is often justified if it is felt it will help in some way and particularly if the person is seeking such a diagnosis. That is, if the doctor feels it will validate the person's feelings about themselves, assist them in getting financial help, or help a parent to get special attention from the school staff a diagnosis is often given freely. Their attitude seemed to be "if a diagnosis will help, give it to them". That is not to say they encouraged these diagnoses.

However, when we were conducting research we had our own process of evaluation and diagnosis for all subjects. This involved trained administration of a battery of tests as well as videotaped interaction by a professional that was later reviewed later by one of their peers. This is not typical practice for diagnosis in a real-world scenario. So, the fact that some doctor once told you that you had autism doesn't really mean that much, and was certainly never taken as confirmation of that fact in a research environment.
posted by sophist at 8:36 PM on May 6, 2011


Also, if you want to understand how autism works and what might be going on in the brain, my personal favored theory is that of mirror neurons. I find this view quite compelling and believe it offers new insight into both autism and the broader topic of cognition. However, while there is a lot of scientific research (and published journal articles) on this topic, there is very much an active debate still going on in the field.
posted by sophist at 8:43 PM on May 6, 2011 [1 favorite]


The more I read about autism, the more I think I'm mildly autistic, undiagnosed.

outlandishmarxist , been there, done that. I now have Aspergers diagnosed, and therapy is extremely helpful. If you want to know more or just talk about it, my email is in my profile.
posted by DreamerFi at 11:33 PM on May 6, 2011


" Although I don't have a copy handy, the DSM definitely makes this distinction and there are specific criteria that must be met for each. "

It does, but they've found the distinction between autism, Asperger's syndrome, and PDD-NOS isn't reliably distinguishable, so I think they'll shove them all under the umbrella of autism in the DSM-V. There was quite a kerfluffle about it when it was first suggested.
posted by the young rope-rider at 11:13 AM on May 7, 2011


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