In California, my mother got to talking to this foster mom at the pool.

[conuly]

And foster mom had adopted two older boys as well, and somehow the conversation turned (amazingly quickly, I thought) to me and Asperger's. Now, I want to make this clear here, because I've yet to make this clear to my mother: She really shouldn't be outing me, as it were, without my permission. (Or at least, if she's gonna do so, she should do it in a way that it won't get back to me!) Not because it's some big secret or something (LOL, right), but because, you know, sometimes I don't want to talk about it. The butt boil of doom isn't a big secret (it largely stopped coming back a few cycles after switching to cloth pads, btw), but that doesn't mean it's what I want to talk about all the time. (I'm not comparing AS to butt boils, btw. I also don't always want to talk about fluffy kittens, and I love fluffy kittens. AS is somewhere in between boils and kittens. Ana pet a cat the other day - somehow, she'd convinced herself this was the FIRST AND ONLY TIME this has ever happened. She jumped for joy. /tangent)

But anyway, my mother brought it up and All Eyes Turned To Me. (See? THIS is why she should check with me first! All of a sudden I have to find a way to a. be social b. be polite and c. tell people why everything they thought they knew about AS and just proudly rattled off to me is wrong while also d. not speaking at my normal pace and e. trying to hit that right balance between making enough eye contact to be polite but ALSO not making SO MUCH eye contact that they assume my mother and I are lying or deluded. And I never get to finish my book. Fun.) And do you know what my mother said afterwards? She said that while I'd been busy not paying attention, when my mother brought this up out of nowhere (I went through that stage, I guess, but it was me bringing it up out of nowhere, not my mom), the other woman gasped and said "You talk about it???" Apparently one of her older boys is aspie, but they just... don't talk about it. Ever. And judging from her reaction it sounds more like a shame thing than just a privacy thing.

Now that's sad. I just can't imagine that, and I really feel for them. Which is part of why I don't mind talking about AS and spectrummy issues and all that - you can't make it normal if you keep acting like it's some deep dark secret.

(I just wish my mother would learn to, you know, ask me or give me fair warning or leave me out of these conversations entirely or something.)

Comments

[strega42.livejournal.com]

All of a sudden I have to find a way to a. be social b. be polite and c. tell people why everything they thought they knew about AS and just proudly rattled off to me is wrong while also d. not speaking at my normal pace and e. trying to hit that right balance between making enough eye contact to be polite but ALSO not making SO MUCH eye contact that they assume my mother and I are lying or deluded.

From a neurotypical's point of view, I say no. You don't have to do a), c), d) or e). Polite is always good, but that doesn't mean being a walking 24/7 resource for everyone. Being *clear* that you simply aren't currently up to a, c, d & e should be enough. "I'm really not up to being social right now, and I, like many people with AS, find eye contact to be difficult." should be PLENTY to satisfy politeness - especially if your mother carries on from there with d from her perspective. (Assuming she's not an idiot, and you haven't given me any indication that she's stupid).

This has, I think, the added benefit of demonstrating to people that there's nothing *wrong* with not being up to being social - or complying with their desire for a seminar on AS *right that minute*.

The spoons theory article is also becoming more widely known, you can also just say "I'm out of spoons right now" and then recommend they Google for "spoon theory" later if they don't get it. Granted, the spoon theory analogy only works so far... but it's a very adaptable analogy.

*hugs*

I hope I don't come across as one of those annoying NT know it alls; it's late and my "o" key is sticky, which is using up brain cells that would otherwise be spent on phrasing.

[conuly]

Well, if I don't do a, b, c, d, and e then they go on being wrong, which would be bad enough except that now I know it. It's a lose-lose, honestly. (Although the net effect of all of these, especially b, is "Well, you must be very high functioning", so yeah... I'm not sure why I bother.)

[gingembre.livejournal.com]

Gah. The "you must be high functioning" comment must gall. I know it would for me! I feel I presume somewhat similar when people get that "oh you must be superwoman" look in their eyes when I tell them about natural childbirth. NOOOOO, you *can* do this too. Or babywearing, or nursing - I always make a point to rant a tiny bit about how "I'm just too lazy" to bother with bottles and strollers and other crap.

As I do bring you up as an example often (though not usually when you are around, I don't think, and more often than not as an explanation to NT or mostly NT people that THEY TOO can address social issues, etc. etc.) if people give me any "high functioning" BS I pull out a few childhood stories, or the time you hit Deme over the head with a plate.

And I don't know if I mention this often, but dammit I am frickin' proud of how well you handle the advocacy thing. It's a fine line, and you walk it exceptionally well.

Oh and as long as I am on proud-ness (eh, so sue me), Elena (whose friend Dawn had the baby we visited) had presumed you majored in childhood development. She was THAT impressed with you. Deservedly so, I might add.

[conuly]

Gah. The "you must be high functioning" comment must gall.

Yeah, it's not that I'm gonna argue the point, but what they mean is something along the lines of "I don't really believe you, and even if I do I don't think your experiences are at all relevant". I end up sitting there like "Look, you don't even KNOW me. Try asking my family or anybody else who's known me most of my life, then come talk to me.

Though... uh... don't tell those stories to people likely to meet me at any point. Srsly.

[strega42.livejournal.com]

Heh. I pose to you the idea that educating the masses of neurotypicals (most of whom have the insight of kudzu) is beyond you; indeed, it is beyond any mere mortal. People at large are wilfully dumb. These are usually the same people that think migraine = bad headache, and that ADHD is a "made up" disease and the kid jus' needs a good switchin'.

Demonstrating to people with AS, and the people who love them and *do* give a damn, that its *okay* to only do what you can do is a more tangible & achievable goal.

Accept that people are going to be wrong, and continue to be wrong. For people to expect you to answer a bunch of questions and to correct their misconceptions when it's convenient for them is disrespectful. It's also a stranger asking a bunch of very personal questions, which is in itself slightly rude. You are not obligated to do this every time it comes up.

Our family is very open about what *we* struggle with - my & my husband's ADHD, my daughter's bipolar disorder, my husband's migraines, and whatever else comes up. That doesn't mean I am able, or obligated, to educate everyone with a passing interest.

*hugs*

Off to clean the house. Bleh.

[conuly]

And no, you don't come across as annoying or I'd say so :) (Or just not reply, I do that too, you know, but now you'll think if I don't reply it's deliberately to avoid saying "Gosh, you're annoying" and that's not always it.)

I'm actually going to sleep now. Gotta gear up to tackle the horrible comments in those articles I posted tomorrow. That's gonna be a fun way to start the day! I think I'll do it whilst eating a nice, pb+nutella sandwich. Mmm.

[elenbarathi.livejournal.com]

From an autistic point of view, yes, you DO have to do a), b), d) and e) when you've been unexpectedly 'outed' as a Person With, because if you don't, you will be confirming all the stupid stereotypes in the mind of the Person Without, and, incidentally, discrediting yourself and anything you say in their eyes forever. The word is "marginalized".

If there's "nothing wrong with not being social", why does such a diagnosis as Autism even exist? Sure, there's nothing wrong with a neurotypical being occasionally or temporarily "not up to being social", but if you're on the spectrum and people know it, any lapse in social facility is perceived as "symptomatic".

There seems to be this prevailing notion among neurotypicals that autistics who are suddenly subjected to verbal boundary-violations (AKA rudeness, pushiness, nosiness, unwarranted conversational intimacies) "just" need to amass a little collection of Catch-Phrases For All Occasions with which to assert themselves.

This is tantamount to telling people in wheelchairs that they "just" need to learn a few karate moves to use when well-meaning people grab their chairs without their permission. First, if they could learn karate, they probably wouldn't be in wheelchairs, now would they? And second, if they actually took this ridiculous advice (assuming they were capable) they would get themselves in far worse trouble than they started with.

How many forms of rude, pushy or inappropriate questions do you think there are? Leaving aside the whole vast series of variables related to non-verbal speech and degrees of relationship between the speakers - considering just the plain words, as if they were in text between unknown speakers - how many ways do you think there are to ask a question that doesn't merit an honest answer? Lots and lots, right?

So how do you determine that it is a rude or inappropriate question meriting only a CatchPhrase answer rather than a real answer? And how do you determine which particular CatchPhrase is appropriate to the particular set of words in which the question was posed? Can you explain to me exactly how you arrive at those determinations?

No. You can't, because you don't make those determinations by rational processes; the ability to make them is part of the 'intuitive' social programming of your brain. If you had to make them by rational processes instead, you'd be standing there silent or stammering in front of the rude questioner for minutes at a time while mentally going through the equivalent of Harry Potter trying to catch the Flying Key.

[strega42.livejournal.com]

"Normal" people, taken as a large generalized group, are a waste of otherwise usable air at least half the time. See my above response to Conuly for more on that one.

I've spent 40 years trying to figure out the rules of maintstream social behavior, because I just don't get them. The only neurological issue I'm aware that I have is ADHD, and that really doesn't qualify as anything remotely like the autism spectrum disorders. At all.

I don't think, and did not mean to imply, that a person with AS "just" needs to "learn a few catch phrases". I was offering a suggestion of a possible way to politely decline an unreasonable demand for an instant educational seminar. Telling the questioner that you lack the ability at that moment to respond to their questions isn't a catch phrase, and that isn't limited to a rude question, or an inappropriate one.

The only way to teach people that it's okay to not be social all the time is to demonstrate it. It's up to each individual person to determine if the benefits of demonstrating that outweigh the disadvantages.

So how do you determine that it is a rude or inappropriate question meriting only a CatchPhrase answer rather than a real answer? And how do you determine which particular CatchPhrase is appropriate to the particular set of words in which the question was posed? Can you explain to me exactly how you arrive at those determinations?

No. You can't, because you don't make those determinations by rational processes; the ability to make them is part of the 'intuitive' social programming of your brain. If you had to make them by rational processes instead, you'd be standing there silent or stammering in front of the rude questioner for minutes at a time while mentally going through the equivalent of Harry Potter trying to catch the Flying Key.

Actually, I can answer that.

I don't stop to determine the question's appropriateness as my first process. I determine whether I'm capable of answering it at that moment, first. If I'm not capable of answering it right then, then I say so with CatchPhrase "I'm sorry, I'm really overloaded right now; I don't have the energy to deal with that." If it's a person I'm socially invested in (such as a coworker, whom I will need to deal with later) I offer to answer it later, when I do have the energy. "Let me get back to you on that."

I've used that catch phrase for anything I get asked when I can't deal with more input. I've been known to answer "what do you want to order for lunch" with that, which does require a follow up statement of "you guys go ahead and order without me." or an estimate of when I can answer it "give me 10 minutes."

It's not "intuitive social programming". I've busted my ass to learn how to do that, and it took years to learn to say that in a way that wasn't perceived as angry or hostile by the people around me. I did spend years either blinking at the questioner in a confused stupor, or stammering, until I figured out what the trick was for me - I was using the wrong starting point on my flow chart. The starting point isn't the question, or the questioner. The starting point is "am I capable of (or interested in) answering the question?"

Whether or not any of this will work for you, personally, I obviously can't say. It may help, it may not. It may (or may not) help Conuly (or others reading this comment thread), and I hope it does.

[elenbarathi.livejournal.com]

If you've had to bust your ass in order to learn to deflect nosy questions politely, and spent years blinking and stammering until you figured it out, then it seems probable to me that you are also on the autistic spectrum.

If I'm out where people can talk to me, with rare exceptions such as migraines or bad traffic, I am capable of answering questions, and generally willing to engage in whatever sort of small talk is going on. Therefore 'capability to answer questions' doesn't really enter into it (for me at least.) It's a matter of "Am I willing to answer this question, and if not, how do I avoid it?"

What works for me, personally, is either going ahead and answering the question truthfully - very probably in greater detail and complexity than the questioner wanted, but if they didn't really want to know, they'd done better not to ask - or answering it with a question.

Obviously, excusing oneself from the conversation will always work when one's in a position to do that, but one can't reasonably say "I'm sorry, I'm too overloaded to talk now" or "let me get back to you on that" while sitting in the park. There are a thousand different ways to say I don't want to talk to you or I don't want to talk about this, and they run the gamut from 'almost too subtle to be detected' to 'rudely blunt', but even the subtlest may give pretext for taking offense, and even the bluntest may be ignored or discounted.

I would say, for me at least, the starting point is the questioner. How much do I care what this person thinks of me? If I care a lot, then they deserve an honest answer, or at least an honest explanation of why I don't wish to answer. If I only care a little, as with agreeable strangers, presumably they don't care all that much about me either, so my main strategy is to get them talking about themselves, which most people are glad to do.

[conuly]

very probably in greater detail and complexity than the questioner wanted, but if they didn't really want to know, they'd done better not to ask

I actually use that method for deliberately rude questions like "Don't you KNOW that that CHILD is too HEAVY to be CARRIED in that... THING?"

[strega42.livejournal.com]

It's possible I may be in the autistic spectrum. It's something I always attributed to social anxiety & ADHD. I hesitate to jump on the "I'm special tooooo!" bandwagon, which may be reactionary to other people in my life, but is definitely in large part because there are so many parts of that spectrum I *don't* fit.

Although I should probably go through and do some more reading on the topic before I say something *monumentally* stupid instead of merely clueless.

Anyway.

Thanks for entering into this dialogue with me; it's given me some stuff to think about as I work towards another LJ post with actual content about people with neuropsych "disorders" (my daughter is bipolar, which is where most of my personal focus is) and how we're stigmatized for not being just like the rest of the mindless, indoctrinated herds. *sigh*

Also, I should stop procrastinating and actually get some housework done.

Thanks again! You've been helpful, and I do appreciate it.

[conuly]

I could've said that too.

[siderea]

I hope I don't come across as one of those annoying NT know it alls

Well, yeah, kinda. :} I'm NT*, and even I cringed a bit. As someone else pointed out, while an NT person doesn't "have" to do a, c, d, or e -- that is, social norms may** not require it in normal situations, there are costs to people on spectrum when they don't, because there's effectively a double standard in play, whereby if they don't (after having been outed), their failure to do these things is seen as evidence of how people on the spectrum are socially inadequate.

To make a hopefully useful analogy, imagine going out to dinner with Judith "Miss Manners" Martin. She reports that when she attends social events, people often make nervous quips about "having to be on their best behavior" because she is there. Even though she is one of the staunchest advocates of the idea that courtesy is making others comfortable, and would never shame someone for being "incorrect", people are often made very anxious about the rectitude of their conduct by her mere presence.

That anxiety is a small taste of what someone in conuly's situation is like, because they have a similar psychological root. In the Dining with Miss Manners situation, a person suddenly feels their conformance to social norms is under intense scrutiny (even though that's not actually happening). When a member of a minority characterized by differing social behavior is outed[***], they are scrutinized, intensely, for their conformance to social norms. There are a lot of examples of this, not just what people on the Spectrum experience, but theirs is perhaps the most extreme version.

As an introvert, myself, I totally support your agenda of wanting to challenge the prevailing norm of "I have to make myself constantly available to others", and in fact do these things and encourage others to do them. I think that battle, however, best be conducted by people like you and I, who have the privilege to be judged as individuals when we do that, unlike people on the Spectrum, who will be taken as representatives of everyone on the Spectrum if they do. It seems unfair to demand that of them, in light of how that situation is very different, and a lot more fraught, for people on the Spectrum than for NTs.

[* Well, effectively NT for purposes of this conversation, not being on the Spectrum, but not being neurotypical either.]

[** Actually, this is not universally true. This is culturally bound. And there are cultural groups and regions in the US where "I'm not up to it" is not an acceptable explanation. I don't approve of those groups' culture in this regard, but I know that they are real and the effects of violating their norms are not good when dealing with them.]

[*** A similar example: back when homosexuality was widely believed to make one a child molester (circa 1940-1970), if one was outed as gay, one would be watched like a hawk when one was around children (presuming one was permitted to be around them at all), and all sorts of behaviors would suddenly become suspect that hadn't before, e.g. letting a niece or nephew climb into your lap. Again, a double standard of social rectitude, where what class of person (or non-person) you were identified as suddenly changed which behaviors were considered acceptable for you.]

[strega42.livejournal.com]

::nods:: I was pretty sure I was phrasing things poorly - wisdom would have been to wait till morning to comment; but I felt it deserved something a little more immediate... and Conuly knows how I get :-p Mostly, and I think this is the critical part I missed, is that I was offering a different point of view, more than offering suggestions.

Hey, it's advice on the internet - it's worth what ya pay for it. ;-)

[strega42.livejournal.com]

Also, re-reading the whole comment thread, it occurs to me that i was probably doing just a tad bit of ego-projecting, there. Lately there's been a whole slew of situations where Strega42 is expected to be "on" 24/7 and available to be eveyrone's free kitchen table therapist, and it's been exhausting.

Even though these are people I care deeply about, and want to help, I still get to decide if I'm capable of giving that help right that minute. It's been difficult a few times, so I may have been a little hypersensitive on that.

Oops. :(

[siderea]

Ah, yes, I know that one well. ((tea?))

[siderea]

(I just wish my mother would learn to, you know, ask me or give me fair warning or leave me out of these conversations entirely or something.)

Yeah, that's really kind of uncool of her. Mad props to you for stepping up to the plate like that. Sounds like you handled that with a lot more grace than most people would have, and it turned out to really matter to someone else.

[conuly]

Yeah, it isn't cool of her at all, but she has a knack of picking people to bring this up to who turn out to have close relatives who are aspie or who probably are aspie, so... I deal. (Given that she spent a few years, despite telling me herself that she always knew I was autistic and tried to get me diagnosed as a child, never bringing it up and trying to minimize it if I did, this is actually a positive step, I think. It's just annoying and not-cool.)

[queenlyzard.livejournal.com]

All very well put.