Saturday, April 29, 2017

How neurotypical am I?

I said I'd write a post later about autism and me, so here we are.  It's understood by scientists that family members of autistic people often have some of the same traits, known as the "broader autism phenotype."  It's not Asperger's; we're talking even less autism than that, a level that wouldn't be diagnosible as anything.  So it's not like this discovery has clinical significance, it's more that it sheds light on the genetic origins of autism.  And I think it should be more broadly known, because it can cause parents not to seek a diagnosis for their child's autistic behaviors, because "all the kids in my family are like that!"  Certainly that was a reason I wrote off so many of Marko's behaviors, like stammering, fidgeting, and massive meltdowns -- that's pretty common stuff in my family of origin.

My knee-jerk reaction to the question of whether I have any autistic traits is "of course not!  I'm the normal one in my family!"  And this is true.  My brother was always the "space alien" and I was the normal child.  He couldn't sell candy for a fundraiser, so I sold his candy for him.  He claimed not to experience emotions; I had lots and was very introspective about what emotions they were.  I also have always been highly empathetic of other people's emotions.

However, not all that stuff is exactly defining of autism.  Being unemotional or unempathetic isn't an autistic trait -- though some autistic people have trouble identifying which emotions they or others are experiencing, and do not always express their emotions in a way others understand.  Even that, though, isn't characteristic of everyone on the autism spectrum.

I definitely do have sensory processing problems and have all my life.  I once tried writing out a list of all the sensory things that I can't stand and the list went for pages.  Stuff like cutting my nails, touching velvet, being jostled in a crowd, licking a wooden spoon, driving through partial shade so the sun flashes in my eyes, loud noises of almost any kind.  But most of my family is the same.  I initially said we were "highly sensitive" and this is true, but I think it does tend more to the "disorder" side because it's not just sensitivity, but trouble processing and distinguishing sensory data.  When I pay attention, I realize that I'm not actually distinguishing sounds (for instance) any better than anyone else -- they just bother me more.  And sometimes they bother me because I'm not distinguishing them well.  For instance, one of the reasons I hate the phone is because I often have trouble making out other people's words, and the focus I have to put in to understand the other person taxes my brain and makes me feel annoyed, especially if there are other distractions around.  Another issue is that I can't catch a ball well at all.  I track the ball very well when it's far away from me, but when it's close by and moving fast, it's like it disappears -- I can't see it for a second, and then it hits me in the face.  I cope by tracing the trajectory of the ball and guessing where it will be, but it doesn't work if things are moving and changing quickly.  I suck at basketball because I'm unathletic, but I suck at ping-pong too just because it ball goes too fast.  I think this is true of most of my family (with the exception of my one unusually normal sibling), because we are terrible at ball sports of all kinds but have done well at things like running, wrestling, and lifting weights.

But as far as I can see, no one has studied sensory processing problems in the parents of autistic children.  The studies currently done on the broader autism phenotype focus on language and social problems and excessive rigidity.  I have never had any kind of language delay.  I talked at the normal age and talked a lot.  I did have a stammer for awhile (which reappeared after boarding school for a few months).  And I wouldn't call myself rigid; sure, I like to put on my right shoe before my left, and to have my mornings and evenings go more or less the same way, but if you surprise me with an outing to a place I've never been, I'll generally be happy with that.

But social problems .... well.  How exactly do you tell if you have social problems versus social anxiety or introversion?  I know I like small groups better than big ones; so do about half of people.  I know I get very nervous before meeting people, but so does everyone.  What I really want to know is whether I am actually bad at social stuff, and I can't know that because I can't see what other people think of me.  I've reached an age where, if people think you are socially awkward, they don't tell you.  I took an Asperger's quiz the other day and it asked if I often miss social cues.  Well, how the heck could I know I missed it, if I missed it?  I don't know it ever happened if I missed it!

I grew up thinking of myself as extremely social, because I was always lonely, and I imagined if I had people to spend time with, I would never get tired of it.  I had two friends, my cousin and my parents' friend's daughter, and I adored them.  Both seemed so much more socially savvy than me; I was aware that my first-tier friends considered me more of an odd person they hung out with sometimes than their own best friend.  But, I mean, of course I wasn't adept socially, I was homeschooled.

When I went to school for the first time in fourth grade, I had a hard time adapting, but again -- homeschooled!  I had trouble realizing that the rules could occasionally be broken for good reason, like that it was okay to shout out to get the teacher's attention if you'd had your hand raised for twenty minutes and he wasn't looking up.  I cried if the teacher gently teased me.  I had several friends, but most of them kind of treated me like a pet.  I figured it was because I was the tiniest person in my class.  There was one kid who was really mean to me because she said I had a "staring problem."  I couldn't figure out where the line was between looking and staring; I knew that sometimes I zoned out with my eyes fixated on something, but it didn't seem to me like a big deal that someone should be mad about.

In fifth grade I was in Catholic school, where bullying was not really taken seriously.  So I got teased a lot.  I got teased for talking to myself, for being unfashionable, for having messy hair, for smelling bad, but honestly I couldn't figure out what exactly I was supposed to do to not get bullied.  One time all the "cool kids" randomly decided to be nice to me, and I was thrilled -- I'd finally made it past being "the new kid" and would now be popular!  But no, they just let me play Truth or Dare with them long enough to extract some new material to torment me with.  One time my teacher, very concerned for me, sat down with me for awhile to find out what my deal was.  I am not sure what made her think I had one, and I didn't know what to say, so I just broke down and sobbed for awhile and she was nice about it, and that was that.  A short time later she dismissed me early for lunch while keeping the rest of the class behind, and once they all came out to recess, they told me the teacher had told them they had to play with me because I didn't have any friends.

This wasn't quite true.  I had some friends.  They were mostly misfits of various kinds; I hung out with a crowd that was obsessed with Sailor Moon, a show I'd never watched.  Or I played with the third-graders who had recess along with us.  There was one girl I got along really well with; we wrote these space soap operas together where everyone had zillions of babies that all got married.  But I mostly didn't get along with anyone well enough to get invited over to their houses, or to be in the group they put together for the talent show.  I had one friend who I carpooled with, and she invited me over sometimes.  This followed the pattern of my closest friend at my previous school -- she would give me makeovers and instruct me on pop culture.  Again, I felt like a pet.  We had fun, but anytime there was another friend available, I got ditched.

I got in trouble with one of the sixth-grade teachers for staring at her too intensely -- she had told me I was wrong when I knew I was right, and I couldn't think of anything to say, so I just looked back at her and she said I was being insubordinate.  It made sense to me -- my mom, too, has a really intense stare when she's mad.  But I did think that, being twelve, I shouldn't be too scary for an adult to handle when I wasn't intentionally trying to intimidate her.

The other sixth-grade teacher called my mother one time, concerned, because I often hummed and rocked back and forth while I worked.  She asked me about it and I didn't really know what to say ... I figured I just wasn't used to sitting quietly in a classroom to do schoolwork,  because I was homeschooled.  And that was that.

I was homeschooled again for seventh and eighth grade, and those years were pretty great.  I had friends in the homeschool group, because it was really too small a group to have outcasts and everyone was pretty nice.  We were all a little offbeat in different ways and that was okay.  People were finally interested in some of the things I was.  I really came out of my shell a lot those two years.  I remember one time I drove five hours in a van with a bunch of other girls to go to a Regnum Christi retreat, and I talked the whole time.  I just couldn't seem to shut up, even when everyone else got tired and wound down.  At the end I was like "I can't believe I talked the whole five hours!" and everyone else was kind of like, "WE CAN."  I realized I had talked too much and bored them all.  It was embarrassing, but no one stopped being nice to me because of it or anything.

Then, of course, there was boarding school.  It is impossible to say how I functioned socially because none of us were supposed to have friends.  No one would have either bullied or praised another person.  My directors said I was "emotionally immature," but I don't know if that was something they really thought or something they said to everyone, because they had zero understanding of normal adolescent development.  I was aware, though, of a number of us who seemed socially behind in some ways -- who were more desperate for attention, less able to hide negative feelings, that sort of thing.  I knew I was in that group; I thought it was because I was the youngest child.

I remember one time I was told by one of the consecrated women that I should imagine I was looking down on the conversational group from above, and imagine what I looked like from the outside.  At the time it made me massively self-conscious and I became convinced that everyone else despised me.  But perhaps she was just trying to help me learn how to take turns talking.  That has always been hard for me.  In some contexts, you basically have to interrupt someone if you ever want a chance to talk at all, because people overlap; in others, that's horribly rude and you have leave a long, painfully awkward pause before you say anything.  There is no rule about how long you're allowed to talk before you give someone else a turn, and no real way to tell what kind of stories are generally interesting and which are interesting only to yourself.  Sometimes you can tell afterward that you bored people, but it is hard for me to simultaneously pay attention to what I'm saying and how other people are reacting.  It's not so tough when it's one on one, but one on one conversations weren't allowed -- all conversations were in groups of three to six.  I can roughly estimate whether I'm speaking more or less than half the time, but I cannot for the life of me calculate whether I'm talking more or less than one-sixth of the time.  And, of course, in reality a group of six people does not split the airtime equally; the extroverted, fun, entertaining people talk the whole time and the quieter people just watch.  I am not sure which I am supposed to be; I'm good at talking, but I don't know if I'm boring.

After boarding school I was a changed person.  Instead of being oblivious and a bit off, I was extremely cautious.  I knew I might make a social misstep, but I didn't know how to be sure I wasn't making one, so I didn't talk much.  I didn't want to wear the wrong clothes, so all my wardrobe choices were extremely conservative (and still wound up being wrong).  I ran a club for younger girls and did okay with giving the talks and so on, but I didn't make any friends at first.

And then I started emailing a girl I knew only slightly.  We'd always been in the same groups but she was very quiet, and now that I was quiet too, it was even harder to get to know each other.  But by email, we both opened up and built a friendship deeper than any I'd had previously.  I realized that when you took away the pressure and timing problems of real-life conversations, it was much easier to get to know someone.  No talking and listening at the same time, you did them separately and could go through your friend's email and pick out the things you wanted to respond to.  We were both way into The Lord of the Rings, so we talked about that by email every single day.

My social problems seemed to disappear in college.  Everyone was nice!  Nobody bullied me!  It was great!  I did have one person tell me I had a tendency to run on, but I felt that was unfair because I knew the guys in our social group always did way more than half the talking.  But in general, the conversations were about intellectual topics that interested me, everyone felt free to interrupt if they had something to say, and no one was taking me aside separately to tell me I was annoying everyone, so, success! I did have some confusion about rules; boarding school had loaded me up with a ton of social rules like "don't ever discuss your health" and "never lean against the wall" and "never say anything negative."  I knew that not all of these rules applied to the world outside, but I wasn't always sure which ones.  Like, apparently it's okay to lie on the floor at some kinds of parties, but not other kinds.  You're just supposed to know.  I am not sure if I always gauged this right.  But if I messed up, people generally didn't complain.  My social group was self-selected out of very nerdy and offbeat people, and you had to be pretty darn weird to get funny looks.

And now ... *shrug* I don't have a whole lot of a social life in meatspace.  I have a couple of friends I have playdates with a lot.  We have a good time; sometimes it's awkward, but I never know if it's them or me or both.  I have had some issues with humor; things I think are hilarious don't get laughs, and if I tell a dirty joke, people are shocked even if they were telling them too.  They don't expect it from me.  And I know my delivery of any kind of joke is bad, so I usually stick to "deadpan rendition of a funny story" or just laughing at other people's jokes.  I still struggle in groups; the other week I had a book club and I was actively paying attention to how I managed the conversation, and the answer was that I either monopolized the conversation, or I kind of checked out.  And I hate how this makes it look like I'm self-obsessed.  Like everyone, I'm interested in myself (see also: this whole blog post) but I'm not uninterested in other people.  It's just that it's hard to listen to what someone else says and come up with a response that goes off of that, on the fly.  Instead I tend to talk about whatever I was thinking about on the way there, and spend the way home thinking about all the things other people said, and what I might say in response to them next time.

I'm shy, shyer than I used to be, but I think it's because I'm more aware than I was then of all the ways you can go wrong socially.  I have gone to several meetups lately at the park, hoping to make friends, and sometimes I just chicken out and watch the people from a distance, not being sure how to approach.  And what if you approach and say "Is this the eclectic homeschooling group?" and they say "no, it's not"?  THEN what do you do?  I don't know!  Even if I do get up the guts to actually meet up with people, it's usually horribly awkward, we make boring small talk, we all go home, and I have exactly the same number of friends as before.  Like, how many of these unpleasant social occasions do I have to go to to make an actual friend that I could meet with one on one, as I prefer?  I have made ... oh ... two actual friends at these things, in the seven years I've been a parent, if you count a friend as someone you meet with individually.  And it's really hard to force yourself to go to things when you like the people, but you know that you're very likely to just stand there feeling stupid the whole time.  Couple that with how exhausting and overstimulating my life is without that stuff, and you have a recipe for never going anywhere.  And given how much easier and more fun online interaction often is, I'm not sure I even feel bad about that anymore.

Going over all this, it all seems obvious that I have social difficulties.  That it's not that I've just happened to have been bullied by such a wide array of people, but that maybe I am (as at least one teacher has said to me) bringing it on myself by being so weird.  I've learned to socialize at least well enough that people don't appear to be put off (but how would I KNOW??) but at the cost of so much anxiety that I'd usually rather not even try.  I don't know what it would take to get me to feel confident socially; and actually, if I could, wouldn't that just put me right back at "talks for five hours at people who are tired of listening"?

I just don't know if I should rewrite the narrative of my life from "I am socially anxious because I have had so many negative social experiences and too few positive ones, I should just put myself out there more" to "I am socially anxious because I am congenitally bad at socializing, it's possible that nothing will help."  On the one hand I feel more acceptance about it the latter way -- I don't have to be angry at everyone because they did not Ruin My Life.  But on the other, it absolutely increases my anxiety.  I worry that I am putting everyone off by something I don't even know I'm doing, that everyone knows I'm different but me, that they've been hinting at me that I'm doing something wrong and I've missed all the cues.  How, as an adult, would I find this out?  (John is no help; one reason I like him so much is that he isn't so much more socially competent than me as to make me feel inferior.)

Perhaps, as with Marko, this doesn't really have to change anything.  I can be easy on myself with things that are hard for me while occasionally seeking them out for the sake of my personal growth.  It does make me feel like I should put a higher value on convention and etiquette, realizing that my own inuition might not be as reliable a guide as I think.  I would rather trust my gut, but it's more important to know I'm not making other people uncomfortable.

A part of me feels like even talking about the broader autism phenotype is being a special snowflake, trying to appropriate a real diagnosis that belongs to other people.  I just read all these books and think, "But I do that.  And that.  And that."  Yet, I mean, it's like horoscopes -- you read the personality description and say "that sounds like me!" even if it turns out later it was the wrong one for you.  Because it's easy to see yourself in anything.  Still.  I think it does have some explanatory power for questions like "why is my family so smart but also weird?" and "why did I spend my entire childhood on the outskirts of kid society?"  And maybe that's all it is.  The good side of it is, I understand a lot of what Marko thinks and does.  Not all, by any means, but I think a little more than a lot of people do.  It's a bright side.

(The dark side is thinking, "His autism is my fault.  And John's fault.  Each of us should have found an extrovert to marry."  But, his autism is not a tragedy, so I try not to think that way.)

If you know me in real life, feel free to comment anonymously and tell you if you think I'm socially awkward.  If you say no, though, be aware that I will have no idea if you're just saying that to make me feel better.

8 comments:

The Sojourner said...

Hey! I too had a high school friend with whom I primarily communicated in LOTR themed email missives! (And she's from WA too, actually. I wonder if you guys have any mutual friends.)

Anonymous said...

You're not as weird as you seem to think you are, but I think you do miss some social cues. Your explanation of how you tell if you're monopolizing the conversation is enlightening. I believe people can usually tell by observing the other person's reactions (facial expressions, tone of voice, eye contact, etc.) if the conversation topic is boring them or not, so this may be a way in which you're different. Anything social is much easier if you can read people's reactions!

You empathize with people's feelings, but I think it may be hard for you to express empathy to them. I wouldn't say that's necessarily related to autism, though, as many people struggle with this. Sometimes, you can also say something very tactless without realizing how it will affect the person you are talking to. Again, this is not exclusive to autism, but it does seem like you have trouble predicting how people will feel about the things you say.

In summary, I would say that you have some socially awkward traits, but not to an extreme level. This is meant to be a helpful response to your question, so I hope it was.

Anonymous said...

Different "anonymous" here. I don't know you in real life, but I can say from experience that women grow more confident, assertive and outgoing as they age.

Don't worry about how you appear to others. Focus on your own happiness.

Sheila said...

See, I can read people's faces very well if I'm just looking at them. In TV and photos I am very good at reading them, and I never am in any doubt of how my kids and husband are feeling as they go through their day. The trouble is that in social situations you have to talk AND listen AND watch faces and it's very hard for me to focus on all three. I thought that was proof that I was normal, but it may be instead that I'm using a more explicit/intellectual part of my brain to read faces rather than just intuiting. I know that it's hard for me to focus on more than one thing at a time.

After every social situation, I tend to postgame with myself and realize, "Oh, when I said X, she might have thought I meant Y!" or "I never responded when she said A, she probably thought I was uninterested!" Like, the other day I hung out with someone who kept talking about a trip she had just been on, and I didn't ask her any questions about it because I didn't want to sound nosey. In retrospect, she probably brought it up to have a conversation about it and *wanted* me to ask about it. I don't know why I didn't catch onto it at the time.

I guess everyone, or at least all introverts, rehash their interactions afterward and obsess about what they did wrong. But I do it a lot and I very often do find mistakes. It's hard not to let those mistakes turn me off of keeping on trying.

divyaraut said...
This comment has been removed by a blog administrator.
saeculustra said...

Speaking as a probable autism phenotype myself, I'm beginning to think what I miss is not so much facial expressions but a more hidden sense of what to say and when. It seems like there's a real flow of energy that governs conversation or communication that I'm constantly guessing (and failing) at, and that other people simply feel. Just a theory. Still trying to figure it out myself.

Anonymous said...

I don't know you in real life, only from Seraphic Singles combox, but we ALL get distracted and don't ask the right questions, or occasionally talk too much, or zone out when someone we like is talking. Even my extremely popular brother does these things (and everyone still loves him!). One of my best friends was homeschooled and just zones out and hums sometimes. We aren't friends with someone because they do the right things socially all, or even most, of the time. There are deeper reasons: they are someone who will walk with us on our journey in this life. Don't worry too much about what other people think of you and every social interaction. Just keep trying and think about the other person: what they might need or want to talk about. Be a good friend to the ones you have, as much as you can.

I read your comment in the Carrots comments about NFP and everything being difficult- came over from there and realized you are the SS Sheila (this sounds like I read blogs all the time but actually I don't). Anyway, lots of prayers for you. I hope God gives you a way, with a NFP method that works (Creighton? Marquette? Standard Days method with a few extra days on each side- pretty crappy but better than total abstinence?) or a way with the children he sends.

Sheila said...

Anon, isn't it just a function of the way blogs sort of form clusters? I'm always seeing the same people, and it's not because we all spend all day on the intenet. But it's a bit of a blog community, where we follow each other's comments and links to all the same blogs.

I know a lot of the stuff I do is stuff pretty much everyone does. There's just a continuum from average person, to me, to Marko, to a more severely autistic person. I think it helps us understand autistic people better when we realize that many of the things they do are things we might do, just more occasionally. Everyone can sometimes be overstimulated, or fidget, or lose the thread of a conversation.

Standard Days is, IMO, worse than nothing -- all the abstinence, plus a low effectiveness rate. Ugh. Some people do like Marquette or Creighton postpartum, but ... well, both of those would, for me, include a lot of abstinence plus leave me feeling panicky, so total abstinence is really the best solution at the moment. It means I got horribly queasy for no reason last week and did not lose one second of sleep worrying over whether that meant anything. The peace of mind, after YEARS of being afraid, is really what I need right now.

Saeculustra, I once described it as a faulty timer -- that everyone instinctively knows how many seconds of quiet to leave after someone has spoken, and I never know what the right amount is. But I'm not sure that's exactly right, either.

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