Reading #OddGirlOut – When you realize what’s going on

Passage from "Odd Girl Out" describing exploring autism criteria - and realizing it applies to you
Passage from “Odd Girl Out” describing exploring autism criteria – and realizing it applies to you

What a lot of non-autistic folks fail to understand, is how critical it is for autistic folks (especially women and “atypically” presenting men) to understand the nature of our difficulties. A lot of non-autistic folks seem to think that drawing attention to problems will make them worse (or make them come into existence). As though we never noticed them before, or we’ve never struggled with them… sometimes for years.

Every single word of this rings true for me.

… but in the past I have failed. Confused and befuddled, I have given up every time.

Living without a thorough (and scientific) understanding of how you’re built and why you “work” the way you do — and don’t — is miserable for people on the autism spectrum. It just doesn’t work. Without an understanding of the underlying principles and the overarching themes of our lives, we lack the conceptual patterns we require to make it through each day in the best way possible.

It’s not that we’re looking for something to be wrong with us, when we investigate our autistic selves. It’s that we’re looking for the reasons that we’ve always known there was something different about us — a little odd, a little off — and we’re looking for the correct ways of A) conceptualizing it, and B) actively managing it.

My focus settles on deficits in non-verbal communication. ‘That’s true,’ I find myself whispering. I find eye contact uncomfortable and have to remember to do it. My body language and facial expressions are often off. Often I feel I have to arrange my features into what I believe is the correct expression. I once asked my doctor about this and she said: ‘There have been certain times when your expression was maybe not what I thought it would be, given what we were talking about. It’s very subtle, A look or an expression or a twitch or something that was slightly different.’

OMG, I do this all the time. I’m often deliberately posing in a way that I’ve learned will work in different social situations. My body language. My facial expressions. Holding myself in a certain way. So that I don’t stand out. So that my subtle differences don’t make others uncomfortable in an almost undetectable way — which nonetheless causes people to instinctively distrust me or shut me out. I’ve learned from half a century of experience, what works and what doesn’t. Small wonder, I fit in so well, now. I’ve learned my role well.

Ironically, I’m at the age where I’m less and less interested in playing that role. Funny, how that happens…

. . .  I certainly do have deficits in developing, maintaining, and understanding relationships. This I have always known and recognized. I can often begin relationships, but don’t have what it takes to keep them going. I rarely see any of my extended family. I can go for a year without seeing my parents, aunts and uncles or cousins. I find it overwhelming. I don’t know how to be involved with the minutia of other people’s lives.

Same here.

Same here. ( Is there an autistic echo in here? 😉 )

I’m terrible at maintaining relationships. It’s hard for me to deal with other people, in general. Especially when they are as overwhelming as my family. I’m okay when I’m with them intermittently, but honestly… navigating their emotional dramas is exhausting. I don’t have a whole lot of interaction with my family, to be honest. My father’s recent illness caused a massive “spike” in the frequency of my interactions with them, and it has not been easy at all. And I find myself pulling back deliberately from my family, even as they seem to need me even more.

That’s why my work life is so important to me. My job ensures that I have regular contact with other people that’s not necessarily a personal connection. It forces me to develop relationships with others, even if they’re not like me.

 

I’m just awful at all the relationship stuff, to be frank. That’s not a criticism — it’s an observation. I don’t “do” family or relationships very well. On my recent business trip, I got to see my cousins who live on the other side of the country. I was doing pretty well with everything — the unfamiliar place, interacting with the cab driver, the bright sunlight, the smells of their apartment. But I completely blanked on getting a picture of them. The rest of my my family takes a lot of pictures. They share them. They email them. They sit around and look at them. And when you travel and see other family members, they expect you to take photographs. It’s almost like they don’t really believe they exist — or you went to see them — unless you have photographic evidence. Sigh. Honestly, can’t we all just live our lives, without having to document every single danged experience for posterity? Argh!

Anyway, I got a picture of the jade plant outside their apartment, because it was scientifically fascinating to me. But pictures of my cousin and his wife? Nope. Why would I do that? 😉 I was so super-saturated by the drive along the ocean and up and down city streets and the tour of my cousin’s workplace and then the Asian restaurant where we ate… I totally forgot to even think of getting a picture.

I had a great time, but I was maxed out, for sure. The things I experienced, I experienced fully — I just didn’t get all of it. And I didn’t get any pictures of a lot of people. Inanimate objects, yes. People, no.

I think maybe that ties in with my difficulty in deciphering others. I can’t read their faces very well, I can’t interpret their expressions. I’m leery of taking bad pictures of them… so, I shy away from the whole activity. I personally hate having my picture taken. It feels intrusive and annoying, and I don’t want to do that to others — especially when I’m feeling maxed out and super-saturated with all the sensory input.

Anyway, yeah — it’s actually a huge relief to know there’s a reason why I’m stumble and fumble so much, socially speaking. I didn’t just magically develop social interaction and relationship issues when I learned about autism. I didn’t come up with some “medical student syndrome” where reading about disorders causes spontaneous experiences of them. I’ve always been this way. I’ve struggled all my life with this. And until I found out what was really going on, I just figured I was stuck.

Now, though, I have a whole bunch of information I can work with, and that’s a good thing. I know a lot more about autism and my own individual experience with it. That gives me something to work with.

Anyone who says autistic folks should be shielded from a diagnosis because it might do more harm than good, either knows precious little about the autistic experience, or their a control freak, or they’re downright cruel. I’ll give folks the benefit of the doubt and consider them clueless. But regardless of what others may think or do or advocate, I’ve got my own experiences to go by, I’ve got access to a whole lot of research about autism, and now with books like Odd Girl Out, I can see reflections and hear echoes of my own life.

And that’s a wonderful thing.

A wonderful thing, indeed.

2 thoughts on “Reading #OddGirlOut – When you realize what’s going on

  1. Wow, that is so close to my experience and life that I could have written both the book passage and blog post. I’ll add another benefit to identification (I hate it being called diagnosis, I’m not ill), it made me do what I always do when faced with something I don’t understand, I researched. And I’m very very good at that, special interests and all that 😉😉. So I started to come across all these wonderful blogs by other female autistics and for the very first time in my 56 years of life I found people I could really relate to. Whose experience of life so closely matches mine. Who can describe what I think and feel so accurately. It genuinely feels like coming home and that I’ve finally found my tribe. I have been the ugly duckling and now I’ve found the swans like me. So once we realise who we really are, we can find people like ourselves to connect with. No disrespect to any of you wonderful bloggers, I love my contact with you and reading your writings, but I don’t feel the need to meet anyone face to face, and I’m sure many of you feel the same, but to be able to read when I can choose the time and place and how long I do it for, that’s very comforting. Thank you for your writing.

    Liked by 3 people

    1. VisualVox

      Thanks for writing! I know the feeling – finding other autistic women (and men) online via blogs (and for me also Twitter) has been pretty amazing. Just seeing someone else articulating what I’ve known and experienced my entire life — but never had that acknowledged or validated — is an amazing experience. Like nothing else, that moment of “Ah-ha! I’m not imagining things! See!!! I’ve been right all along!” is just priceless.

      Glad you found us all – and yeah, I understand not needing to meet anyone face-to-face. I think it can sometimes be a bit of a let-down, because we create these personas for other people in our minds, which don’t necessarily correlate with the real thing. It’s nobody’s fault, of course. It’s just how we’re built. Better, sometimes, to let everyone gleefully co-exist in parallel universes…

      Liked by 2 people

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