Monday, August 23, 2010

What Would I Do Differently

AANE posted a talk by a man who was diagnosed with AS at 72.

A person commented in response to that article, "He does raise an interesting question: what would an adult do differently with an Asperger's diagnosis?"

I actually could interpret the question more than one way. At first I thought the question asked, 'What's the point of an adult diagnosis -- what would an adult do differently, anyway?". But I think actually the reader is asking what we might do differently in our lives if we'd had the information about aspergers earlier? What would we do differently in our lives up til now if the diagnosis came at 5? Or even 8 or 14?

I tend to recoil from the notion of regrets, because I grew up in a regret-oriented family culture. One that obsessed/s over what one might've done differently. If only. So I tend to dismiss all of this thinking as useless self-flagellation, pointless teeth gnashing, and a wonderful way to inflict pain on those in the general vicinity of the lamentations.

But as I thought about the question for a few more seconds I felt like it actually isn't just "one of those". In part because my head mixed the questions "what's the point of adult diagnosis" and "what would you have done differently if you had the dx before adulthood"... It began to feel more interesting.

If I'd had a diagnosis earlier? I'd have worked on the things I'm working on now, but only earlier, so presumably I'd be on different lessons. There's no guarantee of this. Some lessons come before others, but learning some given lesson at 33 versus 13 is a very different undertaking. Also, some lessons can't come earlier, no matter how early a diagnosis might be.

I'd have understood some of the answers to 'what's wrong' and why the world felt harder for me than for others despite always being told that I was so talented. In other words, maybe I'd have had a more realistic picture of myself. Maybe my parents would too -- since the dx of AS doesn't affect anything about my talents. However it has affected my ability to pursue meaningful and productive channels with them. When I was directed, I excelled. When I became so nervous about the Next Big Step that I wanted to quit, I quit. When it was all up to me, I folded. I didn't know how to ask questions, or seek out mentors, how to figure out where I was in relationship to other people, what other people thought of me, how to speak up for myself, etc etc.

As a child, to have been seen as not just artistic and intense but actually having trouble making sense of the world and being unable to articulate that I was, I think would have had a great impact on the trajectory of my development through my teens and twenties.

In my twenties, I might have never gone on a large number or inappropriately high doses of various medications to address "depression" and "anxiety" which apparently had no real "cause" -- instead, my lifelong depression and anxiety would have had a context, and I'd have been addressing the context instead of just sedating out the feelings. Feelings, I might add, which were accurate interpretations of reality.

I'd have seen my difficulties in romantic relationships in a different way. I have had a sort of immaturity that I could never see, because parts of my development as a child were so precocious and I was always called 'mature' and advanced for my age. It's like my perception of myself and where I actually was had been so different, I was unable to see how I was putting unreasonable pressures on my partners by being like a child.

I might've chosen to find a transitional place to live in between family and partner, but that offered more support than just a college dorm. Eventually, living independently (which I've never done). I think because I never lived independently I've never developed proper routines -- not that I want to become rigid in one particular way, but because as it stands, I have no routines, and my self-care as a result is kind of poor. In an exposure anxiety kind of way, I only do with someone else, often neglecting myself, and when alone, I become almost inert.

If I'd had a diagnosis earlier (if it existed when I was a kid), I wouldn't be the late-diagnosed adult I am now, with all my resultant maladaptations and gifts of living 'outside the lens'.

I definitely hid some of my deficits, which I consider to be a maladaptation. I hide what I don't understand. When I don't hear things, I sometimes pretend I heard and attempt to 'catch up' by filling in the pieces with what's said next. Maladaptive and ineffective.

But I can think of a lot of things that maybe I wouldn't trade out. Some things made me stronger, or just the awesome person I am today.

I had to figure out things on my own, which exercised parts of my brain that are stronger as a result.

I withstood abusive children without understanding how wrong (or right, depending on your perspective) they were for teasing or excluding me. This has made me a highly compassionate person.

I do terribly in groups, but when I'm spending time 1:1 people appreciate my friendship, my insights, my listening, my thoughtfulness.

My intensity and sensitivity are great gifts in my career as a yoga teacher. My auditory deficits have made me appreciate the musicality of the written word, and the poetry of the pure notes of a french horn. My sensory sensitivities have made me a fabulous lover. I wouldn't trade any of these things.

But I think OT and possibly speech language therapy might've helped me integrate the world more, therefore learning (social) lessons that I'm only now feeling the full magnitude of never having learned.

I'm not really filled with regret. But I do appreciate the great challenge that lies ahead of me as I am just learning in a deeper way, what that challenge is.

Friday, August 20, 2010

On Being Versus Having

(ignoring domain name, addressing content)

I really (really really) don't like the title to the post -- Do You Have Autism or Does Autism Have You?

Whaaaa. It's asking: are you survivor or a victim?? Neither, doughbags. (Apologies if the title was written by the author, but for some reason, I intuit that it wasn't.)

Along these lines, I'm curious to find out thoughts on Rachel's article here

Everything I am is completely me: I am entirely autistic, entirely Jewish, and entirely female. If you split one of those things off, I wouldn’t be myself anymore. You can’t take away my Jewishness and think that you will recognize me. You can’t take away my being a woman and end up with a complete human being. And you can’t take away my being autistic and think that I will continue to exist, any more than you can take away all my veins and capillaries and arteries and think that my heart will continue to circulate blood throughout my body.

Rachel blows the Autism Speaks question out of the water, answering their title question with, "I am neither a victim nor a survivor".

I'm ambivalent about how to interpret "has autism" because while I don't "have femaleness", or "have Jewishness", I dont *feel* like saying I am autistic or have autism are either grammatically invalid, and one or the other doesn't imply a straight negative. Although it does describe challenges that I encounter with the world. It describes a particularity of my experience -- in my opinion, in a very general and broad-stroked way. In fact it captures very little of who I am, and I almost want to reject the label.

Maybe that's another post. Unfortunately most of the world doesn't really "get" the difference between "T/truth" and/or social construct (which aren't mutually exclusive), which is such a nuanced conversation that it borders on the esoteric.

I do agree with Rachel. The question (do I have autism / does autism *barf* have me / am I autistic)  isn't valid. One doesn't have to insist that autism is negative or positive, or even essential or non-essential, to question the very question.

In terms of identity politics, claiming of terms, and "what we want to be called by other people", having the debate is essential, privleging autistic voices over the proclamations of secondary or tertiary parties is essential.

I think some of the confusion lies in part ith the evolution of identity politics -- in the disability community in particular? I'm not sure. Like, person-first language and all that. It is a kind of reaction coming out of needing to establish personhood before aspect-of-personhood-that-is-negative. Two things are happening that make this person-first argument less valid or important:

1. The descriptor itself is less of a negative, even if it doesn't become a positive, it becomes a "fact" or "aspect of being"

2. That aspect of being then is recognized as *inextricably linked* with their experience of being human. Therefore it is actually important in terms of recognition of that person's experience. A gay person has a particular experience of being gay. Their experience, if they were not gay, wouldn't be the same if you took that aspect of being away. If we erase this fact we erase recognition of discrimination and hate.

It's like colour-blindness in terms of race. When people say "I don't see the person's colour, I only see who they are", actually they AREN'T seeing who that person is. That person has gone their whole life with the experience of beingness as a person of colour. This isn't a generic experience, therefore growing up in the US South or rural US or urban US or Brazil or Britain as a person of colour is a unique and particular experience. It is inextricably linked to who the person is. Notice that doesn't mean "all of who they are" it just means, you can't take that experience away and expect that person to be who they are. From what I understand, race politics in the US is way different than from where I am, or elsewhere, in terms of how people are thinking about the debate. I think examining how identity politics is talked about in other communities is very important to learning about how to navigate this within the autistic community.

Other people's understanding when they use the word "autism" IS important. It's not simply a matter of semantics, and the semantics matter. Language creates the world, in one sense, and is alive, and has real effects on people.

What would I choose to describe myself, then?

Awesome person. Or person who is awesome. Either one is fine. (takes tongue out of cheek)

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