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.

2 comments:

Anonymous said...

Hi. I'm 46 and just heard about Aspergers/late diagnosed autism a few weeks ago by reading the blog of an old friend who found out she was autistic when she was 50. I began to think I'm autistic too. No one has ever suggested it to me, but when I read the experiences of people like you and my friend Rachel and the may other writings I've read by autistic people, I am finding experiences that I thought only I had.

I can relate to somuch of what you say:
"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."
"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"
"My intensity and sensitivity are great gifts"
"I had to figure out things on my own, which exercised parts of my brain that are stronger as a result."
"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,"

-Isabel

Karen said...

I'm glad you wrote, Isabel. I am sorry it's taking long to respond to comments, I'm just scattered! It means a lot that you posted here.

I experience that over and over, encountering written or conversational accounts from other autistic people and recognizing myself in them. It is amazing to not feel so alone with experiencing the world in ways most people don't seem to understand.

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