Almost three months ago, I wrote this:
February 7, 2017
Last week was surprisingly difficult. My parents are having some health problems, and I’ve been working overtime in my head…
My intention was to fill in the blanks and discuss how all the demands and pressures of my daily life have been exponentially increased, thanks to the added pressure of my parents’ medical issues. But really, that was just the beginning.
Things have become even more demanding, since I first drafted those lines. My parents have been finding their way through the proverbial brambly thicket of Big City healthcare (they’re going to a leading hospital in a major metropolitan area nearly 2 hours from their rural home, instead of the less sophisticated – and less capable – options around them). They have help from a friend who’s a medical doctor, who speaks the medicalese of the world they’re traversing. He drives them to and from appointments, talks with the doctors, and also examines the lab reports to interpret them in lay terms. That’s a huge advantage, because neither of my parents are comfortable interacting with doctors — especially when it’s a life-and-death situation. They trust this friend. And in true Aspie/Autist fashion, they are looking to him as an Authority in these medical matters.
I’ve done some travel to my parents’ place, making the 9-hour drive with my partner in March, and helping her manage her pain and mobility issues. I got their paperwork squared away and got complete copies of the legal docs to my siblings and myself, and I also helped my partner recover from the trip, which really set her back, physically.
Things had settled down with regard to my parents, but then my aunt MG died — the one obviously autistic member of our family who was very much a part of all our lives. She was fairly impaired, socially and communications-wise. That’s not ableist. That’s a fact. She had trouble understanding what was going on socially, and she had an almost debilitating stutter and speech pattern that made it so difficult for her to say what was all going on in her mind. She was smart. But it was well nigh impossible for her to show it.
Her death was a real blow to me, for some reason. It was hard for us all, but I think the autism part is what got to me the most. Just that sense that, had she / we only known about autism earlier, we all could have taken steps to help her live her life the way she wanted to — and to show the world just how smart and dedicated she was.
At her funeral service, however, I discovered that she’d actually had many friends who really valued her for who she was and what she offered. The people who showed up for the viewing, spending time talking to the family standing in a line beside her open casket, all spoke so highly of her and were truly hurt by the loss of her presence in their lives. They knew her as loving, dedicated, principled, a hard worker, and a real asset to their lives and the wider community. There were about 75 guests who showed up.
We’d been expecting less than 20.
So, that was a positive development. Of course, being in close quarters with my family for 3 days in a row, and being off my schedule for over a week (because I’d been on vacation, the week before) took a lot out of me. This past Wednesday was a day for rehashing all the old hurts and kinds of slights that my parents and sister (probably unwittingly) practiced towards me. I was always the difficult one. The combative one. The one who spoke her mind, which was fine, but did it in a way that didn’t soften the blow of my observations. I’ve never seen the point in sugar-coating my conversational points. It takes so much away from the words and the meaning. But my family got too caught up in their old perceptions of me as an unfeeling, brusque oaf, that it was hard to interact with them at all on Wednesday.
Then again, we were all tired. We were all off our regular routines. And that’s never a good thing, when you’re a bunch of Aspies / Autists trying your best to peacefully co-exist in the space.
Thursday was a relief. We all felt better, knowing we were getting back to our routines was reassuring, and we were all able to deal with each other as civil human beings who were already missing each others’ company. In the morning, we had a brief chat about one of my nephews, who has been struggling in school for years, dropped out a couple of times, and has been trying to finish up, so he can get on with his life. He’s a “textbook case” of Aspergers, practically plucked from a Tony Attwood book, but his parents haven’t been able to pin down just what his problem is. Sitting across from my sister, as she talked about how he couldn’t get things done on time, how he isolated, how he would rock in his chair at family gatherings… how he spent time alone in a darkened room, how he wasn’t outgoing in public, how unaware of his behavior he was, etc. etc., it took me completely by surprise when she said, “If only we could understand what’s going on with him! It just doesn’t make any sense!”
I replied, “Well, there’s always Aspergers.”
She paused for a split second, then pretended she hadn’t heard me. She continued to fret about his issues, and I spoke up again.
“Have you read anything about Asperger Syndrome?”
She shook her head “No,” and I was… off to the races… brain-dumping a bunch of observations about my nephew, along with references to how sensory overload is a huge piece of things, and if he could only see that’s what was going on, he could manage his issues and also find others like him. He’s so definitely NOT alone in this world — except, he is. Because he doesn’t have a thorough understanding of his condition / issues / traits, he can’t address them at the root level. I blurted all this out in a rush that left me physically shaken. My hands were trembling, when I looked down at them, and my voice quavered.
But at least I said something.
The timing wasn’t great, however, because then it was time for me to leave for home, without getting to discuss this topic in greater detail. Still, it was a huge relief for me to get on the road and just leave. Being around my parents is pretty demanding, because they are so set in their ways, and they are also pretty merciless, when it comes to critiquing others — which they do with great gusto and self-confidence. I try to blend with them, when I’m in their midst. There’s no sense in sticking out from the crowd, because like the nail in one of my steps at home, whenever you stand out from your surroundings, you get hammered back into the hole you’re supposed to occupy. It’s not malice that drives them to it — it’s anxiety. That visceral, anguished surge of panicked pain at the sign of anything that’s out of order.
My life is completely out of order, in their view, whenever I show it to them in all its rogue glory. And I have better uses for my time, than fending off the hammer. So, I keep myself “in line” while I’m in their house.
It is their house, after all.
So, what does all this have to do with expatriating myself? Quite a lot, actually. Driving home, I listened to an audiobook biography of Simone Weil, and I was struck with how much her life really paralleled mine. Not socio-economically, because I wasn’t raised in an upper middle class Jewish household in France, and I never did manage to get my degree, let alone receive accolades from my intellectual peers and/or stand out as a champion of the working class. But there’s something deeper and more pervasive about her that struck a nerve with me — and continues to, days later.
Regardless of our cultural and temporal differences… regardless of my lack of formally recognized education that pales in comparison to hers… at a personal level, there’s a whole lot I feel in common with her. The mysticism. The pain. The suffering. The connections to the workers, the manual laborers. The drive, the need, the anguish, the shrinking from human touch, and the transcendence of rapt attention that cannot be broken by anything. By anything at all.
And it’s at that experiential level I consider her an older sister, an instructing peer, a member of my autistic tribe, who I only wish had realized the reasons for her anguish. She was not disgusting. She was not a reject. She was not deserving of punishment. She was autistic. A different neurotype. A different phenotype of human. Had she realized that, while still alive, I wonder what a difference that understanding would have made for her.
So, I’ve emailed my sister information on Neurotribes — a nice thick book that’s just the kind she loves to devour. That should keep her busy. And it should jog her imagination a little bit — depathologize autism… get her thinking about how her son presents, how his difficulties have played out, and possibly see that he actually does have a community waiting for him, if he wants to join us. It would be completely awesome, if he could put things together for himself, and have that singular sense of having everything “fall into place” after years and years of pain and struggle and suffering.
It’s a different world we autists inhabit. That much I know. We have our own culture, as Sonia Boué has said a number of times. We have our own sensibilities. We have our own priorities and best practices. And that world, that way of being, is always there for us, anytime we wish to enter into it. We can enter with others. Or we can enter alone (autism being, essentially, alone-ism). We’re not necessarily lonely. Unless we’re surrounded by those who do not understand us, who make no effort to learn about us, who diminish us by insisting we “can’t be autistic”, and who take great comfort in not being able to recognize us as residing squarely on the autism spectrum.
It is to that autistic world, I increasingly expatriate myself. I remove myself from non-autistic (and autistic-but-won’t-embrace-it) company, when I can. Yes, I reside and work in a neurotypical world. I participate in mainstream activities, fulfill my professional duties in a neurotypical (well, sort of) workplace. And I read mostly neurotypical writers and researchers, because that’s mostly what’s available.
But that’s changing. Because it can.
I’ve got Laura James’ book Odd Girl Out lying on the table beside me. It’s heavily marked up — nearly every page of it — with yellow highlighter calling out lines that resonate with me. A whole lot resonates with me. Or it strikes a completely opposite — but still very spectrum-y — note, which calls out our similarities even in light of our dissimilarities. It’s a spectrum, this autism business, after all. So, there will be variations our shared theme. And those differences (with my recognition of them), make our unique spectrum all the more accessible to me.
And I have my Simone Weil books on the way. I ordered a stack of them on abebooks.com, without wrecking my bank account, which is in itself priceless. I’ve got my printouts of papers on specific aspects of her experience and writing. I’ve written some posts about her, as well. Discovering her is about more than finding a contemporary female philosopher/mystic’s voice. It’s an experiential portal opening up to a commonality between her and me, which extends out across the whole of terra autistica… climbing into the hollow trunk of a tree with a vast network of roots that connect us autistics in countless ways that the mainstream, allistic world cannot detect.
We’re under the surface. Under their radar. Well-hidden, expertly concealed. But we’re here. And we have a world all our own.
It’s to that world I now take myself increasingly. Yes, I pass as neurotypical. It spares me the wasted energy on trying to get others to recognize and understand me. Yes, I camouflage. Yes, I blend. In my own subversive way that undermines the primacy of the allistic model, by the very act of living my life as I am, how I am, how I wish — and even more importantly, how I am compelled, by forces beyond my control and ken.
That world has always been there. I’ve always inhabited it, to some degree. Only now, nearly 52 years into this earthbound experiment, I’m doing so with full awareness and a conscious choice.
Because – as Simone said – I can.
Therefore, I am.
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