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|Saturday, September 8th, 2012|
Once upon a time, a man sat down at his computer, typing away, trying to remember something he had forgotten, or perhaps regain a skill he had once had, but had long since lost.
But no, he told himself. That wasn't right; the skill was still there. He used it all the time, and it worked great, as long as he could avoid actually thinking about it or dwelling on what he was doing. That was the trick; not getting preoccupied with the idea of whether or not the thing he was doing was actually technically possible for him to accomplish.
He likened it to the Arthur Dent school thought on How to Fly. Douglas Adams had been a marvelous writer, and in his book Life, the Universe, and Everything, he explained that the knack of being able to fly boiled down to the ability to throw oneself at the ground, and then miss. One would accomplish this by being suddenly distracted on the way to the ground and completely forgetting about the fact that one was supposed to land.
The man pondered this literary reference from his childhood, turning it over in his mind, wondering how exactly it applied. But no, he scolded himself, that way lies sudden unforgiving impact with the ground. But it was too late, the scolding itself was sufficient reminder of the gravity of his thoughts, and despite himself, he came back down to earth.
Dusting himself off, nursing his bruised self-confidence, the man contemplated his predicament. There was nothing else for it now; for the moment, he was earthbound. But he spared a moment to gaze longingly back up at the sky, wishing for more, wishing for freedom, for the headlong rush of dancing among the clouds, unrestrained by the pull of more worldly concerns.
But the sky was still there, and the man could still fly. He would again, once he remembered how to forget, how to flow, how to let go. And perhaps that was enough, he thought, as he wandered away, toward whatever came next. There was time. That endless expanse would be waiting for him, when he was ready.
He resolved to comfort himself in this notion, that it was just a matter of time, as he drifted aimlessly on up the road before him. He would lose himself, and thus find himself, again. He held his gaze forward, into the distance, conspicuously avoiding gazing down at his feet. He didn't know whether or not they were still touching the ground. But for the moment, he wouldn't be quite so foolish as to look down and settle the matter.
Some questions needed to be left unanswered, danced around, lightly flitted across. Not every reservoir of the unknown was meant to be relentlessly scoured for every last drop of precisely nuanced meaning. Not every mystery was in need of solving, despite the man's love for puzzles. He played with this thought a bit as he progressed distractedly onward, seeking to regain that knack of being sublimely light on his feet, allowing himself to let some matters pass beneath his notice.
Carried away on the currents of such thoughts, he let them lead him where they would, back into the realm of the Dreaming, a Five for Fighting song filling his head. That ode to his childhood hero brought a distant smile to his face as he drifted away, swept up in the nostalgia. Yes, this would do, for the moment. It was a start.
|Sunday, September 2nd, 2012|
|Housing and Community Care
I’ve got a lot going on these days. On a personal level, I have immediate survival-level crises that I must resolve as soon as possible, so that I can have secure affordable housing in which I’m capable of functioning on a daily basis. Because many of my basic daily self-care skills are profoundly impaired by my autism, I need a lot of help to take care of my basic needs. But because my ability to maintain social relationships has also been impaired, and because I appear to the casual observer to be capable of functioning at a higher level than I actually can, I’ve never successfully called on as much help as I truly need.
I have thus lived in a continuous state of low- to high-level crisis for most of my life. Adequate community care for people with my condition has not yet been developed in this society, and I have not been able to cultivate a personal community that is attuned to and capable of providing for my idiosyncratic needs. Having that kind of access to community care, inherently set up to facilitate meeting your daily needs, is something the privileged, “able-bodied/minded” majority take for granted. Our society does not yet provide people like me with the same access to basic essential resources and community participation that it provides for the majority of people. So I have to independently create a customized and robust social support network for myself, which is not an easy task, especially for someone with social challenges.
But I’m working on it. Over the last few months, I’ve been working on integrating into a new social circle from the local neurodiversity community. A core of us have come together to advocate for our needs in the community and for autistic and disability rights in general, forming the new Washington State chapter of the Autistic Self-Advocacy Network in the process. And this process has also led to forming a wonderful group of dear new friends, who have frames of reference from which we can understand one another’s challenges, gifts, struggles, strengths and value. It’s been a magical feeling, as this community of like-minded people in which I feel like a true equal has started to coalesce. And I’m deeply grateful for the social comfort that this group of friends provides.
And yet, this is a community of people who share common difficulties with functioning in mainstream society. So while it provides me with a sense of community and purpose, this social circle isn’t well equipped to functionally compensate for the lack of resources and assistance we need in our daily lives. For that, I need to be part of a community that has more access to those kinds of resources, and has a cultural tradition of openness to sharing these resources among its members.
Thankfully, the autistic community isn’t the only subculture to which I have inroads. I’ve also identified as polyamorous, for just as long as I’ve known about my autism. Dealing with my disability and my needs as an autistic has required the bulk of my time and energy over the last seven years, with little left over to actively explore polyamory. But after being in a state of prolonged extreme isolation for the last couple of years in order to regain my health, I’ve both recovered sufficient energy to take a swing at it, and developed a profound craving for basic human contact.
A month ago, the urgency of expanding my social circle into the local polyamory community became evident. I realized that I had developed a pattern of spontaneous romantic crushes on people who I was still just getting to know, and that these intense feelings jeopardized the integrity of my fragile local social network, which was still in its infancy. I needed an outlet for this surplus social and emotional energy, a safe place where I could explore this side of myself in an atmosphere of acceptance.
Fortunately, I live in Seattle. When I first moved up here, I was introduced to the Center for Sex-Postive Culture by a sweetie of mine, and now I have the energy to explore this vibrant, active community center where there are opportunities to meet people in the polyamory community (as well as a host of kink-centric subcultures). For the past month, I’ve been actively attending events there, expanding my social circle. It’s been a splendid social outlet for me, and helped me break the rest of the way out of the isolated state in which I’d been keeping myself for so long.
Now, with the addition of these new connections to my existing social circle, I have the beginnings of a support network that maybe, just maybe, could be robust enough and supportive enough to help me meet my basic human needs. My needs are unusual, difficult for others to understand and identify, and chronically undernourished, which has kept me in a continual crisis state for the vast majority of my life. But now, it actually seems possible for me to finally become a truly functional and cared-for member of my community.
My current most urgent need is housing. My rent costs nearly 70% of my monthly income from Social Security Disability, and now that rent is being raised. It was (barely) sustainable for me when I was subsisting in a dormant, convalescent state for the past couple of years, but now that I’m active again, my expenses are greater, and my cognitive resources to functionally manage my finances (one of many extremely difficult tasks for me personally as an autistic) have decreased. Yesterday, I gave my 30-day notice to move out of my current studio apartment. I don’t have a new place lined up yet. But I’m in a situation where I have no other choice. I have to take a leap of faith, hoping I have access to the community resources needed to find a safe place for me to land.
This is all huge, transformational, life-changing stuff. And yet I’m only one of a great many people with disabilities whose access to housing and other basic human needs are only marginally supported, at best, by society. Granted, the broader social situation has been improving for a while, thanks to the Olmstead decision. That Supreme Court ruling back in 1999 required that states provide adequate access to integrated community housing, for those whose needs would be better served in that environment than in an institution. Thanks to that ruling, states have been transitioning massive numbers of unnecessarily institutionalized individuals into healthier community settings, greatly increasing their participation in society.
But now, all that progress is in jeopardy.
Due to state budget cuts to Medicaid, state resources for providing community housing facilities have been reduced, and large numbers of people are now in danger of losing their access to those facilities, if they haven’t already. These people may be forced into medically unnecessary institutionalization. The disability community sued the state for violating the Olmstead decision, and won. But now Gov. Gregoire is considering appealing that decision to the Supreme Court, which would open the possibility of the Olmstead decision being reversed on a national level, turning the clock back on over a decade of substantial progress for our nation’s disability community.
This week, my recently developed local social circle of neurodiverse individuals, the fledgling Washington state chapter of ASAN, is taking point on a massive statewide effort by the disability community to call for Gov. Gregoire to settle this court case and refrain from appealing to the Supreme Court. More details on this budding campaign will be revealed soon, but the upshot is that right now, my community needs me. Sure, my current personal crisis is dramatic and urgent and overwhelming, but part of being a member of a community is looking past all the struggles of my own personal life to do my part to help make sure that society as a whole can provide adequate care for those in need. If I want to build a community in which my basic needs and the needs of people like me can be adequately cared for, then it’s my personal duty to advocate for ensuring access to that kind of necessary community care and housing for everyone.
I’m being called upon by my peers to pitch in, and I’m answering that call. I can devote a week to fighting against the displacement of people with disabilities, fighting for their inclusion in society. Relegating disabled people to institutions where they are isolated and inadequately cared for is a lose-lose situation for everyone in our society. I’ll have the whole rest of the month to find a place to hang my hat. This advocacy effort is more important than my personal situation.
And so I’m calling on you, dear readers, to lift your heads and take a time out from your own personal situations and dramas like I’m doing… not to help me with my own personal crisis, but to help me raise awareness for the potential crisis that Gov. Gregoire is about to create for thousands of others. What I need from you is to pay attention to this situation, to talk about it, and help me generate public discussion about why it’s not okay to unnecessarily institutionalize countless individuals with disabilities, just to cut corners on expenses. This is not an acceptable corner to cut. Everyone needs access to adequate housing and community care, just like I do. Please, help me spread the word about this, and help me drive this discussion toward something that can resonate for society as a whole and compel people to act. I’m doing my best to help out, but I can’t do this alone.
Are you with me?
|Sunday, July 1st, 2012|
|Living in Theory
I've always had an intense affinity for the theoretical. In my teens and early twenties, I wanted to be a theoretical physicist. I felt certain, at the time, that it was my ineluctable destiny to formulate the ultimate Theory of Everything; it was simply Going to Happen one day. Although I eventually had to release my attachment to that belief -- with extreme difficulty -- in order to move forward with my life, it's had a lasting effect on how I've perceived the world, and how I've perceived my life.
As I let go of that attachment, I immersed myself in the study of the metaphysical, rather than the physical. I received instruction in meditation, spiritual energy healing, and clairvoyant readings, training my mind and imagination to perceive aspects of reality that transcended my physical surroundings. I studied ancient philosophy and new age spiritual literature. I developed my understanding and interpretation of the Divine, and the principles by which I discerned reality from unreality.
I learned a lot, and practiced a lot, but even my practice was largely internalized. Although I did my best to live by the principles I was studying and formulating, and express my ideals through my actions, the majority of my life was experienced through contemplation of abstractions, rather than through engagement with the world and people around me. This has continued to serve as the foundation from which I regard the world, but at that time, I had experienced so little. I'd never had a physically and romantically intimate relationship, and I'd suffered repeated, demoralizing failures in my attempts at formal education and employment. I had to experience love and loss, have my heart broken and my brain diagnosed, and learn more about myself and my strengths and weaknesses with regard to connecting to others, before I could even hope to truly put my theories into practice on a continual basis. And by most objective assessments, it would appear that I still haven't gotten to that point yet.
And yet, I've accumulated as much life experience as anyone else my age. I've just experienced it differently, accumulated it in a different space, from a different perspective, than my peers, but it's just as valid, and just as unique, as any of theirs. No fellow autistic, no fellow armchair physicist, no fellow spiritual seeker, no fellow thinker, reader, learner, lover, no fellow person in existence has seen or experienced quite the same world as I have, or as any other person has. All as it should be, and it could never have been otherwise. I have just as much right to my worldview, my perspective, my unique, evolving approach to life and love as anyone else does. My life experience is unusual, but it is still the experience of a life, even if it is a life mostly lived inside my own head.
We all perceive our existence differently. Over the course of the past few weeks, I've arrived at a deeper comprehension of the way I happen to do it. These boundless thoughts, conjectures and dreams that I float in and swim through are the medium of my life, the lens through which I interact with reality. These dancing, shifting visions and possibilities, only a very few of which could ever have the space to manifest in any externally visible way, are where I reside, and what I use to observe and to act. They are my limbs, my substance, my environment; my physical body and senses are merely a peripheral device through which I receive incidental input, and interact with others. This I've known for a while, but I now realize and appreciate that I truly Live in Theory; Theory is my home, and it is where I fundamentally belong. I could not attempt to do otherwise without being grossly untrue to myself, and the attempt would almost certainly fail.
But I believe I see a way, now, to continue to live in Theory as I'm meant to, while still participating meaningfully and successfully in the world. My experiences in the realm of Theory have been authentic, meaningful, and rewarding, but I can make them more so, and make my experiences in external reality just as much so ... at least in theory, I can. And I know a thing or two about that. That's where I live, after all.
I see a way now, feel a stance, an approach, a technique for navigating through these theories and dreams and possibilities, flitting between them, enjoying them, manipulating them, living them in satisfying ways, while shepherding favored ones toward the external dimensions of time and space, toward manifestation, but without attachment to results. After all, if my experience of Theory itself is more immediate and visceral than my experience of the external, why would I ever want to emotionally attach to and invest in the outcome of the things that happen out there beyond the reach of my primary domain of influence?
I can enjoy a dream whether or not it comes true. I can authentically experience a possibility without actualizing it out here with the rest of you. And I can do what I can to steer my external experience towards some of my favorites, although which ones become manifest isn't ultimately up to me. That ball is in the Universe's court, and I'm only one collaborator in the process. But I can make my external life an authentic expression of my internal life, a performance and exhibition of, and tribute to, the rich dreamscape that I primarily inhabit. I can bring more of my life out here, to show you all, while still living it richly, blissfully, and very satisfactorily. That is how I can be myself, and be in the world at the same time. That is how I can live my life, in practice, the way I was meant to ... in Theory.
|Friday, June 29th, 2012|
|Sunday, June 24th, 2012|
Things have been going pretty well for me, lately. I haven’t posted so much introspective stuff on here recently because I’ve been busy going out and doing things and being active and living life, for a change, so that’s where a lot of my energy has been going.
As I feel capable of doing more, and build my confidence in my ability to independently go out and be a part of the world, the door suddenly opens to start fulfilling a plethora of needs that have gone unmet in my life for years. Most of them have been unmet for the vast majority of my life, really, with the exception of a brief interval in my late 20’s and early 30’s. The unexpected end of that interval, and the impact that had on me and the things I had to do to cope, created ripples and shockwaves that have profoundly shaped and changed the course of my life ever since.
What I’ve learned is that I have to be careful in how I go about meeting these needs, and not simply surrender to my enthusiasm at the idea that they can be fulfilled once again. Independence. Companionship. Accomplishment. Comfort. Confidence. Touch. Freedom. Security. Love. All wonderful, all healthy, all legitimately needed. But pursuing them too fixatedly will be self-defeating.
There’s a tricky balance I have to maintain, here, and the intensity with which these needs occupy my attention doesn’t make it easy for me to avoid unhealthy fixations and impulsive, premature attachments to goals, people and ideas that will respond to that overeager attachment by retreating from me. That’s the lesson I’ve been learning, with a lot of help from some incredibly wonderful people. Slowly, haltingly, I’m starting to get better at not screwing this stuff up right off the bat, as I learn to contain myself, somehow.
It’s not easy. And it takes practice. There’s a lot of emotion, a lot of passion, a lot of need, and just a lot of me
to contain. But I’m getting there. And I’m very, very thankful for everything and everyone that’s helping me figure out how to live a happy, healthy, and fulfilled life. I have a lot of hope. I’m working on not getting carried away with it. And I’m getting there.
For now, my rate of progress feels like it’s finally good enough to satisfy my own standards. And that, in and of itself, is blissfully refreshing. That feeling meets enough of my needs to hold me over, for the moment, until I get better at fulfilling more and improving my ability to take care of myself. I believe that this is going to work.
|Monday, June 4th, 2012|
The trajectory of my development was such that my infancy and pre-schooling years were spent in an uncommonly safe, nurturing environment, followed by a few years that were still safe, but detached rather than nurturing, where I was mostly left to my own devices, then an abrupt shift into a world that I was entirely unprepared for, where safety was no longer guaranteed.
I still had an innate sense that the world ought to be a safe place, but I was traumatized by repeated experiences of situations that became abruptly and unexpectedly dangerous, with no warning that I could detect. I tried to learn to be on my guard and anticipate when such a threat might be on the horizon, but the warning signals, when I could detect them at all, didn't significantly stand out as particularly more likely than other, more benign interpretations of the situation. I would be told that I should have anticipated these sudden, hostile events, that the signs should have been clear, and sometimes the signs that were pointed out to me were, in retrospect, ideas that I had noticed and considered but that I hadn't had any particular reason to think were a more likely interpretation of my surroundings than a more benign and sensible evaluation.
I had two choices open to me, given the experience and skills and abilities at my disposal. Remain ever-vigilant, dismissing no possibility of sudden social danger, nerves constantly on edge, or relax and trust my sense that the world was basically a safe place and things would be okay, then be repeatedly traumatized by sudden, unexpected events where my enviornment became confusing and hostile. I went back and forth, staying vigilant as best I could, especially in environments that were more frequently dangerous and surprising, but I would be told that I was worrying over nothing, letting my imagination get the best of me, being entirely too paranoid. And it was draining and I didn't have the energy to maintain it. But if I let myself trust that I was just being paranoid, and I would be safe this time, and I could rely on the reassurances from others that nothing unexpected or unpredictable would happen, then just when I let myself truly relax and feel free and happy, I would once again be blindsided by some random eruption of hostility around me that I had either failed to anticipate or failed to take seriously as a possibility.
This set the pattern for my entire life going forward from that time, a series of nested larger and smaller cycles of safety and trauma, paranoia and trust. At my core, I'm still unable to shake my belief that the world is a fundamentally safe and benign place, and everything really will be all right. But I've been traumatized to the point of psychological disability by these repeated experiences of sudden and unexpected hostility just when I truly allow myself to feel safe and relaxed and let my guard down. My body and brain and biochemistry can't handle this level of vigilance. I want to relax. I want to feel safe. I want to trust. But I'm traumatized, and hurt, and exhausted. I just want this all to stop. I want it to be okay for me to be me, and to be able to trust my sense of the world as a benevolent place. I'm tired of this pattern. I want a new one. But what are my options?
|Friday, May 25th, 2012|
|Behind the Curtain
Sometimes, I think the issue isn't so much that we autistics have a deficit in our ability to communicate, but that neurotypicals, non-autisitics, are more successful at deluding themselves into thinking that communication is actually taking place, most of the time.
Throughout humanity, from mind to mind, brain to brain, person to person, we have far less in common in our perspectives and ideas and worldviews than we generally imagine we do. I found this article
roughly a year ago or so, and it explains this point quite well. Please take a few moments and check it out; it's worth the read, even if it does threaten to go pretty far off-topic toward the end.
So, every mind, every brain, works differently, right? It's likely that no two of us perceive the color red in quite the same way, just for example. And that's talking about our shared experience of something that's supposedly a fairly immutable property of external, objective physical reality. When it comes to things like our hopes and dreams, our ideals and standards, our values and beliefs, why in the world should we think we have a truly meaningful grasp of how the person next to us experiences reality?
But from what I can determine, society doesn't really function unless we all play along with the idea that we're more or less talking about the same thing, that we all mean more or less the same thing by the words we use, by the concepts we invoke, even though the cultural and social contexts surrounding those concepts is experienced remarkably differently by each and every one of us.
There's a good chance that by this point, you, the reader, might think I'm entirely full of bunk, that the fabric of our shared reality isn't nearly so tenuous as I represent it to be here. Okay, then we disagree. We aren't reaching agreement on a fundamental aspect of our relationship to each other and to external reality. In that case, we're not likely to make a lot of sense to each other. But as long as you're disagreeing with me anyway, let me be so bold as to put forward this radical idea. We're not disagreeing just because I'm a crazy person who's ranting and speaking nonsense. We're just jointly aware of our mutual continuing disagreement because I was so impertinent as to point it out, to call it to our attention. My goodness, how rude of me!
I hypothesize that humans have evolved the social behavior to not question each other's beliefs too closely, to not peer too intently at the underpinnings of our ideas, for fear of exposing the little rifts and mismatches between our worldviews, and casting the person we imagine to be "the same", "one of us", as actually a member of the dreaded class of "the other." No, surely, the person sitting next to me in the church pew must be in complete agreement with me on our beliefs about abortion, about homosexuality, right? How could it be otherwise? We're members of the same congregation!
And so we delude ourselves, and each other, into thinking we're sharing the same conversations, that we mean the same things by what we say. We've evolved a set of behaviors designed to steer us away from the uncomfortable realization that we don't know the person next to us nearly as well as we think we do.
Except that this doesn't work for everyone. It's a matter of statistics, of averages. This biological imperative for a shared social construct simply produces a set of behaviors that will allow most
of us, most
of the time, to get along reasonably well without experiencing the cognitive dissonance of realizing you don't mean the same things by the same words as the person you're talking to does.
Some of us find that this mechanism doesn't work for us, however. Maybe it's a difference in the neurological wiring that performs that function, that should help us know how to play along with everyone else in the delusion. Or maybe it's simply a difference in perception and worldview that's outside the range of differences that this mechanism can accommodate. But for whatever reason, this shared social construct, this fig leaf with which we conceal our unsightly bits from each other, doesn't really seem to do the job of providing us with adequate coverage for polite society. We are autistic, and we are unseemly, and you're supposed to avert your eyes and not look too closely at those bits of us that awkwardly protrude from behind the fabric of our shared social customs.
So where does that leave us? From my perspective, that can leave us closer to a true understanding of the world than the average person out there. We can be aware of this fantasy, this fig leaf, this delusion, and so understand one another at least a little better, even if it's a lot more work than just going along with the flow and allowing ourselves to believe that we're not really that different. Some of us don't have it so easy. Some of us don't have convenient access to that luxury. But however much effort one option or the other might entail for us as an individual, we can try to pretend, and go along with it all, or we can disobey the Big Talking Head and Pay Attention to the Man Behind the Curtain.
Guess what I'm doing?
|Monday, May 21st, 2012|
|May I Have This Dance?
The last few days, I seem to have been physically moving in more "autistic-looking" ways, spontaneously. Staggering gait, odd arm movements, flapping... when I'm alone in my apartment, pacing, working something out, and outdoors too, when I'm walking from place to place, making my way through the world.
I imagined it was because I was getting in closer touch with my autism, repressing it less. I thought it was because I had been sick, and anxious, and weak, and less able
to repress my body's underlying natural way of moving. I feared it was because this is how I had learned that autistics behave by observing others, that I was subconsciously acting that way because I was trying to convince myself and the world that I really was autistic, that I wasn't faking.
The Universe is telling me that it's because I'm learning to move with it. To feel its flow, to cooperate, to get out of the way and dance with it, play along, follow its lead, and trust its divine will. I'm struggling less, accepting more, feeling for the rhythm, and matching it as best I can. Slowly, akwardly, but with increasing confidence and trust, I'm surrendering to the currents of life and flowing with them, letting them move me. I'm learning grace.
Shall we dance?
|Saturday, May 12th, 2012|
|Performing the Truth
A few months back, I was trying to help a loved one through a rough day, and fumbling for some words that felt important for both of us to hear.
"You see, the thing is," I ventured, finding the words as I went along, "because our brains are wired differently, we don't really naturally speak the same sort of language as most people. The way we naturally express ourselves seems unnatural to others, so when we're struggling to find the words to convey our authentic truth, it can often sound fake to other people. Either overblown, exaggerated and histrionic, or forced, hollow and insincere. So right in the middle of that vulnerable, exposed moment, we can end up getting backlash from people who don't really speak the same language as us, because it looks to them like we're making a clumsy attempt to deceive them somehow.
"And a lot of the time, what we're doing is trying to find a way to put our truth into words they can understand. Trying to speak their language, as best we can, as best we understand it. But intrinsically, neurologically, we're just not wired to speak their language, so it comes across as unnatural, because for us, it is
unnatural. And that's what people pick up on, and it triggers something in their heads that makes them think we're lying. And they get offended, and we get hurt and traumatized by their reaction, and, well ... it all becomes a big mess.
"Because the thing is, when you're just wired differently, like you and I are, we can't simply tell our truth to others directly ... we have to perform
our truth. And in this cynical day and age, people see that we're performing, and they assume it means we're lying. But we're not. We're just trying to communicate, fumbling through it as best we can, the only way we know how.
"So when you feel like everyone thinks you're fake, or insincere, or lying, I want you to trust that you are
being true to yourself, okay? You're doing your best, and you're speaking your truth ... you just don't speak the same language as them, which is why you have to perform
your truth. So when it feels like people are trying to tell you that you're lying and fake, I want you to know that they're wrong about that, okay? They just don't understand, because they don't have the frame of reference to get it. Just know that I hear you, and I get it, and I understand, okay?"
That message has stuck with me. So often, in my desperate attempts to tell my story and be heard and explain the stuff that people wouldn't see, wouldn't know to look for, unless I pointed it out, I end up trying too hard, and looking like a buffoon and a charlatan, and falling flat on my face. Or at least that's what my anxieties tell me I look like to others. An attention-seeking glory-hound trying to leverage controversial headline issues for my own personal gain, going for shock value in an attempt to garner fame and notoriety.
Well, okay. How much truth is in that assessment? I am
trying to "perform." I am
trying to attract attention ... to ideas and issues and perspectives that I think need
attention. To stuff that I think people aren't paying enough attention to. And if one of those things that I feel like people aren't paying enough attention to is me
, well ... okay. Maybe that can be okay. Maybe that has some validity.
I often get uncomfortable in large groups of people. In a crowd, at a party, conversations swirling around me ... I can't process what's going on, can't make sense of all the auditory and visual input, and my understanding of my social surroundings slows to a crawl. But put me on a stage, in front of a similarly large group of people ... put me in the spotlight ... and I can perform. I can display. I can focus on that single process, a more coherent and unified input/output stream. And I can enjoy that kind of attention. I can show off. I can feel important and valued and seen and heard.
Maybe that's okay. If that's the one way I've found to be comfortable in a larger group, and I can learn to operate in that mode with enough skill and poise and provide enough entertainment value to my audience, then maybe I can accept that about myself. Maybe I can go with that. Maybe I can use
that, use the joy I feel from being in the spotlight to motivate me, as I use the spotlight itself
to draw attention to the issues and topics and ideas that I think are really important. Those little quirks of my own unique perspective on the world that will go unseen and unknown in the wider world unless I speak up, because I'm the only one who sees the world from this particular, exact angle.
That doesn't mean that my perspective is more important or more worthy of attention than anyone else's. It just means that it's as
important and worthy of attention as anyone else's. And if my performance style of my particular brand of truth-telling makes it seem like I'm being more self-important than that ... well, okay. I'll try to have fun with it, and model that part of my self-expression after Stephen Colbert's example, and simultaneously leverage and poke fun at our modern attention-seeking celebrity culture. I can play the clown and make fun of myself. I can use my nature, and the nature of our modern reality-show culture, to perform the truth
, and get it out there, spread the word.
So, I'm an incorrigible show-off. It seems to work okay for me, when I can let myself accept and enjoy that part of myself. And it seems to work okay for society at large, and for getting messages into the public dialogue, in this day and age. So this could be an okay thing, or maybe even a positively good
I can have fun with it. Score!
|Tuesday, April 10th, 2012|
All right, fine. I've gone ahead and done The Twitter and The Facebook things. I am now part of Modern Internet Society.
|Thursday, April 5th, 2012|
So, I was a bad Aspie because I didn't post anything here on Autism Awareness Day. Bad Matt! Ah well. I've been preoccupied with working on my own stuff. But better late than never. I've been meaning to write up my thoughts on the upcoming revisions for the DSM-V (Diagnostic and Statistical Manual of Mental Disorders, 5th Edition) as they pertain to the autistic spectum.
Basically, the word is that Asperger's, PDD-NOS, and Autism will all be rolled up into one "Autistic Spectrum Disorder" diagnosis. I think this is accurate and appropriate. A widespread concern, which I share to some extent, is that the criteria for this new all-in-one diagnosis may be too strict, and that a number of people currently receiving treatment and/or services for Asperger's or PDD-NOS may not qualify for the revised diagnosis. But I've been reassured through discussions with my mental health providers and news articles I've read on the topic that existing beneficiaries aren't likely to be in serious danger of losing benefits they need. And my co-occurring mental health disorders, in and of themselves, are really the disabling conditions that I need assistive services to cope with.
Which leads me to my conclusion on the matter. Like many Aspies, I consider my autistic spectrum condition to be an aspect of my individual diversity, akin to race, creed, gender, or sexual orientation. I do not consider it to be inherently a "disorder", in and of itself, and since I believe that, I ought to be willing to stand by that conviction and have my Asperger's officially considered as a condition that's not *inherently* disabling. However, it is well documented that Aspies and others on the autistic spectrum have a significantly higher risk of acquiring co-occurring conditions such as depression, anxiety, and other mental health issues. Many of those currently diagnosed with full autism may suffer from learning disabilities as well.
So I conclude that Autistic Spectrum Disorder ought to be included in the DSM-V with somewhat relaxed criteria, but considered to be not an inherent "disorder" in and of itself, but rather a broadly defined condition which puts a person at substantial risk for a large number of other disorders, and must be accurately diagnosed in order to treat such co-occurring disorders properly in the patient. I observe that diagnosis and treatment options for such co-occuring disorders must be considered through the lens of one's degree of severity of one's underlying autistic spectrum disorder, in order to be effective. A healthy, functional person on the autistic spectrum will appear and behave differently from a healthy, functional neurotypical person, and cope with life differently, and I believe that's as it should be. I believe codifying this outlook and approach could do much to improve outcomes for people on all parts of the spectrum, and provide a way to resolve much of the existing social controversy around autism and Asperger's diagnoses.
I also think it's important to keep in mind that, since this is a *developmental* condition, it presents differently and should be diagnosed and treated differently at different developmental stages in a patient's life. Although early intervention is ideal, and there's understandably a lot of focus on catching and treating autism in childhood, it's important to take the age of the patient at the time of diagnosis into account, and not evaluate the function of adults by criteria that were designed to diagnose children. There are substantial differences even between how an autistic pre-schooler presents and how a teenager presents, across many variants of autism, so I think more attention needs to be paid to this factor. I don't know to what degree or how well such factors will be taken into account in the upcoming DSM-V, but I certainly hope it improves on the DSM-IV in this area.
Glad I finally got around to writing up and posting my thoughts on that. It's been overdue for a while.
|Wednesday, March 28th, 2012|
I've been doing a lot of genealogy work on Ancestry.com over the past several months. Reconnecting with immediate and extended family, and connecting with further-extended family than I'd previously met. It's been good, and healing, and productive. My anxiety has gotten in the way sometimes, as I worry that others will be offended by the way I set up my family tree. But I'm doing my best to be respectful of everyone's history and ancestors, and I'm starting to not let it bother me to the point of paralysis. I'm learning that even when disagreements arise or my actions feel offensive to some -- which, let's face it, will happen often; that's simply a part of my life that is unlikely to go away anytime in the forseeable future -- I can still remind myself that my intentions are good, and I'm doing my best, and I'm trying to make my "best" better when that's not good enough, and all of that counts for something. That's what my friends and family have been trying to tell me lately, and I think finally, I'm starting to integrate that realization. I feel blessed to have these challenges and opportunities to grow, just as I'm blessed to have the friends and family and loved ones that I do.
It'll be okay. And the part of me that's been afraid that that's not true has been finally, achingly slowly, starting to realize that. Thank you, Universe.
Oh, right, I got off of my original intended topic. Hate it when that happens. I'll let it stand though; part of the point of this thing is to provide a window into my brain for those who want to peek. So, anyway, getting back to my intended point....
The 1940 census is being publicly released in 5 days. I got an email from Ancestry.com the other day offering me the opportunity to be a "1940 Ace". The main bulk of the email reads as follows:
It’s the biggest thing to happen to family history in 72 years—the release of the 1940 U.S. Census. Ancestry.com is abuzz with plans for sharing, exploring and making discoveries in this incredible snapshot of your family’s lives. And we want you to play a starring role.
That’s why we’d like to invite you to become an Ancestry.com 1940 Ace. This select group will be our 1940 census trailblazers, grabbing firsts, freebies and updates before anyone else—and sharing what they learn about the 1940 census with their friends, fans, family and other social channels.
As an Ancestry.com 1940 Ace, you’ll get:
* First-to-know information about the 1940 census and sneak peaks whenever possible
* Group discussions with other Aces and Ancestry.com experts
* Downloads and other collateral you can use and share
* A special badge that identifies you as an Ancestry.com 1940 Ace
* Giveaways and showcases for you to offer to your audience through your social media channels
This seems pretty well tailored to appeal to the part of myself that feels the need to draw attention to things I enjoy, and (somewhat childishly) show off what skills and talents I have in my quest for recognition and respect for my uniqueness (which all really boils down to daddy issues). I'll probably go ahead and sign up for this thing, once I recharge my batteries a bit more. So there may be advertising-like stuff on here for Ancestry.com for a while. My apologies to those who it offends, and feel free to not read and/or unfriend if you don't want to be subjected to that, or to me. I get it, and it's okay. Not everyone will want to hear what I have to say, or like how I say it, and I'm learning to be okay with that. Thanks everyone.
|Monday, March 26th, 2012|
|Another Autism Article
My ability to function socially in physical environments is exactly inversely proportional to the amount of extraneous "noise" in that environment, whether that's visual, auditory, social information, emotional or cognitive complexity, or whatever. The more noise comes from all directions around me, the slower my information processing works. Sometimes I figure out the incoming information several seconds afterwards (especially with language processing; my mind figures out sentences a measurable time after they're spoken, if not enunciated well enough for me to make out over the noise), and sometimes I figure things out hours later (body language or social cues that most people would trivially pick up on the fly). I can process all these kinds of information to some degree, but not in real time. So I do a lot of pre-processing of anticipated "conversation pathways" for important social interactions, and a lot of post-processing afterwards, trying to consider what happened from all angles and see if there were interpretations I missed or information I lost out on. But if the info is all coming from one direction, like my computer, then it gets significantly easier to process with my hyperfocus capacity.
I've been crystallizing my understanding of this particular bit of how my brain works, over a period of the last few months. Nice to read an article that seems to support this introspection.
Again, for now I'm using LJ for links and essays, and would like to use my Formspring
for interacting with and hanging out with folks. You don't have to have an account there to just ask me a question; I'd like to be able to explain "how I work" and "what's up with me" better, and publicly, and I think the best way for me to do so right now is to answer specific questions that people actually have about me, rather than just rambling on about whatever insight pops into my head at a specific time. Not sure I want to do what I'm doing here too often, if there isn't a call for it. I don't want to overload people with unsolicited information. I allowed myself an exception this time, because that article I just read spoke so directly to the work I've recently been doing. But I'm trying to figure out how to handle my online presence in a more socially acceptable way, promoting awareness of the causes, people and issues I care about without causing drama that feels excessive to most, and especially without doing more harm than good to those causes. I'm figuring this out as I go, but the last several days have really helped me work through my phobia about my online presence that I've had for the last few years, and that's a Good Thing.
Sorry for my text walls. It's just how I write. I've been trying to work on it, but it's harder to control when something is very important to me. I'll try to do better.
|Sunday, March 25th, 2012|
|Saturday, March 24th, 2012|
Hey guys! If you've got a couple minutes to kill right now, could you do me a solid and do the following things? Go take a quick look at Unsounded
, and then go take a quick look at LFG
. Which do you like better? Hint: the correct answer is "Unsounded". ;) If you agree with me, could you go here
real quick and cast a vote for Unsounded in the tournament? It's highly unlikely to win at this stage, but I'd like to see a nice bump in the percentages today to raise awareness for a much-less-well-known but much-higher-quality work. :)
In other news, I *really* suck at Not Creating Internet Drama. But y'all knew that, nothing new there. Went a little nuts trying to drum up votes in other venues, and pushed myself so hard that, combined with a highly interrupted sleep schedule and a small prescribed dosage change in my meds, I had my worst panic attack in like 5 years this morning. Like a 9-10, when I've managed to keep things pretty much in the 4-7 range the last few years. Had to go to the ER. Whoops! Much better now. I've gotten like 5 hours of sleep already today, which is a big improvement, and I'll likely be getting more soon. It's all good, don't worry. Just me being me. :)
That is all! If you want to chat with me, come ask me stuff on Formspring
! Turning off comments here; for now I think the LJ is for essays/shoutouts and Formspring is for interacting, for me. Later, all! Hope you're well!
|Tuesday, March 20th, 2012|
It's been a bit longer than I was hoping to take since my last post. The new mental health services are going pretty well, but I kind of wish I could see my main counselor more than once every two weeks. On the other hand, the rate at which I'm working out my stuff feels like it's probably pushing me hard enough, given my condition. It's just not as fast as I would like, so I haven't gotten a chance to really work with her on the issues that have been keeping me feeling blocked in my online interactions; other issues have taken priority, given the limited time available. I wish this was all going faster, but I guess it takes as long as it takes.
In the meantime, rather than push myself too hard to get over my LJ baggage from a few years back and start posting here regularly right away, I've gone ahead and set up an account on Formspring
; that feels like a way to get back into practice with more open online social interaction, in what feels like a more controlled environment, and a fresh start without the baggage of my past mistakes weighing on me. If you have or are interested in setting up a Formspring account, feel free to socialize with me there by asking me questions. Hopefully that'll help me break the ice and get past some of my stuff.
Now to see if I can manage to get some decent sleep, here.(EDIT, 6:35 am: Apparently not. Hey, do me a favor? There's this webcomic tournament bracket thing that my favorite comic, Unsounded, is competing in. Could you click here, scroll down to just below the third tourney bracket ("Robinson Division"), and vote for Unsounded over Evil Inc.? It's an incredible online graphic novel by a talented author that deserves wider recognition. This is a great opportunity for it to get more widely noticed. You should really read it, especially if you're a fan of quality original fantasy stories. (Looking at you, RJ newsgroup crowd!) Check it out and give it some love. Sorry for the spammy nature of this edit, but hey, gotta do my part for the cause.)
|Monday, January 2nd, 2012|
Oh, hey, before I forget, I should pimp out this webcomic I found a while back, now that I'm posting again. Unsounded
is an online graphic novel by one Ms. Ashley Cope, featuring an original fantasy-world setting, humorous and multidimensional characters, and rich, well-crafted world-building. Also, it has a loquacious spellcasting zombie in it. It's very good stuff. It updates at midnight ET on Mondays, Wednesdays and Fridays, usually one page per update but occasionally with more, with breaks of a few weeks between each chapter so she can build up her page buffer. She just started chapter 5, so now is a decent time to check it out since it'll be a while before there's a long break again. Hope you like it; I think it's excellent.
|Sunday, January 1st, 2012|
Okay, I'm about ready to start using this thing again. This is more of just a quick notice to that effect, rather than the start of truly regular posting. But I just realized I'm about ready, and seeing as how it's still the first day of the year for a few more minutes, it seemed appropriate to make a quick post about that now.
It's possible I'll start posting regularly in a couple weeks or so, or even a couple days or so if I really feel moved to, but it's more likely to be a month or two before I start really returning to my online presence. Right now my priority is starting up with my new mental health services.
Things have been stagnant, but are beginning to improve, and I'm ready to start making a concerted effort to turn things around and become a more active person again and participate in society, at least in some way. My goal is to be functional enough to move back to Davis, California, and reintegrate into my existing social network there, in 6 to 18 months.
Thanks to all those who've given their thoughts, time, cares and prayers to me over the years. It's been appreciated more than I have the capacity to express.
|Thursday, March 10th, 2011|
Memo to Charlie Sheen, Moammar Gadhafi and anyone else undergoing or considering a very public, denial-fueled Meltdown of the Self:
Despite your current faith in your own supremacy, omnipotence, untouchability, divine righteousness or what-have-you, you may reach a point at which you come to find that one or more of these underlying convictions that shape your worldview, and by which you justify your actions, happen to be false. At such time, my personal experience suggests that you may look back upon your current actions from this new perspective, and feel like a complete ass.
|Friday, May 1st, 2009|
I'm in a living situation that's as close to ideal for me, for the moment, as I believe I can get. It's helping, and it's working. I just hope it'll be enough to get me to where I need to be, by when I need to be there. Where I need to be is "independently functional and motivated", and when I need to be there is "by the time Travis is deployed in the Fall." The plan is for me to continue to live in Trav's apartment while he's overseas, but for even that to be workable, I'll have to be more independently functional than I am right now. If he were to leave tomorrow or next week, I wouldn't be functional enough to take care of myself alone here for that kind of long term. Fortunately I have several months to work on that. I hope that it's within my capacity to get there, and I hope I DO get there.
But for now, my living environment is as close to perfect as I can reasonably hope for it to be, in terms of having available the support I need, on all levels, to make my needs met. I'm learning to feel safe, and to trust that I really am safe. That's a process, but it's coming along well, and it's a vital first step. No further steps are possible without that necessary foundation. I am sincerely grateful to Travis and Nicole, especially, for their continuing and substantial help with that first step. I have thanked them many times over, and I'll continue to. Travis, Nicole... you both rock, and I humbly thank you for being the caring and supportive family I need right now. I love you both.
Some more steps will be required, over the next few months, before I can be functional enough for what lies ahead. I'm currently in the process of determining just what those steps might be. It seems I'm not quite far enough along in that process to articulate my progress here in LiveJournal, though I thought I might be when I started this post. But I had a good conversation with Travis tonight about it, and it's clear that I'm working on it, despite the fact that it would probably appear to almost everyone except Travis and Nicole and perhaps Kevin and my mother, that I'm just sitting on my ass doing nothing of consequence. I am in fact working on it, and that work is seen by those closest to me, and that's enough for now. For tonight, for this week, probably for this month. It won't always be enough, and that awareness is motivating me to keep up the work. But for now, for tonight, it's enough. I should be grateful for that. And I am. I just need to validate that feeling of gratitude to myself, and help it sink in. So I have done just that, by posting about it here. Mission accomplished.