Sorry for a bit of silence there, a conglomeration of personal issues has kept me preoccupied for some time... Not sure whether I am really back on track or not, but have a few new entries up for this month, & finally starting to clear up the log jam in my head that has held the others back( I did write several of them).
I read at the memorial for my friend. Many of us did not know he had died in time to attend the funeral, or could not make it to Ohio. So now, on what would have been his 35th birthday, we gathered in a park on a hill in the city because that was what he loved. They’d planted a tree. We spoke. We remembered, we discovered, we drank scotch he had given his ex once( Sean was a great lover & connoisseur of alcohol). I stood among his many colleagues & a few friends, & his ex, & I told them:
“There’s... so much I don’t know. It’s 9 or 10 years since Sean & I entered each other’s lives, & perhaps the best description I can give without raising the wrong questions is that I was a very, VERY close acquaintance. I Yet, still also distant; as I have spoken to & now stand with friends & family, it is overwhelming how much of his life I never even heard about. I never really even drank with him! This man who so famously held nothing back built fences that left us strangers to one another. He tried to fix it last year, called me & others to his side while with his family, but I was too wrapped up in me to heed. & now I want nothing more than to be wrapped up in my friend who has passed beyond my reach.
Sean Perish Bender. He never did even tell me what the P stood for. [chuckle] Perish. I found out by reading his obituary. I think he’d like the implied wordplay. But then, names were never our big thing. He could never remember my middle name & disapproved of my later decision to combine for a compound first. & we didn’t know surnames until some three-quarters of our time was gone. For so long, we only knew firsts, which, for that matter, we pretended not to, & never used them. But I’m getting ahead of myself.
A long, long time ago, Bender & I met online, & we were supposed to go on a date. He had to reschedule. Then I had to cancel & he didn’t care to commit to another time. Other people & projects that would have a long-lasting impact on his life had begun to take shape & occupied his time, required all his attention. I often think that, had we actually gone out, we might have ended up... never really knowing each other at all. [mischievous smile] We would probably have found each other insufferably arrogant & faulted each other as useless a decade ago; 25-year-old Sean Bender was impatient & secretly angry at the world, unsure how to release his tension; 21-year-old me was almost unaware of my disability & puzzled at being unable to accomplish much with my clearly evident resources & talent.
Instead, when we encountered each other offline shortly thereafter, neither owned knowing it was the same man from before for, I think, five years. We were there for a reason; although we perhaps gave credit to a different one, at first. Sean recognized the truth before I did. But then, that was Bender... putting it all together before anyone else had found all the pieces. Usually, I’m the one doing that; yet he could be almost done by the time I recognized there was a puzzle. & with such a placid or bemused look on his face.
Ugh, another reason our date wouldn’t have done much good: I found him handsome enough on the whole, but I must have dumbly stared at his more awkward features( nose anyone?) sometimes, as my gaze often made him self conscious & eager to please, to right imagined offenses. He was far less attracted to me than I to him, as well; within twenty minutes of first laying eyes on me & meeting my gaze, he confirmed that had we gone on our date he would have found my looks utterly lacking in any compelling feature. Of course, we were comfortable enough to say those things then, since the first time he saw me at all was ALSO five years after we began.
& maybe there’s something to be said for that. Faceless in the dark, when worn out, hurt, or downtrodden, we existed in the quiet moments; & he asked me what to do, & at my behest he told me the things that troubled him, & the things that he wanted. & I told him what I knew of the world, & how it troubled me, & how he might set his fears to rest. When reflecting on a valuable person, it is common to think of things one learned from him or her. Yet I cannot help thinking as much or more about what I taught Sean. I doubt I was the only one he learned these lessons from, & I know I was not the only one well met in the dark, but I am so pleased to feel I helped.
I helped teach him how to let go of control in order to have & exercise power. I taught him some of the best tricks for manipulating himself. I helped teach him how to say exactly what one means & believes, & have other people think it’s what they want to hear. I reminded him every chance I got that things which have been broken can never be the same as they were, but can be better in lieu of that. I tried to help teach him how to face fear & live through it not as a duty or a punishment, but as an adventure, and an opportunity... he thanked me, every time he saw me, for being the critical influence in setting him free. I wonder if I’d have been so eager to release him from his cage if I’d known he would fly away so soon.
& I learned to have confidence. To be effective at having control. To make mistakes enthusiastically & be mindful thereafter. That I have power to engage friends in my ideas & thus change their lives dramatically for the better–Sean was among the first to make a special effort to tell me I had done so, though far from the last; & yet without his persistent gratitude regardless of context, I might not have even had courage to try where I have succeeded.
Perhaps I should have moved sooner than I did to bring us out of the dark & face-to-face. I had my reasons for picking my moment, though. But certainly, following that, I waited far too long to take the next step, & let us remain largely as we had been–he was, after all, the first person who ever engaged me at a high level on a wide variety of topics, to the intellectual satisfaction of both of us. Uniquely in my life, we would talk over each other & not become upset, because we were both able to follow the other’s thought while still simultaneously speaking about something different. Of course, we could have had–& ultimately did have–the same kinds of conversation while going out to lunch at sidewalk cafés like normal friends, instead of huddled in isolation in smokey private back rooms. I should have worked on turning our words about sharing “real life too” into action before it was too late. By the time I pushed it through, we got barely a year. Then after a final Christmas holiday he shook my hand, hugged me tightly, & quietly went off to die.
I wish I had made more time in the light, yet all the good we did each other may have only been possible by starting with two brilliant men alone together in the dark; & in many ways we made the most of it. Not that he would forgive my immodesty in saying we were that, nor the egregious compliment paid to him thus. If cornered, Bender might admit that he was the smartest one in just about any room; on any other day, the buzzword was ‘humility’. Sean was the kind of guy who would sin to atone for having been presumptuous enough to perform miracles. Although I often thought him to be the best person I ever befriended, I only realized after he had died that Sean was somehow one of my best friends. Hindsight suggests that, always steps ahead, he arrived at that conclusion first, probably right around when he was leaving Boston. Then again, leaving gave him an advantage of perspective that only his death would afford me: the immediate & concrete notion of us never meeting in this world again.
That grieves me, & grief has been new & strange & helpful & painful. But, Sean told me once that, after all that time in the dark knowing the world of my words only, I had worn a groove in him, made myself a niche, & he could pick out my voice in a chorus or over a crowd, would know my words instantly anywhere, in any situation; through anything, he would always know if I called to him. Time for a test.
[shouted:] Hey there, boy; you did good! Don’t roll your eyes behind my back, because I meant what I said: you did GOOD. Despite the stuff you know you fucked up, in doing such good, you have done quite well.
[imperative tense + a hint of pleading:] Have a rest.”
[Omitted lines in the reading today were flubs, not censoring.]
I also thought I might sing a song I wrote, but I couldn’t get my preparation finished; things kept going wrong. Now I think it’s because, while I’ll share it with the world soon enough, the first time I sing it for him was always meant to be just me by myself with his memory.
And although it took me until now, standing back at the tree after we all went to a bar; now everyone has gone I realize that in finding them, in finding him, & helping them find me & find him, I may have solved the last puzzle he left us. Damn it. What a beautiful fool you were, my friend. Though you never meant it to be my task, or it might have even been a simple error; mistake vs. miscalculation does not matter, I’ll do my best to clean up the mess for you.
You don’t owe me anything more, though; this one’s on me. If we meet again, you can get the next round.
WARNING: I am not a doctor or professional researcher of any kind. I have not undertaken recent or significant formal study in the fields of psychology, sociology, medicine, or philosophy. Despite my enviable observational skill & breadth of experience/knowledge, I am not an accredited expert or authority on any subject unless specified, & may potentially be even more prone to errors than they usually are. Some terminology may be my own, either invented or used differently than by other sources. There is a glossary of terms for you to peruse( also includes notes on idiosyncratic punctuation). All opinons are solely my own unless otherwise noted. All assertions regarding mental health, disorders, & behaviors should be taken only as opinions, or as my own personal experiences & fallible derived understanding. If you have a reason to believe I’m wrong, please e-mail me or post a comment.( NOT just over your own gut feeling or something a shrink/parent/teacher said; when it’s opinion vs. opinion, I’m obviously more likely to trust my own.) If you can provide a reliable, publicly-available free resource that contradicts my understanding as expressed in a given entry, & I can read & understand it, I will post a correction–so include how you want to be credited.
A defining aspect of autism & autistic spectrum disorders (ASDs) is the social impairment stemming from poor theory of mind. This means that, on a fundamental level, humans with ASDs lack a neurotypical( NT) person’s core understanding of the conceptual boundary between ourselves and the rest of the world. I am not automatically able( although part of what makes me high-functioning is the ability to compensate) to differentiate which things I should think of as parts of “me” vs. “not me” objects & concepts that may or may not affect me, or even to fully grasp the concept of something being not part what affects me, let alone another person different from myself having thoughts & feelings completely unrelated to mine. I think this may be related to the common difficulty individuals on the spectrum have with spatial awareness, and especially proprioception( the awareness of our own bodies including relative position of our body parts); although even if that were so, I have no guess as to which is cause vs. which is effect.
The difficulty typically increases when in the presence of others, this may stem from having to keep track of the separation between oneself and other similar yet entirely isolated dynamic constructs. If we consider Gray’s biopsychological theory of personality, we can see how, when the pressure becomes too great, the autistic individual may perceive the growing discomfort as a signal of imminent danger and trip the behavioral inhibitory system (BIS), which responds by prioritizing the appropriate reflexive or conditioned response for the threat in question and limiting other actions–thus leading to complete breakdown of the conscious or semiconscious coping mechanisms that someone with autism uses to simulate natural self-awareness & theory of mind aptitude.
Theory of mind may also be viewed as a complementary way of looking at self-awareness, which is recognized using the mirror test; testing whether an animal recognizes that its reflection is an image of itself rather than another animal or part of the environment. Self-awareness is of vital importance in understanding the cause-effect relationships of past & present events, and forming expectations of what will happen in the future–especially with regard to how others will behave. The more severe the difficulty in separating oneself from the rest of the world conceptually, the more disabled a person is... usually.
Autism is seen as a spectrum; my ASD was believed to be fairly mild, yet I stalled out in life disproportionately, particularly when considering that I am obviously quite gifted. For a lot of my life, especially adult life, I just couldn’t seem to get tasks done when left on my own, & I would have no idea where the time went. Everyone would assume I was goofing off, reading, watching TV, playing games, the many ways in which I do like to procrastinate; but I would typically have no memory of any such thing, which was troubling to me and to the few people who actually believed me.
A couple years ago, I made a joke that I may look almost normal and just slightly off, but I’m actually a total nutjob coping really well. I started gradually exploring this idea with more seriousness, noting that it was a frequently a better fit for the way things played out, especially where our notion of me doing the same self-care as others came in, despite my desperate with to stop depending on others. About 6 months after first saying that, I was home alone, and I caught myself–in a mirror, ironically–practicing multiple versions of a conversation I wouldn’t need to have for quite some time, if ever.
“Why?” I asked myself, thinking about it the rehearsing consciously for the first time in maybe 15 years.
“Because this is how I get ready.”
“For whatever might happen.”
I became slighty dizzy in the rush that followed.
“Normal people don’t do that.”
“Did you ever ask?”
“No, but... characters on TV only do it for high-stakes conversations, & in real life I never see anyone do it.”
“So they do it alone.
“But for everything?”
“Have I done this before?”
“O.K., right, I sit on the couch, or I pace, or I do it in the shower...”
“Lying in bed, starting at the ceiling, sitting at a desk, walking or biking places...”
“When was that?”
“All those times...”.
This, of course, was the larger part of what I had been doing in the time gaps, for decades, at least. Unless I am actively concentrating on something else(, which tends to become impossible when I haven’t done sufficient planning to feel ready for upcoming situation), I do it to some degree in just about every moment when I am alone, & sometimes when I am not. It’s why even small changes can knock me for a loop, & why I may home in on certain details in a conversation that others don’t consider important: I’m constantly working to see everything in relationship to everything else. People constantly criticize this, telling me that I can’t do that, I’m overthinking, that it just leads to bad assumptions–well that is easy to say when the meaning of others’ communication & appropriate reactions are there for them like magic. Not so for me.
It took a couple weeks for it to really sink in, but for over 2 years now, I have been able to rapidly change & expand the ways I think about & interact with the world in response to new information. More than ever now, I can quickly assess a problem or situation that doesn’t involve me with accuracy over 85%,( based on confirmation from those who know, & success rates the admittedly-limited times my suggestions are actually accepted & engaged accuracy), even scenarios in context I am learning for the first time); & events that do involve me with over 55%( which is not bad, given we all suffer from bias in subjective situations). I would be nowhere near that if I had not seen myself in the right mirror in the right place at the right time
Rehearsal of various possibilities, a technique known as situational planning, is in fact sometimes taught to relatively high-functioning ASD patients, & seems to be the only technique able to directly impact the ability to cope with social situations( I suppose because as long as there is a plan for what’s happening, the person won’t feel threatened & the BID won’t cause a meltdown); however, it cannot be taught at my level.
Neurotypical people are entirely unaware of most of the things going on around them, even a large number of the things they do themselves. The most common thing I say to people on the spectrum when ‘translating’ is “Oh, I get it; you’re reacting to [some typical enty behavior; e.g., all the lying]–NTs aren’t aware of that unless you point it out.”. It took about 20 minutes to convince one guy his boyfriend & I were not playing a practical joke.
But, hey, that’s part of why I do this; to give everyone a chance to recognize themselves in the right mirror.
[Continued from Shadows through a Cracked Glass.]
The last entry became a jumping-off point; conversations with an insightful friend & some of Sean’s loved ones followed. I have a tendency to see the world in a very self-oriented way. My enormous ego aside, this probably stems from the ASD issue of theory of mind. That said, I am fortunate to have more than just my own malleable memories to go on, & archived chats across a nice array of sites show clearly that there was a depth to our interaction that I missed.
I think maybe he did too, although I’m pretty sure he’d caught on by the time he left Boston, as that would explain why he summoned me in person for some very awkward conversations despite normally avoiding such things like the plague. For him to recognize the need means he knew how important he was to me before I did. For him to go to the lengths he did in the middle of all he had to get done is a pretty good sign that it mattered to him what happened to me.
For all that, though, there were lines he chose not to cross for me, or to let me cross, during his life. Introductions not made, fleetingly but resignedly regretted once our courses were set in different directions. For all his openness, there were things he hid from people, people he hid from each other... I think there was some sense of keeping everyone’s life simple, including his own. I do kind of have a knack for complicating things, though. & running my mouth(/fingers).
He shared pretty deeply with his best friend ( who’s shrewd enough to know more than what he told her), & there was a great deal of his history I never fully got; after all, we never really set out to become more than casually acquainted. It was just that we could talk & talk & even talk over each other without missing a beat. Hours or even days straight on art, technology, politics, ethics, sociology, education, science, psychology, metaphysics... All way outside & beyond our original reasons for crossing paths.
One day, I was stuck at his house with rain pouring & cabs just not showing up. His roommate came home & he made up a quick’n’dirty lie about my identity & purpose. This despite the guy having heard stories of me, albeit not by name; despite that it was Sean’s place; despite the lack of any threat to even their already-souring relationship from my presence. That’s when I knew some things had to change, & I changed them. Glad I did. Should have sooner.
Now that I’m conversing with others he was close to, I must admit that a lot of the gaps in what he told various people make sense given what I knew about, but him a few leave me puzzled as to just what he was aiming for or avoiding.
I want to honor the respect he had for those he loved & tried to protect; I don’t want to hurt anyone by creating doubt or distance in the face of what he left unknown. I don’t want Sean to be seen as two-faced; some people hide behind a multitude of shifting façades but in reality resemble none, he was more like the sum of the many things he could be to all manner of different people. Or, I guess, even to the same individual in different contexts.
I know he had his reasons for the things he kept separate, but the stuff that I was privy to that he held back from most people... The things I taught him, those I learned by teaching him, the things we shared with each other & set out to find in others... It leaves me feeling awkwardly like the secret mistress( well, but I’m male so rather, secret… ;-p) of the man who was known for being shameless & without secrets. There are others who know as much as he felt safe to share, but figuring out who knows what, and who will be O.K. learning more of what he hid, is tough; & of course I have to bear in mind that I am one of the people his boundaries were mean to protect.
As I learn more myself, who will be here to keep me safe? Only myself, he is not here to rely on anymore.
From his beloved stepmother’s account of it, though, it sounds like the end came with a huge pileup of everything he had been hiding. He must have known that would happen, or even planned it to some degree. His rebel heart would revel in the chaos, I’m sure. There was the side of him that once said to me “It won’t matter because I’ll be dead.”. I am sure there were some people he explicitly meant to punish. Mischief-maker, yes, but the humble & pragmatic problemsolver was just as much who he was also; the one who put so much care into saving us from worry & trying to help us find roads that might lead onward in the right direction.
The mess & mystery that he, the master planner, nonetheless left for his friends & loved one as well as his enemies & acquaintances is baffling. And it’s bewildering to realize that, although we were never central figures in each other’s lives, & there were so many answers I never got, there are other answers that seem to have been given to only me.
Secrets are lonely.
I prepared a bunch of Aut Light entries for yesterday, to make up for the silence last week as I worked toward Mother’s Day. But I didn’t, & still don’t, feel like giving any a final polish & publishing them, because another matter muscled its way into my mind & will not leave. I guess I have to get it out this way. Fair warning, this piece isn’t autism-related or particularly insightful in any other way, either. It’s just a tough personal rant about a frustration arising from my own flaws and flaws in someone I love.
In February, my friend Sean died. He had moved away, and we weren’t communicating much, both wrapped up in our own projects & problems. I didn’t find out until several weeks later. For the first time, I’d permanently lost a human being I felt close to. I always wondered what grieving someone close would be like, but I never thought it would be Sean; not only was he young, I also underestimated his importance to me and I believe mine to him. For as little time as we spent together over the long time we knew each other, we had a crazy degree of trust, and knew we could turn to one another when no one else available would understand. Grief is strange, it’s sad, infuriating, a little funny; at times it seems to have no bearing on anything & at other times it clings to everything.
Sean was brilliant, & thoughtful, & generous; he was humble to a literal fault. He was known for being shameless, & not caring what anyone thought. He was also stubborn, rash, fatalistic, demanding, & avoidant. He enjoyed being self-destructive. He thought people were a plague on the world, yet he loved his friends more than life, but not enough to live for us. He often thanked me for helping him learn to be free. He’d repay it even with his life, he’d tell me; but now that life is gone, so I guess he reneged on that debt. I’m sure I’m not the only one. He probably undervalued that, he would have thought his whole life however long wouldn’t be enough to honor any of his friends; and he never understood how we loved him & benefited from his continued existence. Then again, he had a long history with greedy people who used him, I think he was always afraid of underestimating others’ selfishness & giving too much to those undeserving. In the end, for all the care & time I saw him put into showing his appreciation, I don’t think I was the only one whom he left doubting, at least temporarily, whether we were truly important in his eyes.
What happened, when he moved? I saw pictures of him looking comfortable in the world, which I never witnessed enough here. Only while he was sleeping or engaging with his great love, his kitty Phineas Maximus. When he snuggled with her & closed his eyes, he could let go of everyone else’s expectations; relaxation that otherwise came to him only after grueling labor. Here he was weary of bureaucracy, of hypocrisy, of parts of his job, on some days even of his longtime partner(, whom I will finally meet at the memorial few weeks away, on what would have been Sean’s 35th birthday). Not too often weary of me, but again, we didn’t spend a lot of time together, we just made the most of it. But back where he started, he seemed at ease, seemed to find inspiration & love & freedom beyond anything I could grant. I look at those pictures of him see a sense of choice & ownership on his face, or was that the peace of embracing death?
He suggested a visit, I didn’t go last year, thinking I might this summer; now I’ll never know what he had planned for our goodbye. I’ll probably never piece together the end, either. If I’m usually 3 steps ahead, Sean was always another 10 moves beyond me. Why did he give up?
Was he disappointed in others because he thought he’d allowed a chance for people to give the best of themselves & not seen the results he wanted? Was he overwhelmed by the mess he’d made of certain things?( Frankly, that doesn’t sound like Sean to me, & several of us whom he trusted kinda think he deliberately left a mess as a “fuck you” to greedy relations. He had suggested to me that he might.) Was he depressed & regretful that he had failed to shield some of us from his own worst faults?
He had told me, before he left Boston, that if his health turned I might end up in my current position, finding out late and trying to work my way in from the edges after the end. His apology wasn’t very reassuring even then; thankfully, others grieving the loss have been very accepting & welcoming. He awkwardly regretted aloud that we had both had other priorities in mind when there might have been opportunities to integrate me into his social life, & berated himself mildly. I suppose had I visited it might be different. I suppose had he bothered to mention it was urgent, I might have made serious plans while there was time.
I think what bothers me is that, despite knowing I can’t really know, the picture I’m starting to see emerge from others’ accounts is one I deeply dislike. It looks to me like he saw the end coming as he had waited for, and he ran away from most people who would call him out on his decline, ignoring the ones who were still close enough to see. He then set out to test the merits of... humanity? God? his own philosophy? in a trial by fire; tying up all his hopes of making a difference in the world with the results, and choosing not to heed those of us who questioned his methods, & wondered if he was perhaps setting himself up for failure by missing one crucial element. After that, for the first time in a while or maybe ever, he let subsequent ordeals eat away him, and he closed his heart to the grand futures he always saw before. Did he mean to fail, or hope to triumph? Or expect to fail but hope he was wrong? Did he use everything that developed, & all that never did, as an excuse to give up?
However much I wish I had visited, wonder if I might have made a difference, and am aware that I helped him take hold of the rope he hanged himself with in the end; his choices had just as much affect on the outcome, so I can take my roles in those regrets as lessons & move on. Other mistakes I made with him will pain me more, but regret is just part of life; as long as I don’t forget, I will know better & can do better. And although he knowingly left me in a bad position, he at least warned me, besides I’m not the only one and far from worst-off; no one is perfect, those who loved him most knew what we were getting.
And that’s it, really. There’s not a lot of blame to go around. To love him was not the wrong choice for us. To be human, and flawed, even to be weak, was fine for him, if not to him. It should all be fine I guess. The crazy thing is I knew he was in pain, & he might have convinced me to respect his decision, I’m only a little bitter that he didn’t help us appropriately prioritize seeing him. Others who loved him have hinted at or said the same to me. I also believe he wanted to see me(/us). So the fact that he didn’t... There are so many possible reasons I can think of, all of them remarkably sad.
I’m sorely aching to find that he had a reason to let himself die that outweighed all he might live for, because without one, despite the lack of proof, I’ll always fear my most truly awesome friend killed himself out of disappointment over things that weren’t worthy of him &/or pure stubbornness–and I’m not sure how to forgive that.
–D.R.T.Y.boi E.M.Read More
I’m adopted. I’ve known this all my life. I was born in Bogotá, Colombia, to a woman about whom I know nothing except her name( Gloria, according to my U.S. Certificate of Foreign Birth) and a very basic version of her story–and I have no way to be certain those are even real. “She wanted you to have a better life.” is what my parents always told me.
I have abandonment issues, but, I’ve never felt any sort of thread connecting that to my adoption, and I don’t remember having any such fear as a young child. It has more to do with traumatic events heightened by my hypersensitivity, and people who became important to me and then exited my life abruptly without giving a me a chance to get closure. I spent a long time haunted by shame & confusion thinking I had gotten something terribly wrong; because I didn’t know what and thus could not fix it, I also feared it might happen again at any time.
My mom seems to think about the “trauma” of my adoption a lot more than I do. In family therapy, I think I’ve figured out why. From the moment in my teenage years when we finally got a proper diagnosis from a team of experts, she started to apologize for all the things she “should have” & “shouldn’t have” done in raising a child on the spectrum. She was always taking me places. Sometimes I had to submit to structure, sometimes I was required to break routines. I was encouraged to keep trying when things were hard, to have fun in unfamiliar places & ways, to make friends even when people were difficult, and to find new ways of looking at situations I didn’t understand. I wasn’t isolated from the general populace in “special” classes.
But I don’t think any of the stuff she did like a normal mother would have bothered her as much then if she hadn’t gotten so much flack over the years for stuff she _didn’t_ do normally. My mother never made me eat anything she cooked. Her rule was that everyone in the house came to dinner and sat for the duration of the meal. Anyone not hungry or uninterested in what she had made was welcome to fix him/herself something else. Other mothers were apparently aghast at the notion that she didn’t just serve what was made & make me clean my plate.
Further, while I was required to have dinner with the family, I was allowed to bring books to restaurants, & well-meaning friends would chide her for not forcing me to sit there bored when conversation turned to sports, adult matters, or other subjects in which I lacked any interest or the ability to give input.
When I was in 3rd grade, I outgrew the largest Velcro shoes available at the time. I HATED tying & untying knots with my clumsy fingers( motor control issues are fairly common for ASDs), and I always preferred to wiggle my toes; so I elected to wear sandals from then on–even in winter( as I still do). Unbeknownst to me, a battle raged within the administration regarding an appropriate response; to some of the faculty it was very clear that I needed saving from myself. Ultimately, my supporters won when my mother( probably flashing back to painful childhood memories of having writing implements ripped from her left hand & forced into her right) told the front office something amounting to: “With a kid like this, I pick my battles. I’ll make him take his sneakers for gym. Other than that, if his feet are cold, he’ll complain. If he loses a toe, he’ll learn to live without it, plenty of people do, and then we can talk about shoes.”.
It was evidently a regular part of her life that I had no awareness of, she shielded me from the needless criticism as much as possible and bore the brunt of it herself for letting me be strange.
So I just can’t help wondering if, as she would hold in the anger of “How dare you tell me how to raise my child?” and instead respond with a thank you for good intentions or a calm but resolute insistence on her(/my) way; maybe a tiny voice in her head chimed in with a Latina accent and chided her “Your child?”.
Maybe not. My mother is a strong, smart woman. Maybe she’s always known just as well as I have that I’m her son; while of course the existence of Gloria matters to me, there’s nothing in me that ever wanted another mother, no more than any kid who isn’t mistreated.
Still, it can’t have been easy to hear over & over, especially from folks she liked & trusted, those who had years of experience raising & teaching children, that she was wrong and I should be made to bend to their expectations. Then to look at me, strange, almost alien at times; to know I was in her heart but not from her womb, that she was not like most other mothers... She must have wondered many times what she could have done differently, and perhaps what else she might have gleaned had we ties of blood.
It takes a village to raise a child, they say. But sometimes it looks more to me like that one constant presence, that patient gardener who takes the tiny seed, fragile yet brimming with potential, pots it tenderly in the soil of security, positions it carefully in the light of love. The kind of person who talks to the sprout & laughs & sings, knowing that helps it grow best even if it sits there in silence. Who, once the maturing plant is out of the warm greenhouse, exposed to the elements, will stay all night in the cold with blankets & flames to ward off a surprise frost. Fertilized with knowledge & ideals, pruned & tended, the plant grows tall & beautiful.
Autism is a pervasive developmental disorder. A developmental disorder means growth in at least one area is stunted or retarded; pervasive means it affects multiple basic functions, impacting one’s entire life. A slow & tricky breed, we require constant care long after all the plants in others’ gardens have grown hardy, flowered, and borne fruit. Some of us stop growing before reaching maturity, the rest are agonizingly slow.
Moreso even than other children, if we are neglected we may wilt & wither or grow hard & thorny; if we are sheltered and take root hidden away from the elements, we remain fragile, unable to weather any exposure. We grow wild, in unanticipated directions; if pruned back we may recoil & never produce a single bud.
Other gardeners look over & offer “helpful” advice, not understanding that if treated like every other child, many of us will never flower or fruit at all. But a rare few of us, under the patient & loving care of an even rarer breed of gardener, may some day effloresce with unique blossoms of which this world has never seen the like.
My mother took me places. She held my hand. She taught me how to find my way around the world, and gradually, much more gradually than for an ordinary person, the mess of bright colors & loud noises resolved itself into a structured network of objects & places that I could navigate.
She read me stories; complex stories, challenging. She told me her own, when we were far from books & I had to endure long & challenging undertakings in strange & harsh environments. She gifted me the ability to turn an unexpected ordeal into an adventure; & instilled a great love for adventures & the stories we could tell reminiscing about them after.
She bought me most all the books I wanted, as long as I actually read them; she took me to see plays. She knew that at the movies I sometimes had to stand at or outside the door as the volume & the emotions were both tremendously intense. She let me leave the TV on during tasks & the radio on at night, to keep my overactive brain from tripping me up at every little distraction.
She sensed innately that the world was not the same for me, & helped me to not only survive, but conquer much of it in a way most kids like me never managed. And hot tears are now running down my face as I think of how, for this, she was sometimes she was made to feel like a terrible person by well-meaning friends & strangers; and how she let herself feel like a terrible mother. No wonder it took us 2 years of therapy before she could stop apologizing for not getting everything right.
Thank you, mother, for being the gardener of my soul. No greener thumb for me than yours; our bond goes much deeper than blood roots. The other moms never knew what they were missing; now I want you to see me in full bloom.
Happy Mother’s Day.
I might reside in a less-than-shatterproof it.
Recently, I was sitting eating lunch in a mall food court. A pretty young latina in her 20s, maybe, was at the next table, making extremely opinionated comments about various acquaintances rather loudly to a middle-aged black lady, all in front of her even-prettier young daughter( perhaps 5 years old).
Growing more & more disgusted by what she was saying feet away from an impressionable mind, I decided, as she was getting up to leave, to speak my mind. “For the 15 minutes that I have been sitting here,” I said, “you have been talking shit about people. You really seem like a very small-minded & judgmental woman.”. I must admit I enjoyed the look of confusion that flitted across her face, but she recovered quickly.
“You don’t know me.” she informed me, as though I had been unaware of this fact, “You don’t know my life. I’m not talking shit; what I am doing here is supporting people. So you really need to get to know me before jumping into my conversations.”.
Wishing I had a dictionary so that I could double-check the meaning of the verb ‘support’, I smiled broadly, told her she was right so I would love to get to know her, & asked if she would like my e-mail address. I truly enjoy meeting new people, after all, & I was feeling perhaps a little hypocritical after calling a stranger judgmental. While she took a moment to attempt to process what had just happened, I also assured her that I'm gay & was not hitting on her. Without another word, she turned to see if her daughter was ready to go.
As they walked away, her friend hung back a moment, & after checking to be sure the young “lady” was out of earshot, smiled & told me “You know, you really was right about what you said.”, then laughed softly & perhaps a little sadly before departing.
P.S.: That pretty much made my day. X·D
What is love?
Baby, don’t hurt me; don’t hurt me no more.( Sorry, couldn’t resist. ;-p)
Getting serious, though, let me start out by saying that relationships are completely irrelevant to my definition of love. One person may love another without having a relationship at all, & people can have a relationship without really loving.
I particularly tend to avoid the term “in love” but for a few specific circumstances, because what people really mean by it is that they’re romantically infatuated. Literally–do you know the old definition of romance?
A romance is a story( i.e., a fiction; or, by some overly-strict standards, a lie) in which an idealized version of something is related. At one point, it referred to tales of adventure featuring fantastic situations & idealized heroes who overcame the seemingly-insurmountable odds to win the day. Eventually, this gave way to “romances of love”; tales in which, rather than the heroic figure, it was an idealized passion( sometimes still involving a similar figure, now the “knight in shining armor” or “prince charming” archetypes) that would “conquer all”; either uniting lovers when the world endeavored to keep them apart, or otherwise allowing them to accomplish, together( or “for” one another), feats that had been thought impossible by those who had previously tried & failed( either alone or bolstered by a passion that was somehow less than the “true love” of the heroes).
So now, with this idealized “love” firmly implanted in our cultural awareness, is it any wonder that people who fall “in love” & have a “fairytale romance” are disillusioned when reality sets in? They really shouldn’t be so surprised.
Sometimes, to say one is “in love” can be justified, when there’s more to it than just the romance; but “True Love” as we now see it in fiction, then, would be the rare-in-real-life case in which two( or more?) people not only develop a mutual romantic infatuation, and real love, but also manage to maintain that romantic interest, preferably expressed as a domestic/sexual partnership, perhaps a marriage, for the rest of their natural lives( or at least until robbed of parts of their personalities by brain damage/dysfunction) & beyond. “True Love” is a misnomer for this sequence of events; “Happily Ever After” is a better label.
(One popular culture phenomenon which completely subverts this misunderstanding of love is the excellent Disney animated film Frozen. If you haven’t seen it because you have some preconceived notion about Disney or musicals or Idina Menzel or animation or whatever, you are doing yourself a great disservice. It gives the impression of being overhyped, but this is actually due to it being so excellent that it naturally makes people enthusiastic. It is one of the best films I have ever seen, because it conveys a lot of hard-but-necessary truths about relationships in an easy-to-swallow manner that even kids can understand, running counter to the usual crap with which Hollywood fills our heads.)
I definitely believe in Happily Ever After as a phenomenon, I know couples who have been that to each other... but I think that a lot of people pursue H.A.E. so single-mindedly that they miss out on opportunities to both discover other real loves, & to attain fulfillment through a variety of more temporary domestic/sexual partnerships.
Love, even real & mutual love, provides no guarantee that people are suited to live H.A.E.; it’s not even a guarantee that they won’t hurt each other badly.( We’ll deal with abusive relationships in a future entry. For now, I’ll just say that the love can be real, but that doesn’t justify staying together when dysfunction in expressing it becomes dangerous.)
So then, what is love? Here’s my definition:
“I usually define love, at least as far as love for another person goes, as an intense certainty, beyond reason, & beyond any other emotion; that for at least a single critical instant one’s life was better, or the universe as a whole was greater, or something was just *right* that would have otherwise been wrong; simply because that person, just as s/he was, with all his/her strengths & weaknesses, all his/her flaws & paradoxical perfection, existed & was right there in that moment, to make all the difference; either by luck when no one & nothing else available would have sufficed, or because the person in question had another choice yet chose to be there instead–especially if others who could have been chose not to.
Love for another, then, is nothing more or less than the unqualified belief that if one had never crossed paths with that person, one’s world would be poorer for it.”
I’ll have more to say in a future post.
Let’s talk about honesty.
If you ask me “Do I look fat in this?”, I’m probably going to give you one of 3 answers. None of those is my mother’s take on the (socially-)correct response, “Honey, you look fantastic!” if the outfit is remotely acceptable & one thinks the asker likes it, & a noncommital shrug & subject change otherwise. All of my answers assume you actually meant to ask “Do you think that while wearing this outfit I look unpleasantly fat to a greater degree than I look naked or wearing other clothes you’ve seen me in?”.
If it makes you look bloated & disgusting, I’ll say “Yeah, don’t wear that.”... If you then lament that you don’t have a better alternative I’m going to want to know you why you bothered asking, since you would wear it either way. If you don’t have a logical answer, I may mock or criticize you for asking pointless questions. Note, however, that I don’t ask because I’m looking for a reason to criticize you. I ask because I am curious as to whether there is a good reason I haven’t thought of, so that I won’t overlook it again in the future.
If you look fatter than you actually are, but not unattractive in it, I’ll probably say “Yeah, but it doesn’t look bad, sowhy does it matter?”.( Perhaps you are planning an attempt to impress someone who is prejudiced against fat people, but then you’d better believe I’ll hound you about why you would give that person an iota of your consideration.)
If it does not make you look any fatter than you are, I’d be mostly likely to point out “No, but you obviously think it might, since you asked me. If you’re going to keep worrying about that, you shouldn’t wear it.”–you should mind that depending on how distracted or bored/annoyed I am, I might not bother telling you anything else about how you look in it, even if the resulting aesthetic is notably stunning or hideous; if you wear it anyway & it’s a fiasco, I’ll be amused.
There are special cases, of course.
If you actually are fat regardless of what you wear, then depending on mood & how close we are, “Yeah, don’t wear that.” might be followed up with “& join a gym.”, an acceptable but fattening outfit might garner “You always look fat anyway, at least you look good in that.”, & an outfit that has no effect on my perception of your weight/girth could provoke “No fatter than usual.”. If you get offended, I’m 100% absolutely NOT going to apologize; I’m going to tell you not to ask me questions, ever, if you might not want my honest opinion.
If you’re skinny, expect “Where did you get a fatsuit?”, or “Yeah, weird, do you have a pillow under there? Well I like it, you usually look like a twig.” for outfits in which you appear still thin or heavier but average.( If you look genuinely fat, I will probably stammer, furrow my brow, & walk circles around you trying to determine if it’s a trick done with mirrors or what.)
So, what have we learned? Perhaps you learned to thing twice about asking me things you don’t want to know? Me, I’ve learned that the difference between what neurotypical people call “honesty” & the practice of actually telling the truth is just flabbergasting sometimes. Not that I don’t understand the concept of tact, but I truly DON’T understand the absurd practice of asking questions to which one knows the answer, unless one is looking for confirmation( in which case one should generally phrase it that way, e.g “This makes me look fat, right?”, & anticipate that I will agree unless you’re wrong).
Yes, I also understand reassurance, but what good is reassurance that eschews the truth for a pleasant lie? If you look fat, why would you want me to lie or avoid anwsering? If I say you look fat but still look fine or even great, why isn’t that good enough? While I absolutely support any effort to improve your health & well-being, you should stop obsessing over rigid standards of beauty that aren’t even realistic for everyone, & learn to love the skin you’re in. I could go off on a huge tangent here, but that will have to wait for another entry.
For now I’ll just say what’s tried, trite–& true: you’ll be happier when you learn to accept yourself, flaws & all, & work with your quirks instead of against them.( If you don’t know how, I’d be happy to offer some pointers.) The same is true of reality: it’s only when we recognize the truth, no matter how much we want to turn away, that we gain the power to confront it head on & change things.
So the next time someone asks “How are you?” on a bad day, think twice before saying “Fine.”. Try admitting “Miserable, but hoping I can improve things soon. Thank you for asking. How are you?”. Dealing with people on a more sincere basis, even at such a basic level, can do wonders for your outlook.
Hi there. :-)
You probably don’t know me yet–maybe even if you think you do. That’s about to change.
A good place to start is my AutLife Manifesto. After all, that’s what touched all this off–the day when, upset & reeling at a harsh exchange with my beloved the night before, I finally tried, on my Facebook timeline, to make it clear to people EXACTLY what I go through on a daily, &, indeed, moment-to-moment basis.
The positive response overwhelmed me, & though I had toyed with the idea before, I knew then that I had to write, really write, about my life, my experiences & my worldview–not just for my own benefit, but for every misunderstood soul with this diffability that prevents most from effectively communicating what it’s like. I also wanted to write for the sake of those with other abnormalities–i.e., everyone. ;-) That might sound a little self-important. I do possess a high level of justified self-confidence, surpassed only by my humility. Sadly, I lack any sense of humor or irony whatsoever. ;-p
Seriously, though, what makes me think my story is worth telling? Where would I get the daft idea that a man like me, someone born broken or at the very least destined to be, can make a difference? Well, I’ve helped a lot of people, or so they tell me. I’ve brought my share of smiles into the world. I’ve been credited with improving lives, with changing them for the better; & once or twice, it’s even been said that I saved them. Truth is, though–I don’t know if this can matter. I only know I have to try. I must attempt to repay the kindness that has been shown to me by a world I struggle to be a part of.
It’s been a good while now since my realization–sometimes it’s hard for me to get started even when I have a good idea. This week, however, it’s clear this idea’s time has come, even though the site here is still in rough shape.( I promise it’ll improve as I go along.) So here goes, time to share perspective on what it means being human, from someone who had to learn to be human the hard way.
I’m finally ready to make my world better, & if I do my job right, maybe your world will follow. If we work together, who knows? Maybe the world will follow. Hope springs eternal for those who have faith in tomorrow, in themselves, & in their loved ones. I have faith in all of you.
Let’s get started, then. Full-spectrum illumination for ASD & NT alike awaits, so click on through to the AutLife Manifesto.
2013, August 13th:
“I’m autistic. In other words, mentally disabled. Pretty severely.[ It’s not just “mild Asperger’s Syndrome”, as we thought for so long.] I cope( cover for it) well. Very well. So well that most of you who have met me don’t think of me as disabled, & those who do think it’s great how well I have dealt with it – & then forget that I am ALWAYS still dealing with it.
“I have spent over two-thirds of my life observing & analyzing people & learning to interpret their actions with millions of rules, each of which has between dozens & thousands of exceptions & special cases. I have memorized these billions of possibilities & interpretations, because as an autistic person that is my ONLY means to comprehend things that, for a neurotypical individual, are instinctively obvious; & I spend hours & hours every day imagining dozens or hundreds of possible scenarios & how those algorithms might apply, as well as organizing myriad facts in my head that will affect the outcomes.
“Still, it’s far from perfect, I get predictions wrong or encounter surprises that slow me down hundreds of times a day. People often accuse me of overthinking, well, YOU would be overthinking if you thought about your interactions with others this much instead of just using your instincts; for ME that same level of thought is the only way, what with lacking those instincts, to avoid missing or misunderstanding literally( & I MEAN literally) everything anyone says & does.
“& I know that I can be difficult to understand or react to when lost in thought, & I can cause stress to others when I am emotional, sometimes seemingly at random from their perspective; but I wonder if anyone ever appreciates that EVERY interaction I have with anyone, EVER, even the pleasant ones, is potentially just as taxing for me as I am at my most difficult for them. When I am close to people, know them well, it gets much easier, yes; but it is NEVER effortless. It is NEVER simple. It is NEVER, EVER not difficult & draining; at _best_, it is like working hard at a tough job you really love; it is worth doing, eventually some little things are second nature, & either the job or the results are fulfilling for you, but you still end up exhausted when you do it for hours on end. Often, though, it is harder, MUCH harder, even uncomfortably hard... just like listening to me have a breakdown or get frustrated & pissed is uncomfortable for the other people in my life.
“I don’t generally whine about it because that really doesn’t help, & I don’t want to be seen that way. Everybody talks about the weather... So I fucking did something about it. I learned. I spent around EIGHTEEN YEARS learning to do this, to even _speak_ to you. To look you in the eye. To have the *slightest* inkling of what you might mean when it’s not identical to what you say. To interact with the world in a way that not only makes sense to me, but also does not stress other people by appearing excessively strange( I know I will always be somewhat strange, so I strive to just not be unduly stress-causing with it). 18 years is a good deal longer than it takes many people to get a doctoral degree, & I had NO mentors, NO role models, no one who even understood what I wanted/needed to learn, including me sometimes( nothing is more important to know than what it is you don’t know).
“It took( & still takes, not done learning or implementing), *fuck modesty*, a brilliant mind, a lot of fucking talent, a will of adamant, & enough love to see Hercules through 12,000 labors. & out of that love I try to do the best I can, for everyone, all the time, & see the best in most of the worst folks; because really, we’re amazing, human beings: 3 pounds of little grey cells & a couple hundred pounds of other, & all this stuff I work so hard on is just, *automatic*, for the ones who aren’t broken like this; & in addition to that, somewhere in most of us humans with our 3 lb. brains is the capacity to take other unfamiliar things & just do what I did, put in the effort & *make* something, a system or a tool, to handle just about everything else; not only to survive or feel good, but even to try to make the whole world better, in accordance with our own ideals of what that means.
“How can you not admire, & so come to respect, & so, inevitably, come to truly love anything so wondrously unique & unlikely, & so brimming with power & potential, as a human being? Every single person embodies all that, & I can’t not know & see & feel that, even when I find them difficult.
“So I’m sorry if it comes across as selfish & weird & maybe arrogant when I’m a little frantic to understand or plan or deal with things; when I’m impatient; when I don’t make perfect sense, when I ask or tell you to do something without a good explanation beforehand. But, sometimes, when someone close to me is shutting down on me because I am wound up or confused, & I am asking dozens of questions s/he doesn’t think matter, or upset about something s/he doesn’t understand & won’t/can’t listen to me explain; I wonder why, if I suck it up constantly & deal with all of you( who all make just as little sense to me in my true mind) someone who likes or even loves me can’t suck it up & deal with the more uncomfortable side of me once in a while?
“& maybe a part of me is afraid, in my insecurity, that no matter how good at playing normal-ish I get, I’ll never be good enough for anyone but my parents to love me that much.”
Thanks for reading.
I don’t know how to begin.
Now is the winter-
...winter is what’s left for us. & it’s a sin.
Too much time is never enough; too much rhyme is gonna get tough
free... to find the words that really. Express, me.
What’s in my heart since you left, since I spoke, & you didn’t listen
Walked out the door & passed me off someone else’s problem “see what you can do”.
I’ve got feelings too. Passion, compassion, fashioned into:
a heart; living, beating. A mind; racing, thinking. A soul; hoping praying, wishing wanting.
& he didn’t blame you, or not you alone. With or without you I a l w a y s blame-
But you heard, what you expected to hear. What you heard all those times
I said it. & still when I didn’t -you heard in your mind( is’t nobler?). But it wasn’t from my mind,
or heart or soul. I am not that boy. I am that man, so I spoke other words
but you don’t listen.
I’m not that man
that you hoped for. Wished for. Dreamed of; wanted me to be
wanted me to be... on that road... I took the other, without you;
it wanted wear. It calls to me. & you don’t listen
I’ll never be
I can’t( I cant)-
...be what I’m not. But I’m a good man, a kind man,
a strong man, & honest.( Is’t?) I do wish the man I am
could be the right man for you, but not to be the man I’m not. That man, not; yet I’m
an honest man & if I couldn’t be whom you wanted I at least
told you whom I am. But you don’t see me
as I am; I told you whom I am. And that I love. And I love you.
I always say a real love is forever, no matter what.
But you don’t listen.
And I yelled but the distance
(the distance) is too great. And I made it wider. & I’m sorry
I yelled. I just wanted to be heard, but it always feels like- you don’t listen.
I remember when we smiled, & laughed. And rolled in the grass & flew on the summer breeze.
And now when we forget, for a minute, winter; we smile & we dream & exist. But nothing gold
can... Now tears race down my cheeks, fall on my hands.
I am good I am kind I am honest. I am shrewd I am aware I am thoughtful.
I am proud I am stubborn I am sure. I am hot I am cold I am severe. I am you
& not at all you; will, never be. I’m me; I am only the man I was meant to be; I am also the man you made me, too.
(I play on the world stage as once on a stone, when the sky would be falling; dear Atlas.)
And everyone else, they made me /tu/. The voices cry out in me, have life in me; ...but you don’t listen.
I can’t be anything but what I am in each moment. I wouldn’t if I could, I love me- thanks to you. Most people don’t
love themselves. Ever. It’s an immeasurable treasure.
I owe each & every person who has loved me, they are legion; & you among the most of all. Thank you
& I’m sorry I yelled. We can’t take back the past... or I would steal back precious heat; & I’d hold
you holding me.
I love you & I’m sorry & I wish we could go back
and fly kites ’til the summer sun sets
but you’ll probably never know. You’ll never know if you don’t listen.
In our grassy field there’re no more children( leaf subsides...),
will never again be children.( I’ll find a new field for my children.) Still I’m waiting in the old field
but you don’t see me.
’Cuz you won’t see me.
And you won’t listen.
Listen: A Poem for My Father
[© October, 2011, orriginally posted at http://AJournalGuy.LiveJournal.com/80532.html]