Browsing "Psychology"
Oct 28, 2013 - Psychology    No Comments

Who on earth are you?

Our amazing minister, the Rev. Victoria Safford, preached a sermon this morning that asked a very existential question: “Who are you?” The funny thing to contemplate is that only at Halloween do we ask one another—even the very youngest in our midst—and accept with gravity and respect whatever answer we receive. In the spirit of revealing my true self in a time of masquerade, I thought I’d answer the question.

I am a woman. I am a daughter and sister, both biological and by marriage. I am a mother. I am still fertile. I am done having children. I am violently ill when I use hormonal birth control.

I am a wife. I am a partner. I am faithful. I am dedicated. I am a believer in true love. I am wildly, impossibly lucky.

I am an educator. I am a teacher of history, and religions, and languages, and rhetoric. I am an academic, conversant in the jargon of the ivory tower. I am a bit lost when I can’t practice my vocation. I am committed to learning everyday. I am a repository of vast stores of mostly useless information.

I am a creator. I am a writer. I am a musician. I am crafty, but not very handy. I am incapable of drawing a horse. I am at home in the kitchen. I am a fan of romance novels, the Muppets, lesbian erotica, rules-light roleplaying games, and morbid humor.

I am a bit of a slob, and a lot of a pack rat. I am convinced I am preserving valuable artifacts for future generations. I am a devotee of the chaos theory of organization. I am fond of folding fresh, hot laundry. I am reluctant to shower every day. I am in need of a housekeeper.

I am in pain every minute of every day. I am willful and heedless of my own limits sometimes. I am frustrated with the unpredictability of my disease. I am bad at self-care. I am disappointed that I cannot do more.

I am blessed with an autistic mind and keen senses. I am the owner of an eidetic memory and perfect relative pitch. I am susceptible to migraines from loud sudden noises. I am self-trained to read others for clues in their words and bodies so I can navigate the world more easily.

I am a survivor.

I am trained as a crisis counselor. I am a world traveler. I am an extrovert. I am dedicated to social justice. I am incapable of more peace work, because I am unable to engage in a fight for which there is no quantifiable chance of victory. I am drawn to anti-racism work. I am enchanted with issue politics and the feeling I get from a good protest. I am unsure whether I’m valuable to any of the people or causes I engage in.

I am insatiably curious about people. I am in love with stories and storytelling. I am a good listener. I am told I’m an entertaining, satisfying audience. I am never going to get tired of learning about others’ lives and views. I am honored to be allowed to share each and every journey.

I am a geek. I am a cat person. I am a Northern girl who needs at least four seasons. I am a Jayhawk and a cheesehead, but I am NOT a Nittany Lion. I am not a very good sports fan. I am a voracious reader. I am a stickler for grammar. I am a polyglot. I am good at improvisation. I am good under pressure. I am not good at getting quality sleep.

I am overweight. I am poor. I am naturally brown-haired. I am weighed down by crushing debt. I am never going to be a homeowner. I am not sure where this week’s meals will come from. I am scared for the future. I am tired of being afraid. I am always looking forward.

I am broken. I am forgiving. I am a child of Nature. I am made of star stuff. I am convinced of the divine nature of this planet. I am a skeptic. I am mystified by and utterly committed to my human brothers and sisters. I am in need of love, and I am devoted to giving away more love than I get.

And I am going to squeeze every drop from this short, precious life.

Oct 11, 2013 - Physical Ed, Psychology    No Comments

Written In My Bones

Last March, I stopped sleeping. I’m no stranger to insomnia, so at first I just thought I was launching into another warped cycle. I stocked up the Netflix queue and resolved to wait it out.

But it didn’t resolve. No matter how tired I got–well past the point in any normal round of sleeplessness where sheer exhaustion would keep me down all night–I woke up between 1:30 and 3:00am, and couldn’t fall asleep again until the alarm was about to go off to wake the kids for school. I couldn’t figure it out. I cut caffeine after 6pm, I stopped napping (no matter how much I needed the extra spoons that helped me steal back), I adjusted my night-time meds up a notch.

Nothing. 3am and wide awake.

And then I remembered: Exactly that time, one year earlier, I lay awake to listen for Connor’s footsteps on the kitchen floor, going for a knife to kill himself. I never heard those footsteps last March, thank the gods, and there was no such fear this March. But my body knew that anniversary better than I did, and it sent a clear message–“It’s March, and you need to keep your boy safe. You can sleep when the sun is up.”

We all have smells, sounds, textures, even lighting that bring us directly back to very specific times and places. The silky binding on a baby blanket. The smell of the cleaning fluid from that time in the hospital. The unreasonably comforting taste of Kraft Singles melted on Wonder bread. The suffocating weight of a body, even though it’s not the body, pressing down on yours. When I asked about how their bodies store memories, friends mentioned more of these than I could keep up with. There’s no doubt that sensory triggers own the key to our memory, whether we like it or not.

Those experiences don’t surprise me anymore, except sometimes in the strength and speed that they fold time neatly in half, delivering us back to a precise moment in the past. What does surprise me is how well my body remembers past events that my conscious memory has long packed away in mothballs.

This March wasn’t the first time I’ve felt the gravity of memory. For almost a decade, I’d get depressed and irritable in May, around the time of year I was sexually assaulted. And a year after my deepest dive into suicidal depression, I was so anxious and high-strung, I was absolutely intolerable with trying to make everything better than the previous August. Neither of these is surprising–many people who go through trauma of some kind experience difficulty with anniversaries of those occurrences, well beyond just realizing that significant time has passed even as it felt like the hours and days were barely creeping along since incomprehensible loss.

There are other things that can trigger buried experiences. I worked with a physical therapist who practiced myofascial release. Fascia is the connective tissue that links our musculoskeletal system; it covers every single muscle, fiber, and organ in our bodies. When our bodies sustain stress and trauma, it stretches and tightens this connective web, causing pain. And therapists practicing this technique help people unwind and loosen the places where the fascia is bunched up and causing problems.

My therapist warned me when we started that unwinding damage sometimes causes memories to rewind in equally powerful ways. He said my body remembered things I hadn’t thought about in years, maybe even things that precede what I consciously knew. He advised me to have some time free after each appointment, in case I needed time to recover emotionally. And he was so right. We unwound injuries and threats as old as I was: fear and bracing against an unpredictable alcoholic father, a rib-breaking high-speed run-in with a vaulting horse, and the car accident that most likely triggered whatever latent potential for fibromyalgia rested in my body. I cried at almost every session, and only once was it from physical pain.

Now, so soon after helping my friend through the first steps away from sexual trauma, I find that my pain levels are sky-high. I’m not eating much. Honestly, I’m drinking more, though still never to drunkenness. I feel ill at ease in my body, and I find myself devoutly wishing to change its landscape, whether with wax (don’t ask) or tattoo ink, or cloak it in clothes that aren’t heavy with past wearings.

I can’t afford any of that, though. So I just sit here, with this body that remembers too much.

Oct 2, 2013 - Psychology, Sex Ed    1 Comment

Right Where I Should Be

Being right where you’re needed is exhausting. Don’t get me wrong, it’s also the most rewarding thing in the world, the thing that convinces you that all the trials you’ve endured aren’t just character building, but of redeemable use to other human beings. But I feel like I could happily sleep for a month.

Monday evening, a dear friend was raped. I got the text just as a panel on school pushouts was starting. Instead of mourning and raging at a distance, as I’ve done over the years when faraway friends went through their own trauma, I could do what I’d always wanted–even needed–to do: I quietly stood up, made my apologies, and raced to be with her within 15 minutes.

There’s something profoundly startling to hear your own words coming out of someone else’s mouth. Parents experience it all the time when their own favorite gems emerge from the miniature humans. But those dark thoughts of doubt, self-blame, and instinctive mistrust of your own reactions don’t sound right when you hear them out loud in another voice. She was full of “I shouldn’t have” and “I must have” and “If only.” It was hard to look at those ugly ideas in the light of day, and it gave me pleasure to shoot each one down with precision.

Eventually, she reached the conclusion that she wanted to report the assault. Several of the pieces of her story gave me that bone-deep certainty that this was his modus operandi, and that she wasn’t his first victim. She wasn’t content to be a statistic, and she felt safe enough and angry enough to do what she could to make sure she was his last victim. I worry I influenced her to do this because I wasn’t able to.

I went with her to the hospital, and apparently projected so much authority and right-of-place that it took a few hours for the staff to realize I wasn’t an official advocate from the local sexual assault survivors’ service. I held her hand, I made inappropriate jokes, I explained what would happen next. I told her to ride the waves of emotion without resistance or embarrassment, because fighting them would take energy she’d need for other things.

The one thing I didn’t have to do was advocate for her against skeptical or disrespectful people. Every single person we encountered treated her with credulity, sensitivity, and most of all, kindness. The nurse told us that police department, hospital staff, and survivor services had worked together to create an integrated, victim-centered care system. I want more women in our city to know this is the case. There are so many reasons women don’t report, and fear of bad treatment doesn’t have to be one, at least not here.

All throughout this, and since then, I’ve been able to say the things I wish someone could’ve told me. I don’t think my friend knows how meaningful and precious that chance is. And because if they’re worth saying once, they’re worth repeating, I’ll say them again here:

Nothing you did made him hurt you. You’re not wrong for wanting to find someone. There’s no way you could’ve known that when he agreed to the boundaries you carefully articulated, he wasn’t planning to respect them. You weren’t stupid to find him attractive and trustworthy–he was grooming you and putting on his best show.

You’re not wrong when you think things will never be the same. And the only way through this is forward; there’s no reverse gear in this car. Things and places that used to feel safe won’t feel that way for a while, and whatever you need to do to find comfort and refuge is okay. The sooner you get into therapy, the better. There’s never a need to go through this alone.

There’s no timer on recovery. There are no milestones that you need to achieve in a certain order or by certain calendar marks. You may not want to think about dating again for a good long time. You may want to take back control of your body and your pleasure sooner than you think you should want to, but that’s not wrong or “slutty” or even illogical. All you have to do is live through this at your own speed.

You’re not responsible for anyone else’s feelings, and telling people the truth doesn’t require you to shepherd them through their own emotional responses. People say things in shock that they don’t mean, so don’t invest too much in their first reactions. Some people just can’t make themselves emotionally available for this, and they may offer stuff instead. You’re not obligated to invent things for people who want to help that way.

Finally, you’re part of a not-so-secret society now. Our stories are remarkably similar, no matter how different they are. We’ve shared common thoughts, common physical responses. It’s true–this destroys some people. But it empowers many others, and how you choose to put your experience into action is up to you. And if you’re very lucky, someday you’ll be able to take what you’ve learned and make it work for someone you love, and it’ll all seem strangely worth it. Be sure to thank that person for letting you help.

Aug 12, 2013 - Game Theory, Psychology    2 Comments

Gamerography, Vol. 3: Wired to Play Differently

There’s finally a decent volume of literature out there about how women experience games–especially RPGs and video games–different than men. It helps all of us who’ve struggled to put words to the perspectives that we bring to the gaming table, many of which result in very different interactions with the rules, the stories, and the other gamers. And it provides writers and designers with insights that have changed the way games are written, so they allow more kinds of gamers to contribute to the collective interaction.

So I’d like to attempt to do something similar with another piece of myself that I bring to the gaming table. I have Asperger’s Syndrome, a difference in brain-wiring that places me on the autism spectrum. This part of myself is a relatively new discovery, but it’s undeniable and incredibly enlightening about things I could never otherwise explain. Many of these features affect how I experience creativity, social interaction, and collaborative work, three central pieces of the act of tabletop gaming.

The most important factor for me is my visual memory. I’ve written about my odd filing system before, but until the HBO movie about the life of Temple Grandin, I’d never seen my memory process outside my head. Because I have that visual catalog in my mind, I get incredibly vivid pictures from a multiplicity of contexts whenever someone invokes a place, a person, a costume, and a piece of equipment.

Practically speaking, this manifests for me in gaming in a number of ways. I have virtual battlemats in my head, and I can examine them from any vantage point, without needing minis or land/cityscapes (though I do enjoy the physical objects very much, too, for different reasons). I have pictures of characters and settings in my head that I literally inhabit. I know the size of my character’s bodies, how various features affect the way they move and sound. I assign them sensory features as well as hair and eye color, so I know how they smell and the close-up feel of their skin and clothing. They’re live, vivid people in real, textured places.

Another factor is my tendency to seek out patterns. It’s not compulsive, like someone with OCD might be; it is, though, automatic. For many autistic gamers, this allows them to understand RPG systems and make them do fantastic tricks, like a lion tamer making a beast jump through hoops. They see game systems as just another coding language that can be manipulated to perform the desired action.

Sadly, this is not me. I cannot grok systems unless the rules are so basically logical and self-evident, with a minimum of math, that they’re labeled “Ages 7 and up.” (No, I can’t explain this at all. I can at least read 10 different languages, so systems aren’t the problem, but math and I have a beef going back to 7th Grade.) As a consequence, character generation is agony unless it’s basically a single-step process, and I almost never play magic users. I vastly prefer cinematic, story-driven systems in which dice are only employed to give an edge of chance to the action I propose.

My pattern recognition talent gives me a different edge. First, I’m hell on carefully planned mysteries and adventures. One friend calls me the “storybreaker”–you can practically see the tire tracks where I went offroad, revealing options that never occurred to the author, in the ones that were eventually published. I don’t mean to circumvent plot devices; it’s a function of my autistic tendency to rapidly play through consequences to the Nth degree, thus eliminating options which I know will end in failure and generating other possibilities from that birds-eye view.

Second, I love pregens, even in systems that are entirely new to me. The words and numbers assemble themselves into 3D constructions in my mind. The closest I can come to a visual representation of this experience comes with the virtual reality models Tony Stark uses in the Iron Man movies to analyze maps, machinery plans, and crime scenes. (Here’s an example.)  The alchemical process of “blowing up” a character sheet combines with my sensory memory to conceive a fully formed person almost instantaneously. I really wish you could see what this looks like–it’s pretty amazing from the inside.

The final factor I’ll mention in this post is my relationship with words. I’m hyperlexic (in short, far too many words for any and all things that pass through my head or mouth) and I’m a terrible show-off. Just as words form lifelike people and places in my mind, I love to craft my own contributions to the game with descriptions and dialogue, as vividly rendered as I can manage. Back in my days of MUSHing, the whole game was nothing but words on a screen, but I have scenes lodged in my memory that are so thoroughly illustrated and acted that I have difficulty remembering whether I saw them in a movie. And when I’m at the table, I can use the additional tools of vocal inflection, accents, gestures, and expressions, so my love of acting, connected to that vivid character in my head, can lead me to overplay my parts to a degree that might make other players uncomfortable. At least I don’t insist on staying in character while we take pizza breaks.

Love > Fear

I’m going to summer camp this year. Not as a parent or a teacher, but as a student at the Leadership Institute run by National People’s Action. This opportunity is dearly bought with the love and financial votes of confidence of many friends, as well as the perseverance of the Darling Husband, who’ll get his share of single parenting back from all those cons he’s attended for work over the years. And I’m determined to use this camp’s resources to level up my skills and be a stronger leader for the causes I feel strongly about. I know it’s going to be a challenging, agitating, soul-searching experience–I’m ready for that.

But today, I was faced with a view of my activism that I’d never, ever envisioned. A beloved friend suggested that I might be on the path toward the kind of activism that harms and terrorizes other people. And I found myself replaying all the marches, rallies, phone calls, planning meetings, training sessions, and conversations I’ve had. I searched them from the outside looking in, scanning for visions of myself as frightening, threatening, angry, or intimidating. And, of course, my vivid visual imagination got straight to work manufacturing reflections of past scenes or shadows of future selves in which I’m furious and self-righteous, intolerant of other viewpoints, but blind to the faults in my own.

But those pictures aren’t real, and the rest of my memories yield images I can’t associate with terror. I speak clearly and fearlessly, yet with respect, to anyone who’ll listen. I work hard, but I goof off too and distract my friends for a few laughs in brief downtimes. I sing, I clap, I chant, I dance. I’ve cried with both joy and grief in the halls of power and in the streets.

I don’t know how these things are scary.

I do have the clarity to see that parts of my activism might provoke a negative response in some people. I may appear to have a rigid sense of what’s right and little tolerance for other positions. My voice can be strident when I try to make it heard over those who try to drown it out. I’m not a small person, and when I raise a fist of power or link arms in solidarity with others, I probably look unmovable. I talk a lot about the actions I’m taking, because they take up a big part of my life. I retweet too much.

It IS radical, what I do. Maybe I should get used to that statement: I am a radical. I believe in radical things, like the worth and dignity of every single person on this planet, and the power of a single person’s action joined with others. I do radical things, like give my time and energy and voice to causes that do not directly benefit me at all, just because they seem worthwhile and I recognize the power that comes with my privilege. I try to offer radical acceptance to every person I meet, by acknowledging that every life is a journey, and we’re not all at the same place on the path at the same time–judging or criticizing another person for being where they are on their path accomplishes nothing.

The internal conflicts I weather as I work through the evolution of my beliefs and the consequences of my actions aren’t visible to most people, so I’m sure I seem like another cardboard cut-out liberal rabble-rouser. I don’t talk with everyone about why some causes get my attention and others don’t. Part of that is embarrassment at the inexplicable, emotional reasons for some of those decisions. I have internal boundaries among the issues and tactics of activism that don’t always come from a sensible place.

But I hope my primary motivations are clear as day: I want everyone to feel the same love and enjoy the same rights I do. I love learning and free will and self-determination, and I believe everyone deserves equal access to them. Because that’s what moves me, I’m categorically opposed to tactics designed to frighten or deprive anyone of something that’s rightfully theirs.

And here’s where I’ll make the only qualification in this whole screed: disproportionate political or financial power is not a right. Those are things you earn, and if you use them to take away the rights and freedoms of others, then you have to be ready for the same people who gave them to demand them back. If you’re the one in power, the idea of losing that position might be frightening. It shouldn’t be, because power over others isn’t a right, but nobody likes to lose control. I can empathize; I’m a control freak too.

But one of the founding principles of democracy and human rights is the power of a group of people to rise up peacefully, speak their piece, and create change in society. Sometimes, the language of this right is misappropriated by people who want to use that power to take away others’ rights (often, that exact same right they’re exercising). But the truly great moments in history largely correlate to times when individuals have stood up for their rights in the face of overwhelming disparity in power and force.

It takes guts and advice and practice and support to do that and not falter. It takes the sight of other people to the left and right of you, whether it’s in a parade or a phone center cubicle or a line of jail cells. That’s who I want to be for others who are fighting for a better world. That’s what I want to be trained to do. And if my faith and conviction in the possibility of change toward greater freedom makes  someone feel afraid of me or bad about themselves, all I can do is say that I love them and where they are in their journey. I’m just trying to be my whole, powerful self and make room for others to do the same.

Apr 25, 2013 - Psychology, Social Studies    2 Comments

Feel the Burn

I’m sleeping pretty well, but I wake up exhausted every morning. This is Day 8 of a skull-crushing tension headache. Fears I’m forgetting something important plague me constantly. Activities that used to leave me with a two-hour adrenaline hangover now make me tired before I even start. My threshold for sensory overload is so low, I’m having small meltdowns several times a day. I stop taking phone calls. I avoid friends.

I am burned out.

I’m excellent at being the little cog in a big machine, but I need a solid sense of the macro to stay motivated. But lately, everything’s been so myopic that I can’t see my place in the larger efforts I’m working toward, and it hasn’t been good for me. I feel myself withdrawing, and I don’t like being powerless to stop it. It’s crunch time, and I’m more disengaged than ever.

I called a dear friend for a lunch date, to ask him how he’s dealt with the burnout that must have been familiar in his super-intense job over the last year. Just seeing him makes colors brighter, but I need his advice, so I asked him how he manages to stay fresh over the long haul.

Some of that advice is expected. You have to set boundaries and practice saying “no.” Be at home when you’re at home. Put away the cellphone and computer. Make yourself present for your loved ones, and don’t feel guilty when you do something you love that’s totally unrelated to the greater effort. Self-improvement can wait. Feed your soul. Rest.

Some of his advice triggers an instant inner eyeroll, but I try to take it to heart, since I’m at such a loss with my own efforts. At the end of the day, take the time to write down one thing you did well. Accept praise. Don’t let doubts or second guesses stick around. Self-talk feels artificial, but it registers somewhere deep inside our brains, so do it anyway.

I’m someone who has a negative, self-critical tape on endless replay at varying volumes in her mind all the time. These are difficult steps to imagine taking. I realize that part of what’s made me feel insignificant over the last several weeks is a lack of outside reinforcement for anything specific I do. I don’t know what I’m good at. It’s impossible for me to ask for praise, but I’m starving for it. Recognition by another human that your inner intentions and outer efforts are registering in the world is absolutely necessary. My friend holds my hands and tells me how much love he always senses pouring out of me toward every person I meet. I cry a little; I’m tearing up again now as I write this.

In the grand scheme of things, the fact that I’m feeling burned out at last after over 14 months of non-stop effort and tension is only surprising in that it took this long. We all go through cycles of intense focus, followed by necessary disengagement. Only the daily grind of steady work is unnatural in this process, and constant effort is unhealthy and untenable.

But if I want to relight the fire that burns inside me for the work that makes me valuable in the world, I have to do exactly what’s most difficult right now. I need to reach out to other people for that moment of human connection. I need to remember what I love about what I do, and let others see that. I need to ask for help seeing the Big Picture. I need to accept praise, even from myself. I need to make plans and dream dreams for what happens after this work is done. I need to keep creating, whether it’s adding just ten words on a writing project, or prepping my garden for planting, or baking cookies.  I need to let small joys accumulate.

Burnout is real and natural, but the solution isn’t smothering the fire. It turns out, the answer is letting others help you feed the flames.

Apr 2, 2013 - Psychology, Social Studies    3 Comments

Autism Acceptance Month: Resources for Autistics and Allies

Capture1Today is World Autism Awareness Day, but autistics and many concerned advocates have done a great job of rebranding it as Autism Acceptance Day/Month. What’s the difference, you may ask? To many neurodiverse people, “awareness” and “acceptance” are as far apart as “tolerance” and “equality.” We don’t want past and current generations of people who are differently wired than our neurotypical family and friends to just subsist on the fringes until a “cure” is found for those not yet diagnosed (or even born).

But many of those neurotypical allies don’t really know where to begin when faced with the complex spectrum of autism-related traits and patterns, and I know they’d be genuinely mortified if they grabbed the wrong end of the facts and proceeded as informed.

So here’s a very short, very subjective list of places you can go to experience some of the range and diversity of autism. If you’ve found something you feel should be on this list, please leave it in comments! I’m always on the lookout for new resources! And if you don’t know where something you’ve come across fits on the range of positive voices, please don’t feel embarrassed to ask–wanting to be informed is the first and most important step for any ally of any kind.

Filmography

The documentary Loving Lampposts, available on instant Netflix in at least the U.S., does an excellent job of approaching its autistic subjects with sensitivity and a willingness to truly hear their experiences. I especially appreciated that it included role models who are non-verbal, showing the brilliant thoughts that speech alone is incapable of capturing for them.

The only “fictional” movie I’ve seen that does a good job with autism is the HBO docudrama Temple Grandin (based on the real life of the autism pioneer), but two TV shows, Parenthood and Alphas, portray their autistic characters in ways that have made me gasp, laugh, and cry with recognition and gratitude. Many people cite the new BBC series Sherlock for the Asperger’s-like characteristics the title character shows, but given his other egomaniacal and insensitive traits, he’s not exactly what I’d call a role model, no matter how brilliant he is.

Bibliography

There’s a wide and diverse array of books out there about autism, but I’m only going to recommend the ones I’ve personally read. A few are fiction, but most are memoirs of one kind or another. It’s amazing to see your own life in print without having written a word. And in general, while autistics have found many ways to manage their symptoms and concurrent problems like food allergies or other medical issues, back away slowly from any book that talks about “preventing” or “curing” autism.

The Speed of Dark by Elizabeth Moon

The Curious Incident of the Dog in the Night-Time by Mark Haddon

Look Me In The Eye: My Life with Asperger’s by John Elder Robison (he’s written two more memoirs since, and I assume they’re just as good as his first)

The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband by David Finch (he too has written successive books that I intend to get to in my Pile o’Shame)

If you only read one book on this list, read Loud Hands: Autistic People, Speaking, an anthology edited by Julia Bascom.

If you only read one author at all, read anything you can get by Dr. Temple Grandin.

Organizography (yes, I’m starting to make up words)

A great alternative to Autism Speaks, which is to be avoided at all costs, is the Autistic Self-Advocacy Network (ASAN). Co-founder Ari Ne’eman works on behalf of the org to bring cases of abuse and discrimination to public attention, as well as to make autistic voices heard in the room for discussions of policy and programs all the way up to the federal level. Their motto is “Nothing About Us, Without Us,” and their website is a great resource for allies as well as autistic folks.

Both national and local branches of Autism Society are also generally positive, though some may be more or less dominated by parents and teachers of autistics, rather than autistics themselves. That’s something to gauge on your own; if you don’t hear from an autistic person within a few meetings or press releases, that may not be a great sign.

Blogography (that one may or may not be a real word by now)

The number of excellent autistic bloggers out there is too numerous for me to do justice to, but you may want to start with a group on Facebook or Twitter like ASAN, Autism Women’s Network, WrongPlanet.net, or The Thinking Person’s Guide to Autism. They boost signal on blog posts and articles from a lot of great authors, not least among them are: Julia Bascom, Steve Silberman, Emily WillinghamIbby Anderson-Grace, Shannon Des Roches Rosa, Estee Klar, and Lydia Brown. I know I’m forgetting a ton of good ones, so start friending/following the ones you like, and they’ll lead you to more and better, I’m certain. That’s how I got started at least.

 

Autism Speaks, I Want To Say…

MamaConnorHairAutism Speaks, I want to say that I won’t be lighting anything up blue in April. I won’t be donating money in any of the cans shaken by earnest coeds in shopping districts. I won’t wear a single piece of puzzle jewelry. I won’t be taking part in your walks, and neither will my son.

It’s too bad, really, Autism Speaks. Because my son and I are autistic, and we make fabulous spokespeople. Like many of our autistic brothers and sisters, we’re hyperlexic, so when we’re asked to speak, we do so way above our grade level. Our autism also gives us a natural enthusiasm, especially when asked to talk about the way the world looks to us, and we can describe clearly and concisely how our perceptions may differ from a neurotypical person’s.

The pink hair is not, sadly, part of my autism, but it is pretty awesome and it shows very well on camera. Too bad you won’t get any pictures of me participating in your orchestrations.

What I want to say to you, though, is very straightforward: I don’t need you to speak for me. I don’t need you to speak for my son.

Moreover, I don’t want you to. I don’t like the messages you send. By only having neurotypical board members, organizers, and spokespeople, you say autistics can’t speak for themselves and defuse the fear and confusion about life with autism.

By choosing a puzzle piece as your symbol, you suggest that autistics are incomplete or a mystery to be solved by someone else, instead of a pattern that is already intact and beautiful as it is.

By devoting a paltry four percent of your annual revenue to “Family Services” (that is, grants to families of autistics who need support for therapy and adaptive technology), you fail to help autistics right here and now.

The 44 percent of your revenue that goes toward research is almost solely dedicated to finding “a cure” for autism, preferably a prenatal test that would alert parents that their beautiful child will be wired differently than they expected. Your idea of a cure would solidify the public’s impression that autism is a life-ending curse.

And don’t even get me started on the fact that your fundraising, advertising, and administrative salaries exceed the percentage of revenue that goes both research and family services.

Instead of urging companies to “light it up blue,” why not ask them to train their employees on the nature of autism, and how best to help autistics who may be overwhelmed by the noise, light, crowds, and textures businesses use to entice neurotypical customers? Why not offer educational programs in the schools that give children the opportunity to see and question an adult autistic who thrives in their work and community? Why not raise money for respite care and better access to early intervention therapies that we know make a huge difference in the future success of autistic children?

The real quest of Autism Acceptance Month must be the quest to understand the beauty, complexity, challenge, and opportunity that autism brings. So keep your change in your pocket, and lace up your walking shoes to take the autistic kids of your family, friends, or neighbors out for a walk in the beautiful April air.

And most of all, let an autistic speak about autism. This may require listening very, very closely, or even reading texts or a chat program, because nonverbal autistics have important things to tell you too. Let them tell you about the flavors and textures and feelings that, while wildly overwhelming sometimes, are also rich and delightful. Let them tell you about what color the world is. Let them perseverate about their favorite things. Let them tell you how much they love you, in whatever way works for them.

That’s how autism really speaks.

Mar 13, 2013 - Physical Ed, Psychology    1 Comment

Darkness, My Old Friend

The house is so quiet, the ticking clock sounds like drumbeats. Darling Husband is blessed with sleep when and where he wants it. The boys are sleeping again after a mumbled request for help getting the blankets resituated. Even the cat is asleep peacefully in the lining of my motorcycle jacket.

But I’m awake. This is the third night in a row I’ve failed to sleep past 3:00 a.m..

I wish it were unusual.

Sleep and I have a complicated relationship. I remember being insomniac as young as nine years old, so there’s something very deeply rooted in me that conflicts with sleep. In terms of basic biology, my fibromyalgia both requires more sleep to prevent pain and provides pain which prevents me from getting more sleep. The less sleep I get, the more I hurt–it’s as simple as that. I’ve also had a sleep study done, and was told I have the worst sleep architecture the tech had ever seen. At various points, I averaged only 20 minutes a night in REM sleep, which is where restoration takes place. It feels like a well that never refills.

I have a feeling my sleep architecture looks something like the top one.

No fewer than two dozen doctors have told me how important “sleep hygiene” is to beating insomnia. I’ve looked at them with flat eyes and nodded grimly. They don’t understand this at all. I have a bedtime routine, mostly built around a few minutes reading a trashy romance. The easy-to-understand story and comforting predictability help me downshift from my brain’s day speed to one where I can finally fall asleep. I need dark, the white noise of a fan, covers (no matter how hot it is, I can’t sleep without the pressure of at least a sheet or afghan), and luck. None of this is uncommon to autistics, as I understand.

I’m faced with the oceanic expanse of unfilled hours more frequently than I’d like. As many before me have joked, the one thing we really need are more hours of the day to consider all the choices we’ve made in our lives. But I’m fairly happy with the choices I’ve made, so it’s memories that play in my head when the world has put its many stimuli to sleep for the night. I fill that space with books and documentaries. Sometimes I write, or stitch, or crochet, or visit with friends who are also awake. I trying to teach myself not to fear I’ll wake up even more fully. Some theories even say a broken night’s sleep is historically A Thing.

At the root of my problem with sleep and the dark, still hours is this: I listen. Constantly. Hypervigilance is real, and very difficult to control. I listen for children’s cries–even those of babies long since grown. I listen for creaks and shudders, and the hollow sound of a door or window sliding open, even though I know they’re firmly locked. I listen for the crackle of fire, or the sudden crash of disaster, always ready to spring into action. I listen for the faint whine of the TV that tells me Connor’s awake in the night too, perpetuating the cycle of insomnia for another generation. I listen for the phone, and count the souls in peril–physical or mental–and ward against a fateful call.

Right now, I can’t sleep because it’s been exactly one year since Connor was actively suicidal. I lived the months of February and March last year constantly waiting, listening, and wondering this: “Could I get to him fast enough to save him?” This weekend will mark the one-year anniversary of his entry into the partial hospitalization program that saved his life. He’s been at the highest behavior level at school for 21 straight school days. Things couldn’t be more different this March than they were last March.

But my body doesn’t know that. My body remembers that, when the last snows come and go, and the ground and air are saturated with moisture and possibility, I must remain alert. I can’t afford to sleep, the memories embedded in my bones say. This is the time you need to watch, listen, wait. Fear. Hope. Pray. I have other memories seated deeply in my body too, ones that make me tense in May more than 20 years after my sexual assault, or the tension that rides me on and off in the summer, when the heat triggers memories of my helpless, hopeless season a few years back. My mind can fold things away, but my bones and flesh remember.

So sleep and I are more sparring partners than friends, but I’m okay with that. I don’t get much solitude in my life, and insomnia certainly provides that in abundance. And maybe the lesson is that it’s not worth fighting with stubbornness and medication and “sleep hygiene.” This is me, and I don’t sleep like normal people. What do I get for it? Memories long buried, the surety that everyone I love is safe for tonight, and the intimate knowledge of the heart-deep chambers of night’s darkness.

Fix the Break

A week or so ago, I had a Brilliant Plan (TM). We’re making arrangements to take the whole family, our two sons included, to Origins this year. I’m beyond excited, but there’s a lot of apprehension there too. It’ll be the boys’ first con, and the first one I’ve been able to attend in several years.

It’ll also be the first con I’ve attended since I’ve known about my autism, and I expect that to be a revelation on a number of different fronts. I’ll be more attentive to the waves of sensory info coming in, and more patient with my preoccupation with the textures and graphic design of the costumes and games I see. I’ll understand why the exhibit hall and the crowded hallways between events take such a toll on my patience and energy. I’ll be more aware of how my autism affects my user experience of new systems and products. And I’ll be more mindful of how the chaos of the con environment uses up my available energy, focus, and physical reserves.

In the past, if I needed a sensory break from the crowds and chaos of large gaming rooms and the overwhelming stimuli of the exhibit hall, I had to schlep all the way back to my hotel room. Once there, the odds of actually returning diminish rapidly. When I finally stop moving so much, the tidal wave of pain and sensation I’ve been holding at bay swamps me, and I realize how much I’m hurting and tired. I can’t even think of going back to the convention center until I’ve had significant rest after that. It hurts to miss valuable time with friends I don’t see the rest of the year, but it hurts more to keep moving, to keep fighting my environment.

This year, I’m trying to do something about this. I’ve submitted proposals to both Origins and Gen Con–the two conventions I’m planning to attend this year–to establish a Sensory Break Room for people who are physically or mentally challenged by the rigorous environment of the con.

Part of this is wholly selfish. I don’t want to have to leave the convention center when (not if) my son needs a sensory break. I don’t want to have to go all the way back to our hotel room, where I know I’ll have fights over whether and when we go back, and why we don’t just stay and play XBox or something just between ourselves. He’ll be anxious and overwhelmed, literally by the amount of fun and multitude of choices available. And I don’t want to fight about whether we spend time at the place we came to spend time at.

The other part is more generous. If people like my son and I could really benefit from a room near the center of action where we can decompress for a few minutes, thereby gaining a few hours more of “on” time, I know we’re not the only ones who could use it. As people become more aware of neurodiversity, true introversion, and other conditions that make con activities challenging, it seems like the next logical step for adaptive services is to offer a nearby room where folks can go to recharge their batteries. Much as there are now nursing rooms available for moms who take their babies to cons, I think sensory break rooms are the future of necessary accessibility options for con attendees.

But what do I mean by a “sensory break room”? Let me do the negative definition before the positive one. It won’t be a hangout for people who just need a seat. It won’t be a quiet place to play quiet games. It won’t be a craft room for game widow(er)s looking for company. It won’t be a nursing or babysitting room.

The room will be screened off, instead of requiring users to open and close a clanky door. The lights will be kept quite low, probably too low to read properly, but there may be some soft, shifting colored lights to focus on. No music or other noise will be permitted, but a small fan or ionizer will run to provide white noise as an auditory buffer. Nobody will bug anyone else, but neither is it a nap room. If someone falls asleep, the monitor will wake them up after five or ten minutes, and each user will be responsible if they accidentally sleep through an event they’re supposed to attend. I’m hoping that the folks most likely to use it will be generous in bringing some adaptive tools to share–weighted blankets, exercise balls, fidgets, and other comforting objects. 

There won’t be a cost to use this space–I would no sooner charge for access to a wheelchair ramp than I would for access to this room–and its primary function will be as a room to decompress. Even just 15 minutes for most people gets them back another 2 to 3 hours of time to participate in con activities. The importance of this downtime cannot be overstated for making it a successful event for a significant number of people.

I’ve had a very good response from folks on Twitter, Facebook, and Google+, and I’m hoping that enough positive pressure on the Origins and Gen Con organizers can help us achieve a pilot test for this resource. I’m trying to figure out whether it’s possible to get enough con-goers to volunteer for a shift monitoring the room while it’s open (probably 10am-6pm Thursday thru Saturday), or whether I should see if I can get the local Autism Societies to get a few folks who would be willing to work a two-hour shift each day in exchange for a four-day badge. Either way, I’m also trying to pull together some of the best game designers/GMs in the industry to run “reward games” for the folks who put in the time to make this resource work well.

Think about that look–you know the one–when you see someone about ready to meltdown in the middle of the dealer hall, or at a game table in a deafening room of other game tables. No, grownups don’t throw temper tantrums the way kids do, but you can see the tightening in their shoulders, their jaws. Their eyes get wide, flash around to scan the room for exits and clocks to tell when they get to escape. They get snippy, impatient, or they shut down entirely: “My character just goes along with everybody else.”

There’s a way to avoid that happening quite so often. A room to decompress in, to take that break from the light and noise and sights and crowds, can stave off those sudden attacks. There are still kinks and details in the plan to work out, but I hope it sounds like a good idea to enough people that we can start to leverage some positive pressure on the con organizers. Whether or not you’re going, please communicate to Origins and Gen Con organizers that you think that this resource is valuable and worth accommodating in the outskirts of the main convention area.

Sometimes you have to break to get put back together. This year, we can provide a safe space for our fellow gamers to do that.

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