Tagged with " Asperger’s"
Sep 9, 2015 - AV Club, Social Studies    3 Comments

Expanding the Universe

I saw Star Wars for the first time when I was two years old. I perched on a stack of phonebooks in the front seat of our Ford pickup, and the drive-in theater screen enveloped my whole world. I don’t remember what must have been the poor, crackly quality of the sound—the expansive visual feast polished the music and dialogue to match.

I fell instantly, deeply in love.

Nerdy kidStar Wars was all I wanted to talk, or even think, about. As my mom changed my newborn sister’s diapers, I fed her whole scenes of dialogue—memorized on contact from that first viewing—so I could have an acting partner. I roamed over our backyard swing set with tiny fists full of action figures, so many I had to stick some in my mouth to climb the slide ladder. Forgetting to take them out again resulted in the premature decapitation of several first-run figures as I bit down when my feet hit the ground. I had Star Wars bedding, Star Wars towels, Star Wars records, and one sad misfire of a Star Trek pajama set from a well-meaning grandparent.

I played Star Wars with my preschool classmates and neighborhood friends—but only the boys. The other girls weren’t interested, and I quickly learned that inviting them into our lightsaber battles and X-Wing flights earned me their scorn. So many of my gendered ideas about who I preferred to be friends with came directly from this experience. Boys shared my passions, and didn’t expect me to navigate social minefields. We came, we saw, we blew up the Death Star. Simple.

I wouldn’t have a significant group of female friends until I was in college.

And as the only girl, of course, I got to be Princess Leia. As an undiagnosed Asperger’s Syndrome kid, I must grudgingly admit that I was probably more like C3P0—pedantic, oblivious, anxious, always interjecting irrelevant, self-centered observations. But Leia was everything I wanted to be—dashing, brave, imperious, powerful, efficient, and beautiful. Her role let me direct the play scenes in her bossy, self-assured voice, and I used the authority she lent me to muscle my way into even more action, assigning her piloting skills and a lightsaber before the Expanded Universe would.

The only time Star Wars got complicated was when more than one girl wanted to join in. As my sister grew up and I dragooned her into play, the absence of another female role led me to assign her to the only non-gendered main part I could find: R2D2. Artoo was the perfect little-sibling role—non-verbal, swept up in the action, useful as a tool but without the need for much consideration. In our thirties, I would joke about all this at a family dinner, only for my sister to narrow her eyes and growl with long-held bitterness, “I WAS ALWAYS THE DROID.”

I was shocked by that reservoir of resentment, but thinking about it more, what else were the options for two girls in the Star Wars cinematic setting of the 1970s and ‘80s? Women weren’t visible on the command levels of Empire starships; their numbers were infinitesimally better in the Rebel bases. Stormtroopers and aliens were ungenendered to the untrained eye. So what’s left? Those two goth chicks with the water pipe in Mos Eisley Cantina? Mon Mothma or the dancing slave Oola in Return of the Jedi? Sy Snootles?

Shows like Star Wars Rebels, books like Chuck Wendig’s Aftermath, and all the trailers for Episode VII: The Force Awakens represent a hyperspace jump forward in representation for kids of all kinds. Children of color get action heroes to play; so do girls. Even queer kids get heroes that just five years ago would’ve been unimaginable in a mainstream media juggernaut like the new Star Wars universe.

I have no patience for alleged fans who can’t see how this is a good thing. Their pristine fandom was never fair or representative of all the people who loved its stories; we shoehorned our way into the drama through sheer force of childhood creativity.

The simple fact of the matter is this: The future we can imagine grows from the present we live in. As I stood at the bus stop Tuesday for the first day of school, I looked at the crowd of 15 kids, all neighbors and friends of my sons in our apartment complex. It’s as varied as it gets: white, black, Latinx, Somali, Japanese, boys, girls, genderqueer, disabled, neurodiverse. The more of them who see reflections of themselves in visions of the future, the more of them will have the confidence to follow their dreams to create the real future we’ll live into. That world can’t help but be better for the diversity of lives it values.

10 Things My 30s Taught Me

On December 28, I turned 40. This came as no surprise, even to one as math-impaired as me.

It’s virtually impossible to throw a birthday party on my birthday, since everyone is exhausted from Christmas and saving up energy for a big New Year’s Eve blowout (if they’re even in town). There’s even an Old English word for it: symbel-werig. It means “feast-weary,” and that’s what everyone is on my birthday.

The worst it ever got was my 18th birthday. My parents had dinner theater tickets, and my brother was at his friend’s house (after his birthday, the day before mine. No, really.). My sister and I were home alone. She made a Pyrex bowl of raspberry Jell-O and stuck a taper candle in it. We watched Schindler’s List. Whoop-de-doo.

For the big one this year, though, I decided that nothing said “me at 40” like riding rollercoasters. Thanks to Nickelodeon Universe, the indoor theme park in the middle of the Mall of America, it’s actually possible to do this in a Minnesota winter. Also, yay for half-price unlimited ride wristbands from 5-10pm. There was the entertaining possibility that I’d get a mall security escort because I’d been a marshal at the #BlackLivesMatterMOA protest two weeks earlier. I planned to lure him onto rides, in case I felt like chanting anti-oppression slogans on the loop-de-loops. Alas, no joy.

Rolling over the odometer also made me think about what can happen in just one decade of living. I don’t feel older, or even different, just more like the person 30-year-old me hoped to be eventually. Still, I learned a lot of lessons in the last 10 years, so here’s the top 10 lessons I learned in my 30s.

1) Having a second child is nothing like having the first. I had my first son when I was 28, and my second one when I was 32. Instead of throwing up 20 hours a day for 5.5 months, I threw up 24 hours a day for 7.5 months in my second pregnancy. My labor couldn’t have been more different, too. And you needn’t look any further than this blog for how different the boys are from one another. Motherhood: what a weird, wonderful ride.

2) The key to my kid is the key to myself. When I was a kid, my parents and teachers told me I was “socially backward” because I was intellectually advanced. Slamming doors and balloons popping gave me migraines. I preferred the company of adults. And I recognized a lot of these traits in my older son; we joked that he inherited those traits. In fact, what we both were was autistic. Learning that unlocked memories and mysteries that plagued me my whole life, and understanding those helped me translate the world for my kid. We’re all so much better for knowing ourselves.

3) Intersectionality is everything. I’ve felt this way forever, but didn’t know there was a word for it until I read a Flavia Dzodan blog post that introduced me to the term, coined by UCLA prof Kimberlé Crenshaw. I also didn’t realize it was such a controversial idea until I started advocating it. How is this difficult for people to understand? We are all so many different people, and all of our selves are bound together when it comes to liberation. How can you be a feminist who excludes trans women? How can you be anti-racism and simultaneously suppress the contributions of women? How can you demand an end to oppression but hold planning meetings that are inaccessible to disabled people? In Flavia’s words, “My activism will be intersectional or it will be shit.”

4) Don’t move without a safety net. I learned this one the hard way. In Minnesota, you have to be a resident before you can apply for state health insurance. We had paperwork ready to go the day we moved, but we encountered a four-month wait. We’d saved money for an appointment to get me set up with bridge coverage for my fibro and depression. What I didn’t do was research doctors—the one I went to refused to continue the treatment plan I’d had for over a decade. The decompensation that happened without my prescriptions resulted in a summer lost to pain and despair, ultimately landing me in the hospital. Lesson learned? You cannot overplan for your medical care when moving–your life literally depends on it.

5) Family is what you make it. I grew up so close to my family that I refused to even consider moving to New Zealand to be with my Darling Husband, because I couldn’t imagine going so long between visits with my parents and siblings. But after I called out my family about 4 years ago for treating my autistic son like crap and undermining our parenting, everything changed. My brother and sister still won’t talk to me for hurting my mom, even though she and I are fine now. Thankfully, we’ve built a family of friends, old and young, near and far, who more than make up for the love lost. All that’s left to mourn is the continuity.

6) Sharing knowledge is more than the letters after your name. My grad school department kicked me out in 2005 because my area of study didn’t match their idea of subjects that build a “world-class history program.” Despite that, I have 15 years of teaching experience, and knowledge that I use everyday—with my kids, with other kids, with other adults, and in my organizing. Teaching is my vocation, plainly put. Even if the flood of post-recession Ph.D.s makes it unlikely I’ll get a college job again, I’m always looking for ways to share what I know in engaging ways.

7) Caucusing is hazardous to your health. Until we moved to Minnesota, I’d always lived in states with primary elections, so I was extremely excited to attend my first caucus on February 2, 2012. It was weird and idiosyncratic and strangely wonderful; I was too hyped about democracy to sleep until midnight. At about 1:00 AM, I woke with abdominal pain. By 5:00 AM, it was worse than labor, and Darling Husband took me to the ER. I had acute pancreatitis, caused by a gallstone. I spent a week in the hospital, and they surgically removed a bag of rocks from my gut. I now view caucuses as highly suspicious and potentially life-threatening.

8) I am committed with my whole heart and soul to equity. This isn’t about rights, or even history. It’s about empathy. If anyone’s potential is oppressed for who they are, then my potential is also less. I see the beautiful humanity in everyone, and want for them the joys I’ve found and the opportunity to be all of themselves. And yes, I’m willing to block traffic, invade public spaces, and commit civil disobedience to make this happen. I consider it a sacred duty.

9) Together, we win. I’ve never been very competitive, and I always plan for failure so that, as Lloyd Dobbler wisely advised, “…everything’s kind of a pleasant surprise.” But with the campaign for marriage equality, and against Voter ID, and for a new anti-bullying bill and a higher minimum wage, guess what I discovered? I like to win. I like it almost as much as the conversations and organizing it takes to come out victorious. These efforts and the folks I’ve met in them evaporated any cynicism I had about the potential of people power. I highly recommend it to everyone.

10) It’s never too late. I didn’t intend to really go balls-out for the last year of my 30s, but I accidentally did. I learned and performed burlesque dance, even in this imperfect body. I got two big tattoos, the first I’ve ever had. I went to a national convention for community organizers. I shut down highways, corporate offices, and the largest mall in America. I made my kid’s middle school change their negative, reactive response to common autistic behaviors, and re-centered them on positive reinforcement that nourishes all children’s education. All this with my physical and mental limitations. It’s never too late to do important things, and if you forget that, just ask me for a reminder.

Meltdown in the frozen north

Our rental managers at Como Park Apartments stepped up to offer day-long activities for the apartment complex’s kids when school closed this week. This came as very welcome news, as our car remained resolutely opposed to starting in the sub-zero temperatures. Big-hearted community efforts like this keep us here when, to be honest, we could use a little more room—there just isn’t anywhere else with neighbors and management who give each other such close-knit support.

Monday was grand, and the DH and I got loads of work done while the boys played the day away at the party room. They came back with tales of new friends and pizza-sauce stains on their faces. Tuesday seemed to be headed the same way, but at 2, my cell phone rang. “I need you to come down,” our neighbor said. “Connor’s having a meltdown.”

When we got there, he was sitting in a corner with two of the staff who were talking calmly despite his sobbing. I helped him up and hugged him tight, despite his wet swim clothes, then convinced him to come sit with me so we could talk more easily. I held him until his breathing and tears slowed, then we started to dissect the series of events that left him so upset. A scare from some horseplay in the pool, combined with embarrassment over his friends seeing him cry, kicked it off. But it was the clever liar of depression that told him everyone hated him, that he was a waste of space, and he should just die.

While it was good that the DH and I were home so we could reach him quickly, the neighbors and staff had done everything exactly right. That’s far from guaranteed when it comes to folks who don’t deal with autistic or mentally ill kids every day, and I wanted to take a moment to write about what they did and how it might have made the difference between a bumpy patch and a potential disaster.

First, the adults recognized that he was starting to meltdown. In my experience, this looks different from a regular episode of angry or sad crying; instead of falling apart, getting limp, or long wailing, a kid in meltdown usually winds tighter, with shallower breathing and critical self-talk in an escalating pattern. They may lash out at people who try to get close, or even throw things, but they’re generally not interested in hurting anyone but themselves. The best case scenario is to derail the meltdown, and distraction is the best way to do it. Give the kid something to play with, like a fidget or craft—one friend kept knitting in her bag when she worked with a child who found the motion soothing. Strike up a conversation on a common interest, ask questions. If they’ll accept a hug or something heavy for some comforting pressure, that helps too, but it’s rarely the right move to force physical contact.

If you can’t de-escalate, safety is critical. Thoughts that hurt as much as the ones that bubble up in meltdown make a person want to flee, and they may bolt for the door, or try to hurt themselves, or both. Connor had been in the swimming pool, and tried to drown himself when his self-loathing got so heavy so fast. Once they had him out of the water, he wound his scarf around his neck; they got it away from him. He ran to the far end of the balcony, and they sat with him. Location, tools, and support—they had the bases covered.

Third, they stayed calm. Kids in meltdown are loud, and sometimes they’re saying things you don’t want to hear: dark things, angry things, scary things. The temptation to talk over them, to force reason atop their disorder until both of you are screaming, is powerful. But it doesn’t help. Even your silent presence, steady and resolute if non-communicative, is better than pushing them toward a brink they might not otherwise approach. Mostly, they just need to spill. Don’t silence, don’t argue—the storm will blow itself out if it’s not being fed.

We’re grateful for many things on the good days, but sometimes a bad day turns up a cause for thanks too. I can’t say enough good things about the compassion and quick-thinking our neighbors showed in a situation that’s hard to manage even with years of experience. The same factors, managed with indifference or inattention, could have yielded tragedy I can’t bear to think about. Every parent knows that sending a kid out into the world on their own is to live with your heart beating outside your own chest. Having the right understanding of a meltdown situation can equip you to handle other people’s hearts and children with care.

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.

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.

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.

Feb 28, 2013 - Psychology, Social Studies    8 Comments

Lock And Key

Friday is the Autistic Day of Mourning, a day to honor the autistic people who have lost their lives to the desperate or careless actions of parents and guardians, or to the crushing weight of the sensory world that seems inescapable by any other means but death.

As long as myths and misinformation are spread about what life on the autism spectrum is like, there will continue to be caretakers who feel that autistics are less than human, and autistics who feel that every door in the world is shut and locked against them. This is my story of those doors and locks, and the keys that turn up in the most unexpected of places.

I wrote this for an event around Mothers’ Day, called Listen To Your Mother. (It may have been too weird for them.) But I really wanted to share these words I’ve crafted, and the occasion to commemorate those who never found their keys seemed fitting. I hope it unlocks something for you, too.

________

Parenthood is all doors and windows, keys and locks. Change blows them open and slams them shut. Heat and grief swell the frames so they stick stubbornly. Time and anger jam the pins and squeak the hinges. Then suddenly, a word, a fall, a breakthrough, and we stumble over the threshold.

My son’s autism diagnosis was the key to a lock I didn’t even know existed. Kindergarten was rough, rougher than it needed to be. Connor talked as fast as he thought, ideas rushing out so fast his little mouth garbled and stammered over the vocabulary of a high schooler. He knew the names and origins of every superhero and Star Wars character, but related them with so much detail, kids his age gave up and walked away. He struggled to function in the constant noise and color of the classroom, where he could never settle and instead slingshotted among activities and classmates.

The other kindergartners didn’t understand, and responded with cruelty beyond comprehension. Five-year-olds on the bus home at half-day told him they would beat him like a piñata until he broke open. They said they would come into his room and set his bed on fire. They hit him in the face with ice balls until he needed stitches. And I cried as I scrubbed the blood out of his little winter coat, as I held him in the night after dreams that woke him screaming. As I filed the papers to transfer him to somewhere safer.

We got called to a meeting within the first month at his new school. “We’ve noticed some things we’d like to talk to you about,” the counselor said. We feared a repeat of the last school’s message: “Your son is a discipline problem. Fix that.” But in that room with his teacher and a staff we barely knew, they slid a list across the table to us that told the story of our son.

My husband and I laughed. Out loud. It startled the school folks to see parents erupt in gales of hilarity and recognition at an inventory of symptoms. But there it was, clear as day on that paper: every strange, wonderful, frustrating, inexplicable thing that our son did. “It’s okay,” we tried to reassure them. “This is the Book of Connor, the pattern we couldn’t figure out. Until now, we thought it was crap parenting.”

It has a name, they told us: Asperger’s Syndrome. “How wonderful,” we replied. “If it has a name, it’s a language we can learn.” We shook their hands, agreed to meet again soon to talk about how to help him. We thanked them, over and over. “Thank you for giving us the key to unlock our son.” I went to the library, checked out armloads of books, and built a fortress around myself, so I could read us all out of the dark.

But the key we had fit another lock, too. It fit a lock in me, a lock I didn’t know I had. His patterns were my patterns, or had been as a child before I learned to hide or work around them. I saw the world in stories too, and had visions clearer than eyesight from the books where I went to hide. I fixated on things without even trying or wanting to. And when it was too much, only dark and quiet and heavy blankets and the rushing, patternless sound of a fan could steady me on the tightrope again.

His lock, my lock, they’re the same. My son is autistic. I am autistic. We are both autistic together. We share this key, and we’re unlocking doors I never dreamed I would pass down to my child.

Grownups say they wish they knew then what they know now. They have no idea.

My son’s lock is my lock. His key is my key. Every door it opens, it opens for him and me. And I walk that terrible, glorious road of discovery with him again like it’s the first time for us both.

Dec 7, 2012 - Psychology, Social Studies    3 Comments

The Gifts That Keep On Giving

Almost every good and wonderful thing about the winter holidays is a sensory delight. The smells of cold snow and freshly cut pine and butter-rich cookies tingle in our noses. Pipe organs and French horns and jingly bells and heavenly choirs and crinkly paper delight our ears with musical sounds rarely used in the rest of the year. Velvety and satiny fabrics combine with delightfully scratchy sweaters and fuzzy hats in our special party clothes. We write ourselves dietary hall passes for the dozens of special, luscious holiday foods. And the lights…oh, the lights! Who doesn’t gasp and crane at the sight of an elaborately decorated building or brilliantly lit tree?

Now imagine all that cranked up to 11. Welcome to the holidays on autism.

Sounds amazing, right? But for autistics and their families, the holidays can be overwhelming and stressful. So many folks struggle with money and family drama and expectations about all things merry and bright, and with schedules and nerves and input jacked up on Kringle Fever. These things stress out the neurodiverse too–and they often have difficulty expressing what’s too much, especially if it feels like that’ll disappoint their loved ones. Naps, hugs (physical or otherwise), routines all go a long way to mitigate these stresses, and though you may feel like a Grinch insisting on bedtimes and dietary restrictions, you’ll be grateful later when you and your family have more spoons left over for fun.

All this is in response to a blog post I read over on Autism Daddy today (thanks to Joshua for the link!). He lamented his inability to participate in a common source of small talk among parents this time of year–what their kids want for Christmas. Every parent dreams of giving the perfect gift that makes their child light up brighter than starlight, but on autistics, that looks a bit different.

Still, you can give gifts that’ll make their lives easier and more enjoyable all year long. And I urge you all to resist the urge to jump to the conclusion that gifts for special needs kids have nothing in common with, or aren’t “as fun” as, the gifts neurotypical kids want. After all, autistics are “more human than human,” as I heard Paul Collins say on Speaking of Faith years ago. And the things that feel good to them often feel good to (or solve problems for) neurotypical folks too.

I don’t know a single kid who doesn’t love the hell out of jumping on a trampoline. If you give a kid a mini-tramp (with a handle and helmet!) that fits in their bedroom, or passes for an hour at the hangar-sized trampoline parks popping up in industrial parks, you would get a medal for Best Adult EVER from children everywhere.

And who doesn’t wish they had a chair that closes up like a clam some days? In today’s open-plan, no-doors work environment, I think these may be the Next Big Thing at the very best chair stores.

And this is just the beginning. There are loads of adaptive technologies which are practical solutions to everyday problems, and you’d be the hero for putting it under the tree. For example, kids are asked to write on whiteboards at school every day, but if you’re a lefty, you spend half your time trying not to drag your arm through what you just wrote and have to start all over again when you finish each line. This cool LCD lightboard eliminates that problem! And tags in the back collar of shirts and underwear drive everyone nuts, not just autistics, so be a hero and give a box of tagless clothes that can be worn under anything.

There’s an extensive list of assistive and adaptive technologies (both high- and low-tech) at the Research Autism website, but many of these things aren’t only available to therapists or educators anymore. Online speciality retailers like AutismShop.com and Autism-Products.com sell everything from squeeze machines to weighted blankets to awesome fidget toys (which make excellent stocking stuffers). And a lot of the best gifts for autistics are available right in your local Walmart or Target–exercise balls, tagless shirts and underwear, blankets with lovely silky binding and nifty textures, and glasses with clear, funky-colored lenses are all fantastic fun gifts for every kid.

(Important Note: You NEVER want to be the person who gives the Toys That Make The Noise. This is exponentially more the case for families with neurodiverse kids. They will hate you forever.)

It gets tiring being the educator-in-chief, and I definitely have days when I don’t want to explain autism and how the world feels through that lens one more time. But instead of feeling left out because you aren’t having the same experience as other neurotypical parents and children, it’s more fun to focus on what makes us all feel good. That’s a wonderful gift to give and be given, any time of year.

 

Defiance and Expectations

This post is going to be fast and messy, but it’s been a big week, and I feel like I need to get this out there for the people in my life who get news from this blog or care about the topic at hand.

The school year started for the boys on September 4, and it’s been a rocky start. Connor, our 10-year-old, liked his teacher, and was overjoyed to be back with his friends, but every day it’s been excruciatingly difficult to get him out the door, and now Griffin is putting up the same fight because he’s taking the cue from his brother that School Is To Be Avoided.

Connor’s still fenced in by extreme anxiety when it comes to math (despite his extraordinary abilities in the subject–at least in my case, the anxiety came from not being able to do it). We’ve established psychiatric care and a great therapist, but he hasn’t got into the real swing of things with them yet, with regular appointments and close monitoring. And while the partial hospitalization program in which he participated last spring has removed the immediate threat of suicide, he’s still emotionally volatile, though to a less extreme degree and in fewer instances than he was before we found a combination of medications that work well for him.

Through all this, we’ve always been able to answer quickly and honestly that Connor is not a danger to anyone but himself, except in the instance that a concerned adult might try to put him/herself in his way when he’s in full, physical meltdown mode. This week, that changed. For reasons we still don’t fully understand, he attacked one of his good friends in class, at the end of a short, incredibly fast series of misunderstandings, misinterpretations, frustrations, and other perfect-storm-like colliding factors. He put her in a chokehold, refused to let go, then flung her down to the floor, and bolted from the room.

He was immediately swamped with remorse, and he doesn’t fully remember the instance, a good indication that his emotions had completely derailed any kind of reason (from a previous post, the elephant was in full charge, and probably lost the rider entirely for a time). And as parents, the news that your child hurt and frightened another child is so close to the horror and anger and grief of your child being the object of such an incident. We all took word of his 3-day suspension without a word of protest.

But the school social worker indicated quite plainly that, while Connor has a safety plan in place to prevent meltdowns or self-harm, he had crossed beyond what they can reasonably be expected to accommodate. She told us that she could schedule a tour of the dedicated special education school in the district for later this week. We acquiesced, but I found myself immediately digging mental trenches for a long, difficult fight.

I had very clear expectations of what a move to this school would mean for my son. I expected the crowded, chaotic special ed classrooms I’ve seen in the schools I’ve attended and worked for. I expected lots of much more severely disabled or troubled kids, grouped together by age rather than ability level, each working with a teacher on everything from just holding a pencil to lessons well below their age level in difficulty. I expected to smell urine, to hear screams and overloud sounds. I expected to find a place that would be safety first, education a distant second, and the potential to crush my son’s soul. I expected to be told he would have to stay there for the rest of his education.

With thanks to the Saint Paul Public Schools and all the universal forces that watch over us, what we saw today at the RiverEast School couldn’t have been more different than what I expected to see. They’ve just expanded into more space, and the hallway with the fifth- and sixth-grade classrooms is open and peaceful. The classrooms had only three to five students in them; the class maximum is eight. They were uncluttered, functional, low-stimulation spaces, but brightly lit and well-equipped. Each room has a teacher, a paraprofessional, and a mental health specialist in them at all times. The kids were attentive to the lesson being taught at the front of the room, and nobody was telling them to stop moving in their own idiosyncratic rhythms of calming and self-stimulation.

I asked how they handled meds and meltdowns, and was satisfied with the answers. I asked if they offered gifted services. The program coordinator said no, but went on to explain that if Connor showed himself to be capable of working on sixth-grade math, they’d just move him up to the sixth-grade classroom for that subject, an accommodation that his regular school has never offered. She informed us that they use the same curricula as the rest of the district, which means that as they help him learn to work through his fears and anxieties about math, they’ll be helping him use the same curriculum his peers are using back at his regular school, so the transition back would be minimally disruptive. The reading curriculum is already determined by skill level, so he can work as far ahead as he is able.

Additionally, group and recreational therapy are a part of the everyday schedule, and their curriculum is responsive to the needs of the kids, so if there’s a particular issue that keeps coming up, they can spend some time working on that specific skill or emotion. And finally, the goal is to mainstream the kids back to their regular school as quickly as possible after reaching a stable, healthy, consistent level of self-management. This isn’t a warehouse for defective kids.

So we’re going to go along with this. I’m still feeling enormous guilt for not just taking on the task of homeschooling or any of the other, more parent-centered options. Heavens know I’m equipped to teach him, but our financial needs just don’t allow, and neither, frankly, do my own mental health needs. But of all the possible solutions to Connor’s emotional, intellectual, and physical needs, this one surprised me by being a real, humane, supportive option.

This isn’t the end of this story, by a long shot, but that’s where we are right now. Parents are never sure they’re doing the right thing by their kid; with special needs kids, that’s doubly so. But we can’t just stand still and wait for things to get better. We have to keep moving, and for now, this is the best direction we can find.

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