Jess Banks schools you.

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.

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.

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.

This’ll be a flash blog post, because I’m flash freaking mad.

I try not to get triggered into red-haze, blinding rage by every awful thing about autism that comes across my Twitter machine. But this was just too much to ignore.

You wish your kids had cancer?! And you’re willing to say that? Not just in the privacy of your own twisted mind, or the quiet of a deep night of self-loathing insomnia, or even to a spouse who might recoil in disgust that you would ever give voice to such a repellent thought, but ON THE COVER OF A GODDAMNED BOOK?!!

Autism is not an illness. It’s not even a disorder–it’s an overabundance of order. Neurodiverse people have difficulty engaging with a world that’s too harsh for their acute senses.

We Are Not Sick.

Autism Is Not A Death Sentence.

But parents like you who hate their autistic children so much, they’d prefer it if they had a devastating disease that requires even more devastating therapies with lifelong effects and increased risks including (most cruelly of all) more cancer, you are a death sentence. Parents like you kill their children because they don’t see the person–they only see the work and therapy and bills and grief. So they push those children under the bathwater and don’t let go. They wrap plastic bags and blankets over the angelic faces of children who are so much more than autistic. Sometimes the parent ends their own lives too, but more often than not, they just shake the Etch-A-Sketch and try to conceive a more “wanted” child who’ll give them the fulfillment of all their dreams.

And your book is going to come up in Google searches. Vulnerable parents, fresh from the shock of diagnosis, will see that title in the results. Some may even buy it from the greedy, vulture-like vanity press that put your despicable words into print. And they will think their child would be better off dead.

You. You did that. To the parent, to the child. You did that.

But you also did one other thing, one you didn’t expect. You made me mad.

See, I’m autistic, and so is my ten-year-old son. We are (and I don’t make such claims lightly) rather amazing. Our memory, our keen senses, our vast imaginations, our complex thought processes, our rapid-fire senses of humor. Our capacity for unconditional love and good work. And we’re friends with other autistics who inspire and motivate and enrich and encourage us every single day.

I haven’t given up a single dream for either of my sons, the autistic or the neurotypical. Why should I? They may achieve those goals in unexpected ways, but they can do absolutely anything in the world.

How do I know? Because I have. I’ve graduated, made lasting friendships, participated in government, found and married my one true love, worked toward justice, invented things, created works of beauty, overcome adversity, and mothered two beautiful boys. I’m autistic, and my life is (sometimes uncomfortably) full of meaningful work and relationships.

Me, Senator Al Franken, Connor, and a fellow healthcare activist

I’ve been doing a lot of work on health care reform here where I live. In fact, I’ve been testifying at the state capitol about the importance of comprehensive mental health coverage as the state designs the new health care exchanges required by the Affordable Care Act (aka Obamacare). City Pages published an outstanding article about the fight to enact the Mental Health Parity law Senator Paul Wellstone fought for from 1990 until his tragic plane crash in 2002. Parity means that medical providers and insurance companies will be required to treat mental health by the same standards as physical health. The article is full of horrible examples of discrimination by insurance companies: a woman with an eating disorder was diagnosed to need an inpatient program by four doctors, and her insurance company, United Behavioral Health, rejected her claim nine times for such reasons as “‘There are also religious groups who fast and that is not psychopathology.'” The woman’s lawyer commented, “‘Imagine telling someone with breast cancer to try harder.'”

Mental health parity looks like it’s finally about to happen. If enacted, it’ll help 114 million Americans, but cost less than 1 percent of the total healthcare expenditure under the ACA. When President Clinton enacted parity for federal employees’ health plans, it actually ended up saving the government money. Parity makes good economic, medical, and human sense.

Someday soon, dear author, your autistic kids will be able to get the help they need without a major fight. The only obstacle to them unlocking their full potential will be you. When they get around you–and they WILL get around you–you’ll be the only one left who needs mental help. Won’t you be grateful for good mental health coverage so you can get over your poisonous, miserable ideas about parenting?

I’m an excellent audience. I listen attentively. I nod agreement, I shake my head in reproof. I gasp, I groan, I giggle. I smile my encouragement throughout, and applaud heartily at the end. If every listener were like me, speech classes wouldn’t be nearly so dreadful.

But I walked out on a sermon at church this Sunday.

The speaker was a very nice man, visiting the church while our pastor was doing a guest stint for another congregation. He worked very hard to be engaging, though I felt like Google and Bartlett’s Familiar Quotations should’ve been given sponsorship ads. But when he started spouting tired nostrums about why it was a moral imperative for everyone to practice forgiveness to be a good person, I couldn’t take it. (I did my very best to look like I was on a mission, rather than just marching out down the main aisle in a huff.)

And just what provoking topic stirred me so strongly I couldn’t sit still?

Forgiveness.

Yeah, you read that right. Forgiveness is a huge hot-button issue for me. I have many of the finer feelings: love for my fellow humans, compassion, empathy, helpfulness. I’d like to think I’m an honorable, honest, and generally decent person.

But forgiveness is vastly overrated.

Much of my resistance comes from my wide contrarian streak. When a person is hurt or abused, modern society tells that person that they can’t heal, can’t be whole, unless they forgive the abuser. There are no allowances made for whether the injury was accidental or intentional. The pressure to forgive begins almost immediately. And nothing irks me more than being told I “can’t do” something.

Forgiveness isn’t even just for social equilibrium or a restorative justice system to function–because heavens know we don’t have either of those. No, people are told they must forgive to purge the poisons of trauma and grief, lest they irreversibly damage the body and soul. Psychologists have published dozens of studies* to demonstrate that forgiveness has an impact on physical and mental health. Whole legions of therapists and motivational speakers have built an industry on wildly cathartic activities to free people from past wrongs and the harm they continue to inflict.

In theory, none of these are bad things. Holding grudges isn’t healthy in any sense of the word, and sometimes a good crying jag or public exorcism of wrongs is the best cure available. I’m certainly not advocating grinding every axe by the saturnine light, or keeping extensive lists with titles like “People I Will Not Warn About The Impending Invasion” (though that can be a satisfying short-term exercise).

But the pressure that society puts on people to forgive and forget wrongs small and great gets internalized, and if you can’t see your way to forgiving the guilty party, then you’re left to wonder what’s wrong with you. A person who can’t forgive is treated like our society currently treats a smoker– as an immature person who indulges a destructive habit out of spiteful pleasure or addiction.

I’d like to see a more nuanced discussion of what’s needed and what’s healthy in the wake of trauma and heartache. In my case, I draw a bright line between “letting go” and “forgiving.” We all let dozens of daily slights pass away after a moment of tooth-grinding and curse-muttering. A realistic person recognizes just how little they can control in their world, least of all their human neighbors’ actions and feelings. When you can’t let go, you’re hooked as securely as a fish on a line. The Buddhists have a word for this: shenpa; the Western Buddhist nun Pema Chodron has a wonderful series of lectures on how to get and stay off that hook (here’s just an excerpt). Ironically, some people don’t feel that criminals and other wrongdoers deserve forgiveness because it “lets them off the hook,” when it’s not uncommon for the injured one to be far more firmly hooked than the injurer.

I’m not saying that “forgiveness” and “absolution” are the same thing, either. Forgiveness doesn’t require you to forego an admission of guilt and responsibility from the person who committed the wrongful act. Taking responsibility for your actions is integral to any mutual healing and restorative process, not to mention every 12-step program out there.

So it’s right and good for me to let the past go, but my forgiveness is a gift. It’s mine to give or not, and I’m not harming anyone–least of all myself–by choosing not to bestow that gift on someone who hasn’t shown the slightest interest in taking responsibility or making amends for the harm that was done to me or my loved ones. I’m not giving myself fibromyalgia or depression or cancer by choosing to see things this way. I’m not preventing my wrongdoers the chance to move on with their lives, and I’m not stuck in the past myself. I’m not waiting for anyone to earn my forgiveness, either–in fact, no one can earn it.

So in the comfort you offer anyone who’s been hurt (including yourself), on whatever scale, don’t tell them that they need to forgive. Nobody needs to forgive to be whole, and we need to learn to be able to make amends and move on without having been forgiven for our own mistakes. Those who are hurt don’t feel control over much of their lives, so don’t insist on forgiveness for anyone’s “good.” The best gifts, both given and received, are the ones that are neither required nor expected, and those in pain need them the most.

* From the most cursory Google search, here’s one from doctors, therapists, religious leaders, and Oprah, for cryin’ out loud.

• “My cousin lives in Turkey, and he says he heard that only foreign fighters are carrying on the conflict in Syria.”
• “One worker told a story of another man who said he heard someone on his assembly line talking about the sores and bone spurs on his feet that never healed because every day was an 18-hour workday.”
• “As a doctor, I’ve talked to parents whose autistic children were so precariously balanced that something as small as the cancellation of a play date threw them into a violent rage that ended with the child menacing the parent with a knife. We need the resources to help these children get the hospital care they need.”

Now, I did a stint in journalism school when I first went to college, and I’ve seen more than my fair share of Law & Order marathons, so I won’t make assumptions that everyone sees the problem that those three quotes have in common. All three are fairly egregious exaggerations of unsubstantiated hearsay, which just won’t fly in a respectable publication or a court of law. It’s easy to imagine how they would be received. As journalism, the writer who submitted them would be laughed out of the newsroom by everyone from the copy editor to the cub reporter working the obituary beat. As testimony, the judge might file the objection herself before the opposing council could even get out of his seat.

Or worse: you could end up like Mike Daisey. He’s a performer who got a lot of attention for a one-man show called “The Agony and The Ecstasy of Steve Jobs,” especially after Jobs’ death. Daisey’s work and the publicity it garnered brought the labor conditions at Apple’s subcontractor factory in Shengzhen, China to light for many people, driving the debate about the real cost of iPads when workers were committing suicide because it was preferable to another day on the Foxconn assembly line. The producers at WBEZ’s radio show This American Life were so impressed by Daisey’s show–the harrowing eyewitness accounts from his own trip to Foxconn, the tragic testimony he collected from abused workers, and the shocking indifference he exposed in Apple’s administrators and consumers–that they adapted the show for an entire hour-long episode.

Except Mike Daisey was lying. Conditions were horrible at Foxconn’s factories, and workers were suffering and dying for our shiny appliances. But he hadn’t seen the things he had said he’d seen; some of the testimony he recounted hearing firsthand was really second- or thirdhand. Ira Glass and the TAL staff (as were countless other journalists and media figures who’d given Daisey a platform and endorsement) were so embarrassed and furious at being duped into telling their audience things that weren’t true that they tracked down Daisey’s interpreter in China and got the real scoop on his visit. They then had Daisey back on the show for Ira to interview in what can only be described as one of the most excruciating half-hours of media ever produced. I highly recommend listening to both the original show and the retraction episode, but be warned: it’s brutal.

The level of outrage and disillusionment that accompanies the exposure of a reporter who doesn’t do due diligence is high, and it should be. We depend on people to get into the places, talk to the people, witness the events that we just can’t as regular, everyday people. Secondhand or thirdhand isn’t good enough, because we know that each degree of separation from the source costs us an unacceptable toll of perspective and authenticity.

But we accept it every day in stories about autistics and the mentally ill.

When’s the last time you read a story about autism that quoted an autistic child or adult? I’ve seen plenty of stories in which experts and parents tell you what their child’s behavior means, but I’ve never seen a feature that reads, “When I’m flapping my hands, it’s a way for me to stimulate my senses so my mind is free to focus on other difficult tasks, like putting words to my ideas so you can understand them.” Most autistics are capable of speaking for themselves, and new technologies allow more non-verbal people to communicate clearly and effectively. In fact, I’m eagerly awaiting the arrival of my copy of the new anthology, Loud Hands: Autistic People, Speaking, and I loved the diversity of autistic voices included in the documentary Loving Lampposts.

The most recent example of this lazy, ignorant, shameful abridgment in the media is a cover story for the USA Today by Liz Szabo. In over 3,000 words, not counting captions for the color pictures and infographics, the article quotes not a single person with a mental illness or disorder. It’s not like there was no one to talk to. According to the National Alliance on Mental Illness (NAMI), approximately 57.7 million American adults experience at least one episode of mental illness a year. And current estimates suggest that 1.5 million people on the autism spectrum live in the US. That’s more than the population of the New Orleans metro area, more than the populations of Alaska and Wyoming combined. More than the number of active duty troops in the US Military as of December 31, 2011.

Foxconn employs 1.3 million workers. We were dismayed and angry that a man who had no direct personal experience of their lives claimed to speak for the voiceless. We called for and received a public immolation of his reputation. But one in four American adults has experience with a mental illness or disorder, and we’re okay with “experts” and surrogates dominating the debate?

Our country has a lot of work to do on issues surrounding mental health. Destigmatization, holistic treatment, restorative therapy for mentally ill criminals, and long-term strategies for integration and care all need our attention desperately. But right now, how about we start by insisting that the affected voices be in the room? Put the subjects on the list of people to talk to for a story, or a study, or a hearing, or a forum. I used to think this was obvious–at least, until this hearing on contraception:

But we wouldn’t take a commission on racism seriously if it only had white people. And we wouldn’t stand for an article about what it’s like to have breast cancer without a single survivor quoted. We value those voices rightly, because their experience is irreplaceable.

We have to hold the media–and ourselves as consumers–to the same standard when it comes to mental illness and disorders like autism. Sometimes, secondhand just isn’t good enough.

********

UPDATE: Within 12 hours of posting this, I had a message in my Facebook inbox from…wait for it…Mike Daisey. I was frankly stunned that my little blog had ended up on his radar, and suspected mechanisms like Google Alerts and Reputation.com, until my boss told me that Mike had been Our Man On The Inside at Amazon for Atlas Games (the company I work for) for quite some time, and had even written content for our Unknown Armies roleplaying game line.

The message was very polite, and included a link to his blog for updates on what he’s been doing since to make reparations and keep his conscience clear. By all means, read it if you’d like to follow up the story–I’m all about getting my sources right. And I hope my original post adequately conveys my intention to mark Daisey’s work as instrumental in opening the public discussion about the labor conditions behind our favorite devices.

Daisey also mentioned a major article in WIRED Magazine about Foxconn that fails to cite a single worker, but hasn’t been held up to the same scrutiny as his work. All of which goes to show that the media still isn’t serious about talking to the subjects and victims of oppression, only about them.

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.

I’ve been working on the campaign for marriage equality here in Minnesota since March, and as I’ve written before, it’s the most fulfilling political, social, and activist project I’ve ever worked on. I’m a total addict to the amazing people and experiences I encounter every single time I put in some time, and I’m going to crash hard on November 7, even if we manage to win. I’m already getting the shakes. Last night, I asked my friend and co-trainer Scott, who works in politics for his day job, for a new campaign–I’m lining up a new dealer once Minnesotans United for All Families skips town.

MN United has built a campaign unlike any other, rejecting the messages and tactics that have failed in 30 states where anti-marriage amendments have gone up for a popular vote. While talk about the rights and benefits that attach to marriage, and how the denial of those rights amounts to separate-but-equal discrimination on par with civil rights fights of the past, are important to many supporters of marriage equality, they aren’t generally persuasive for people who are on the fence about gay marriage. So we’re having personal conversations with voters, using our own life stories, to make it clear that marriage is about love and commitment, no matter the gender of the partners. These stories are powerful, and they change hearts and minds and votes.

Only four days remain until the election, so I’m going to share the core of the conversations I’ve been having with you today. If you’re in one of the four states voting on marriage equality, I hope that this strengthens your resolve if you’re a supporter, and opens your heart to the conversation if you’re still undecided.

Our first walk as Mr. and Mrs. Banks, 5 October 1996

I find this amendment personally hurtful on so many levels. I have the great good fortune to be married to the love of my life, despite the astronomical odds that we would ever find one another on opposite sides of the world. And for the last sixteen years, we’ve had each other in good times and bad. I’ve rejoiced in the affection and the support and the million inside jokes and shorthand references that weave us closer, and I’ve buckled with relief into that tightly knit fabric of partnership in the times of crisis and grief. I think marriage is the best game in town, and I devoutly wish the same celebration and endorsement for every loving, committed couple who lean into the unknown future together.

All of this hinges, though, on one critical fact: my beloved was the opposite gender. When we fell madly in love, we had many obstacles to overcome so we could be together, but the legal right for me to marry him and secure his immigration status so we could start our new life together was not one of them. We obtained a K-1 “fiance” visa that allowed him to enter the country and get on the fast track for a green card by submitting evidence of our marriage. We went through the separate interviews to assure our marriage wasn’t a scam.

But I’m bisexual. There was no guarantee that my soulmate would be a man. And if he weren’t, the last sixteen years–all the love, all the progress, all the family we’ve built–disappear. That one thought blows through my gut like an icy wind and fills me with unbearable sorrow. I cannot imagine the pain and devastation of being told I couldn’t marry and be with my beloved.

And I look at my amazing, difficult, brilliant, gorgeous, perfect sons, and I marvel even more. We didn’t have to submit any applications or pass any interviews before we decided to conceive them, and not once have we ever had to fear that they would be taken away from us. We’re far from perfect parents, but no one has ever questioned whether we’re the best people to raise them. It’s assumed that they’re safe and happy and healthy and loved, and there’s no awkwardness when I introduce their other parent at school events or church functions.

Believe me, all this “traditional”-ness is positively mortifying to a weird, eclectic nonconformist like me. Frankly, it’s embarrassing. We didn’t set out to create a “traditional” family, and we’ve done everything in our power to the least traditional traditional family around. But we are very aware of our privilege, and there’s no reason in the world it should be reserved to our narrow demographic.

Marriage is an important but limited part of how I envision family. I’m a child of divorce, and even as an eight-year-old, I knew that my mother and father weren’t working out. I knew that marriage stood in the way of being our best selves, and I told my mom often as a kid, then a teenager, then an adult, that she made the right call. That divorce didn’t dissolve the ties of family, though–I’m still close with my father’s family, and I kept my birth last name as a second middle name when my stepdad adopted us years later. But I also watched my grandparents’ marriage, which started with my grandma saying, “I’ll marry you so I can get out of the house before I kill my sister. But if it doesn’t work out, you go your way, I’ll go mine, and no hard feelings.” It lasted 62 years.

We teach our sons that families come in all shapes and sizes. Of course, we didn’t have to work too hard to teach them this: they already knew it. They have friends who have a mom and a dad like they do, and friends who only live with their mom or their dad, or travel between their parents’ houses. They know friends who live with extended family, or foster parents, or adoptive families. And they know friends with two dads or two moms. All they care about is that their friends are as loved and secure as they are.

So I’m voting no.

I’m voting no because I treasure my marriage. No other word in our language and society so completely sums up the lifelong commitment and enduring love that I share with my partner, and it hurts to imagine being told that we didn’t qualify for that word by something we couldn’t change or improve. My marriage is strong, and no married gay couple down the street, arguing about bills and chores like we do, makes that less secure.

I’m voting no because I hold my sons in hope and love. I feel that they’re better people because we’ve taught them that every person is worthy of the same dignity, no exceptions. My dream for my boys is to dance at their weddings, and the only thing I care about is that the person they marry loves them as much as I love their father. I’m going to dance, it’s going to be Bad Mom Dancing, and it’s going to live on in infamy on YouTube, to forever embarrass them, like every good mom should.

I’m voting no because my understanding of the world’s faiths teaches me that the most universal truth among humans is to treat one another the way we would want to be treated. Whether it’s the Judeo-Christian Golden Rule, or the Confucian Silver Rule, this is held as a central tenet. We rarely follow the ancient scriptures that prohibit same-sex partners on other subjects; we acknowledge that they’re historical documents, and that society’s values have evolved since they were written. I want my church to have the religious freedom to marry gay and lesbian couples as our faith embraces as equally entitled.

I’m voting no because I’m a historian. I can see that the institution of marriage predates the Bible and that it began as an economic transaction to link families and secure heredity. It was not always a sacrament, and it was not always available to every heterosexual couple. It hasn’t “always been” any particular way. Marriage for love is a damned newfangled idea, relatively speaking. If you married someone not from your hometown, you’re already breaking “traditional” convention, let alone someone of a different church, faith, ethnic group, or race.

I’m voting no because I’m a teacher and a parent, and the health, safety, and wellbeing of every child matters to me. I can’t imagine the horror of waiting to know how the state where they were born is going to vote on whether they and their families are welcome. LGBT youth are so fragile already, under siege in schools and churches and media, and it’s a sacred trust we are given to show them that they can aspire to fully participate in society and experience the range of human love. I have great confidence that other teachers will continue to teach age-appropriate lessons, and that as parents we still have the greatest power to teach our children about morality.

I’m voting no because I’m a patriot. I believe in the founding principles of our country, especially the purpose of our constitution as a document that secures personal freedoms and limits government intrusions. The constitution should never be used to carve out a segment of the population and deprive them of the same liberties as others enjoy. And we certainly shouldn’t be putting rights up for a popular vote. Ideological conservatives have made some of the most persuasive arguments along these lines.

I’m voting no because I’m an optimist, and I believe our society is moving toward a broader, more inclusive understanding of one another. The less we allow race, gender, faith, class, and sexual orientation to cloud our vision of a common humanity, the more we will recognize that we all want the same thing. We’ve got a long way to go on all of those issues, but we can (and should!) work on them simultaneously. I reject the arguments of fear, division, and misunderstanding, and I put my hope in the journey we’re on toward life, liberty, and the pursuit of happiness.

There’s no grey cloud over my head. There’s more color than black in my wardrobe. There are four playlists called “Happy Songs” on my iPod. I laugh a lot. I’m unfailingly friendly and polite with strangers. The boxes on my calendar empty out.

This is what depression looks like.

My hands clench hard, leaving an array of half-moons on the soft skin of my palm. My shoulders ratchet up. My Irish-pale skin blooms with uneven roses. My lips feel tight. I use shorter words, then no words at all.

This is what anxiety looks like.

I plunge my hands into racks of clothes. I can’t get enough of a certain song. I scan poll numbers for the troughs and crests that the patterns show me. I find a way to use specific words in every conversation, words that are stuck like burrs in my mind. I can’t stand cranberries. I close the door, turn off the lights, put on the fan for white noise, and wait for the world’s loudness brightness sharpness to subside. I click my mala beads through my fingers while I talk on the phone.  I remember everything.

This is what Asperger’s Syndrome looks like.

I snuggle and tickle my kids, and the other kids who think I’m the Cool Mom because I read them stories, and get down on the ground to play their games, and giggle at their goofy jokes. I work hard–harder than I should, sometimes–and I hold myself to exacting standards. I watch screwball comedies, costume dramas, and cerebral documentaries (or so NetFlix tells me). I make pretty things and give them all away. I send my energy to those who need warmth, healing, sympathy, celebration. I play with my phone too much. I read every day. I speak out against injustice. I do more than speak. I see characters and scenes in my head, but I can’t hear the dialogue. I love my husband and our millions of inside jokes. I check my blog hits all the time.

I take medicine three times a day, without fail. Some of them keep me heavier than I wish I were, but still I take them. I take my meds even though I feel great–maybe especially when I feel great. I pay attention to my moods. I talk to my doctors; I keep my appointments. I know what the inside of a psych ward looks like. I know it’s better to keep fighting than give up. I know how deep the hole goes. I try to be kind. I live every day in color.

This is what mental health looks like. It looks like everyone else. And it needs to be out in the clear light of day.

This Thursday is National Coming Out Day. It’s difficult these days to remember that being open about whom a person loves comes at a high price. It costs families, friends, housing, jobs, physical harm, psychological health, and even lives to be openly gay, lesbian, bisexual, transgender, or even just questioning.

Almost everyone these days knows someone who fits into one of those categories, and by knowing that person’s identity, you represent–at one point or another–a potential risk, an unknown quantity. That person made a calculation, based in an algebra of emotional connection and human-hearted estimation, scrounged from past experiences, conversations, jokes, off-hand remarks, forwarded emails, Facebook posts, retweets, and a million spoken and unspoken signals. This equation spits out answers ranging from standing in the full light of exposure, to straddling an awkward threshold, to pressing flat against the shadows, barely breathing, praying no one sees through the grey mantle of disguise pulled tight around them.

And, from that equation, they took a risk on you. Every time that risk pays dividends of love, trust, and authenticity, it gets better.

Last year, on this here very blog, I came out as bisexual. It was the Least Eventful Coming Out Ever. In fact, the utterly underwhelming response–all kind and supportive, ye punters!–even contributed for a little while to my neurosis about not “having earned” the identity or label.

But in a discussion with one of the organizers at Minnesotans United for All Families earlier this year, I was surprised to learn that that (completely un)fateful blog post was hardly the first time I’d come out in my life. By the time I made my sexual orientation public, I was practically an old hand at revealing parts of myself I’d previously hidden for fear of rejection, punishment, disappointment, or harm. I’ve had more coming-outs than a 23-year-old debutante.

So here, in no particular order, are pieces of me that have spent time in one closet or another:

–I’m a witch. I know I said a while ago I was going to be more coy about this, as I have done when teaching religious studies, but frankly, you’re not my students (for all my professorial posturing). I studied for two years before I committed myself to this faith, and when I told my parents about my choice, my mom cried a lot. She said she’d known something like this was happening, but she’d hoped I’d fallen in with a “nice Eastern religion.” I knew things were going to be okay when she sent me goofy witch socks next year at Halloween.

What my mom was thinking

What I was thinking

–I’m autistic. As an adult woman, it would be incredibly hard to get an official, clinical diagnosis, and there’s nothing particular in terms of care or resources that a diagnosis would make more available to me. It was my son Connor’s Asperger’s Syndrome diagnosis that unlocked this mystery. The more I read and observed in him, the more I recognized and understood about myself. I’m so much more functional and kind to myself (and him) than I used to be, now that I understand the patterns that govern my thoughts and senses. And it’s precisely because I am NOT what most people picture when they hear the word “autism” that it’s important that I’m out about this.

I can be this kind of autistic.

But I’m also this kind of autistic.

–I’m a pack rat. I blame being a historian. Papers and Christmas cards and books and kids’ drawings aren’t junk–they’re artifacts.

–I’m a rape survivor. I knew my rapist; I was dating him. He raped me twice, once vaginally, once orally. I didn’t even know the second one was rape until the support group therapist named it as such. I told no one for two and a half years. Apparently, coming out is easier in batches, because for my own crazy reasons, I told my parents about that within 24 hours of the Witch Talk.

–I hate Napoleon Dynamite and the game Risk. Don’t judge me.

–I’m the child of an alcoholic. If autism didn’t give me control issues, this sure as hell did. I didn’t have a single drink of alcohol until my wedding night, which came 10 months after my 21st birthday, and 4 months after I came home from a year of study in France. I wanted to be sure my personality was fully formed, and not addictive, before I even went near the stuff. I’ve never been drunk, if only because by the time I started drinking, I was big, Irish, German, and discerning enough to make getting drunk a very expensive proposition.

–I have an invisible disease. I was diagnosed with fibromyalgia in July 1999. It’s hard to know how I got this–debates rage about what causes chronic pain disorders. Most likely, the car accident I had 10 days before my wedding, which caused fairly extensive soft tissue damage to my neck, shoulders, and mid-back, triggered it. When I got to grad school, a doc at the health center put me on a tricyclic antidepressant for severe tension headaches. It effectively masked the developing fibro symptoms, until its lifespan expired and everything came tumbling out. For the practical implications of this on my life, I refer you to the Story of the Spoons.

–I can’t do math. I’m pretty good at arithmetic, even mental figuring, but from algebra forward, I’m hopeless. I’m not sure I’d call it dyscalculia, but I’ve never had it explained so I could understand it. I’m pretty sure I don’t care to try again.

–I spent five days in the psych ward of a hospital in August 2009. When we moved, my efforts to establish continuous care for my fibro and related depression failed utterly, and I had to go off all my meds, all at once. When I did manage to get back on something after an ER visit, it was too little, too late, and I couldn’t pull out of the tailspin on my own. At 5:00 pm on a Thursday, I emerged from our bedroom and told my Darling Husband that I had thought of nothing but killing myself all day long. I asked him to take me to the hospital. They doubled my meds, and I felt like myself in fewer than 72 hours.

–I can’t play video games. They stress me out to the point of panic attacks. And this isn’t just with the new immersive FPSs or rich-environment RPGs. I first noticed this about myself on Super Mario Brothers and Tetris. I’ve managed to pry this open just enough to enjoy the occasional song on Rock Band or round of Hexic, but even then, all my upper body muscles are sore afterward from the tension. Most of the time, it’s no fun at all.

***

So there: I’m out. About a bunch of stuff. I recommend it highly, if only so that the next time someone comes out to you about anything at all, you’ll know the feeling of standing on that precipice, waiting to step off. You’ll know how important it is to put your arms out and catch.