Tagged with " autism"
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.

Feb 21, 2013 - Psychology    10 Comments

Not Worth The Ink

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.

ConnorJessSafeSchoolsSee, 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.

ConnorJessAlFranken

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?

Secondhand Smoke Signals

  • “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.

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.

 

Sep 21, 2012 - Social Studies    9 Comments

How Not to Be a Fan

I’ve been open about parts of my identity on this blog that I haven’t felt comfortable “coming out” about almost anywhere else in my life, certainly not all at the same time. And everyone’s been so wonderfully welcoming and encouraging–you’re only making my general lack of brain filter worse! But what I’m about to admit may bring down the flaming hordes of trolls upon me in force.

I’m not sure how to say this, so I’ll just come right out with it (like taking off a band-aid, right?)…

I don’t get fandom. I utterly fail to understand it, on both individual and sociological levels. I am a Bad Fan.

What do I mean by “fandom”? I’m talking about that state of being in which a person enjoys spending time thinking, talking, reading, gathering, and making things about a particular piece of intellectual property, beyond just the time spent engaging with that medium. Those properties might include books, movies, music, sports, collectors’ items, games (video and otherwise), crafts, hobbies, or pastimes.

I truly believe in the broadest, most inclusive definition of ideas such as “fan” and “geek,” and I think the cultural behaviors that characterize traditional “geek culture” appear in a lot more “non-geeky” domains than any of those enthusiasts would expect to find. I also don’t judge among the various sources or expressions of fandom–I’m an equalist in this, as in just about everything else. Don’t try to tell me someone’s doing it wrong, or that something doesn’t “really count.” That just doesn’t hold water with me.

Of course, this is not to say I don’t enjoy and get enthusiastic about things that give me intellectual, creative, or aesthetic pleasure. I clearly do–I’ve enthused about books and music and movies and games and a dozen other things, sometimes with the fervor of a revival-tent preacher. But there’s an uncloseable distance between where I am and the distant shore of fandom.

I love what these ladies created. I even know some of them. And I’d proudly wear one of these costumes. But I can’t imagine ever making one myself.

I am fundamentally boggled by fan behaviors. I don’t understand re-watching or re-reading for the purpose of picking apart, or putting together, or harvesting quotes, or answering questions. I’ve never felt the urge to search or contribute to a wiki, beyond the most basic of research needs. I probably wouldn’t have the patience to wait for hours on end for the chance to see someone I admire. I can’t imagine following a band, performer, author, or artist from tour date to tour date. If I have the occasion to meet one of the people or groups I truly enjoy, I get a little fluttery but I’m conversationally functional, and I’m interested in them as people, not as characters or icons. I love dressing up for the sake of dressing up, but I could never conscience spending the dozens of hours and hundreds (if not thousands!) of dollars it takes to make a quality cosplay costume. Even if I could, there’s no one person I identify with so strongly for whom I’d be willing to pass myself off as a decent representation (this also has a lot to do with the absence of plus-size role archetypes, and my unwillingness to be a “fat” so-and-so).

Like this, but much, much simpler

All of this makes me feel like I’m carrying a shameful secret when someone hails me as a geek. A big circle of the geeky Venn diagram overlaps with the fan circle, and geeks are often graded on their proofs of fan-level devotion. Like any outsider, I have ways of “passing.” I have an excellent memory, which helps, but nothing like my Darling Husband’s capacity for encyclopedic knowledge available for immediate recall. And, more importantly, I empathize and enthuse well. If you’re excited about something you’re sharing, I can be excited for you and with you, and for most people, that’s all the engagement they’re really looking for when they share their fandom. But I also use my abilities to divert conversation from minutiae I know/care nothing for, and when that fails, my considerable skill at turning into a mirror.

Occasionally, this also makes me a Bad Friend. People hear that Jim Butcher introduced me to the Darling Husband, and they immediately launch into deep machinations within the Dresden universe, leaving me far behind. I’ve played some of the games my friends have written or designed, but there are many more I’ve never had the pleasure of enjoying–hell, I haven’t even played Marvel Heroic Roleplaying yet. Many more of these paradoxes litter the landscape of my relationships, and they don’t mean a thing for my dedication to those loved ones. When they need me or something I can do to brighten their day or lighten their load, I am all in. But they’ll have to settle for a good friend, because I can’t be a good fan.

And this must also mean I’m a Bad Autistic. Aren’t all autistics supposed to perseverate, or focus to an uncommon extent on a very specific thing, to the exclusion of everything else? I certainly did so to a greater extent as a kid–I had books and books about the First Ladies and American History, and my very own Presidents of the United States trashcan. But there was never a world I fell into that I couldn’t fall right back out of when something else grabbed my interest. And I always preferred to make up my own stories and characters in my favorite settings, rather than retread the same classics over and over.

I’m not waiting for that evangelical moment, when I find something that “finally” turns me into a full-fledged fan. I don’t think it’s going to happen. If it hasn’t already, with the abundance of amazing media to which I’ve been exposed in my life, it seems unlikely that something so radically new will come along to change that. And most of the time, I’m not even looking for that experience. But I do steam up the window glass sometimes, peering in at all the people who seem to be getting so much more fulfillment from the things I merely enjoy. As I used to (and sometimes still) feel about the LGBT community, I’m a strong, vociferous ally and advocate to fandom, but I often feel I’m missing some extra dimension in life because of these limits to my senses, boundaries, or imagination.

So here I sit, on this awkward fence. I speak the language of fans, and I understand and appreciate their culture, but I can never fully participate. I’m far from a “fan widow”–I don’t reject or feel left behind by the enthusiasms of my friends and family. But I can’t understand prioritizing those things above more basic obligations and engagements. I can’t even really explain what I mean, and I’m worried this sounds condescending or judgmental. (If I have come off this way, please accept my apology and my vow that I intend neither of these things.)

I’m not sure what this coming-out story accomplishes, not the way I have with the others I’ve told. I still love the things I love, but I love them differently than so many of the other people in my life. Mostly, I hope this just explains why I never seem to get particularly flustered or anxious when everyone around me is freaking out about The Wait, or The Trailer, or The Leaked Detail, or The Brush With Fame. And I hope it doesn’t make anyone more hesitant to share their enthusiasm with me. Please know that it finds a safe, welcoming harbor with me, as do all the other pieces of you. Because what I’m really a fan of is people, in all their exuberant difference and intricate detail. That’s what I’m willing to invest in, and I don’t have to go to a con to wallow in the wonderful world that creates.

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.

This is what democracy looks like

Normally, I’d be writing a Friday Night Lists posts today, but something so extraordinary happened yesterday that I feel compelled to write about that instead. It’s a series of events that has restored a tiny bit of my faith in responsive government, and will have an effect on literally tens of thousands of people who will never know I had a role in it.

A few months ago, I saw an email from TakeAction Minnesota calling for folks to tell their stories about the importance of MinnesotaCare, the low-cost state health insurance option that covers people with incomes between 75 to 250% of Federal Poverty Level, depending on family status. I wrote in with my own story about the failure of care for my fibromyalgia and subsequent suicidal depression that occurred when we first moved to Minnesota two years ago, and how well MinnesotaCare has kept me healthy since it kicked in that fall.

I got a call from one of the healthcare staffers at TakeAction this spring. In the time that had passed, we’d dealt with Connor’s own crisis, and MinnesotaCare was (and is) critical in the solutions that saved his life. They asked if I’d be willing to testify to these things as the government worked to figure out what to do with MinnesotaCare, once (hopefully) the Affordable Care Act kicks in in 2014. Some officials wanted to ensure that eligible communities would move into a Basic Health Plan that’s basically the same, while more conservative influences have been pushing hard to force participants to buy their own private plans on the Insurance Exchanges that will be set up under ACA. Of course, I said yes.

This Thursday, I attended a meeting of the Access government workgroup grappling with these issues. It’s a panel of officials from relevant government bureaus, the Minnesota Legislature, and agencies like Legal Aid and major labor and insurance groups. Here’s what I told them:

“My name is Jessica Banks. My husband, my two young sons, and I are currently enrolled in Minnesota Care. I have experienced life with and without this important program. I am here to tell you today that, without access to Minnesota Care, my health and my life spiraled out of control. I am also here to tell you that our Minnesota Care coverage saved my son’s life.

When we moved to Minnesota from Wisconsin two years ago, we needed to transition our coverage from Badger Care to Minnesota Care. We qualify for state coverage because we make $34,000 a year for a family of four, putting us below the 200% Federal Poverty Level. Neither of our jobs provides health care coverage, and we are unable to afford a private plan. Unfortunately, our transition required a four-month waiting period during which I became very ill.

I have lived with fibromyalgia for the past 13 years. With medication, I can keep it fairly stable. When we moved, I had enough medicine to get me through a few weeks. I had made an appointment with a doctor when I arrived. I planned on paying out of pocket for the visit. That doctor was unwilling to continue my established care and, without insurance, I couldn’t afford to make additional doctors’ visits. Buying the medication without insurance would have cost over $1000 a month. I tried to find low cost alternatives, but I wasn’t successful.

I tapered myself off my meds, trying to make them last as long as I could. It wasn’t enough; I ended up going off all the meds completely. My pain levels spiked. I was couch and bed bound. It was so bad that I couldn’t take care of my kids. As my pain levels rose, a deep depression set in. I ended up in the ER with severe depression and pain. In the hospital, the doctors regulated my drugs and found generic alternatives that I could afford. I received help for the depression, and I began to return to my normal life. Then, our Minnesota Care coverage kicked in and I was able to fully recover.

In February, my nine-year-old son Connor, who has Asperger’s Syndrome, went through a suicidal crisis. Autistics like him find rapid, unpredictable change overwhelming. His baseline of everyday highs and lows crashed and became erratic. Minor problems seemed insurmountable, and we had difficulty protecting him from his wild swings of emotion at home and at school. He hurt himself on several occasions, and he couldn’t see any way out of his sensory and emotional torture.

Our Minnesota Care plan completely covered his evaluation and a partial hospitalization program that quickly and effectively reversed his attempts to kill himself, and changed all of our lives for the better. Because of Minnesota Care, we were able to help him heal, and to recover as a family. He finished the school year back with his friends and teachers at Chelsea Heights. On this Tuesday, we celebrated his 10th birthday, a milestone I honestly doubted we would achieve at times this spring.

I am incredibly grateful for Minnesota Care. I shudder at the thought of what the outcome would have been if we didn’t have access to Connor’s treatment. I am here to ask you to ensure that Minnesota Care families continue to have access to affordable health coverage through an option very similar to Minnesota Care, called the Basic Health Plan. A comprehensive benefit package, including full mental health benefits and affordable prescriptions, is also important to my family’s continued wellbeing.

Without Minnesota Care, my health insurance premiums would increase by over 50 to 70 percent if we had to buy coverage on the Exchange, instead of having Minnesota Care. Without Minnesota Care, Minnesota families like mine, who are already vulnerable, would be exposed to unbearable stresses and burdens. My son and my family were saved by Minnesota Care–please don’t take it away.”

I’d practiced my comments several times, so I thought I had it cold, but when I described Connor’s difficulties, I got choked up. I recovered without messing up my mascara, but I could hear sniffles both in the audience and on the panel. When I told them about celebrating Connor’s birthday, I flipped up the picture frame I’d brought with me to the table and showed them this picture. The sniffles turned into tears.

I had to leave for work shortly after I testified, but the ladies from TakeAction who’d helped me figure out the specifics of my comments and supported me with their presence there that day were very complimentary. A few people thanked me for my courage, which surprised me. What I’d done hadn’t taken any particular courage on my part–I don’t have a filter, so I’ll tell anybody anything. (Exhibit A: This whole damn blog.)

That evening, I got an email from TakeAction, containing a forwarded message from the chairwoman of the committee for me and another woman who testified. She wrote this:

“And then when people spoke, they were eloquent and compelling.  They did a fabulous job.  Unfortunately, I was not able to thank any of them personally or tell them how great they did.  They left before the meeting finished.  As a result they may not have realized how important they were to today’s outcome.  In agreeing today that the benefit package for the138-200% population should be at least equal to the current MNCare benefit package (and agreeing that we should continue to explore what other benefits should be added [Model Mental Health Benefits were added today]), several task force members referenced things that were said by the people who spoke today.  Their statements were also critically important in the task force deciding to recommend that people should pay no premium up to 150% FPG and reduced premiums for people between 150 and 200%

If you have the opportunity, please convey my thanks to everyone who came today and my deep appreciation to those who shared their stories.  Please assure them that they influenced the outcome.”

Another panel member emailed me directly to thank me for my testimony, and said that recently it seemed that the panel had been moving backward, away from a solution that would help MinnesotaCare folks, but that our stories contributed directly to these big leaps forward.

Frankly, I’m shocked, and that’s a bit sad, because what happened on Thursday is a perfect demonstration of how democracy is supposed to work. That it’s surprising is a good indicator of how rarely it does. The other panel member wrote, “When the kind of real-life story you brought into the room is missing from the discussion, the discussion often ends up harming consumers and workers.” You’d think that these stories would overcrowd the boardrooms and meeting halls–heavens know everyone’s got them–and make decision-makers emotionally fatigued and jaded. And if these stories can be so powerful, you’d think there’d be a line out the door at every meeting, of people deploying their own experiences to influence government and corporations. But I was thanked for being courageous and powerful, when I felt anything but as I spoke of my life and my loved ones. Telling stories is what my family does, and this didn’t feel any different.

But let me tell you all–your personal stories have immense power. They sway voters, shape policy, spur movement, support progress. That’s the core strength the Minnesota campaign against the anti-marriage amendment has going for it–the entire strategy is based on telling our stories of love and commitment to convince people that marriage matters to everyone.

So tell them. Practice them on me, on your family and friends, on anyone who will listen. Then wait for the discussions where your values lie, where the hinges of your life join with your investments, your neighborhoods, your government, your world. Screw your courage to the sticking point, if that’s what it takes, and raise your hand. Say yes. Fill the silence with your stories.

Then watch the world change around you.

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