Tagged with " Asperger’s"
Oct 20, 2011 - Psychology    7 Comments

Overdrawn at the Memory Bank

Last week we got a letter from Connor’s teacher informing us that he would be receiving an award at the first student assembly of the year, on the 18th, at 1.40 pm.  Since Cam and I are blessed with flexible work schedules, we resolved to be there to witness his always-entertaining surprise and cheer him on.

So, on Monday, Cam picked me up from work at about 12.30; we snarfed down a burrito together by way of a lunch date, then headed over to the school. We breezed in at 1.40 on the nose. I saw one of Connor’s classmates in the hallway, where she hailed me with a big smile: “Hi, Connor’s mom!” (I love it when they call me that.)

“Hi, Lila!” I replied with a big smile of my own. “Why aren’t you in the assembly?” She kept smiling, but she gave me that look — you know the one. The one that says, “And the person I know is actually an alien.” At that moment, the principal came around the corner, saw us, and grinned.

“You’re a day early,” she said.

Honestly, what could we do but laugh? “Better a day early than a day late,” I said, trying desperately not to look as stupid as I felt.

Here’s the thing: I’m smart. I’m not bragging, or saying anyone else isn’t. But I’m pretty clever. I’ll also say that I test well, and I’ve studied a lot of things for a lot of years. However, this has absolutely nothing to do with my capacity to get by in everyday life.

This isn’t a “common sense” issue. As a child, grownups frequently said that I had loads of “book smarts,” but not a lick of “common sense,” whatever that meant. They also said I was “intellectually advanced, but socially backward.” To me, these things now mean that somebody should’ve been screening me for Asperger’s Syndrome as a child. I’m not 100% sure that’s my deal, but those platitudes were used to spackle over a lot of struggles I faced as I tried to interact with a world that didn’t follow the rules I’d been taught or the examples I’d observed.

In the Middle Ages, scholars used a mnemonic device called a “memory palace” to expand their capacity to remember texts in an age before easily duplicable books. I’m in awe of this technique and its users, because I know it’s beyond me. If my memory is a structure, it’s the haunted Victorian house on the hill outside town, its windows broken, shutters hanging by one hinge, siding peeling and falling away where frost and wind have pried stealthily over the seasons. Once, it housed a hoarder of the most random, eccentric sort: she frequented libraries, church rummage sales, abandoned schools, failed campaigns, futile protests, forgotten ancestors, buried archives, ancient cemeteries. There are gestures at organization — rusty file cabinets, ingenious labeling systems, half-implemented folder schemes — but if anything, they may only complicate the process, like removing something from its usual place “for safekeeping,” only to lose it because it’s not where you normally keep it.

The practical results are twofold. The first is the bifurcation of my available memory. I’ve got the usual short-term surface area that everyone’s got, which is pretty much like a very large refrigerator door/corkboard/Post-It wall. Then there’s what I call The Processor. It’s basically deep storage, and if I want something out of it, it works like the old European libraries used to. You have to write down what you want on a little slip of paper, give it to the scowling old lady behind the desk (who’s not at all convinced you deserve to be there at all), and wait patiently for the workers to bring it back from the shelves in their own time, so sit down with your silly pencil and white cotton gloves and shut up, you ungrateful American.

The Processor occasionally results in odd and embarrassing outbursts, as it turns up answers when you least expect them. My poor parents have been experiencing this longest. It usually happens for me with trivial knowledge, though not always, and it’s always something that I immediately know that I know, and feels like it’s on “the tip of my brain” but just can’t come up with. This feeling persists quite strongly for hours, even days, until with what feels like an audible pop, out comes the answer, so forcefully that I have the almost uncontrollable urge to shout it, no matter what’s going on around me.

The second effect of my messy memory palace is this: I’m pretty sure that my brain is at capacity. It can hold no more. If something new wants in, something old has to come out. You can feel it eject, even hear it: poit.

Unfortunately, though, what comes out isn’t always old or useless — it’s frequently the thing that just landed, and as such, might really be important. So, the new pediatrician’s phone number? Oops, there go the 5 things I need from the grocery store. Have to change my email password to meet some new security standard for work? You better hope your birthday isn’t anytime soon, because it just got kicked right out of my mental calendar. No, it’d be nice if I could shed all the words to “I Touch Myself” by the Divinyls — I mean, seriously, who’s got the balls to sing THAT at karaoke? Or my high school long-distance boyfriends’ addresses. Or all the lines for the first half of the movie Heathers (but only until after the 1st Heather’s funeral). Nobody needs that stuff.

But that’s not what gets evicted from that creaky, collapsing house on the hill. It hardly matters that fibromyalgia sends banks of fog rolling through like weather systems. And I wish sometimes that one of my sensory things didn’t mean having perfect, focused, vividly visual memories of such a large percentage of my life. If that house has ghosts, those reels play out in the rooms and down the halls at random intervals. Still, like every messy room, every disastrous desk, every once in a while, it yields the most surprising treasures, the most unexpected gems.

Mostly, though, my memory just leaves me kicked out of the room for ruining trivia games, and a day early for school assemblies.

Oct 10, 2011 - Domestic Engineering    12 Comments

The Walking Wounded

My kids are Those Kids. Not the ones who talk through concerts or scream in movies, thank all the gods and little fishes. But the ones who throw tantrums for toys in Target? Or run down the aisles in the grocery stores? Or carry on conversations in restaurants loudly enough for every other diner to clearly hear over their own?

Yeah, those are my kids.

I get that everyone is tired of Those Kids, especially people with no kids of their own. I’ve seen how quickly articles with titles like “Curb Your Brats” get shared on Facebook, and how much gleeful support has rallied around business owners who decide to bar children from their premises.

Kids aren’t useful and quiet, inconvenient to an allergic few, like service animals. They’re unpredictable in every way: unannounced bodily processes, loud inappropriate emotional outbursts, irregular and unapproved repositioning of their messy selves. And parents and children alike think everyone should be willing to accept their shrugs and smiles and apologies just because everyone once was one. Ludicrous.

There’s no question that some children are much better behaved than others. Some children just seem calmer, sweeter, neater, and their parents receive that rarest of praise: “I hardly even noticed s/he was there!” A lot of that is just disposition, but I don’t mean to detract from what must be very calm, loving parenting in a steady environment. I’m so happy for those families, and what they’re able to achieve.

That just isn’t an option for us. My oldest son Connor has Asperger’s, but even without that, he, like his younger brother Griffin, is an Active Child. This is a category that is itself in flux; author Mary Sheedy Kurcinka has written several books about “spirited children” that propose some interesting theories advancing the discussion. What does this mean? They are incredibly smart, lightning fast, hair trigger, and non-freaking-stop from the second they wake to the second they relent and fall asleep.

And whatever mitigating influence my husband and I could offer our kids by giving them a stable home, continuous medical care, and high-quality restricted diet since birth — all of which we’ve had recommended by various well-meaning friends and teachers — are beyond are reach, mostly for economic reasons. We cannot buy a home. We are dependent on state health care, which comes with restrictions. Organic food and what’s left once one eliminates gluten, dairy, or all sugars, are foods that we cannot afford in the volume it takes to feed a family of four on our income.

As much as we try to shield them from those realities, we carry that stress, and we know it affects our interactions with them. My physical and mental health also affect my interactions with them, an unavoidable truth for which I carry a staggering amount of guilt that probably contributes to those self-same conditions (vicious spiral, that).

So what do you do with kids like these, or any kids, when they’ve got you at the end of your rope? The quick and dirty — and very satisfying and least efficient — option is to lose your shit. Scream back at them, burst out crying, spank, make exotic threats, bring down the Hammer of God. The child sure as hell regrets his actions immediately, but you sure as hell regret them later.

Are there times when this is all you can do? Yes, I really believe there are. Every parent’s got their buttons that makes the Red Haze rise. Griffin’s got a doozy: I tell him to stop doing something. He doesn’t. I say, “Stop doing that, or I’ll take away X for the rest of the day.” He says, “Oh yeah? I’m going to keep doing it more and worse until we leave/you buy this thing/I get my way/you take that back.” BOOM — instant fury. I was in a store the other day with him, and he wouldn’t stop touching fragile things on the shelves. I said, “Give me both your hands. I don’t want you touching things anymore.” His response: “I can still touch them with my feet.” I leaned down and growled at him, “I will tie your hands and feet together and wear you like a handbag.” He stopped long enough at least to assess the odds of me having rope in my purse. I’m not always that creative, and some of you may find that threat horrific to make at all, let alone in public, but I regularly reach that point with him these days.

The next option is to find your inner Buddha and appeal to their inner humanity. You take a moment to evaluate the environment, and what’s affecting the kid, then you sit down with him and help unravel the tangledy ball of emotions that’s making him act like a colossal jerk. Sometimes, this really works, and you have a truly insightful conversation that makes him aware of some new tripwire that we can work together to avoid or minimize in the future. But most of the time, this is a boring torture worse than pain of death to the child, and/or devolves into the Airing of the Grievances in which everything you and everyone else have ever done is screamed out through tears of rage before doors are slammed and Xanax is taken.

Finally, as with every good and human endeavor, there’s the middle path. And like every good middle path, it’s got angry yelling and compassionate insight, with a healthy dose of deep breathing and a sense of humor. You admire the passion and energy that drive these little engines of discovery and innovation; you give points for perseverance and rhetorical style; and you acknowledge that yelling at a kid after the fourth time you’ve asked him politely to pick up the damn plate in the middle of the floor is not going to squish his special little snowflakeness.

The single best thing other parents can do for one another is to be gentle with one another, especially those who don’t have Active Kids toward those who do. Face it: parents just aren’t going to get the support or sympathy we’d like or deserve from childless adults, or even adults who’ve already done their childrearing and want to be done with the screamy droolmonsters. But the shit parents give one another is absolutely unforgiveable. There’s this hypocritical cult about motherhood today: it’s the single most important job a woman can do, but you’re expected to do it in absolute seclusion, and if you’re not doing it “exactly right,” you deserve to be publicly flayed. And you wonder why antidepressants and wine are essential motherhood equipment?

Nobody knows the story behind that screaming kid in the store or restaurant. The vast majority of special needs, both juvenile and adult, are invisible, as are personal struggles. You walked in in the middle of the movie. Philo wrote, “Be kind to one another, for everyone you meet is fighting a difficult battle.” Parenthood is one of the rare battles that many of us have the scars from. The least we can do is give each other credit for serving the best we can.

Sep 14, 2011 - AV Club, Fine Arts    3 Comments

Music Calms the Savage Geek

Don’t call the people in the padded van, but I’m pretty sure I pick up radio signals with my fillings. Because I hear music. All. The. Time. The only other theory I can think of is that someone’s secretly making a movie of my life, in real time, but that would be deeply unfortunate, because some of the songs I hear really suck sometimes, and I would hope whomever’s in charge of this project has better taste than that.

Much as my kids were destined to be reading and gaming geeks, I was destined to be a music geek. My mom sang in choirs from when she was a little girl, and loved ’50s, ’60s, and ’70s pop music passionately; her mom could play piano by ear, and knew dozens of campfire and folk songs from her years as a Girl Scout leader. I was blessed with a good ear and a strong voice, and with the exception of one elementary music teacher who told me she’d like to hear everyone else too, I was never told to pipe down or use the maracas instead.

My earliest and best memories are all saturated with music. I remember my very first concert — I couldn’t have been more than 2 — where I sat on my father’s shoulders and looked out at the sea of shimmering lighter flames as Willie Nelson sang “Stardust.” I knew dozens of Beatles songs, and they were my favorite band as much as my mom’s. I cried and cried the day John Lennon was shot. And it took me years to realize that the 20th Century Fox intro wasn’t actually the beginning of the Star Wars score.

By high school, I was firmly entrenched as both a band and choir geek. Sorry, no show choir. This was pre-Glee, and these were the jazz hands, “Send in the Clowns” days. Every geek’s got their limits. My good fortune as a musician truly blossomed. I had the very best teachers, and my stepdad’s work as a music ed professor gave me opportunities to sing in national festival choirs that thrilled me to my toes. At college, it only got better. Though I had to choose choir over band for time constraints, I worked for several years with Simon Carrington, one of the founding members of the King’s Singers, as he began his foray into a second career as choir director. His repertoire and professional expertise was epic, and he simply didn’t know to expect any less from a college choir. So we delivered. Britten’s War Requiem, Biebl’s Ave Maria, Tallis’ 40-Part Motet … we even staged Mendelssohn’s Elijah as an opera. I was spoiled forever.

High school was also where my listening tastes began evolving, formed by influences from every direction. The Morrissey tape from my first kiss; Erik Satie and Francis Cabrel from my Belgian exchange student; and every concert I could scrounge up the allowance and babysitting money to attend: Bob Dylan, Heart, R.E.M., Modern English, Skinny Puppy, Love and Rockets, The Pixies, Fishbone, Jane’s Addiction, The Swans, The Cure, Primus, Tracy Chapman, Johnny Clegg, Nine Inch Nails, Peter Murphy, Nadia Salerno-Sonnenberg, The Bobs … the list goes on, and memory fails. We had the perfect arrangement: Thursdays at Bailey’s and Sundays at Club Marilyn in Milwaukee for dancing, and The Exclusive Company and B-Side on State Street in Madison for cassettes.


Music has power over me. Sometimes, that’s not such a great thing. When I was 15, I dated a kid who was a musical prodigy. He played trumpet and piano. He arranged Bach’s Air on a G string for brass quintet from the organ score one weekend when he was bored. He would sit at the piano in my living room and improvise the most beautiful, heartbreaking songs. I basked in the reflected glow of his genius. I pretended that made up for the abuse. I made excuses for him until after the second rape, and some of my other music geek friends circled the wagons to protect me. When I would’ve crawled into myself and died, they made me eat Spaghetti-Os out of the same big mixing bowl with them and sing Little Shop of Horrors songs with my mouth full. That music saved me as surely as the other music endangered me.

And I was 35 (!) when another piece of the music puzzle fell into place for me. Part of my music geekiness is based on the fact that I have hyper-sensitive hearing, and perfect relative pitch. Put another way, I can’t ever stop listening, which is why I have to have white noise without any pattern to it in order to fall asleep; if it’s silent, I’ll lie awake waiting for a sound. And the sensitivity to sound is so bad that my one and only migraine trigger is loud, sudden noises: everything from fireworks or a car backfiring, to a balloon popping nearby. If you can feel the percussion of it “slap” your eardrum, it’s enough to trigger a migraine for me. It’s been this way since I was a baby, they think. But I’m good with prolonged loud noises, like you’d find at the kind of concerts I most enjoy, and there’s almost nowhere in the world I’d rather be than standing in front of a powerful Bass II section or a good bass woofer. If my sternum’s rattling, if I can feel a mild heart arrhythmia caused by the secondary beat in my chest, I am one hundred percent happy.

And I think that both of these come from the fact that, in all likelihood, I have Asperger’s Syndrome to some extent too. The wrong kinds and frequencies of sound make me extremely uncomfortable, but music — especially lyrical bass (not that stupid bass-bumping crap) — fills me up. It forms a glowing, golden spiral from the center of my belly, up through my whole body, like a mighty architecture that leaves me so much stronger that the light and joy just spills out my voice and my smile and my fingertips.

This is one of those rare instances where I am not a nerd at something I’m a geek about. I’ve never had a single day of music theory, or any other formal course of music study, and I stopped piano lessons when they asked me to do two things with one hand at the same time. But there’s no question I’m a music geek. When people look at our CD collection, the first question is usually, “How many people did you say live here?” And the second question is usually, “Can I borrow this?”

Default Setting: Love

This is my first blog post, and it’s by way of explaining why I felt strongly enough about the Speak Out with your Geek Out movement — all next week, anywhere and everywhere you want to talk about whatever floats your geeky little boat — that I stepped up to be an admin. I’m doing it because I’m a big geek, of course, but more importantly, I’m doing it for my kids. They’re going to be a frequent subject on my blog, and yes, I’m going to use their names.

* * *

The first thing most people notice about Connor is how *big* everything is for him. His volume is permanently set to 11; every gesture and expression is oversized and repeated two or three times in case you missed it the first (you couldn’t possibly). Then the other extremes about him begin to emerge: the speed of his speech only hints at the speed of his thoughts, and words pop up in the rapid stream that you don’t expect in a fourth-grade vocabulary. All these things might give the impression of excitement by themselves, but there’s real enthusiasm for so many subjects, and genuine delight at the prospect of sharing the coolness with someone new.

This is my kid. He’s a geek. His default setting is love.

He was doomed to geekhood well before his conception, what with two parents of impressive geek credentials. And he showed his own talent for geekhood as well. He started calling his make-believe play “movies” between ages 2 and 3, around the same time he announced he wanted a Jon Stewart 3rd birthday party. His passion for superheroes exploded onto the scene, until we started telling people who asked about potential gifts for him, “Look, if it’s ‘super,’ it’s great.”

What we didn’t know until he turned six was that Connor has Asperger’s Syndrome. The school where he attended kindergarten failed him in every respect. Teachers missed the expanding intellect and hunger for social interaction, and labeled him a discipline problem, a threat to “normal” kids. His classmates saw a child who wanted friends a little too desperately, and probably left them behind when he tried to include them in his elaborate stories. And, at that critical age, when different is dangerous, those children made his life hell. They rejected his friendship. They rejected his enthusiasm. They hurt him on the playground, to the point of stitches one cold winter morning. They threatened his life on the bus after school. Kindergartners told my son they wanted to have a party at his house; he was overjoyed. They said they would have a party at his house, and he would be the pinata, and they would beat him until he broke open and died. He had nightmares. My six-year-old said he wanted to kill himself. He knew what he was saying.

Things got better. We switched schools for first grade, and within a month, they’d identified the Asperger’s. Instead of simply conceding to the previous reigning theory on his behavior issues (i.e., “we’re crap parents”), we built strategies for home and school to address the most serious problems and deal with them constructively and consistently. Connor’s teacher gave him challenging work that kept him from making trouble when he was bored. He made friends who valued his vast cache of knowledge about Star Wars and superheroes.

Connor’s experiences made him a better person too. His fixation on superheroes had taught him the philosophical concept of justice, but now he understood what prejudice and oppression felt like, and why it was important to protect those who couldn’t protect themselves. His skill as a storyteller was growing apace, but now he was sensitive to allowing his friends agency in their own stories, and supplied them with information so they could “make cool movies” too.

It’s not for nothing that jaded adults are advised to view the world through the perspective of a child, if they can. Everything is new and amazing to children, and they’re predisposed to love it, to find it literally wonder-full. I heard a parent of an autistic child in a radio interview say that people with autism are “more human than human;” natural human tendencies are amplified to extremes. Geekhood is, I believe, a natural human tendency. We get enthusiastic about things we enjoy; we want to know more, and we want to share them with others. We start with it when we’re children, when we’re geeks about the whole wide world–our default setting is love. And for some lucky people, like Connor, that setting never changes.