Thoughts and illustrations on living on the autism spectrum.

Tuesday, August 24, 2010

Spectrum Soundtrack: Lonely Moon

The Cat Empire is my favorite band. Their music delights the ears and nourishes the soul. Their lyrics infused with universal truths and wisdom flow rhythmically over a backdrop of horns, jazz, funk, Latin, and hip-hop. “Lonely Moon,” a track from their 2008 CD, “So Many Nights,” is the next selection for my Spectrum Soundtrack.

“Lonely Moon” is about a girl who’s different. She doesn’t fit in. It’s not clear why, and it’s not really important to the song. But the second verse could easily describe someone with Asperger’s:

Sometimes she gets this way
About her when she sways,
Slips into a liquid tune and vanishes away.
And it’s only for herself,
She can’t bring anyone else.
Everyone’s got a special box that they keep on a dusty shelf.

Physical tics and a self-absorbed nature are hallmarks of the autism spectrum, and it’s all too realistic that this girl would be socially ostracized for these behaviors. Perhaps she's swaying to this wondrous world inside her head where she feels most at home, but is unable to share it or explain it to others. Unfortunately, as we mature and become self-aware, our magical worlds often fade into a special box on a dusty shelf.

This girl understandably feels helpless, sorry for herself, a victim of her circumstances. The narrator is clearly sympathetic towards her; yet he doesn’t seek to minimize or deny her loneliness. He acknowledges it as real, and offers these cryptic words:

Don’t you worry,
When you feel so lonely, cause
Everyone’s lonely,
They’re all crazy, too,
Like their mothers,
Like their fathers,
Everyone’s crazy,
Under a lonely moon.

Everyone’s lonely? Wait, that can’t be. Surely all the neurotypicals who “fit in,” have large social circles, or are in a relationship, aren’t lonely. At least, I always thought so. But lately, in conversations with NT friends, I’ve learned even the socially adept aren’t immune to loneliness.

Or at least, to a feeling that something’s missing. Of not being appreciated for one’s authentic self. Of putting on an act in one’s life. This is a kind of loneliness, too. A kind I imagine is widespread, and yet mostly unspoken. Everyone’s lonely? A sobering thought. So, why is the narrator sharing this with our despondent girl?

I think because, there is something comforting in his words. Everyone’s lonely, and yet it is this common experience of loneliness that unites us. It’s just a part of life. I take this as the song’s message. To remember that when we are lonely, we are not alone. Certainly, this thought won’t rid us of the pain of our loneliness. But if everyone is lonely, and crazy, then what good does it do, really, to feel sorry for yourself?

As for a cure for loneliness, consider this: the key just might be in your dusty old box. It could just hold what someone finds special about you. When was the last time you opened it up?

Friday, August 20, 2010

Fun with Literalism: Personal Melon

What is up with the fruit and vegetable marketing people? They’ve really gone goofy now.

First, I read this New York Times article on the personal melon. Excuse me? “Personal melon?” They’re breeding watermelons smaller so you can have one all to yourself. I dunno. I’m not sure I’m ready for that level of commitment with my melon.

Then, I read in my local paper that they’ve developed the burpless cucumber. Apparently, cucumbers have been making us burp all this time. What, you didn’t notice? Me neither. But now, they’ve extricated the burp-inducing compound, so we can enjoy our cucumbers with some semblance of decorum.

This all just seems like a gimmick to me. What’s next? The SqueezeAndGo spaghetti squash? The JustForHer jalapeno? But, on the other hand, these new franken-veggies do conjure up amusing images in my mind. Literally, and figuratively.

Mmmm... personal melon... don't you be gettin' all fresh with me now...

Wednesday, August 18, 2010

Delaware’s Group Home Dilemma

The possible closure of Delaware’s residential treatment services for autistic children has parents worried for how their kids’ needs will be met. The Delaware Autism Program, a service offered through the school district, is proposing to eliminate overnight stays at its group homes because it is not properly licensed to operate a residential program. The usage of the homes has evolved beyond their intended purpose, creating a liability issue.

However, parents say the services make a world of difference in teaching basic life skills, and do not want to see the program end. Advocacy organization Autism Delaware agrees, and says something else will need to take the place of the homes if they close. Whether the residential services could be put up for bid to a new provider, or be replaced by less expensive home-based services, are questions that will need to be considered. And, where the funding would come from.

This is a complex problem that won’t be easily solved, but for the sake of the families who need these services, I hope a solution can be found. Do you have any thoughts on what should be done?

Sunday, August 15, 2010

Special Interests: The Top 40 Countdown

I came to music geekdom by a different path than most. The typical kid in the summer of ’88 listened to the screaming of Steven Tyler, the shredding of Slash, the rhymes of a teenage Will Smith, and a light bulb went off in their head – “Hey, I wanna to learn to do that!” or, “I need to start dressing like that!”

Not this Aspie. For me, it was all about the numbers. Specifically, the Top 40. At 13 years old, the music charts fascinated me to no end. The seemingly random programming of commercial radio revealed itself as, in fact, a very orderly system. Popularity could be quantified! Rankings! Peaks! Notches! Eagle 106 carried the weekly Billboard Top 40 countdown with Shadoe Stevens, and I would listen to the whole four hours. Once I even brought my radio with me to the dinner table, so I wouldn’t miss anything.

Yes, there was such a thing as The #1 Song In The Country, and we could track its changes from week to week! There was something fantastic about that. Only a select few made it to the top, and were rewarded with a place in history. Immortality. Was there a magic formula to a #1 hit? The right combination of lyrics, melody, and image that added up to near-universal appeal? I wondered.

Yet there was a dark side also. The music charts were ephemeral. No sooner would a song reach its peak, to be branded for all time as “a #3 hit,” or “a top ten smash,” than it would begin falling down the charts again. Even a #1 would last, at most, a few weeks. Today, we love you, and tomorrow, we’ve moved on. Each song’s journey was its own mini-narrative, that I felt compelled to witness from cradle to grave.

As my obsession grew, I found I would disagree with the countdown. So, I started my own. I kept my weekly Top 10 list in an AppleWorks database. (Now entering special interest territory, in case you hadn’t noticed.) “The Promise” by When in Rome a mere #11? No way, America! A multi-week #1! I made it so. New Kids on the Block? They don’t even chart. Suck it, teeny bopper girls!

But the best part was, because my database was sortable, I could do the ultimate extravaganza: The Year-End Top 100 According to Me! And boy, did I do it up right. All year long I recorded songs off the radio. In December, I tabulated, and I recorded them to tape, from 100 down to #1. It took 5 or 6 cassettes in all, and several days' work.

This was my #1 of the year 1989, Roxette’s “The Look.” (Super-cool Head Drum Remix version that Q102 used to play!)

And for the year 1990, “The Humpty Dance” by Digital Underground was my #1. What are you laughing at? You know you liked it, too!

I even stuck in some comedy bits from the morning zoo programs in between the songs. The B-52’s “Love Shack” spawned many - “Radio Shack,” and “Butt Crack,” just to name a few. Yes, it was a labor of love to assemble these elaborate tape creations. Of course, I didn’t share them with anyone. It seemed, somehow, too obsessive and personal, as if the only appropriate response would be, “Wow, someone has way too much time on his hands!” But I had fun.

After those two years, I lost interest in the music charts, both real-world, and my own. But I kept making my year-end mix tape compilations for another 8 years. My tastes evolved, and quickly turned far outside the mainstream and commercial radio. Nowadays, I have no need to rank what I like - I buy CD’s, or I download, and my favorites have a lot more staying power than a few weeks.

But sometimes I still miss the old days, glued to the radio, listening to the singles battle it out like gladiators, jockeying for position, and a big booming voice conferring the honor, over the opening notes of some omnipresent ditty. “The Num…ber One…. Song… In America….” Victorious at the top. For the moment.

Tuesday, August 10, 2010

Thumb Prison

The hand therapist peered deep into my eyes as he pondered my question, and held the fast-hardening neoprene around my wrist.

“It’s removable, right?”

He answered, in his British accent, in the way a parent might admonish a small child, firmly, yet showing pity at my ignorance.


My heart sank. I scanned for evidence of a smart-ass response, which I fully expected. But it’s just a thumb splint for carpal tunnel… why wouldn’t it come on and off? No, he’s serious! They’ll have to slice this plastic mold off me! Wait! Stop!!!

“…Of course it comes off.”

Oh. So it was a smart-ass answer. Pwned. Well done, Andrew. Way to kick a reluctant patient when he’s down. You've just earned yourself a lifetime slot on my sh*t list.

So, good news, my splint is removable. But it’s still a problem. I don’t take well to prosthetics. Arm cast, braces, knee splint – I’ve experienced all these things, which are way worse than a stupid removable thumb splint. But it is a big deal.

First is the sensory issue. Restrict my motion even a little bit, you cause me distress. The feeling of plastic flush against my palm is hideous, like a permanent handshake with a melted wiffle ball. Have to be careful of the sharp edges, and this August heat will be none too comfortable. It’s a thumb prison, in a very real sense.

Then, the social issue. Wearing this thing in public draws attention to me. I feel a bit like a fourth-rate Michael Jackson with wiffle glove. It invites conversation I don’t necessarily want. “What happened to your hand?” Depending on who’s asking, maybe I want to tell, maybe it’s none of your business.

Such a burden. That said, I curse myself for being a crybaby when it could be so much worse. Why not carry myself with dignity, like disability advocate Dave Hingsburger? He’s in a wheelchair, for cryin’ out loud, and all I’ve got is a freakin’ removable thumb splint!

So it’s one day in. I’m wearing it at night, and as much as I can manage during the day. We’ll see if it helps. My doctor may scold me for noncompliance, but the choice between a lifetime of mild pain, and a short period of awkwardness and inconvenience, is not as clear as he might think.

Sunday, August 8, 2010


We Aspies like our swings. It's not hard to understand why. The back and forth motion quiets the agitated mind. The energy that might otherwise be released through nervous stimming finds a more rhythmic, orderly outlet. Who wouldn't enjoy a good swing?

I sit on my outdoor rocking glider as I write this. I've had it about a year. It's nice, for the few minutes I spend out here, now and then. It's relaxing, an invitation to step outside and do nothing. Until the mosquito-dodging, and the unending drone of the air conditioners, drives me back indoors.

Yet, my glider swing does lack something compared to the real thing, by which I mean a swing set. I suppose it's been 20-odd years since my last time. I remember how it feels, vaguely. Gripping the metal chains with my hands... Pumping my legs... Gradually propelling myself along an ever-widening arc, and the ground below appearing to rock along with me, up and then down. On and on. All cares fall away. Ah yes... that was the stuff.

Why's it have to be a kid thing? Surely, I'd get funny looks today, at my age, if I dared. A pity. I must confess, that somehow, some way, I hope I get to swing again in this lifetime. For real.