Thoughts and illustrations on living on the autism spectrum.

Sunday, November 21, 2010

Spectrum Soundtrack: Just By Myself

Spectrum Soundtrack is songs that speak to me as a person with Asperger’s, even though they may be about something entirely unrelated. Greg Brown’s “Just By Myself” is one of those songs.

This song is about moving on after a breakup. It’s about rediscovering all the mundane, everyday things you can do now that you’re single again. But for me, it’s also an ode to enjoying your own company.

I first heard this song come on WRNR radio in 1996, living in Baltimore in my junior year of college. After two years of living on campus in the dorms, with roommates, I now had my first apartment on my own. It was a milestone that I both looked forward to, and found scary. At the outset, I didn’t know what to do with all this freedom. I was not socializing or joining groups on campus. I went to class, and I came home. I was on my own, quite literally.

I fell into a routine of grocery shopping, bill payments, and laundry. I listened to the radio, wasted time on usenet, and watched TV. I ventured out in the car to explore. And I went for walks around Charles Village and Hampden. When Greg Brown came on the radio, he was telling me I was doing just fine.

I'll walk around
some ancient city,
scribble in my notebook,
and drink my tea.
I don't have to make love,
'cause love made me,
and I'll be happy, happy, happy, happy, happy, happy, happy by myself.

I very much prefer the live version of “Just By Myself.” It has a rhythm to it, in just the guitar and vocals, that you can really get caught up in. The studio version on the “Dream CafĂ©” album is much more somber and serious, and kind of makes you question whether this guy is really happy, or still trying to convince himself. But in the live recording, there’s no doubt. Brown is an upbeat wiseguy here, comfortable in his solitary skin. He even throws in a nice “nyah-nyah-nyah” to really stick it to his ex, or in my mind, to those who don’t know the joy of solitude.

Is it joyful to be by myself? Yes, sometimes. Sometimes not. I must say I’m by myself more by nature than by choice. There were good things about having roommates, but it got to feel like a perpetual performance. When I’m in my home, I don’t want to have to “perform.” I want to be myself, and I want to be tuned in to whatever that little voice in my head has to tell me.

Way down in my dreams, find sweet release.
and I'll be happy, happy, happy, happy, happy, happy, happy by myself.

Toward the end of the song, Brown revisits his earlier lyrics with an extra punch of humor, making it clear he’s not out to please anyone else.

I fold the laundry like I want to, I might not even fold it, I might just wad it up and stick it in a bag, happy happy happy…
I put the sheets on like I want to, I might not even tuck the ends in tight, I might just leave ‘em loose so I can kick my legs out if I want to, happy happy happy…

Well, I still fold my laundry, and I still tuck my sheets in. But, I have my peculiar indulgences like anyone else. When I’m by myself…
… I can let out that sigh I’ve been stifling all day.
… I don’t have to “fix” the look on my face.
… I can let a song stop me from what I’m doing and transport me somewhere.
… and I can generally be quirky in ways I don’t care to share with others.

There’s an oft-repeated joke about the parent who found a cure for autism. She sent her child to his room and closed the door, and all his symptoms miraculously disappeared. Sometimes, alone is where we are most happy.

What makes you happy, just by yourself?

Sunday, November 14, 2010

Big Dreams

I am stressed, these days. I am working hard, and it seems there are not enough hours for what I want to do. What am I doing?

Only 15-20% of people with Asperger’s are employed, the stats say. That puts me in elite company. I should feel like a success, then, right? I should be grateful. I should have it easy.

But I don’t. I have big dreams. I’m not content with what I have. I’m a non-profit marketer/fundraiser. I’m good at it, and I like what I do. I work in behavioral health now, but autism is my passion. I want to follow that. Continue to do what I do, in the field that matters to me. Big dream, but I don’t know how to get there. Is it possible?

How did I get here? It once seemed impossible. I have not had it easy.

I didn’t get my first job until I was 19. It lasted all of one week. I bagged groceries, collected shopping carts, and rotated the milk. When they scheduled me opposite my favorite TV show, I left.

The next summer I worked as a busboy at a chain buffet, clearing away melted ice cream-cherry cobbler conglomerations. I had four supervisors, one of whom nicknamed me “Stoneface.” My lasting memory is of her voice barking, “Clean dem win-dezz! An’ this time, dew ‘em right!” I kept the job for a month.

A year later, I took an office support position during in my senior year of college. The job description was split between data entry and answering phones. Early on, I indicated discomfort with the phones. They scolded me at first, but then, they adapted the job to let me focus on data entry. I turned out to be the most accurate in the office. I even developed a guide we all used to decipher the client’s sloppy handwriting. I stayed 7 months there, until graduation.

Just finding opportunities was the hardest thing back then. I had no personal contacts, and internet job listings were still fairly new. At 22, on winter break from grad school, I took a job I’m rather ashamed to mention. I worked for a temp agency in a warehouse, opening and sorting junk mail. It was clearly intended for people without the skills to do anything else, who took the bus in from the city and gossiped cheerfully as they worked. And here I was, a college graduate, feeling very out of place. Better things were out there, I knew, I just couldn’t find them.

Grad school did not work out. My grades fell below the minimum requirement, and I was doubting my choice of field, engineering. I was about to be thrust out into the market for full time work, having never had so much as an internship. But in the nick of time, a professor connected me with a startup R&D company. They paid me to write grant proposals, working from home. It wasn’t enough to live on, and it was isolating.

I asked for a full time position, and space at the office, but the boss resisted. He did, however, offer me a proposition. I could put a portion of my fee “at risk,” and if the proposal was funded, I increase my earnings ten-fold. If not, I lose it all.

I am not a gambler by any stretch, but I was confident in my work. I took him up on his offer. And I won, turning $500 into $5000. Soon after that, I was hired for my first full time position.

Two years later, I had a new “big dream.” Having found success as a grant writer, I was ready to leave engineering and work for a non-profit. That kind of career change is difficult for anyone, let alone with Asperger’s challenges. I sent out dozens of applications, and went on more than ten interviews. The one time I got an offer, I botched the salary negotiation. My search grew frustrating and dragged on for months.

Then, I went on an interview that was different. It was a non-corporate, grass-roots environment. The people I met with were candid and direct. They spoke their mind, with no B.S. They loved what they did, and clearly believed in people over polish. It was a drug treatment center, and I was biased and resistant to the idea. So much so, that I turned down their offer for a second interview.

But three months later, with nothing else having come along, and the refreshing vibe I got still enticing me, I went back, and they welcomed me. They asked my salary requirements, then offered me more. It was a vote of confidence like I’d never had. Their faith that I, an engineer, could do their fundraising, filled me with a sense of value, and it carried over into my performance. I brought in millions in funds, I transformed their Web site, I turned data into charts and graphs, and I learned the art of advocacy through storytelling. I worked for that supervisor for nearly 8 years, until her retirement.

Now, I am looking for a development/communications role in the autism field. Not every advocate steps into a professional role, but I have the background for it. It’s just a natural fit. It’s realistic and possible. But I know I’m looking for a needle in a haystack. Something customized to my strengths and weaknesses.

What will it take this time? To be imaginative and resourceful in my search? To scratch and claw my way to be taken seriously? To meet the right person at the right time? Big dreams will only take you so far; someone needs to give you a chance. And each time I’ve been given a chance, I’ve proven myself, and often gone above and beyond expectations.

I may look successful to you, but in my own mind, I’ve not yet begun to do my life’s work. I do not fit anybody’s mold, and though I’ve never lost a job, I could easily find myself out on the street someday, or back in the mailroom. I take nothing for granted. I have my big dream, and now I’m waiting. Waiting for a chance.

If you would like to network with me professionally, I welcome connections on LinkedIn or Twitter.

Monday, November 1, 2010

Autistics Speaking Day: The Path to Understanding

Today is Autistics Speaking Day, a counter-campaign to the Communication Shutdown. If you’re a first time visitor to my blog, welcome! I’m glad you stopped by.

I disagree with the message of the Shutdown. But I still support you if you’re taking part, because we need awareness and funds raised by any means (that don’t disregard autism facts and science).

I am speaking out, 1) with today’s post, 2) by sharing some of my favorite links on Facebook and Twitter, and 3) by encouraging you to make a charitable donation to an autism organization of your choice. I am supporting my local agency Autism Delaware through my annual United Way contribution. I also recommend GRASP, the Global and Regional Asperger Syndrome Partnership.

I want to begin with a few words about social media. Yes, shutting down your social media for a day draws attention to a cause. No, it does not help you understand how it feels to be autistic. Ironically, you can get perhaps the best explanations of autism via social media.

My own cartoon, Dude, I’m An Aspie! owes its success to social media. And by success, I don’t mean hits, or dollars, but understanding. The project was conceived as a Facebook photo album to disclose to my friends, and nothing more. By happy coincidence, I posted it exactly one year ago today, 11/1/09. Here are some of the comments my friends made:

“I really enjoyed reading this and learned a lot.”
“Now I understand better, thank you!”
“Very illuminating. Thank you for sharing.”

It was a heartening feeling. I went on to share the cartoon in online Asperger’s communities, to continued praise. 

“Wow, does that ever define me.”
“One of the best ways of explaining AS I've ever read.”
“I've saved a copy to possibly use with my students in the future.”

And from there, "Dude" became a blog, and then a book. So without social media, there would be no "Dude, I’m An Aspie!" How else would I have disclosed if I could not have done it through cartoons? “Um, excuse me, there’s something I need to tell you about myself…” It’s more likely I would not have disclosed at all.

Instead, I’ve done it coherently, confidently, and humorously. Many others have used my cartoon for their disclosure. Over 1,300 individuals have visited my blog in the past 3 months. Indeed, for many of us on the spectrum, social media is truly our comfort zone. It would be unthinkable to shut that down.

I wish you could understand what it’s like to be me. I wish shutting down your social network for a day would do it. I wish my cartoons would do it, but even that gives you just a small glimpse. And just by listening to me does not mean you understand autism.

This is called Autistics Speaking Day, but I don’t speak for autistics. I speak for myself, and that’s the best I can do. None of us can speak for all of us. The autism blogosphere is richly diverse. We are the pro-cure and the pro-neurodiversity, the nonverbal and the Aspies, the diagnosed and the self-identified. We often disagree, to put it mildly.

Among us are bloggers who have viciously attacked others as “faux autistics” because they can hold down a job, act natural on camera, or dare to align themselves with the dreaded Autism Speaks. At the other end of the spectrum are bloggers who are happily married with families, and are published authors, or eloquent speakers. Both get under my skin for very different reasons. But I would not silence any of their voices. We need to hear from them all, and I include in “we” the autistic community as well as neurotypicals. Kathleen Leopold and Kim Wombles of the Autism Blogs Directory said it best:

“We are a community; we share common bonds and common ground, and we need, even as we disagree, to remember this. Because if we don't, we destroy what common ground we have.”

I think no statement better describes my hopes for Autistics Speaking Day. It explains why I also support the Shutdown. I have only been an autism advocate for about a year, but I have worked in the non-profit arena for nearly a decade. If you want to bring about change for an issue as complex as autism, you must build consensus and respect diversity. Anger and infighting will get you nowhere. The hostility and name-calling I’ve seen from both sides around the Shutdown and Autistics Speaking is shameful, and nauseating.

Which brings us back to the question, how can you understand autism? When you’ve met one autistic, you’ve met one autistic. Is understanding even possible with such diversity? I think so, and here’s how:

You can never understand us as a block, by lumping us all together. Only as individuals. I think that goes for understanding people. Not just autistic people, but gay people, or Tea Party people, or Muslim people, or whatever. Sit down, open your mind, and listen to us one at a time. That’s the best you can do.

So I encourage you, after you’ve visited my blog, to check out other voices in our community. If you see something you like, leave a comment, or share it with your social network. If you’re inclined to donate to a helping organization, thank you. And I hope you’ll stay connected with our community. We need as many voices as we can get, contributing to a passionate, educated, civil discourse about autism. That is the path to understanding.