Monday, October 25, 2010

My friend couldn’t find the paper. He had the cardboard, the paper fasteners, the glue, and the decorative wrapping paper. Everything he needed for the journal we were making that day in 5th grade art class, except the paper for the pages. So he did what any 5th grader would do, inquire loudly to the room:

“Where the paypaaaaa?!?”

And with this outburst, it suddenly became clear to me what I would do with my own journal. I opened it to the first blank page, took out a pen, and began to write.

“Where the paypaaaaa?!?” - Dominic

And thus, I had begun the Sayings Book.

In 5th grade, my friends were the neurotypicals, sociable and highly quotable. And me, the undiagnosed Aspie, I recorded. Why were sayings of so much interest to me? To understand how they socialized? To compile a catalog? To add to the conversation in my own way? I’m not sure. It just came naturally.

The Sayings Book captured everyday life. The unexpected, the comical, the absurd, the random.

At lunch time.“A spaghetti sandwich is so good to eat!” – Molly

In the computer lab, confusing the Logo turtle. “I don’t know how to Molly.” – Computer

There was Mr. Young, the custodian, who opened the front doors of the school to a stampede every morning. “Stop pooshin’, stop pooshin’.”

There was the lunch lady who manned the checkout counter like an assembly line. “You gettin’ anythin’ else, honey?”

There was the bus driver who inexplicably forbid our band instruments from sitting in our seats with us. “Up! We can’t take that suitcase back there!”

There was Mr. Carpenter, the existential gym teacher, who supervised the cafeteria at lunch time. “You throw pretzels when you sit in high chairs.”

It captured ourselves. As friends, we shared a bond of creativity, awareness, and silliness. Our core group were the gifted and talented, the teachers’ darlings, well-liked by our peers, snarky and irreverent amongst ourselves. The world was our Chief Crunchie for the taking.

Once the others realized they were being recorded, the Sayings Book gained notoriety. “Did you write that one down?” “Let me see!” It went everywhere with me. Instant catch phrases like, “That’s dumb!”were born and repeated, like a secret code. I took the disposable and gave it permanence. And yes, I appeared in the book as well, although much less frequently.

Then, there were the songs. A song was no less wacky than a saying, just longer, and with a melody. My friend Tracy started a series of bird-themed songs.

The bird, the bird, the big fat Molly bird,

Singing in his perch till dayyy-break,

Until he lays an egg, crack!

Then somebody takes the egg, and turns it into scrambled eggs,

Then it turns to mush, and then the person that ate it died,

Then it turns to meat,

And then the cow barfed,

[something something I forget]

Then a little Q-Bert came along and ate the cow.

Then Q-Bert licked a lollipop, and the cow was on the lollipop.

[something more I forget]

And the little bird died, playing a guitar.

And we did a whole series of Christmas song parodies.

Deck the halls with little Beadies, fa la la la la, la la la la.

Go to the store and buy them Wheaties, fa la la la la, la la la la.

Beadies love to eat them Wheaties, fa la la la la, la la la la.

They will give none to the needies, fa la la la la, la la la la!

The Sayings Book captured moments. It seemed we would always be this way. Always cracking each other up, always riffing on the world around us, always inhabiting our own little corner of the universe where we made the rules. There were no thoughts of middle school, and going our separate ways. No thoughts, until the time came.

I kept the Sayings Book years after I wrote its last entry. Years after I had lost touch with the cast of characters. Until I finally concluded that getting back in touch was never happening, and it seemed overly sentimental to hold onto this childish nostalgia any longer.

Not long afterward, Facebook came along, which as we all know, renders “never” a very short time. Many of us have reconnected. And wouldn’t you know, over 20 years later, one of the first things they recall is the Sayings Book. In fact, in a knock-me-out-of-my-chair moment, it was through a comment about the Sayings Book that I found a long-lost friend under an assumed name. They all ask me, “Do you still have it?” and I have to say no. But much of it stayed in my head, so ingrained was its mythology, and that lessens my regrets somewhat.

We realize now what we didn’t then, the value of this primary source, this time capsule. Nowadays, it’s so easy to preserve the present moment, with our cell phone cameras, videos, status updates, and Twitter. But I don’t think any of those things captures kids being kids in quite the same way as I did with an art class journal and a pen.

If a picture is worth a thousand words, a Sayings Book is worth a thousand stories. In today’s often ridiculous times of career and bills and other burdens of adulthood, it’s worth remembering the way we were, when we were a different kind of ridiculous. When we could ponder the important things, like, what wasa strep with feet? And what is the proper response to “Let’s change brains?” And what compelled Juan to ask the science teacher, “What is breakfast?”

And I, for one, am wracking my brain trying to remember what came after “And then the cow barfed.” I know it was something important.

Thursday, October 21, 2010

Yesterday I had the privilege to attend a conference featuring Tony Attwood in Harrisburg, Pennsylvania. It turned out to be quite an amazing experience, in large part due to my chance to meet Dr. Attwood and to share my cartoons with him. But that came at the end of a long and informative day, so I’m jumping ahead of myself.

I have wanted to go to an autism conference for some time, and this was my first chance. It was a two-hour drive to Harrisburg, so I had to set out very early (in the dark and the fog) to make the 8:30 start. It’s a rather beautiful city, from what I saw of it, although there was horrendous traffic coming home as we crawled a half a mile in a half hour along Route 11. Hopefully, I just caught Harrisburg on a bad day.

It was a Very Important Conference!

The conference was mostly attended by professionals, teachers, and parents, as indicated by their asking for a show of hands at the introduction. There were a few people with Asperger's, but they didn't ask us to raise our hands (even though we were encouraged to attend with a special discounted rate).

Dr. Attwood’s topic was listed as “Making Friends and Managing Feelings,” but he covered much more than this. Here are just a few highlights:

In Australia, he said, the Aspies speak with an American accent because they learn language from TV. This was one of many comments that drew laughs throughout the day.

On the subject of AS being hereditary: "If someone didn't fall in love with an Aspie, it would have died out years ago!"

He described the feeling of being a ghost in a crowd of people when no one is noticing or responding to you.

He spent some time promoting some of his latest projects, including the CAT Kit for visualizing feelings, and the Exploring Feelings Program.

He spoke at length about Asperger's in girls and how they camouflage it.

He mentioned Gary McKinnon and suggested he should be hired by the CIA rather than prosecuted for cracking codes.

He talked about his remarkable Aspie sister-in-law who married a man 30 years older, and their happy marriage which lasted 27 years until his death.

To an audience question on the proposed changes in the DSM-V, he voiced his opposition to the removal of Asperger's. The term helps many, he said, and changing it will not help understanding. “Mild autism” is not mild for the person who’s got it, and is more likely to be met with skepticism upon disclosure. “What are they thinking? They don’t realize the consequences [of removing Asperger’s,]” he said.

To another question on whether AS should be disclosed in a job interview, he advised to be cautious, perhaps wait until you've got the job, or prepare a brochure listing your strengths and weaknesses.

Dr. Attwood was a very engaging speaker and easy to listen to for 6 hours. I highly recommend you go and see him if you get a chance.

Which brings me to the end of the day when he graciously stuck around for book signings and an informal meet and greet. I came prepared with my copy of “The Complete Guide to Asperger’s Syndrome,” just in case. I also brought a copy of “Dude, I’m An Aspie!” thinking I might show it to some fellow attendees. When the time came to meet the “Asperger’s guru,” as intimidating as it was, I picked up both books and took my place in line.

Much to my surprise and delight, Dr. Attwood not only wanted to look at my book, but he very much enjoyed it. He laughed out loud at the “freshly ground autism/just a dash” cartoon. "This should be published!" he said, leafing through the pages. The conference organizer, who is also a publisher of autism books, was standing next to us, and she took my information and asked me to send her a copy. I only had the one copy on me, and Dr. Attwood said, “I’m keeping this one, since I love it so much!” (Of course I said yes, even though it was my own copy!) Then he asked, “Would you sign it for me? We’ll trade!” So I did.

All in all, it was quite thrilling. No matter what comes of this, to get such a compliment from someone whose book I referenced in my own, means a great deal. You just never know. I guess that’s why I didn’t mind the traffic so much, inching along the congested Route 11, unable to wipe the ear-to-ear grin off my face.

Sunday, October 17, 2010

With apologies to Leonard Cohen, some new and timely verses to one of his well-known songs.

And who by words of fire,
who by ice cold shoulder,
who by recess ridicule,
who by playground put-down,
who with sneers and slurs,
who when the teacher’s back is turned,
who by lunch table lockout,
who by yo-yo friendship,
And who
shall I say
is calling?

And who in stairwell secrecy,
who by mimicry,
who by sing-song serenade,
who by twisted nickname,
who by scornful snickering,
who by tackling,
who by tolerated torment,
who by contemptuous comment,
And who
shall I say
is calling?

And who by exclusion,
who by omission,
who by insinuation,
who by nomination,
who by intimidation,
who by provocation,
who by mock molestation,
who for the lulz,
And who
shall I say
is calling?

And who by anonymous phone call,
who by text message torpedo,
who by human blockade,
who with a hostage house-key,
who by footprint faceplant
who by saliva salvos,
who in a toppled port-a-john,
who by webcam invasion,
And who
shall I say
is calling?

And who with shattered self-esteem,
who with self-directed blame,
who by building barriers,
who forever feeling flawed,
who shamed into silence,
who with exterminated trust,
who with the everlasting echo,
who with scars that never heal,
And who
shall I say
is calling?

Sunday, October 10, 2010

Imagine, if you will, a residential home for autistic adults, but instead of an institutional building, a 400 acre farm. And instead of a paid staff of aides on rotating shifts, care is provided by fellow residents who live full time on site. And instead of sitting in a room in front of a large TV, the residents spend their days at work in the gardens, or baking bread, or weaving rugs, producing retail goods they sell for profit.

An idealistic pipe dream? Something out of fiction? Nope, it’s the real thing. I had occasion recently to learn about the Camphill movement. I found it compelling, curious, and inspiring, and I wanted to share with you what I learned.

Camphill villages are farming and handcrafting communities that include adults with developmental disabilities, such as autism and Down syndrome. The model was developed in 1939 by Karl Koenig, and today there are more than 100 communities worldwide. Central to the concept is anthroposophy, the idea of respect for the spiritual wholeness of each person and the human possibilities to evolve toward freedom and love.

Non-disabled resident volunteers live and work side by side with those with special needs. Some stay a year as part of an AmeriCorps-type program; others stay for years or a lifetime. They share meals and household responsibilities. The village sells its organic produce, baked goods, and crafts at a café open to the public, and at Whole Foods. They host concerts and festivals. There’s also the Waldorf school branch of Camphill, serving children with special needs. And, if that all wasn’t enough, all Camphill technology is green, from the sustainable agriculture to the construction of the residences.

Are you a bit awe-struck? I must say I am. Here's a relatively little-known organization with progressive solutions to many of our most challenging societal problems, all in one place. Perhaps most impressive is that the abled and disabled are treated as equals. We often say that’s what we most wish for, for autistic persons, the disappearance of different-ness. Camphill is a community in the realest sense. “I stopped seeing people with disabilities, and now I just see people,” commented one service volunteer in the recent Camphill publication, Lilipoh.

Why isn’t Camphill better known? It seems positively utopian in its outlook, and at the same time, somewhat radical. The villages are not licensed treatment facilities. They are supported by donations, grants, sales, and family support. They don’t collect detailed data on outcomes for residents and whether their lives improve. Despite the 70-year history of the movement, there seems to be no scientific comparison with traditional group homes. Indeed, little evidence suggests Camphill does a better job at caring for the disabled.

“The Camphill communities… are widely known of, but little known about; often lauded, sometimes condemned but rarely understood,” according to a review by Baron and Haldane (1991). A study of the 600 Waldorf schools worldwide found “there appears to be no research based evidence to its effectiveness for those with autism or other developmental disability.” (Roberts 2004) Most recently, a study in Ireland compared 29 residents of a Camphill community with 125 residents of a traditional group home. Camphill was found to have higher staff:resident ratios, more homely living areas, and less of an institutional feel, but was not found to be better on a range of other objective measures (Fahey et al. 2010).

So without scientific proof of effectiveness (or ineffectiveness), it seems that further comparative studies should be done. If the Camphill model could gain evidence-based status, then it could expand beyond its seven sites in the U.S. If it has weaknesses, then researchers could work toward improving the model. At a time when residential homes are needed, expensive, and challenging to operate, we should fully investigate promising alternative models.

Whether or not that happens, the Camphill movement remains fascinating. I plan to keep attuned to the goings-on at my local Camphill branch in Kimberton, PA, perhaps check out a musical performance or pick up some freshly baked cookies at the café. It might be nice to volunteer for a day, get a window into a different rhythm of life, where the food is slow, the workers are like family, and the boundaries between us disappear. If you have the chance to visit a village, I hope you will, too.