Friday, June 8, 2007

Last night's appearance at Lifespire in New York

Last night I appeared at Lifespire’s Writers on Autism event at the Empire State Building in New York. Barbara Fischkin, a writer with an autistic son, organized the event and invited us. I read from the prologue to Look Me in the Eye, and answered questions. Other authors included:

* Kim Stagliano, who has written a novel based upon her hopes and dreams, and real life with three autistic girls. I expect her book will be published late in 2008. She read her essay "Crapisode," which gives autistic people who are less impaired – like me – pause for thought.

* Sheila Kohler, a New York City novelist, read a real-life tale about being the parent of a disabled young woman. Sheila Kohler's latest novel is Bluebird, The Invention of Happiness.

* Landon J. Napoleon read from his novel ZigZag.

* Michele Pierce Burns, a writer who is possessed of an almost unnatural level of joy at her child’s existence, read from her forthcoming book, I Love Everything About You. The best way for me to describe her condition is to say it’s the extreme opposite of depression, and it provided a welcome relief.

* Michele Iallonardi, a mother of three boys with autism and a journalist who has written for The Autism Perspective (TAP) magazine, Autism Spectrum Quarterly and Exceptional Parent. She was also in Autism Every Day.

* Rachel Kaplan appeared with her mother, a teacher. Rachel is a student at Hofstra University, who has autism and is traditionally nonverbal. As a graduate of Locust Valley High School on Long Island she won a coveted writing award and, as an acknowledged pioneer in the practice of facilitated communication, she now types independently

* Barbara read a passage about her son, Dan in the World: One of the First Victims of the Autism Epidemic Grows Up, Moves On and Moves Out.

After the readings, we had questions from the audience, many of which were directed at me. As I meet more autistic people and their families I realize what a remarkable thing it is that I am affected enough by Asperger’s to feel, exhibit, and understand many classic behaviors but I am “normal” enough that I can express those feelings through my writing and speech.

I hope the insights into my own thoughts and feelings prove relevant and useful to those in attendance, dealing with autism in their own families and lives. For me, the high point of the event came at the end, when Barbara’s autistic son Dan came over and shook my hand.

I’m writing this from my hotel room in New York. In a few minutes, we’ll start driving home to Massachusetts, back to my world of machines. We are travelling today in a BMW 540 that we rebuilt in my shop after it was abandoned by a former owner who experienced three transmission failures in a row. When I got the car, I discovered the reason the transmission had failed repeatedly: whomever replaced it the first time installed the wrong one, and the subsequent replacement was wrong too.

Now that the correct parts are back in the car, and its other issues have been addressed, it drives like new.

There is a parallel between the world of autism and the world of car repair. The biggest problems for both come from lack of knowledge, or well-meaning actions based upon wrong “knowledge.” I hope that further study of highly functional autistic minds like Daniel Tammet’s, Temple Grandin’s, and mine will provide insight and a basis for better decisions in the future. As more HF autistics come forward, such a result seems inevitable and it can’t come soon enough for all the affected families out there.

14 comments:

kristen said...

John,
Sounds like it was a wonderful event and I'm sorry I missed it. Thank you for what you do and for what you are willing to share. Your insights are more than relevant.

Trish Ryan said...

Nice parallel between the car and the results of some treatments. It's true in so many areas of life - if you don't have the right parts, the whole thing won't work.

Maprilynne said...

Wow! I had no idea there were so many upcoming books about Autism and Asperger's. That's so wonderful that the word is getting out. People with Autism, high or low functioning, are so unique and fascinating!

Holly Kennedy said...

What a great comparative analogy
between the car and getting
appropriate treatment :)

It sounds like you had a great evening and a good turn out. I would have loved to have been there, but it's not a quick jaunt from western Canada to New York.

Kim Stagliano said...

My 12 year old with autism was not FASCINATING at dinner out tonight. However, she was definitely UNIQUE. Aye yi yi! You wonder why I'm a size 4 with room to spare? Who has time to eat??? Can you say "agita?"

John was the star of the reading because the parents are dying to hear him talk about what our kids are thinking and feeling. We autism Mom's will catapult his book to the best seller lists...

And I met John's very lovely wife. A pretty blonde with a beautiful smile and real love in her eyes for her mate.

Woof.

The Anti-Wife said...

Thanks for visiting my blog and voting for my house color.

My nephew - now 14 - is autistic. He functions very well, but my sister and brother-in-law have spent a lot of time learning all they can and helping him. They've also spent a lot of time educating people in their school systems about autism. It's amazing how little attention it receives considering how prevalent it is.

mcewen said...

"and it can’t come soon enough" - hear, hear.
Best wishes

ORION said...

Back from Norway and back to reading blogs...
This was wonderful John. I would really have liked to have been there.
I echo the sentiments of the rest when I say it is a much needed book at an opportune time.
P

Polly said...

So many adults have not reached their potentials because they were misunderstood or did not receive the proper guidance when young (and it's still happening to so many youngsters today.) Add the high social prevalence of various childhood abuses and families with addictions into the mix and you have tons of kids who never had a chance. Imagine all of the Aspergians who are in prison, mental hospitals, or homeless as a result. You are lucky you got out when you did and found your way by yourself. Many don't.

"insight and a basis for better decisions in the future. As more HF autistics come forward, such a result seems inevitable and it can’t come soon enough for "

You said a mouthful.

Keep up the great work big fella.

Kanani said...

John,

I'm looking forward to more people like you stepping forward to make changes in our public policy that upholds anemic school offerings. Their collective fierceness is needed to address mental health access, and most of all to prove that being HFA isn't bad at all.

It means so much more when successful HFA's can add to the voices of the parents and other specialists and help to craft humane and nuturing public policy that helps everyone in the end.

Drama Mama said...

LOVE the car analogy.

Tagged you on my blog.

Wanna play?

appletini said...

I agree, i hope that we find a solution to end this autism epidemic. I began to work with children with autism 10 years ago, and I have never seen it as wide spread as it is today :(

CDC not for me said...

Appletini - the NYTimes yesterday ran an editorial "There is no autism epidemic." I kid you not. That's what the epidemiological and anthropology experts would have you believe. That the Times ran the editorial on the day of the autism/vaccine trial was interesting indeed. There is a full court press in the national media to make sure parents DO NOT connect autism to vaccines in any way. Are there ANY drugs you trust from Big Pharma right now? Avandia? Celebrex? Top docs in the nation are saying "Wait! This drug isn't safe! You lied in your studies!" and yet we're supposed to believe the vaccination program is 100% solid, safe. "TRUST US MOMMY."

Oh, and to the argument that mercury has been removed from almost all childhood vaccines except flu? True. EXCEPT now pregnant women are given flu shots, with the full 25 micrograms of mercury - into their teensy tinsy FETUS -- I'd call that vaccinating the baby, wouldn't you?? After all, 40% of newborns have antibodies for flu - proof the vaccine affects the fetus. So your autistic kid won't get flu. Feel better, Mom?

thismom.com said...

what a fascinating event. i wish i could have been there. i also await the words of more people with autism at all levels of 'functioning' to enlightened and educate the rest of us who may be, unwittingly, sticking the wrong transmissions into beautiful cars.