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World Autism Awareness Day

The month of April has been named Autism Awareness Month, and yesterday in particular was World Autism Awareness Day. Some pretty cool things happened all around the world, particularly with the Autism Speaks Light It Up Blue campaign. The Empire State Building in New York City was illuminated blue, as was the Sydney Opera House in Australia. I saw a fair amount of activity on both Facebook and Twitter related to autism awareness, and it was pretty nice. And weird. I mean, I'm already aware of autism. A friend of my wife, who also has two autistic sons, commented that it was "Me Awareness Day" and that just about sums up my feelings.

It's funny, I have spent the majority of the last two decades dealing with autism on a very personal level. It has quite literally circumscribed my life. Every major decision I have made since Ben was born has passed through the filter of "how will this effect my son?" I have done my level best to be a good father, and I guess if you ask the people around me they will tell you that I have been successful. But the weird thing is, a part of me feels like a complete failure because I have not gone all Lorenzo's Oil on autism and spent all of my waking hours searching for a cure. My wife once commented that she thought it was kind of odd that I wasn't more involved with autism support groups or online communities and such. The truth is, I just don't have the energy. And because of that, I feel guilty. That probably sounds crazy, but there it is.

I remember not all that long after Ben was diagnosed I was searching for books to read about the subject. Back in the mid-90's they were more difficult to find (as opposed to today when any idiot can write a book about it). I stumbled across one that has stuck with me every since, and I would like to take this opportunity to recommend it to you: There's A Boy In Here by Judy Barron and Sean Barron. Published two decades ago, it still holds up well and packs a real punch. The book is presented in alternating sections - first a journal entry from Judy Barron, a mother struggling to raise her autistic son and make sense of all of his baffling behaviors, followed by response from her now-adult son Sean who explains exactly what was going on in his head at the time. It is an astonishing point-counterpoint that absolutely captivated me. 

As a matter of fact, when I started reading the book I could not put it down. I had picked it up at bedtime with the intention of reading the first chapter or two, and as the hours ticked by I was glued to the pages and the astonishing inner world that it portrayed. By the time I turned the last page my alarm clock was going off, and I had to get up and go to work without having slept a wink. At the time I worked in Redmond, WA doing Cluster Server Certification for IBM (don't ask, if I tried to explain it to you it would just put you to sleep). I actually had my own private office, and a giant desk that had solid front and side walls facing my office door, such that I was able to crawl under my desk and take a nap for a few  hours without anyone noticing. Anybody who poked their head into my office would assume I wasn't there and would go looking for me in the lab, and if they didn't find me there they would assume I was taking a break somewhere. I slept, curled up on my office floor under my desk, and dreamed about Benjamin and what he might be able to say to me someday. Reading that book had a profound effect on me, and helped me to understand Ben's behaviors in a way that more clinical books and articles had never managed.

Strangely, the other book that helped me better grasp how Ben perceives the world was Understanding Comics: The Invisible Art by Scott McCloud. It's a book that has nothing at all to do with autism, rather it is an examination of the power of comics as an art form. In chapter two he talks about the vocabulary of comics, going into detail about the power of the icon, and along the way he speaks at length about how we perceive communication and particularly the notion of amplification through simplification. Oddly, as I read this chapter I began to realize that much of this applied directly to Ben and how he processes the vocabulary of the world around him. It is difficult for me to define the connection that was made in my mind, but it has stuck with me ever since. Then again, I am a lifelong fan of comic books. Perhaps it is only natural that my brain would seek a way to transform a passion of my own into a means to understanding my son. Or perhaps I'm just weird.

In any case, I would like to wish a happy Autism Awareness Month and a belated happy World Autism Awareness Day to everyone. Increased awareness leads to increased research and increased support and acceptance for families who desperately need it. The kindnesses that my family have received is something that I treasure and also something which I do not take for granted. Ben's story is not unique, aside from the particulars; there are plenty of other Benjamins out there, smart and funny and weird and awesome and just generally in need of as much love and support as they can get. If you have a Benjamin in your world please give them a hug and a kiss for me. 

2 Comments:
Kessie
"I have not gone all Lorenzo's Oil on autism and spent all of my waking hours searching for a cure"
There isn't a cure anyway. The brains of autistics are wired differently than brains of neurotypical people. Autistics need to be taught about life in a way they can understand and people in charge of teaching them have be openminded and innovative to get lessons to register in the autistics' minds.
That's all well and good, and true as far as it goes. And for higher functioning autistics it's even awesome.

Ben can't wash his own hair. He can't prepare his own food. He can't travel independently or be left unsupervised. Barring some substantial medical breakthrough, Ben will require 24 hour care for the rest of his life. Someday I will die, his mother will die, and Ben will not understand why we aren't there anymore. The truth for me is that I hope someday there *will* be a cure, some kind of therapy that will promote new neural growth and that will allow Ben to function independently as a fully self-actualized adult. The alternative is just too horrifying to think about.

Ben and Snow White

Ben and Snow White

About Shmoolok

The word "shmoolok" is a mashup of the longtime computer handles for my wife and myself ("Shmooby" and "Lokheed", respectively).

I originally created this website to be a place for my family to connect, but it has since grown into something a little different.

As for me -- I am a father, a husband, a son, a software developer, and a writer. On any given day I am not sure how good I am at any of those particular things, but I do try my best.

Thank you for visiting my website.

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