Farewell To Autism Awareness Month (but not to Autism Awareness)


Don’t relieve a camel of his hump. You may relieve him of being a camel. ~Arabian Proverb

Eliminate the autism, and you eliminate me. ~Parrish Knight

As April comes to an end, so does Autism Awareness Month. One thing I’ve learned about special weeks and special months? They may help increase awareness of a special need for that short period of time, but people, being creatures of habit, will quickly go back to their usual lives after the pretty ribbons and special t-shirts get put away. That’s why I feel like I have to keep writing about autism-related issues at least once in a while here at P&Q. Yes, I’ll keep posting about sports, pop culture, and my memories of the 1980s. But I feel like AS awareness has become “my” cause, and whatever I can do to further that cause, I will do.

I’ve learned a good deal during this month-long project. One of the most telling is that I am capable of writing nearly a post a day, which I didn’t think I could do. I also took part in an autism research study through a local university…helping me discover more about my AS along with that of others. The past six months have been the beginning of a new odyssey for me. Diagnosis, exploration, outreach. It all still feels strange. I would liken it to a woman discovering she’s pregnant for the first time. So much anticipation, and quite a bit of fear.

I don’t know if I’ll eventually become a “voice” for autism in the way that Temple Grandin or John Elder Robison or Lynne Willey have. I’m just an average person with average writing skills. I’m not rich or famous or dazzlingly beautiful. I’m not even particuarly outgoing. Thus, the number of people I can reach is probably limited. Still, I have to think of the famous “starfish” story. I may not be able to make a difference in millions’ lives, but I can make a difference for a few. And those few may not have had anyone who cared in the first place.

One other thing I’ve come to know? I’m not sure I’m on board with Autism Speaks and some of the larger organizations’ missions. Yes, I think a cure for autism is a reasonable goal, and every effort should be made to better understand its causes and roots. In my opinion, the greatest amount of good can be accomplished at a grassroots level. Organizations like GRASP, whose local chapter has been a life-saver for me, and groups of concerned parents coming together. Not some huge national behemoth in New York whose CEO makes six figures a year.

The most important thing I take away from this month is a greater understanding of how I live with AS. For my entire life (over 30 years), I lived thinking there was something terribly wrong with me. Why wasn’t I able to remember people’s names or faces? Why could I memorize entire movie scripts, but not be able to pick up the simplest social cues? How could other women get boyfriends so easily, but not me? Now that I know the answers to some of these questions, I feel relieved, but still anxious. Since there us currently no cure or even a reliable treatment for AS, I live with it. It may not be as serious as cancer or AIDS or diabetes, but it affects me every day. In some ways I’d argue it’s even more crippling. There are times when I curl into a little ball, almost catatonic. There are other times when my heart beats as fast as a bird’s because I’m so socially anxious. On the flip side, I get a near-photographic memory, a childlike sense of wonder, and a wide streak of independence. Tradeoff.

Where do I go from here? For starters, I keep working with my local GRASP chapter to keep a handle on my life. Its chair, Dena Gassner, is a beacon for all Aspies. I’m so lucky to know her. I keep writing, keep reading, keep trying to make sense of the mysteries of autism (the symbol is a puzzle piece for a good reason.) Hopefully not to disappoint some of my readers, but I will keep writing a post every now and then about my life on the spectrum. I’ll also write about my crazy special interests. Writing P&Q, after all, is much cheaper and more effective than therapy.

And to all my Aspie readers, including parents, teachers and friends of Aspies, I’d always love to hear from you. Future topics? Interesting stories? Ideas? I’m open for all of them.

So, in short, I hope to keep Autism Awareness going year-round. It’s too important to me, and millions of others, to limit to just one month out of the year.

Thanks to all who have supported and read throughout April. Tomorrow’s post: a one-year retrospective on the Nashville floods which changed my life and thousands of others. Can’t believe it’s been a year…

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~ by Howlin' Mad Heather on May 1, 2011.

2 Responses to “Farewell To Autism Awareness Month (but not to Autism Awareness)”

  1. my best friends son is autistic. thank you for keeping autism on the front burner.

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