Swimming Against the Tide: Twitter, Etsy, & "Autism Awareness"

Everyone, some academic types included, seems to be a-twitter about Twitter. If you're so inclined, you  can follow me atautismvox. I'm all Facebook'd and webpage'd up too, not to mention a constant user of boring old email. Since Charlie's needs have long made "going out and socializing" a not very frequent occurrence for Jim and me----sure we'd like to but finding a properly trained and experienced babysitter is very difficult (and we've tried)--- the various tools of social networking have made it possible to reach out and stay in touch with family and friends.

My friend Madeline McEwen-Asker lives in California (of which I'm a native of; she hails from other parts and climes). We've never actually met and I've long been a most grateful reader of her blog, Whitterer on Autism. I always smile at the very least when reading Maddy's writing----I usually start laughing into my computer screen to the point of ROFL before I even finish a post. Maddy has two sons on the spectrum and she's an agile chronicler of moments and days that, although I've only one son (and nary a pet), mirror ours very often.

Another reason to read Whitterer on Autism is that Maddy is a multi-talent, who illustrates her posts not only with photos but also with her own drawings (which capture a lot of expression and emotion in a few lines) and, occasionally, photographs of her pottery. And it's one of her pieces---a little bowl in a rich green hue carved with a whole school of fishes and one little fish swimming against the tide---that's in the photo gracing this post. Did I copy and upload the photo from MacMaddy via her Etsy shop?

No! It's a photo with one of Charlie's yellow blankets as the background 'cuz I saw the bowl, I bought the bowl, Maddy shipped it and it came so fast, and Charlie and I gave it to Jim for a belated birthday present. Not that Jim's a connoisseur or collector of all things ceramic: I've been wanting to see Maddy's work for reals and the pattern of the one fish swimming against the tide---that's Charlie in a nutshell (in a fishbowl?).

Seeing the many fish (looking so many alpha's, the first letter of the Greek alphabet) swimming in one direction and the one little fish persevering the opposite way, I instantly recalled a photo of Charlie taken in April of 2000. We were in Washington, D.C., for an autism rally, and were walking on the Mall and were at the Vietnam Memorial. In the photo, almost everyone is walking one way, except for a dark haired boy in a pale green striped shirt and olive pants: Charlie. As swimming against the tide does run in our family, we got the little bowl for Jim (for an idea of why, you'll have to read his forthcoming book).

Here's what Maddy has to say about her "small contribution":

As some of you may already know, “April” is “Autism” “Awareness” month. Whilst this is a “controversial” “matter” I would like to help people understand that an autism diagnoses does not mean that my ‘real’ children were not stolen nor is it worse than cancer nor death. These perspectives are a great dis-service to people, “parents and children” who struggle with those real tragedies. Autistic people and those with special needs deserve to be treated with the same dignity and respect that we offer everyone else on the planet.

As I am now on “Etsy,” I am offering this bowl, shipped for free anywhere in the World, as my small contribution.

And then there's a photo of a bowl, not the one we gave to Jim, but in the same "forest green slip."

I don't know if you're feeling like another of my online friends (and mother of two children on the spectrum), Bonnie Sayers, if perhaps you are tiring of Autism Awareness Month because much if not everything that has been heard about the month does not seem to have a direct impact on the lives of our (ever-growing) children; does not seem to be advancing understanding and knowledge of autism. Walks and fundraisers and "awareness campaigns" have their place, but individuals on the spectrum and their families and those who support them have real needs that really need to be met soon, as in now. We need solutions in the form of policies and programs; we need more trained staff to work with our individuals on the spectrum.

Have we gotten so "aware" about autism that we're in danger of forgetting that autism is all about people, real people, who are right here among us, and who aren't getting the education, accommodations, housing, jobs, services they are quite aware that they need?

So, "Swimming Against the Tide." It's a fitting, and a refreshing, message for autism "awareness," and a more potent symbol than the ubiquitous-this-month puzzle piece. Because swimming upstream with a crowd of unaware others moving in the opposite direction: That's what life with autism can feel like and often just is.

Thank you, Maddy and Bonnie! Advocacy, one fish (dish?) at a time.........