Autism Speaks walk this Sunday

It’s nostalgia week here at the old Star Chamber. Watching the Red Sox disintegrate over the past few weeks took me back to a time before 2004 when anguish and baseball were essentially the same word here in Boston. It reminded me of an essay I wrote back in 2003: What Being the Father of an Autistic Son Taught Me About Being a Red Sox Fan (and vice versa).

That was eight years ago. The Red Sox have enjoyed some great seasons since then, the sting of recent events notwithstanding. But my son Jay continues to be a challenge. He still has no words to tell us what’s bothering him, whether it’s hunger, a headache, or a terrible sore throat (we learned just today that he has strep and may have had it for a while), so he gets frustrated. We do too. As a growing 12-year-old, he is bigger and stronger, much stronger than he was in 2003. When he gets angry and aggressive, keeping him and the people around him safe can be a terrifying exercise. It’s not an experience I’d recommend.

That’s what the Autism Speaks walk is all about: stopping other dads in the future, other moms, and other families from having to deal with raging choking sobbing face of autism, with the thrashing digging claws of autism, with the enduring biting sadness of autism. This Sunday, October 2nd, we’ll be doing our annual pilgrimage to Suffolk Downs to take part in the 2011 Walk Now for Autism event.

Come join us! Or, hey, here’s another idea. If you can’t make it (and I know how busy you are), then you can have some of your money join us instead. We promise to show it a good time, and then we’ll send it off to Autism Speaks to help kids like Jay. Your money will have fun, you’ll feel good, I’ll be happy. Everybody wins!

Here’s the part where you reach for your wallet and click on a link:

bit.ly/walk4jay

I’ll conclude by adding the note my wife Wendy sent out this year:



Dear Family and Friends,

A few weeks ago I received a mailing from Autism Speaks. It was a press release with some findings from the Baby Siblings research project that Carolyn and I had participated in years ago. The headline in all caps announced: “STUDY FINDS RISK OF AUTISM AMONG YOUNGER SIBLINGS OF A CHILD WITH AUTISM MUCH GREATER THAN PREVIOUSLY REPORTED”.

With that headline, my mind flashed back to a beautiful morning in the spring of 2001. I was sitting on my back deck, reading a book about autism, trying to learn as much as I could about this new world I had recently been thrust into. I remember amazingly good weather that spring, as if nature was trying to help keep me from despair. I did lots of quiet crying on that deck during those warm, sunny days, reading about autism and thinking about Jay, then two years old. On that particular morning, I came upon this statistic in my reading: that the rate of autism in a sibling of a child with autism is 5 to 10%. No quiet crying then; I sobbed and sobbed with abandon, feeling I had been dealt a second blow almost as bad as the first, feeling like my womb was cursed. At that time, the rate of autism in general was estimated to be 1 in 500. If Ned and I had managed to defy those long odds and have one child with autism, it seemed way too likely that our next child would defy 1 in 10 odds to also have autism. And the stakes for our lives were unbearably high.

Back to a few weeks ago. I quickly scanned the press release for the new statistic just announced from the Baby Siblings project: 19 percent of younger siblings of children with ASD developed autism, and for males the rate was 26 percent! I imagined all the sobbing that was going on that day all over the world, as “autism moms” who wanted to have more children heard this horrible statistic. And I breathed a sigh of relief and gratitude, that Carolyn was one of the 81 percent of siblings in that study that did not turn out to develop autism.

It has become increasingly common to hear of families with three, four, or even five children on the autism spectrum. In fact, the same sibling study also reported that if there were two kids with autism in the family, the risk for the third child was more than 32 percent. How will these ever-increasing autism rates affect a couple’s decision of how many children to have? How much are they already affecting these decisions? With a rate of 1 in 110 now for all children, how many couples are choosing to not even risk having one child? How many expectant mothers these days are more anxious than excited about their future? And, just how much worse will the rates of autism get?

While I can’t answer these questions, I can do my part by raising money for Autism Speaks.The Greater Boston Walk Now for Autism Speaks will take place on October 2nd at Suffolk Downs in Boston. We walk, as always, in support of Jay, now 12 years old, and all those affected by autism. This includes the parents and the parents-to-be. This includes all of us really, for autism has become so prevalent and is costing society and schools so much that it is affecting everyone in some way.

This year’s tagline for the Autism Speaks Walks is: “Research, Awareness, Compassion.” Autism Speaks spends its funds on important scientific research on autism, on lobbying for laws and support to help those with autism, and on programs in communities nationwide that improve the lives of those with autism. Please visit http://www.autismspeaks.org/ and click on “science”, “advocacy” and “family services” to read about their exciting efforts in these three areas.

We ask you to join us in raising funds for Autism Speaks by making a contribution in support of our Walk. If you live in the Boston area, we also welcome you to join our team, “The Jay Walkers,” and thousands of other walkers at Suffolk Downs in East Boston on October 2nd.
Whatever you can give will help! We greatly appreciate your support and will let you know how much we raised after the Walk. To make a secure, online donation by credit card go to:

www.walknowforautismspeaks.org/greaterboston/gulley

Or you may make a check payable to Autism Speaks and mail it to me at 11 Belknap Terrace, Watertown, MA, 02472.

With gratitude,

Wendy Gulley