Raising money for autism research

Every fall, my family participates in a fund-raising walk to support autism research. My seven year old son Jay is severely autistic and unable to talk. When we tell people he can’t talk, they often assume that he must still understand things fairly well, but this is not the case. Sometimes I want to explain that Jay has no language, but this is a hard concept to get across quickly. In a practical sense, it means Jay is profoundly apart from the rest of us, and likely always will be. The good news is that, as far as we can tell, Jay doesn’t suffer any mental anguish as a result of his separation. He’s generally a pretty happy kid. His parents had to mourn the passing of the child they thought Jay was. This caused real pain, but crucially this child that did pass away wasn’t Jay. He was a fiction, a projection of the hope that imagines the future can be predicted. When you look into a child’s eyes, what do you see? It’s hard to see the child, so often cloaked by heavy layers of expectation and projection. That is one gift Jay has given me: I have learned the importance of seeing Jay when I look at Jay. It’s a hard lesson to learn.

Dealing with Jay has taught me many valuable lessons, but all the same, I’d rather that you never have to confront autism in your own family. Unless we can understand more about how and why autism happens, there is the increasing and disturbing possibility that you will encounter it in your extended family some day. Research is the only way forward, and research costs money. That’s why I’m asking for your support. Go to the “Walk for Autism” web site and pledge some money for our walk. I’ll thank you right now for doing it.

I am also including below my wife’s annual fund-raising letter.

Dear Family and Friends,

Every 20 minutes, a new child is diagnosed with autism . . .

Another fall has rolled around, and here I am, asking for money for
autism research again! The 2006 Greater Boston Walk for Autism
Research will take place on October 15th, and I’m hoping you can help
by either making a donation or joining our team of walkers.

Last year’s letter was a bit of a downer, so let me report some
encouraging news this year. First, Jay has made some good progress
since he started his current school in May 2005. He is matching
colors, shapes, numbers, letters, and even words! He is nodding and
pointing well to request what he wants, and is fairly reliable at
waving and greeting people if greeted first. At the dinner table at a
recent family vacation in New Hampshire, Jay impressed his
relatives with his vigorous “yeah” and purposeful nodding when asked if he wanted a
favorite food.

I also want to report encouraging news from beyond our family. Since
2001, this fundraising walk, and many others across the country, have
been called the “Walk Far for NAAR”. But in February 2006, NAAR and a
new organization called Autism Speaks decided to combine efforts, with
the name “Autism Speaks”, in order to have one strong voice in the
fight against autism. The Walk is now called simply the “Walk for
Autism Research”, and as always, the money raised will go directly to
fund high quality autism research. (To read about research projects
recently funded by Autism Speaks, go to
http://autismspeaks.org/june_2006_funding.php)
But you might be interested to know that Autism Speaks is also making
a big impact in raising awareness about autism and advocating for the
needs of families affected by autism. For example, in April they won a
coveted three-year public service advertising campaign by the Ad
Council. The first round of commercials is already airing, with the
message that 1 in 166 children are now being diagnosed with autism.
Autism Speaks was founded by Suzanne and Bob Wright, grandparents of a
5-year-old boy with autism. Bob Wright is chairman and CEO of NBC, so
media access for this cause is now greatly enhanced. And in just 18
months, Suzanne Wright’s strong, passionate voice has been making a
difference on Capitol Hill and all over the country.

So the organization behind the Walk has changed, but the cause and the
urgent need remains the same. Please open your hearts (and wallets!)
once again to contribute to cutting-edge, important research into the
causes, preventions, and treatments, and ultimately a cure for autism.
Our goal for Jay’s Team this year is to raise $10,000. You can
contribute online at:

http://www.autismwalk.org/site/TR?px=1091121&pg=personal&fr_id=1165

Or you can mail a check payable to “Autism Speaks” to Wendy Gulley, 11
Belknap Terrace, Watertown, MA 02472. Contributions are
tax-deductible.

Thank you so much for your help. Together we will find a cure for
autism, and put this disorder in the history books.

Wendy Gulley