Tag Archives: autism speaks

world autism day alexandra wrote

Yesterday everyone in Los Angeles was talking going blue for the opening day at Dodger Stadium.

Today let’s talk about going blue, not just in Los Angeles, but around the globe for World Autism Awareness Day (data via Autism Speaks):

  • Autism now affects 1 in 88 children
  • Autism now affects 1 in 54 boys
  • Autism costs a family $60,000 a year on average
  • Autism receives less than 5% of the research funding of many less prevalent childhood diseases
  • The NIH 2012 budget was $30.86 billion
  • The NIH funding that went directly to autism research: $169 million.
  • 0.55% of NIH funds go to the “fastest-growing serious developmental disability in the U.S.”

For family and friends across the spectrum, today I wear blue to celebrate you. xo a.

walk-now-autism-2012-alexandra-wrote

 

alexandra wrote autism speaks walk team frostig

The mardi gras beads look like pearls, no? It's a fancy 5K.

Be the change you wish to see. (I grew up hearing that a lot.) Get involved in what you believe in. (And hearing that.)  Make your voice heard. (That, too.)

But my family didn’t just talk the talk, the walked it, too. Sometimes literally, like just last weekend for the Walk Now for Autism Speaks 5K, here in LA.

Autism effects 1 in 88.

1 in 88 in my family.

1 in 88 amongst family friends.

1 in 88 I do not know.

I only got about 4 hours sleep Friday night, I’d been talking to a friend about the walk in the morning and about the people we both know on the spectrum that we love. That the way they view the world so uniquely is a gift, truly, although the challenges they face by not fitting the mold can be excruciating. The children and adults in my life on the spectrum are all fortunate to have access to great resources and schools, to have informed parents who refused to let them be anything but exactly who they are.

1 in 88. I can’t begin to imagine how many are without those resources. Without the schools and the programs and the therapies and families that can be there and do and understand – all the luxuries that shouldn’t be luxuries. 1 in 88.

monica holloway team frostig autism speaks aw

I walked with a team honoring the AMAZING Frostig Center, where several kids I know had gone to school. The team was led by my friend Monica. Mon’s family is like family – she and her husband both incredible writers and their son Wills, the subject of her award-winning memoir, Cowboy & Wills. I met Mon a few years before C&W, when her first memoir, Driving With Dead People, was released.

I’d seen an ad for it in the New Yorker, but hadn’t read it, when I was called to see if I could do a photo shoot. I was in New York at the time and would be back the day before – it all fit perfectly. I went to their house, did the shoot and as we talked, realized the six degrees of separation (or barely two) between those we knew. It’s a small, small world.

And the world felt even smaller on Saturday. As close to 30,000 people arrived at the Rose Bowl carrying banners and signs, decorated Radio Flyer wagons, in matching shirts or hats. Our tees were a vibrant yellow, seemingly the only ones – until the walk was to begin and we met a team from a school in the Inland Empire in a similar shade of sunshine. The more the merrier, right?

autism speaks walk 5k los angeles alexandra wroteIt was a good morning but a hot one, by the walk’s end around noon it was well over 85 degrees (What’s the hurry summer?). Plus I had my team t-shirt on over my own – and the cardy I wore when it was still chilly at 7, wrapped around my waist. Pink tunic with yellow tee on top plus striped sweater – yeah, it was quite the look.

I arrived at the walk frustrated because I’d left the house with the wrong camera – this one had been acting up and I’d just had it looked at. Unfortunately, whatever they did left the sensor filthy, so photos had these strange spots. Imagine a bokeh filter app gone wrong. Very wrong. Little shadowy spots probably more akin to the symptoms of an impending retinal tear.

I left the walk not caring that the photos would require some time in Photoshop to fix the sensor screw up. Things like that only matter when we give them the attention to make them seem important. And my attention was elsewhere. On the people I was walking for – both there in person and in spirit. On my family and my friends. On the music and the laughter and the 28,000 people gathered for the 1 in 88.

The tagline for Autism Speaks is It’s time to listen.

1 in 88.

Hearing it loud and clear.

For more info on Autism Speaks, visit here. And join the Cowboy & Wills page on Facebook, which is an incredible source for info on autism awareness and news (Monica is an official spokeswoman for both Autism Speaks and the National Center for Family Literacy). And please check out AutismVotes.org – working to create state and federal legislation and policy.

And now, five great things someone else said about helping one another:

Doing nothing for others is the undoing of ourselves. – Horace Mann

When I was a boy and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping. – Fred Rogers, The World According to Mister Rogers: Important Things To Remember

Do your little bit of good where you are; it’s those little bits of good put together that overwhelm the world. – Desmond Tutu

Never doubt that a small group of thoughtful committed people can change the world. Indeed, it is the only thing that ever has. – Margaret Meade

Life’s most persistent and urgent question is, ‘What are you doing for others? ‘ – Martin Luther King Jr.