He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are a daily ritual. He's made it more complex as he's developed, but the basics are the same. There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until he is ready to be.

This is James, and this is our story.

Friday, May 13, 2011

The New Autism Numbers

The other day a study was announced showing that 1 in 38 children have a form of Autism.  I was floored. I mean, the bumper sticker on my car says 1 in 150 and I only got that because the same year James was diagnosed, it jumped from 160 to 150 and I thought that was insane.  1 in 38? Unfathomable.

So, I did what I always do when I can't believe what just happened.  I asked my Facebook friends.  I asked everyone to tell me if they knew anyone diagnosed on the Autism Spectrum of Disorders.  I got 37 replies in less than 24 hours.  If you assume (as I always do) that at least 1/3 of my friends hide my posts and a lot more of my friends don't even log in on a daily basis, this is an astounding response.  Of course it isn't any surprise to you reading this because you know that many of the friends I've made during this journey were as a direct result of the diagnosis, but here is the kicker: most of the friends who responded were from college, or from my hometown.  And the most amazing responses?  Multiple friends who described their neighborhood with more than one child on the spectrum.  One friend has 1 out of 3 children on her street with a diagnosis.

So what do I think about the study, and the new numbers?  From what I've seen, the study seems sound.  It covered a specific area of South Korea and included 55,000 children from age 7-14 (All the children, not just ones with a diagnosis).  Researchers agreed that the study was applicable on a global scale.  The "1" included children who met all different levels of criteria to be determined on the spectrum, some so high functioning that you might just think they have "quirks".  What the study reminds us is that even those individuals with quirks require a support system in order to navigate this confusing world and to be the best they can.

I'm glad I watched the Today Show interviews of the study after I heard from my FB friends, because instead of obsessing about "1 in 38",  I was thinking about those neighborhoods I just heard about.  I realized that we all interact daily with someone who has Autism, even if they don't flap their arms or frog hop, or their family doesn't have the bumper sticker on their car.  What it means to us is that the person we are talking to might not understand the facial expressions we are using, or might interpret what we saying literally and get confused.  Or that they might be so preoccupied by the plane flying overhead that they can't even hear what we are saying.

I appreciate the responses I got from my friends because I know they care.  I know that each of them took an effort to find out if the person in their neighborhood needs some extra support, and that they will continue to reach out to those individuals.  I know they will tell others of the person in their neighborhood.  Their efforts will multiply to their own friends, and this way we will continue to build a support network for our neighbors.  And how great will it be when the numbers of people creating the support network surpass 1 in 38?
Today Show story and interview about the Autism Speaks study

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