Awareness? Acceptance! Accommodation…

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Today is Autism Acceptance Day.

Tomorrow is Autism Awareness Day.

Next week the boys have their birthdays.

This month is supposed to be devoted to Autism.

After today, I realize more than ever the need for accommodations for Autistic children and adults. I observed my Stephen at school. I had my meeting for Daniel’s upcoming IEP meeting this afternoon. My mind however kept going back to this Wandering code. To be honest, it’s because of the accommodations, services and goals both the boys need.

Daniel is your “classic” wanderer. The one that will walk out of the classroom. The one that will bolt outside. The one you have to stay close to, and even hold his hand when he’s in “that mood.” Stephen is your “typical” wanderer. The one that walks around the classroom. The one that sees something shiny and goes to it. The one that needs to be reminded to sit down. He will bolt too, but always within safety and always for attention as he loves the chase.

At soccer, people consider Stephen to be our runner. At school, people consider Daniel to be our runner. They are both right. Stephen can run like the wind when he’s playing. Daniel runs faster than the wind when he’s escaping a situation. To anyone who watches, they just both look like runners, wanderers, elopers. Honestly, they both have a function in the behavior. The place it diverges is that one runs safely, and the other dangerously.

So what is this getting at? Well, earlier this week, a mother read my post to the Wandering Code and we had an argument. This happens and I finally stopped replying. But one of the things she said made me think.

what the CDC seems to see is easier access to funding specifically FOR research and education….. Coming up with conclusions is the whole idea but that doesn’t happen without funding and education. Funding and education, especially in the current service-slashing environment, doesn’t happen without certain paperwork, definitions and stamps of approval.

The reason so many want this code is for funding. There’s not enough funding to go around. I think of particular interest is this page on IACC website. We see how much funding there was in 2008. (Sorry, don’t see anything more recent.) 37% of all research dollars go to finding a cause and cure for Autism. Yes, I realize 24% goes to interventions and treatments. But to look closer, only 5% goes to studying Autistic adults? My point is, if you are worried about where research dollars are going to come from, try speaking at the IACC about the fact that you need help with your child now. That funding cause and cure research over helping those here and now is foolish.

A diagnostic code isn’t going to change where the funding comes from. You will still be fighting over that same 24%. Then what? There are interventions for children that could help your child communicate. There are interventions that can help your child be more independent. There are interventions that can help your child lead productive lives as adults. Do you want to take away all those opportunities for your child? The child a few years younger? Or would you rather speak up now and get more research funds to go to helping your child?

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