Lots of things have brought about this post. It is a culmination of events over the past few years. When we moved to Dallas, I found most everyone was biomed. Those that weren’t became so. I love many of these people as people. They are kind, caring and supportive individuals.

I constantly hear, “you’re such an inspiration.” “You give me such hope for my child.” Or even, “Your son doesn’t look Autistic.” “Your kids are doing so great.” “It’s obvious you’re a great parent.” I like some of these, feel ambivalent to others and love the rest. And I hear these sorts of things directed to other Autistics.

I can’t say I understand all of what’s said. We are just people living our lives.

But what gets to me… and this comes from watching the awesome Loving Lampposts, the horrid Autism Now series on NewsHour, to knowing Wakefield is going to be in town next week, and finding out an Autism is Treatable segment will be on the news in the morning… How can we be inspirations? How can you hope your child turns out like us? Then in the next breath, when we give advice, “Well, that’s how you choose to do it. And we’ve made a different choice that works better for us.”

It isn’t like I’m talking about specific treatments. I’m just asking for you to learn your child. To accept your child. To build a relationship with your child on your child’s terms. Not yours, theirs.

Don’t call me an inspiration then ignore all advice I give…. especially when you ask how I did it… how I do it… and love the results you see.

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?