The CDC has released its updated statistics for number of children diagnosed with autism, revising them to 1 in 88 (up from 1 in 110), with 1 in 54 boys being diagnosed. There will be the usual firestorm of reactions to this from all sides. So let me suggest that everyone just take a deep breath.
I wrote some reflections on autism statistics and what they mean to me in a post a couple of months ago called “1 in”. It’s about remembering what and, most importantly, who we are fighting for.
My reaction to the CDC’s report is probably an uncommon one. I think there’s quite a bit of good news in it.
* More kids who need to be diagnosed are getting diagnosed and are now on the path toward getting the services they need.
* All of our awareness-raising efforts are working. As awareness increases, so does everyone’s understanding of what the characteristics of autism are and what they can do to help children meet those challenges. As a result, more parents and family members are armed with the information they need to ask for evaluations and get the diagnosis their child may need. Medical professionals know much more now about what to look for. I believe we can take these new data as a sign that our efforts are working.
* African-American and Hispanic children have seen the most significant diagnosis rate increases. This is also a good thing. These are – not shockingly – populations who traditionally have not had anywhere near adequate access to medical, diagnostic, and therapy-related services. I take this increase in diagnoses here to mean that African-Americans and Hispanics are seeing improvements in getting this critical access to help. Obviously, we have a *long* way to go in improving this access, however. Way too many kids still are falling through the gaps.
* These data (hopefully) will help us get more funding for services, at least in the future, by showing the vast and increasing scope of need out there. I’m not naive. This will take a while, but these data will help.
There are, however, a lot of things these data do not tell us. One essential concept to keep in mind here is that these statistics reflect the number of kids *diagnosed* with autism. They may have been previously undiagnosed but still had autism. These may reflect actual increases in the total number of autistic children. No one knows for sure.
But are these new diagnosis rates solely the result of improved diagnostic tools, greater awareness, better access to professionals, etc.? The simple truth is we don’t know. I think it’s clear that a significant number of these ‘new’ diagnoses are the result of this, but all? Again, no one knows.
I freely admit that I can’t remotely define what ‘significant number’ really means. It’s just my sense that the systems in place are indeed doing a better job in making sure more and more kids who need services are being identified and served. As that continues to improve, I imagine these numbers will change again.
For me, the actual bad news here is that more families will be fighting for the same vastly-underfunded pie of services. Our own family is already losing critical supports from our county at the end of June because of budget cuts. It’ll get worse for all of us before it even thinks about getting better. Our mission now is to take these statistics and arm ourselves for the next battles to come.
You’re going to see endless new theories about what has brought about these new data and strong defenses of many of the arguments we’ve heard over and over again. Everyone will have a theory, including me obviously. Let’s make sure of one thing, though. Let’s not be a-holes to each other as we struggle with these numbers.
We’re all working toward one common purpose – making sure our kids, adults, and families get the services and supports they need. Don’t lose sight of this. We have a LOT of work to do. Let’s get back to it.