Did you hear the news yesterday? The CDC released the new incidence rate of autism and the numbers are now 1 in 68. Just 17 years ago it was 1 in 500 and back in 1980 we were at 1 in 1,500. While there is an ongoing debate on why the numbers have gone up this post is not about that. Instead, I want to talk about the numbers pure and simple.
I think back to when I was diagnosed and it was something I had never heard of; that being Asperger’s. I had heard of autism but I wouldn’t have been able to describe any trait of it whatsoever. Quite simply, to myself and many others, autism was something that was just “out there” and something that would never be encountered or experienced.
Times have changed and every two years the rate of autism grows and grows. When I began I was stating that autism was 1 in 110 and that number has almost been cut in half. What will the rates be in four more years? 1 in 50? 40? 35? Whatever these numbers may be I now find them to not be of much circumstance because I’m looking at a new number and only one number matters and that is, “One in all.”
What is one in all? This is the target for autism awareness and understanding in all fields of society. The era of ignorance must come to an end. When it was 1 in 1,500 it was something that was out there and that most people would not come across. Now, however, we’re nearing 2% of society being on the autism spectrum. For teachers this would mean a student on the spectrum one in just over two years if an average class were 25. For police officers, which I am ever so thankful that the Saint Louis area has been so ahead of the curve on autism training, the need for training is as paramount as ever. I haven’t said this in presentations to them but maybe I should in that, “if you haven’t had an autism call yet in won’t be a matter of if but when.”
And for doctors, well, autism training there is still of utmost importance. I said I wasn’t going to get into why the numbers are going up, but perhaps it is better education of medical staff, but when I began working part of my job was to visit doctors and give them materials on autism. I did meet some amazing doctors who were dedicated to the core on providing whatever assistance they could for families and I also met doctors who didn’t know a single thing about it. Again, the era of ignorance must come to an end.
It pains me to think of the damage of ignorance to autism because, for one, it doesn’t have to be. Secondly, since early intervention is critical it is safe to say time lost is growth lost. There is always hope but the more time goes by the more work it will take. Also, since we on the autism spectrum can often be our own worst enemies, we often we seclude ourselves from society if we are picked on for things we do which may be out of our control. This is why speaking to students bodies is something that has given a new meaning to my role as “Autism Ambassador” because, maybe, the amount of bullying can be decreased.
As I’ve traveled and presented to schools, and I’ve mentioned this before, there will always be a question asked of, “How many people are on the autism spectrum?” and before I give the answer I ask back, “How many here knows someone or knows someone that knows someone on the autism spectrum?” and at my 500th presentation earlier this week I had over 90% of the 425 students there raise their hands. It was the highest number I’ve ever seen and it was so shocking to the students that I had to allow for almost 30 seconds of processing and chatter to happen before I could finish running off the numbers.
What that middle school response was, to me, was this; autism, I think to many, is still something that they may think is still something isolated whether it is a cousin, an uncle, or a niece, but whomever it is it is isolated therefore it is something that isn’t brought up. And to think of it, why should it be? I can’t think of something in school at recess that would bring up the subject of autism, and even if it did would one be willing to mention that a relative has it? This is the ongoing stigma of it all, but in that moment when all the students saw most everyone with their hands up that gigantic wall ceased to exist.
It seems with each passing year my role seems to get more important. And while that last sentence may sound I’m being egocentric I’m not as I’m just stating how I’ve felt. When I began at TouchPoint now Easter Seals Midwest I didn’t really know who I’d be speaking to or what I’d be doing but now I see it as a battle. This battle is to reach a one in all of autism awareness and understanding. Call me a perfectionist but everyone associated with the autism spectrum should have this goal. With ignorance comes the potential for the fail-set mentality to take hold and what could have been just a mild misunderstanding could balloon into a life-changing for the worse experience. With ignorance comes time lost and human potential squandered. We’re at a crossroads now and we must PUSH PUSH PUSH ever forward until every police officer, first responder, doctor, teacher, and any person who may work with a person with autism knows what it is and can better handle the encounter because, after all, it’s not a matter of if at this point but rather when, so again, the era of ignorance must come to an end.