I have been writing and rewriting and thinking about this post all month long. What on earth could I possibly say that would add to Autism Awareness Month? Are there people who aren’t aware of autism anymore? Is that possible? What can our experiences add to the ongoing dialogue about understanding autism? I’m not really sure, but I’m going to try.
Andreas was diagnosed with Autism Spectrum Disorder in February of 2013. He is 6.5 years old and in grade 1. Andreas is the second child of four, and has an 8 year old brother, 4 year old brother, and 2 year old sister – all neurotypical. He is high functioning and fits the profile for Asperger’s Syndrome, but the new thing is that all labels on the spectrum are now called Autism so we go with that. He is bright, quirky, particular, unassuming, serious, funny, and sensitive. He doesn’t know that he has autism. He is starting to notice and be bothered by some of his differences and the autism conversation may not be far away.
Andreas is one of those people who never ever would have been diagnosed with anything, a generation or two ago. He may have been labeled difficult or intense or quirky or weird – but not autistic. That just wasn’t good enough for us, because with or without a label, people know when they are different, and we wanted him to know why he is different, if and when he started to feel that way himself. We had to ask if writing someone off as difficult or quirky is better. Better than validating them for who they are as a whole, complex person by making room inside of a diagnosis that offers some explanation and hope? I think not. Andreas is starting to know that he is different, and it’s not a super fun journey of self-awareness when being different means that things are harder for you and you don’t understand why – but meanwhile because you can speak and you can get through a day without freaking out until you get home (sometimes), people don’t always get that you don’t understand things even though you do them anyway. And nobody knows how brave this little unassuming boy really is just for showing up, when he’s begging me in the morning to stay home instead.
Sometimes I worry about how Andreas is going to find his place in the world. He isn’t quite like everybody else and he knows it. And yet, he is one of those people on the spectrum who needs to explain why he belongs there, and for now we need to explain why he belongs there on his behalf. He’s sort of on the fringe of both worlds and it’s complicated. We don’t really know what we’re doing here. We aren’t experts on autism, just experts on Andreas. Even then, I use the term expert quite loosely. Andreas is never slow to point out all of the many and varied ways that we are wrong about everything.
The thing I keep hearing when people talk about autism, is a lack of understanding as to why the numbers are going up at seemingly alarming rates. I’m not a scientist. I’m not a researcher. I’m not a doctor. There may be one reason or many or a combination of things going on. I’m a mom of a kid who doesn’t really fit anywhere, and my lack luster theory that will never make the news is that the numbers are going up in part because as awareness and understanding continue to increase, the autistic community is making room. Making room for new kinds of people who don’t fit anywhere else and making room for a more diverse spectrum as a whole. Making room for people like Andreas and people nothing like Andreas. I worry though, that in this making room, something is being lost. Something is being taken away from people for whom autism is not a safe place of inclusion, but a wilderness inside of which is an oasis that they are still searching for. Call me crazy but even though I worry, I have some kind of wild, outrageous hope that from this making room will come breakthrough. That Andreas and others like him or nothing like him, will help the helpers know how to help people in other places on the spectrum. That the wilderness might someday become a safe place for everyone journeying it, and the oasis accessible to all. In part because we are making room for a broader spectrum of people to help show the way. Maybe. Or maybe I really am crazy.
My best advice for anyone wondering what all of this autism awareness stuff means to them, is to take it and make room. Make room for people who make sense to you and for people who don’t. For people who are autistic, or just “difficult” or “quirky.” People like Andreas who fit into the world in their own, unique way.
copyright (c) 2014 Jenna Pelias // all rights reserved