What do I want my fellow open-minded, open-hearted citizens to be aware of during World Autism Awareness Day?
- Be aware that, as the saying goes, if you’ve met one child with autism, you’ve met one child with autism. It’s a wide spectrum.
- Be aware that intellectual disabilities have no proven association with school violence. In these post-Parkland days, I am thrilled that America is having a larger conversation about the unacceptable levels of violence at our schools. But I’m less thrilled that certain lazy assumptions keep coming to the fore, those “he seemed like an Asperger’s kind of guy before he opened fire” kind of things. Nope. Study the science and get back to me.
- Be aware that autism isn’t just Rain Man, the 1988 movie with Tom Cruise and Dustin Hoffman. Sure, we can hope that every autistic kid has some kind of hidden genius inside him or her, a talent that actually sees or knows things that the rest of us have missed. But in a lot of cases, that’s not going to be true.
- Be aware that because this is close to a national outbreak, the science is shifting under our feet. New experiments are happening all the time. We don’t know where we’ll be in 20 years.
- Be aware that we parents of autistic kids that receive services are acutely aware of our privilege. We know that attention to autism is sucking resources away from other pathways to helping neuro-typical kids. We know that if our kid was born in a less privileged country, they would most likely shove him in a corner and practically forget about him. On some level, there may be something unsustainable about the way America is, broadly, treating autism. We are aware of this.
- Be aware that we lose things! In the case of our family, we have a child who can’t speak and can’t refer to things he’s done. So if we ask him, “where is this?” or “where the F__ is this?” he can’t answer. Sure, a small toddler might have similar trouble, although she might not; even pre-verbal kids can often point to where they put something. Our child has never pointed. But our child is big enough to reach everything, especially since he figured out how to bring a chair over to, say, the fridge, to reach the top of it. Could we lock everything away? Sure! If it’s truly precious, like a passport, we do. But that doesn’t keep us from living in this weird limbo where almost anything vanishes without accountability, maybe turning up months later. (Our kid’s not a squirrel with a set storage space; that would be too easy.) We also lose pages out of books. So…be aware of all that.
- Be aware that in some ways, a diagnosis of autism is like having a severely ill parent – for years and years. But it’s not going to end in death, actually it’s not going to end at all, at least in my lifetime. So be aware of those emotions stretched out over months and years. Be aware of the necessary compartmentalization. Be aware of the crazy thoughts that illness leads to…what part of this is my fault? What burden am I placing on others? How will the specter of my kid’s autism affect the future – affect my other (neuro-typical) kid’s opportunities? Will autism trickle down to a descendant? How will my family and relatives talk about this in fifty years?
- Be aware that on some level I rarely articulate here, I am terrified for my child’s future. I am terrified of the Cuckoo’s Nest he likely winds up living in. Be aware that I am terrified about possible violations and circumstances that I will never articulate here.
- Be aware that I do want to hear about your problems with your neuro-typical kids. And when I think, “As bad as that is, I’d swap problems with them in a heartbeat,” thinking of that is one of my problems, not yours. Be aware that I’m aware of that.
- Be aware that I am forever grateful for your interest, for reading this, for not simply reacting to my child as “ewww, freak” and walking away, for keeping families like mine, with autism, in your thoughts and considerations. Be aware that despite all the madness, I’m thankful for the blessings, including you.
