Autism. It’s just one word. We can discuss Autism all day long, the signs and symptoms, if it’s environmental, genetic or both. If it can be treated or cured or just left to be. If diet, drugs or therapy will help. We can talk about support groups, funding, public education and screening. We can debate the history, progression and societal impact. We can evaluate the merits of weighted blankets, melatonin and communication devices. Or hash out IEP’s and treatment plans.
Whether used as a noun, an adjective or a verb, it’s just a single word but when applied to a person it becomes so much more.
It becomes a child, partner, mother, father, neighbor, student, cousin, friend.
It becomes my child.
And in that sense, we can still talk all day long but there would be a new spin on things. Because Max, isn’t just Max anymore. Max is autistic. Max becomes “my autistic child”. “My child with ASD.” Because in order to understand Max you need to understand autism. And in order to understand my life you need to understand autism. And if you don’t, we can have that all day long talk, I’ll even bring the coffee, but it will be for nothing.
Everyone tells me that this diagnosis changes nothing. That Max is still Max and in that I agree. He is still my smart, funny little boy. Still my last child and by default my baby. He’s the one that takes little shuffling baby steps away and looks out of the corner of his eyes when he knows he’s in trouble. The one that raises his eyebrows at new things in an “I don’t really think so” way, even when he refuses to look at you. The one that strips as soon as his foot hits the house floor and sometimes sooner. The one that fidgets sitting next to you trying to contort his little body to mimic your exact position. It’s endearing, and makes me laugh. It’s also Autistic.
And everyone that I hear those words from, that it changes nothing, doesn’t have a child on the spectrum.
In a way it really doesn‘t change anything and in an even bigger way it changes everything.
It changes our days. Some days we have therapy, NT kids don’t usually have that. It changes how I deal with him. It changes how his siblings interact with him. How I have to question whether this is typical 3 year old behavior or if it’s his autism and he just can’t help it. I have to second and third guess why he’s doing what ever it is that is causing him to “misbehave” because he can’t tell me. I have to guess at what is making him shriek at the top of his lungs over and over again. I have to ignore the stares from onlookers while we’re out and tip toe around snarky comments half whispered from the onlookers that have big mouths. If you’re an ASD mom you know the ones, the ‘whispers’ that are loud enough for you to hear even over the shrieks. The things they want to say to you but are too scared to do it to your face.
And then the comments that you don’t hear, the ones after you or they leave but that you can see in their eyes if you ever meet again.
It changes relationships with peers, friends, relatives. It changes how you deal with insurance companies, vacations and schools. Your future is different because you need a fail safe plan if your ASD kid never becomes independent and you die. You need alternative means to communicate if they never speak. It changes sleeping arrangements, grocery shopping, clothes. It changes how we evaluate “safe” places and when and where we can do things, because sometimes, somethings just aren’t going to work for my autistic child.
It means that I spend an enormous amount of my time researching and learning how to care for my son. It means that I have less time for everyone else. It means that if I want something for him I have to go out and get it because no one is going to do it for me. It means that I get to talk about autism all the time to people that couldn’t give a flip so that maybe when they want to give “that look” or whisper when they see another ASD kid out there maybe they’ll think twice. It means the first thing I get to do when we move is look for ASD doctors and therapists in addition to horse back lessons and ballet for the NT kids. That the baby sitter I need to hire can’t be a flaky teenager but someone actually qualified to deal with ASD children or be willing to learn. It changes how much money we have and where the money we have goes. It means that other might have to change how they deal with us, coming here instead of us going there, not getting bothered when we don’t call or realizing that I’m not being unthoughtful if I forget something but that my thoughts are just too full. And listening to me use the word “autism” more than once in a conversation and not getting annoyed because, guess what? I’m an autism mom, now. It changes who I am.
Ignoring it isn’t going to change anything though. Telling me he might grow out of it or making ignorant comments about his development isn’t going to help. You can pray and hope and wish all you want, and by all means, please keep my kid in yours if you don’t mind. But don’t tell me it changes nothing because all you’re doing is making me feel that my feelings are petty, that all of these changes I have to make are meaningless, that I don’t have a right to my level of stress or helplessness or loneliness or overwhelm. That dealing with Autism isn’t a big deal and it tells me I can’t count on your support by belittling the enormous changes I actually DO have to face.
And for the simple fact that you’re wrong.