Johnny came home yesterday to tell me that there is a new kid in his class. This new kid "sticks out his tongue when he is happy?!" I opened my email to find that Autumn had filled me in a little more: the child has down syndrome. Apparently Johnny was having a rough time handling the new addition, as he makes dramatic (and in Johnny's eyes, rude) facial expressions and doesn't follow any of the rules. Autumn had explained that he wasn't being rude to classmates, it was his way of showing everyone that he is happy. We had a chat at dinner time about how everyone has a brain that works differently from the next person, and that this new kid's brain is just more noticeably different. (The rest of the explanation will come at a later age...) I talked about how he is going to show that he is happy in ways that Johnny isn't used to, and that as a member of the class who knows all of the rules already, Johnny needed to not only be patient with the new kid, but understand that he might never follow the rules completely. I charged him to be a big helper and be friendly to the new boy, because it can be just as hard to not know or understand the rules as it is to have a friend near you that isn't doing what you know they should be doing.
Johnny, Steve and his dad had been teasing me for all of dinner that I am crazy for not wanting ketchup on my baked macaroni and cheese like they do, so I told Johnny that maybe I don't like that taste because my own brain registers the taste as yucky to me, but that he tastes something yummy. He then sang me a song about trying new foods, so despite my insistence that I've tried it multiple times before, I ended up taking a bite of Steve's ketchup-covered pasta. "Nope! I still don't like it!" I made a silly face at him and then told him that my brain might never decide that macaroni and ketchup tastes good, just like his classmate might never understand that sticking his tongue out is something that other people sometimes find offensive. Just like Johnny still loves me even if I don't like his preferred meal alteration, (it really is gross) Johnny needs to be nice and polite to the boy whose brain doesn't work the same way his does.
I am hoping that at least some of what I had to say got through to Johnny and his day at school goes a little differently than yesterday. He seemed open to the idea, so with a little luck and some help from Autumn and Ashleigh, this rough adjustment might just be manageable without the new kid being subjected to Johnny's own rudeness. (Which, if he were older, I'd be able to explain as being pretty much the same thing as the boy sticking his tongue out-- he isn't trying to be rude, but his actions are perceived as rude. He doesn't realize this because his mind works in a way that gives him the need to make sure everyone has the same expectations placed on them in all things!)
How (and when) will I go about explaining to Johnny that he has autism? Being so far on the one end of the spectrum, it is something he will definitely be able to fully grasp, once he is old enough. If he is anything like myself, (which he continues to prove he is) he will hopefully be able to embrace and even thrive in the understanding of his own mind. But when is he old enough? When will it be something he should hear? I would have killed to know and understand why and how I was different when I was a child. I had no explanation, and I was just "that weird kid". Had I been diagnosed much younger, I think my self esteem would have been higher and I wouldn't have been as bothered by what the other kids said; I would have known that I am just different. That sounds incredible to say of my child self, as most kids might be upset if told that their brain is abnormal. But if you understand how my brain works in it's overly-rational way, the rational reaction to my diagnosis would have been exactly that. I am different. I am almost always smarter, I have abilities that other people can't even begin to comprehend, and I have more to offer the world than anyone realizes. I don't have a disability, I have an ace up my sleeve.
I can't fully express what it was like to be told I have autism as an adult. It is something I chewed over and over in my head for months after I was diagnosed, and on some days I still don't quite know how to juggle this idea in my head. I am not the face of autism. I am not what people expect. At the same time, there is no doubt of my diagnosis. The everyday person might not see it, but my coping mechanisms for dealing with stress, anxiety, depression or over-stimulation (which I experience quite often) involve the stereotypical autistic behaviors. Rocking back and forth, the need for physical compression, (a tight hug, hiding under a mountain of pillows, having something heavy sitting in my lap) the tendency to gravitate toward swings for that kind of movement, obsessively trying to find and experience a new texture if the last thing I touched/ate didn't sit well with me, needing someone to scratch/draw on my back to calm me... they are all hallmark signs pointing to the spectrum. I've just gotten really good at hiding them in public.
I have, over my 26 years, made some of these things seem almost normal, even to the people closest to me. I've always wanted my back scratched, I remember paying my sisters to do it for me when I was a kid. I've always sat with several pillows in my lap whenever possible when engaging in conversation or watching a movie. I had a mountain of stuffed animals that grew to be a pile of pillows on my bed under which I have always slept. No one thinks twice about the girl who spends a lot of time spinning around in an office chair or swinging on swings when she is trying to concentrate... it isn't a totally abnormal behavior, especially considering the fact that the upright hammock my family owned was a blast (I used to spend hours there). The rocking might be a little more absurd among mixed company, but you won't typically notice because I usually have a kid on my lap and it seems natural. Ask my husband, I don't go to sleep at night without sitting there and rocking for a while; I've always done this. As a kid, it just came off as antsy. So individually, none of my behaviors seem "off" to most people. Add them up, and it becomes clear that they are all ways in which I cope. In addition to other elements, I am most definitely on the spectrum.
I think part of what is hard for me to fully reconcile about the diagnosis is that when I was a kid, autism wasn't considered something people could live independently with. The autistic kid at school was always expected to spend the rest of his life depending on someone else, if he ever moved out of the house. The autistic kids weren't dating material; no one thought they would get married. They were much closer to the middle if not low end of the spectrum. People as "high functioning" as me weren't really ever on the radar. While some of the autistic kids were considered incredibly smart, it came with the imbalance of appearing uninterested in having friends and having socially debilitating coping mechanisms. Until more recently, and even now, kids who are "high functioning" are expected to have no social inclinations at all. This is simply untrue! Even the ones who don't comprehend when someone is making fun of them I can promise you do catch the gist of it every now and then and are always confused by it. And believe me, there is no doubt about my son's diagnosis yet he remains one of the most social kids in the universe. He may not always socialize successfully with other kids, but he sure wants to!
So, when should I tell him? How do I tell him? What is it, exactly, that would make him "ready" to hear and understand? Will it be hard for him? Will it be a relief like it was to me? Will it be helpful to know that mommy is the same way?
I don't know.
