I’m so happy to be taking part in RJ Scott’s World Autism Awareness Day Blog Hop (<click the link to go to her masterpost) 🙂
RJ asked that we each post an Autism Fact, and so I chose this one:
Typical ASD behaviors include stereotyped actions (hand flapping, body rocking), insistence on sameness, resistance to change and, in some cases, aggression or self-injury.
Because for me, it is the most applicable.
Every day is Autism awareness day in my house, though I will be the first to admit my son is very “typical” and is probably right on the edge of the autism spectrum (depending on what test they are doing these days). He is what some people would call “high functioning” though I never use that term if I can help it.
He was diagnosed at age 2, and so, as you might imagine, a lot has changed for him since then. He’s gone from a little boy with very few words who would not respond to his name or a direct question, to a boy who has an extensive vocabulary, converses typically, and asks many questions of his own. He went from a kid who would not tolerate certain clothes, who screamed at the touch of skin lotion or sunblock, and who refused to put his hands on play-doh, to a kid who can wear most anything and build sculptures with sticky mud (though he still prefers clean hands).
But one thing that hasn’t changed is the “stereotyped actions.” For him, that means tapping. Lots and lots of tapping. Stereotyped actions, or Stereotypy, is very common in people with ASD. It is also kind of common in the rest of us. Who doesn’t twirl their hair or tap their pencil sometimes? But for my son, like many ASD kids, the repetitive behavior is constant.
And it is what I would like to raise awareness about.
I think one of the saddest things you can go through as a parent is to see your child become the butt of jokes or the target of teasing. And especially heartbreaking to see them mocked for something they cannot control. My son is still young (he’s 8) and so most kids his age are really tolerant and don’t see too much wrong with him repeatedly slamming an empty water bottle against the edge of a table. But older kids and adults are kind of harsh. He’s been called “rude” and “annoying” and lots of other things, probably worse things out of my earshot I’m sure.
And I get it, because he does seem “normal.” There is no physical deformity, no other clue that he is not a perfectly average little boy. Except this behavior, this annoying disruptive tapping. So I do understand why people who don’t know him are quick to reprimand him. But he is not “normal.” No matter how well he manages to blend in, he still fights to do so. He has difficulty with fine motor skills and with planning, and has many struggles that are more invisible (emotional issues, problems relating to people) as well as sensory processing issues.
So what I’d like to remind everyone of, during this awareness campaign*, is that not every person who is on the autism spectrum is obviously “disabled.” Many people pass for normal**, and their struggle is internal. These people try really, really hard to do the right thing, to act properly, and to blend in. Please don’t hurt them when they don’t quite “fit.”
My son’s tapping is something we work on a lot.
On one hand, he wants to do it. It soothes him and he likes it. He also needs to tap, and it is out of his control. He will tap on his knees or thighs, if he is supposed to be quiet. He often has bruises there, the result of tapping sticks or bottles repeatedly on his little kneecaps. This is not something he is doing for attention or to be purposely disruptive.
On the other hand, he needs to do normal kid things, like spend all day in a classroom. And making a ton of noise when classmates are trying to read, or the teacher is speaking, is not okay. So we work on it, to help him be as socially acceptable as possible. And so no one makes fun of him.
I want the world to accept my kid just the way he is. But I am not stupid, and I have been kicking around this world long enough to know that is not going to happen. So I try to help him fit in, as best I can. To keep him safe. (And because a mom beating the crap out of a second grader for teasing her kid is generally frowned upon.) And I try to control his tapping. We try tapping quieter objects (there was a brief period of peace when he was into tapping plastic bendy drinking straws. ahh. those were good days) we have times when tapping is simply not acceptable (like at the dinner table or in a movie theater) and we have places where he has to ask for permission to tap (like when we are visiting friends or family).
But I realize the most I can do is try to force this behavior to fit into our lives, I cannot eliminate it. So there will always be teasing, and irritated looks, and people who think I am a shitty mother who can’t (or won’t) control her kid. My job is to keep him happy and healthy, and to give him the skills to navigate this world on his own. Tapping is only a small part of that, but it sometimes feels like a huge thing.
I hope if you have read this far, that the next time you see someone doing something a little odd, some little repetitive behavior, some weird noise, you will stop before you scoff, and try for a bit of empathy. They might be fighting a battle you cannot see.
*(“a call for accountability” is a fantastic post about the harm that “awareness” campaigns can do. read it please!!)
**(“not that autistic” is a great post about being able to “pass for normal.” read it please!)