Many years ago, I attended an Autism Society of America conference in Chicago. If you have been to many conferences, or any type of long meeting, you know that by the end of the day (or in this case, end of the second day!) you are just putting in time till you can leave. You are tired of sitting and in my case, new friends were going to take me to Navy Pier as soon as the day was over.
The last speaker of the day was Dr. Jim Ball. I’ll be honest, even though he was a behavior specialist and I knew I needed the information, my main thought was wondering how long I needed to stay in order to get my full day certificate. Let me just say this – an hour and a half later, I couldn’t believe his time was up and I had to leave!
When Dr. Ball stepped up on the stage, his first words were something like “Every one in this room has a stimming problem.” The whole place (about 300 people) looked at each other like “Oh man – this guy isn’t gonna be worth listening to.” Then Dr Ball asked, “How many of you, right now, are tapping your pencils? Twirling your hair? (ME!) Swinging your foot? (also me!) Those are all stimming behaviors – only socially acceptable ones.”
He had my attention and everyone else’s in the room. I had never thought about what I did to control myself in public or when I’m bored. When my hair was longer, I twirled it around my fingers as I concentrated. I swing my foot all the time. I rock back in forth (though I think this one may be learned from watching Casey!) I play with my phone. I twist my fingers together.
Who else taps their shopping cart while they wait in line? Anyone else fold their legs or feet under them while they sit? Some people crack their knuckles. Others tap their toes. Still others swirl their drinks in their cups. And I know many of you stare at your phones.
So why in the world is it ok for us “normal” people to self-stim and it isn’t for people with autism? I know people who chew gum all the time (deep pressure on the jaw!) but if you see someone with autism with a chew toy, it is inappropriate. The reason is simple – we have learned what it socially acceptable and people with autism have not. Or they have and they don’t care.
When Casey has to wait for anything, she sways back and forth, gently. She doesn’t bump into people and isn’t very obvious about it, but she needs that comfort. People often stare at her so many times, I join in. Let them look – my daughter and I are having a quiet moment together and I don’t care what they think.
Rob is a little more obvious about his rocking. He is a lot taller than her so that gets attention, anyway, but he also hums while he rocks. And his rocking isn’t a smooth back and forth – he jerks around at times. But again, he isn’t hurting anyone and I can stare right back at anyone who dares to stare at him.
I’ve heard people say that we need to teach people with autism to be more socially acceptable in their stimming. I want to know why. Personally, sitting near a woman who is clicking her nails together to stim drives me up the wall, yet, that is acceptable and rocking isn’t. Who decides what is ok and what isn’t?
As a parent, we want our kids to be accepted by everyone, but the reality is, even if your child was typical, there will be people who do not accept him/her. I know there are people who, for reasons I don’t even know, I don’t like. And I’m sure there are people who don’t like me. So why do we fight so hard for our kiddos to give up a stim that they need?
Your child doesn’t need everyone to like him/her. They need your love and your acceptance. There are some stimming behaviors that should be curbed when they are in public, but you can teach them that that behavior is a “home” stim. No, it isn’t easy, but neither is teaching a child to use a potty and we do it. Be consistent and be kind. Your child can learn!
After listening to Dr. Ball that afternoon almost 20 years ago, my thoughts on self-stimming behavior have changed drastically. I don’t try to stop the kids, but redirect if needed. Most of the time, I’ve been lucky that their stims have been odd looking, but not inappropriate.
Flapping hands and twirling around seem to be big stims for many people on the spectrum. It may be hard to watch others look at your child, but your child probably isn’t paying any attention to them anyway. The stares are hurting you, not them. Stare right back. Glare if you want. Remember, people stare at typical kids, too. It’s just part of being a rude person and you can’t change it.
I heard some parents complaining last week about a child at the table next to theirs. The little one obviously had a disability (not sure autism, but probably) and was staring at an iPad while waiting for his food. He wasn’t moving around, he wasn’t making a sound. This couple was making loud comments about parents who can’t even take their kids out in public without giving the child something to entertain themselves.
Their comments went on to say that they never had to take electronics for their kids – they were taught to sit and wait. And blah blah – you know the drill. Meanwhile, as they are complaining about this boy and his iPad, they are both staring at their phones. What the heck is the difference? Besides the little boy wasn’t bothering anyone and their comments were mean and hurtful to the family? If you can sit at the table with your phone, then someone else can use an iPad. Pretty simple to me.
I bet even as you read this, you are stimming. Think about it. Are you playing with your hair? Rubbing your leg? Tapping your foot? It is ok to self-stim. We just need to help our kids find a stim that helps them – and often, they find it themselves. I never taught Casey or Rob – they just do what they need to do to feel comfortable in an insane world.
Self stimulation can occur for many reasons. We can do it to “wake” up or to calm our bodies. It may provide some sort of internal pleasure. Casey and Rob often use stimming to calm themselves when they are becoming overwhelmed. The faster Rob rocks, the more overwhelmed he is getting and I know I need to remove him from the situation or provide deep pressure to help calm his body.
You may consider talking to a behavior specialist if your child’s stimming seems to be out of control. I have listened to Dr. Ball several times and I am still learning from him. His presentations are never boring! Your school district can contact a behavior specialist (districts often have behavior specialists contracted for services throughout the school year) if you feel the need. Your doctor may also be able to recommend one.
In the picture about, Rob is not imitating the boy from Home Alone. Squeezing his jaws have been a favorite stim of his since he was a toddler. The tighter he squeezed, the more he needed to calm down. He wasn’t always upset – sometimes he just got too excited and needed to calm down, like in this picture. Coloring eggs as always been a favorite activity of his.
Remember, don’t try to stop the stimming without replacing it with something else. I can almost bet that your child will find another stim – and it may not be something you want to deal with!