At the beginning of our autism journey I read this piece and I vowed I would never tell Beth to stop hand flapping: http://juststimming.wordpress.com/2011/10/05/quiet-hands/. I also read that flapping can mean a variety of things and can express happiness, relieve stress, can be a unconscious reflex, or can be an attempt to feel arms and hands that seem disconnected to one’s own body (read through comments here, it is very enlightening http://aspiringdad.wordpress.com/2008/01/30/understanding-hand-flapping-and-what-to-do-or-not-do-about-it/). I believed, and still do, that flapping is a form of communication. I witnessed this myself when Beth was about 4-5 years old. Beth flapped down low at her waist when she was happy and faster up high by her head when she had pain or discomfort. But over the last year or so, her hands slowly creeped up near her eyes and now she flaps about the same rate and near her eyes for every situation, so it is hard for me to interpret the nuances of her flapping. Another thing that has changed over the years is the amount she flaps. I would say it is at its peak now. And with a lot of flapping has come a lot of challenges, such as:
- Flapping while looking down and walking, which prevents her from visually scanning her environment. It is exceptionally dangerous when this happens in parking lots.
- It is hard for her talk, answer questions, or notice people and activities in her environment when she is flapping. This has definitely led to missed social and learning opportunities.
- Sometimes it impacts academics. It turns out it is very hard to write while flapping!
Telling her to temporarily stop in the critical situations (parking lots) didn’t work, so I tried telling her what to do (look up, keep looking at the store we are walking to, etc.). The drive to flap was too strong, and she just couldn’t maintain an upward glance.
This spring the flapping jumped way up and I was confused as to why. Then we hit a cold patch in the weather and her coat went back on and I noticed the flapping went down again. The weather warmed a bit, the coat came off again, and the flapping jumped up. I couldn’t really keep a winter coat on her all spring and summer. But then the weather slightly cooled and I had her wear a new lightweight, polyester lined raincoat from Target. The flapping disappeared almost entirely (!). Why? Most people say weighted things calm children with autism, but that wasn’t the case here because the raincoat is extremely lightweight. We tried weighted items in the past, including a weighted vest and it never worked for Beth. I have done some experimentation with other light sweatshirts, but the raincoat works best. My guess is the long sleeves that touch her hands and the smooth inner lining somehow stops the flapping. She also loves wearing it and refuses to take it off even if it is warm, so I think it helps calm her. Or maybe she feels more connected to her arms and hands (?) I probably won’t know the answer to this miracle for a long time, but sometimes you don’t need to know why a sensory strategy works. It just does.
While going from our car to the in the parking lot to the mall one day, it was too warm for a coat and for some reason Beth took a toy from the car with her. Since something was in her hands, she was not flapping. Her head was up and scanning her environment and she had a big huge smile on her face while looking around. It was easier to talk to her, easier to direct her to where we were going, and she was much more connected to her environment. A year ago it may have been impossible for her to hold something and walk (she would just drop any item after a few seconds), but now this approach works!
I bought a variety of fidgets at the store and tried them on outings. By far her favorite is what I call the “stinky caterpillar” puffer toy (see it above in the picture, purchased at U.S. Toy). The thing stinks like soap and plastic, but she absolutely loves the smell (the smell itself seems to calm her, not just the touch). One day Beth asked for Stinky while she was writing because she couldn’t calm her hands and it worked. We started using Stinky for circle times on the floor in music class and Little Gym. Stinky goes wherever Beth goes and will definitely go to school with her in the fall. The combination of rain coat and Stinky helps Beth sit better and helps her tune into her surroundings.
I guess my advice from this experience is to focus intently your child’s sensory needs and make constant mental notes of cause/effect. Most times your child will lead you to the answer, and you can help by being a hyper in-tune observer, seizing opportunities, and expanding on observations.