Who Cares About Eye Contact or Hand Flapping?

Parents of severely autistic kids are working on much more foundational skills.

Posted Oct 10, 2019

Last week, I saw another meme in my Facebook feed castigating parents for forcing their autistic kids to make eye contact and to sit with “quiet hands” rather than flapping. It’s a common theme in autism discourse: Parents are accused of being “ableist” because of this alleged obsession with superficial, harmless behaviors in our desperate attempts to make our kids look “normal.”

Maybe there are parents concerned about these things, but I certainly don’t know any. Parents of severely autistic kids have much bigger worries. An informal poll in two Facebook groups I belong to for parents of severely autistic children confirmed we are all working on many of the same goals: physical safety, communication, toileting, basic life skills that will give our children a modicum of independence.

Hand flapping only came up as positive behavior, a sign that our children are happy. Wrote one mom, “My son loves flapping… He isn’t hurting himself or anyone else. No harm there!”  

Below are some excerpts from the replies I received. My tremendous gratitude to the parents willing to share their experiences—I’m only sorry I couldn’t include everyone because there were so many:

  • "We are trying to help my son (12 years old) put his diaper in the trash after it is removed. We only put edibles in our mouth... Nothing else... Do not take drinks or food off plates/floors/trash cans/roads... We are trying to help him understand we do not show our bottom or privates to anyone, nor do we touch anyone else's... even tapping to get their attention. That there is a 'girl/boy' restroom at school. We do not go into the 'girl' one unless you are with Mom. Gentle touches... not smacks or punches/hits to get a person's attention."
  • "We are working on D. (25 years old) having aggression-free outings. He is obsessed with attacking and hitting strangers and won’t let go. It is the hardest behavior we deal with. We are also working on D. completing self-help skills, like putting away his own trash, putting away his own clothes, wiping pee off the toilet seat, flushing the toilet, washing his hands, using toilet paper instead of bath towels. Preparing small meals for himself, like helping me make him a sandwich, getting himself a serving of chips, pouring his own soda, getting his own condiments (and putting these items away). He is also responsible for feeding our two dogs, and I taught him how to give them treats. Everything is done in a routine and at the same time each day for maximized success and predictability. Trying to teach self-soothing/reduce SIBS... jumping when upset for sensory input. Hitting the table with his hands instead of his head on the wall. Biting pillow instead of hands."
  • "We are working on I. pushing the 'I need a break' button on her iPad when overwhelmed in lieu of hitting herself in the head or biting her knees or hands. We are working on eating with a fork instead of our hands—although that one's been put on the back burner, because her appetite has been down lately, and we just want her to eat. We're working on dressing ourselves because motor planning is hard for her, and even though she can do it independently, for the most part, she gets really frustrated if something takes slightly longer than usual. We used to work on peeing on the potty on a schedule, but we've had to table that because we made no progress, and it was extremely frustrating for everyone. We have learned to be happy that she at least poops in the potty! We are working on not putting our hands in our pants. That's been a little better lately, thank God."
  • "E. is almost 12. At school, he is now folding envelopes and laminating things. At home, we are trying to get him to eat with a spoon and to try some more foods. We are learning to keep pants up in public until the bathroom door is closed. We are trying to teach our phone number and address."
  • "I have two sons. A. is 11 and working on manding—using one, two, or sometimes even three words in a row to tell us his wants and needs. At home, he’s learning to tell us when he’s hungry, and I am trying to encourage him to use the potty consistently. I am working on helping him learn to contribute to the family, such as by carrying a basket of laundry down the stairs or carrying a scoop of grain to the goats. Other goals include helping him understand that touching himself is an activity that can only happen in his bedroom. E. is 9, and with the help of his ABA clinic, we are working on appropriate ways to manage anger. We want him to learn to use words when he is upset instead of biting and hitting. We are also working to overcome extreme obsessions with objects, so he doesn’t become violent when his balloon pops or his rubber band breaks. E. has injured his brother to the point of needing stitches more than once. At home, we are working on petting the dog and cat gently and staying out of the road."
  • "L. is 13 in a full-time ABA school. We are working on the same with roads. Also tolerating sanitary wear, which fails horrifically, so it's now trying to tolerate period pants. When they start for real, it'll be on not smearing and eating the blood. Trying to learn how to communicate via sign and P2G. Accessing the community without seriously harming members of the public since she is now 2:1 care in the community. Eating a meal with her peers, not in a completely separate room. Traveling in a vehicle with her peers not completely separately. Learning not to shred everything, clothes, towels, books, and money."
  • "Sensory and impulse control are big! B. loves to lunge, bash, crash, and throw his food/toys forcefully across the room (even if hungry... it doesn’t matter—see ya, plate of food). We work on having him help (often hand over hand), picking up the messes when he throws his dinner. He helps me sweep (hand over hand), and he helps pick up his wrappers and put them in the trash. We are constantly using verbal, gestural, and full and partial physical prompts. He’s very strong and is constantly seeking out that sensory input, as I mentioned. He’s put himself through walls, doors, and windows, so it’s very important that we work to help him find appropriate ways to get that input he needs... happy or sad, the crashing, bashing, etc. is a big issue. So crashing on his crash pad, jumping on his hardtop trampoline, coming to us for arm rubs, etc. as opposed to crashing into a person, or window is what we work on. We work (hand over hand) on teeth-brushing skills. He’s learning to wash hands and dry them without physical prompts. We work on getting him to understand the concept of 'no' and 'stop.' We have 'green go' and 'red stop' signs on things in the house. A lot of 'first this, then that' talk as well."

As for us, we are also working on many of the exact same things. We’re trying to teach Jonah not to bite his hand or hit his head when he’s agitated; we’re trying to teach him how to look before crossing the street; we’re working on reducing prompt dependence, so he doesn’t emerge from the shower with a head full of shampoo or go through the motions of tooth brushing without the bristles actually touching a single tooth—just to name a few.

But I am happy to report a tremendous victory: Jonah has gotten so much better at disposing of things he no longer wants—he doesn’t try to flush books or puzzle pieces down the toilet anymore, or chuck his shoes or his dead iPad out the windows of moving vehicles. Not the most critical behaviors, to be sure, but certainly among the most expensive! It makes me optimistic that he will master these other skills one day, even though we have been working on most of them for years with little progress.

What are you working on?