Working with Rhythm today, I came to the realization that there’s a significant time lag in a lot of his responses that I suspect is common for autistic people (children and adults) and often gets read as uncooperativeness, inconsistency, or other negative traits.
Simplest example. I asked Rhythm if he needed a potty break and he shook his head “no” (he’s quite good with using the toilet, but regular reminders help, especially if his attention is on something interesting). A few minutes later, he signed “potty,” asking for a bathroom break, and I realized that it had taken him a few minutes to think about it, switch his attention from the current activity to focusing on signals from his body, realize that he was ready to use the toilet, and communicate that to me.
I’ve seen the same thing in other situations. I’ll ask if he’s hungry or thirsty and get no response– it seems like he’s ignoring me completely. But then within 5-10 minutes, he’ll ask for food or drink. And it often takes me a few minutes to talk him into doing something or switching activities. Getting ready for bed tonight was another example.
It was nearing bed time. He took me to the front door and said “muh!” which might have been a question about when his mother was coming home, but my best guess was “you want to go out and look for the moon?” which was rewarded with emphatic nodding– it’s so much easier to understand children once I know what things they like! We went out and looked for the moon, but it was cloudy out. Then I had to physically resist having him drag me off on an adventure for a few minutes before he finally agreed to go inside and take his bath (which isn’t usually a hard sell– he loves baths).
I rarely resort to using my adult strength against his, but it was partly a safety issue in this case, so I held him back while explaining that it was nearly bedtime and also we couldn’t just wander off at night leaving the house unlocked. For five or so minutes, you’d think he either wasn’t understanding me at all or just plain didn’t care, but then he stopped trying to get me to take him down the road and let me lead him back inside.
Caretakers, therapists, and teachers often describe this kind of behavior as “willful” or “stubborn,” interpreting these delays as the child is insisting on making their point before bending to the rules– and I think this is sometimes the case, especially in young neurotypical (non-autistic) kids. It’s necessary, to some extent, for children to do this– to assert their independence, to prove to themselves that they have some amount of decision-making ability in their own lives– although too much of it is definitely exhausting for caretakers (after all, we’re talking about the defining characteristic of the “terrible two’s” here– the “no!” phase).
But in autistic children, I think it’s important that we take into account the likelihood that the child is simply taking longer to understand, think about, and respond to what we say. And they are probably utterly bewildered (not to mention emotionally hurt) if they are punished or treated as a disappointment for not cooperating sooner.
Processing time. Response time. These things are not the same in autistic people as in neurotypicals. Many autistic college students have mentioned to me that they dread class discussions, or other situations where they are expected to respond to something within a matter of minutes after having the relevant material presented to them– to say nothing of the difficulty with breaking into a discussion when their attention is already completely dedicated to processing what others are saying, never mind coming up with thoughtful responses and navigating the subtle social cues of when to cut into the conversation. (There’s a truly excellent first-hand description of that experience here: https://thethirdglance.wordpress.com/2011/12/28/words/)
If we are going to design a world that works for autistic people– or even simply make the autistic people in our own lives more comfortable– we need to take these differences into account and remember not to jump to conclusions about someone’s thoughts simply because their response is delayed, difficult to determine, or changes after they’ve had more time to think.
I wish I had the time and brain-focus to write about every single time I take care of “my” kiddos. It’s a wonderful experience and I get so much from them. Sadly, I’ve been realizing just how temporary a pleasure it is. Not only do children grow up so quickly, but this job isn’t exactly permanent– for me or for the families I work with. Fishy’s family has been so busy I haven’t seen them in months, and Tangles’ family moved out of the city a month ago. I haven’t had a chance to see her since, although her mom and I remain in touch and apparently she’s doing very well at her new school. I miss them both terribly, though, along with Plumpkin, an actual baby I’ve been babysitting lately, whose family has also just moved.
My most fun lately has been spending time with Rhythm. I generally care for him in the late afternoon and evening, and it’s often after a frantic day. When I’m worn out from far too much verbal input (i.e. conversation) for my comfort, drama, and/or chasing a toddler around, it’s wonderful to be able to relax with someone who just wants to sit quietly doing soothing repetitive activities. I’ve begun to feel like babysitting him is downright therapeutic for me! Even on our most stressful days, he’s such a great kid that I always leave his house with a smile.
I love the way Rhythm says “oh yeah” for “yes,” and sometimes runs several of them together when he’s excited: “ohyeahohyeah!” — with wide eyes and eyebrows up, like he just got a pleasant surprise. I love the way he nods “yes,” too, pulling his chin up with an inhalation, then bringing it down to his chest sharply, decisively, as he breathes out, as if he’s just made a very important decision. He loves to laugh, but can also be charmingly sincere and almost majestic at times, like a little prince addressing his subjects. I love the way he solemnly offers to share his food with me, holding a bite out to me earnestly and waiting for me to either accept it or say “no thank you.” I love his ways of showing affection, like taking my arm and placing it around his shoulders as we sit together on the porch swing.
He’s a real joy to be around. I hope that he will always have people in his life who appreciate him as much as I do. Fortunately, this seems to be the case. His family adores him, and at every party they’ve thrown, I’ve seen how much their friends are fond of him as well. The other kids welcome him even when they don’t understand him, and he’ll wander in and out of their activities without anyone remarking on the strangeness of his behavior. I wish every autistic child could be so lucky. And I count myself lucky to know him.