We seem to be in a more intense phase of trying to understand why the J-Man does some of the things he does. I’m a big adherent of the principle that behavior is communication. When our autistic children struggle with the various common modes of communication such as speech, pictures, and so on, we know we can often get a sense of what they want or need by their behaviors. The more we work on refining and honing our abilities to decipher our children’s behaviors and what they are trying to tell us, the more effective we can be in helping them.
Sometimes behaviors are pretty clear about what our child is trying to communicate (e.g., running around the room erratically making a lot of loud noise usually means overstimulation and too much situational stress in our house) and are therefore much easier to understand and then address. However, there are whole ranges of behaviors that are considered by many to be largely without meaning. But what isn’t so clear to me is why.
Some kids slowly tear paper into little strips or pick up small handfuls of sand and watch them fall through their fingers to the ground. Some call these abnormal, ‘non-functional’ behaviors. Autism is in large part defined by these ‘repetitive and stereotyped behaviors’. But why? Is it because these behaviors aren’t ‘productive’ or ‘useful’? Is it because this falls too far outside the norms of what paper or sand is supposed to do?
A classic example in autism is the whole issue of focusing on part of an object (e.g., spinning the wheel of a toy car) rather than the object itself and not using the object for its ‘intended’ purpose (rolling it back and forth and making car noises I suppose).
What if instead we think about someone picking up a rosary and running its beads rhythmically through their fingers while saying the same phrases repeatedly? Even if you personally have a different religious view, you likely have some understanding of why this practice is important to that person. (Note: I’m not meaning to single out Catholics who pray the rosary. You could just as easily pick any of a variety of religious and spiritual practices, and I think my argument still holds up.)
So why are these practices considered quite normal and not the so-called ‘non-functional behaviors’? Couldn’t each be for a real purpose? Is it only because we can come up with an explanation that makes sense to us for saying the rosary and not one for tearing paper into strips or dropping sand to the ground?
For example, our J-Man likes to pick up sand or food crumbs between his fingers and let them drop back to the ground or his plate. Sometimes he arranges the whatever fine particles he’s dropping into lines or patterns. He’ll do this for quite a long time. Why? We don’t know. Does he gain something from doing this? Apparently so. I think just the fact that he does these things regularly means he gets something out of them, but what that is remains a mystery. Often a mystery, however, shouldn’t be dismissed as it may point us in an important direction.
As far as how we respond, we don’t mind when he does this unless one of a few things happen. If he’s making a huge mess (dropping stuff all over the kitchen – we have a two-year-old and ants to consider!), if it’s delaying something he needs to be doing (e.g., playing with sand in sidewalk cracks at school when he should be going to his classroom), or if he’s making himself very dirty (like playing in dirt piles with his school clothes on), we’ll usually make him stop by telling him why we want him to stop and redirecting him.
As parents we do have a responsibility to define boundaries for our children’s behavior regardless of whether they are typically developing or not. This is one of the most important roles a parent plays. But we also need to try to understand these behaviors. It’s often hard to manage both parts of that equation.
I’m not suggesting we let our kids do whatever, just that we try to understand what seems mysterious to us while dealing with the more practical realities of the situation. While attempting to figure out what he’s telling us through his behaviors and why he’s doing them, we try to ask ourselves a few questions before actually stepping in to stop or redirect a behavior:
Is it *significantly* interfering with something he needs to be doing like school work or errands we need to run? (Emphasis on ‘significant’ as some things you just need to learn to roll with.)
Is it negatively impacting others? This doesn’t mean if others feel bothered because they think the behavior is odd that you should stop it. The opinions of others – particularly uninformed ones – often shouldn’t factor in. But if the negative impact is more along the lines of affecting another child’s ability to learn or harming someone else’s property, that’s obviously different.
Is it a behavior that should not be done in public? While I’m not a fan of obsessive nose-picking, I’ve kind of gotten over things like that. There does come a point where you have to start teaching your child about social rules, though, but you also have to gauge how well they’re going to understand those rules at whatever point in their development they are. However, there are some behaviors (e.g., inappropriate touching of self in public or touching anyone else inappropriately anywhere) that are important to address early and with greater care.
Is he tearing up something important (like bills or school documents) or something like a book that we don’t want him to get in the habit of thinking he can tear up?
Is he making a significant mess? Many messes at home we just live with, though we have to be careful with anything that could draw insects or the curiosity of a two-year-old. If we’re in a situation where a mess or getting messy is a more obvious problem (at someone else’s house, when he’s wearing good clothes, etc.), we’ll intervene quickly.
Is it time for him to move on to something else? For things like crumb dropping, we do set a vague time limit. There are other things we want to do and work on during the day.
Is he actually ‘stuck’ in a loop, and does he need help transitioning to something else? It’s certainly possible for our kids to perseverate on something and be unable to break away from it without help. At some point, you have to step in and reengage the child. While I don’t know how to define with any specificity what ‘too much’ is, I think there does come a point when a behavior starts becoming obsessive regardless of who you are. We just kind of go by feel here.
However, none of these actually address why he is doing a particular behavior. All but the last one – and you could even make a case that it is, too – are just about how we perceive his behaviors impacting whatever we’re doing at that moment.
Beyond these parameters though, how is a behavior like arranging crumbs on a table any different than meditating on a waterfall, prayer chants, or even the apparent neurological aid we get from repeatedly mashing the button on the end of a pen?
Ever seen Buddhist monks do sandpainting? Over a period of days they construct amazing artwork by carefully arranging one grain of sand at a time. Isn’t it possible that the J-Man arranging crumbs on a table and Buddhist monks arranging colored sand into paintings both have many layers of purpose and meaning?
[Photos taken by unsure shot on Flickr]
I mean seriously, do you want to go tell them they are perseverating on grains of sand and that their behavior in creating something they’re just going to sweep away in a few days is non-functional?
Who decides what functional is in many of these cases? We all seem to think we know functional when we see it, but yet no one seems to be able to give an explanation based on something beyond what amounts to ‘just because’. I don’t find this at all satisfying.
I suppose for the nonverbal person who can’t tell us why they do something, we neurotypical people decide what the purpose of something (or lack thereof) is, which is an unfortunate precedent we set all too often. For those who can communicate in some way, often we still decide for them.
Why is the purpose of a toy car to roll? Perhaps many of our kids see things in ways we can’t but with a perspective that is no less important. We do have to set some boundaries, but I worry that we are too quick to correct and try to fix what isn’t ‘broken’. What if instead we chose to wait, reflect on the mystery, and seek to understand?