A parent asks: My beautiful nine-year-old daughter has autism and is mostly nonverbal. She has always done some vocal stimming but it has never been disruptive. But for the past few months, she’s doing it much more often and more loudly, and it’s becoming a real issue in our home and at school. We’re not sure why the stimming has intensified, as nothing has changed in her day-to-day routine. She is on a strict gluten-free/casein-free diet. She does go through phases but this one is hanging on. We are at our wits’ end. Nothing we have tried, including PECS, has worked. Clearly we must be missing something.
Ellen answers: Stims (self-stimulating behavior) are common in children with autism, and they are a spectrum within a spectrum, ranging from quietly quirky and relatively harmless to disturbing and potentially harmful to self and others. What we must first understand and accept is that stimming is the child’s attempt to fill a need. Until that need is identified and addressed, the stimming will continue. We may succeed in squashing a stim, but another stim will almost surely arise in its place until the need is filled. Many stims fill sensory needs, some have emotional roots. When a child is nonverbal, vocal stimming is an attempt to communicate those needs in one of the few ways s/he is able. If the stimming increases, so has her need increased. Imagine her festering frustration as she keeps trying to express what’s wrong, and no one gets it. And the more she tries to communicate it, the more she gets shushed. The world in which she lives doesn’t recognize her language. She has no means of functional communication.
When a child’s behavior takes a turn for the worse, looking for changes in his or her routine, environment or diet is the logical place to start. But we must also take into account that a child on the autism spectrum is not a static person; she is growing and changing at an energetic pace, in both typical and atypical ways. As with any person, what worked before may no longer be effective. This “phase” keeps hanging on because her needs remains unmet.
Once we accept a child’s stimming as a legitimate means of trying to communicate a legitimate need, we can then work to identify that need. There are no shortcuts. The best way to address unwanted behavior is to carefully document it. Keep a notebook. When stims go into high gear, note everything about circumstances: what time it is, who is around, what the activity is (desirable or undesirable), noise level, her fatigue or hunger level, etc. Make similar notes for when she is not stimming, but calm and focused or engaged. Be thorough; even the smallest detail may offer a clue. Over a period of time, a pattern will emerge.
If the behavior is disruptive at school, ask for a Functional Behavior Assessment. Conducted by a trained behavior specialist, this will help identify the trigger of the behavior, after which an intervention plan can be formulated and put it place. A speech therapist trained in nonverbal communication and well-versed in autism would be helpful too.
I’ve been there, with a child who would go into violent meltdown when he couldn’t communicate what he needed. We tried many approaches we tried that did not work, and that’s a feeling I’ll never forget. The most compelling thing I learned from our experiences is that there is always a reason for the behavior, though it can be the very devil to pinpoint that reason. For me, it required patience beyond anything I ever thought myself to be capable of. This is why keeping that journal can be so valuable. When we’re in the thick of emotions so all-consuming, it can be very hard to see an overall pattern of behavior. Like our concrete-thinking, visual-learner kids, having something that we can refer back to again and again gives us as many opportunities as we need to let information foment, sink in, teach us. This is one of those times when we can look to our children with autism for answers that work for us too.
I can empathize with that feeling of somehow missing the answer to an enigma. But I prefer to think of it as having not discovered it yet. We mustn’t defeat ourselves. As long as we’re actively searching for the answer, we have every chance of finding it.