Parents just don't understand

When you have a child with autism, a school day doesn't go by without thinking that you'll get a call or a note home about some new behavioral issue. Granted, Mowgli has been in a special needs preschool for the last year and a half, so the number of calls have been minimal given the aptitude of the teachers and staff at dealing with it. Regardless, there is one behavioral issue that no one - not the therapists, not the psychologists, not the teachers, and, quite frankly, not even the parents - are prepared to deal with. It is a behavior that truly separates neurotypical children from autistic children. Whereas parents will frequently try to make us feel better by saying things like "Well Bobby only wears sweatpants too", or "Sally hates loud noises and new places", the proverbial buck tends to stop at self-injurious behavior. I rarely bring it up to other parents, particularly parents who don't have special needs children, because first, it is very unsettling, and second, it is one of those super awkward social situations where you leave the other person with no possible way of backing out. Though it has come up, it certainly isn't the kind of conversation that you want to dive into on a regular basis.

Mowgli luckily (and I say luckily, because the stories of autistic children putting themselves in the hospital via self-injury are far from rare) has just one dangerous SIB - he punches himself in the head when he is overstimulated. This behavior (coupled with less intensive pinching and scratching) has evolved over time. When he was younger he would punch himself in the thighs, either once with intense force, or repetitively with slightly less force. Over time, that behavior evolved into head punching, and the more dangerous (though rare) head smashing - which involves striking his head against extremely hard surfaces.

As I said before, a parent of a child with autism ALWAYS expects a call from the school. In fact, you spend most parts of everyday expecting a call from someone. It is one of those lingering stresses of the circumstance - it rarely consumes you, but it never goes away. Again, I've heard from other parents that everyone feels this way. Perhaps, but do all parents worry that the very next call they get at work will be "You have to come and pick up Mowgli, he's broken a number of blood vessels on his head" or "Mowgli lost consciousness briefly during a tantrum"? I know that most people just want me to feel normal, so they try, with good intentions, to explain to me how my son is just like their children. In the end though, my kid isn't like their kid, and he isn't like their kid in very profound and difficult ways. I'm the type of person that doesn't engage in conversations about Mowgli with other parents, not because I'm ashamed, but because I don't think it is fair to engage parents of neurotypical children in conversations that provide them with zero opportunities for anything other than sympathy or pity. It isn't productive, and quite frankly, it isn't fair to the other person, who more times than not is simply trying to be nice.

The last time Mowgli injured himself at school I drove from work to pick him up. I spent the whole trip thinking about just how badly he had injured himself. A week before that, he had nearly knocked himself out on the concrete steps of the Uptown Theater because he couldn't stop obsessing over the Slush Puppy machine, or wanting to walk out onto Genesee Street alone. Everyone there seemed uneasy at the sight of it, and though that normally doesn't phase me, the place was full of special needs parents (it was a sensory-sensitive showing of Cars 2). It is difficult for anyone to witness. When I did finally arrive at school, his teachers looked visibly shaken. There was an eerie silence, and a sense that no one quite knew what to do. What I've realized is that no one does know what to do.

We've developed a behavioral plan and strategy for minimizing SIB, but in the end, Mowgli will be the one that decides. Some autistic children never break the habit (which causes long-term, lasting damage), but most do break it, and many of them find less destructive ways of expressing themselves. Nevertheless, research has shown no consistent positive results in any one strategy for combating SIB. Like everything associated with autism, the behavioral plan is just one more ill-fitting tool in the toolbox that you have to work with. Dealing with autism is always about trying to re-wire a light fixture with a hammer or do rough carpentry with a wrench. In the end you can get the job done, but it never quite feels like you're using the right tool.

I don't want people to stop being interested in Mowgli, or to stop wanting to be compassionate - I just want them to stop trying to make us feel as though we're just like every other parent. We aren't, and trying to convince us that we are just reaffirms how far off we actually are - you shouldn't have to convince someone that they're the status quo. Mowgli's SIB, as well as a few other choice behaviors, have inevitably changed the trajectory of his development (and our development as parents) to the point where it is hard to imagine a circumstance where we could sit with other neurotypical parents and laugh about "kids just being kids". We're okay with that, we just wish that everyone else was okay with that to.