The behavior that wasn't

When your ASD kid starts prodding around his rear constantly while on the toilet, you — like us — might think it's a new tic or stim. You'll think, "Obsessive noodling back there might be a sign! We must fix this, and quick!" That's how we felt the past several weeks when C started his backyard explorations with great vigor and persistence. I mean, it was getting gross. And worrisome.

Then, the other night, my wife looked at the toilet paper and saw them. THEM! Tiny pinworms, a parasite so common that the first four pharmacies she called were sold out of the over-the-counter remedy.

No wonder he was constantly fiddling around with himself: he was scratching an insatiable itch. And what did we do? We did what you do when faced with a challenging new behavior: we offered quiet reminders and gentle redirection. No shame, no guilt, no punishment. But no real help, either.

And now we're kicking ourselves. We were pathologizing a behavior instead of looking for a much simpler, more logical explanation.

This is the trap you can fall into: thinking everything is an Issue, something to be fixed or corrected. (Of course, it would have helped if he could have told us what he was feeling, but that's another post).

Anyway, we have a new motto: not everything’s a behavior — sometimes it’s worms!

As for the the remedy: it works. One dose and the digging stopped.

The opposite of high

The opposite of "high" is "low," correct? So when a parent says their child is "high-functioning," they're saying other children are "low-functioning." Even if they don't think that's what they're saying, that's precisely what they're saying.

But what even determines high-functioning vs. low? Having a savant-like skill? Verbal acuity? Passing as "normal"?

My sense is that it's that last one, that the term "high-functioning" is used by parents who feel their kids are close to "normal." Their kids can pass. Maybe it gives these parents some comfort to use that label. I guess so, since I see it used out of context all the time. For example, some parents sign their emails, "Parent to Billy, high-functioning autism." Ugh.

Like some others, I felt that the DSM-V's elimination of the sub-types Aspergers, PDD-NOS, ASD, etc. was, in some regards, problematic. In certain situations, these labels help add context; they are useful in understanding the strengths and challenges one might face.

The APA must have realized this problem, because the latest iteration includes levels of severity for ASD, from Level 1 to Level 3. These, however, are clinical distinctions, helpful in some situations but not in general conversation.

Which leads me to this: maybe all these labels are just problematic to begin with. Maybe the term "autistic" is sufficient. Or maybe even that's too much, I don't know.

So how about this? If you do feel the need to help someone understand what's going on, maybe just talk about the specific issues, and leave the labels at the door.

Not picky, anxious

Last week, C ate things he's never eaten before. Strange, exotic things like pancakes, chicken, a croissant, some bread, and a few leafy greens. Maybe this doesn't seem like big news, but it is.

Prior to last week C ate approximately five things: nuts, crackers, yogurt, fruit, and protein bars. But he's not a picky eater. Scratching your head? It's true.

Enter anxiety

Anxiety is far more prevalent in people with autism, and C has a lot of it. Tons of it. It manifests itself as rigidity, a fear of the new or unexpected, phobias and perseverations about things he can't change like his age, gender or skin color. Yup, it's true.

When he was younger, he ate most things we offered him. (We had to keep him eating a lot because his lung disease meant he burned calories very quickly, and many kids with this condition end up with a feeding tube. C, fortunately, did not.)

As he's gotten older, his anxieties have become more pronounced, and food is no exception: if he sees something on his plate that doesn't belong, that breaks with expectation, he can have a full-blown, tear-strewn meltdown. Not an angry meltdown, but something closer to a severe existential crisis.

The $100 slice of pizza

When we go anywhere, we have to bring separate meals and snacks for C. At birthday parties, people ask, "Is he on a special diet?" I say, "Only by his own choosing, and if you can get him to eat a slice of pizza, I'll give you $100." And I mean it.

Telling others about this often results in The Picky Eater Lecture. E.g., "Oh, my son was a picky eater, and now he eats anything! Just be patient." Or, "We used rewards and it worked." Then there's, "Only feed him things he doesn't like and eventually he'll get so hungry he'll eat them." They chalk it up to some behavior issue, when in fact it's the result of deep-seated anxiety.

We've been working on this a long time, trying to break down the anxiety by introducing new foods slowly and without pressure or duress. It's a focus for us not just because his diet is a hassle, but because he needs to eat more than crunchy carbs.

So what changed?

Why is he suddenly willing to try a few new foods, albeit very hesitantly and sporadically, especially at a time when his anxieties are more pronounced than ever?

We have our theories, but one thing in particular stands out: his school has cooking sessions. They go shopping in a grocery store, purchase ingredients, follow recipes, and eat the food they make. C loves this process...up to the eating part! So we started cooking with him at home, too.

Whereas he's normally a ball of non-stop movement, he stands patiently (mostly) on a step-stool at the kitchen counter. He loves the measuring, the cutting, the process of it all (natch!).

I think this sense of control over the preparation of the food is making the final product less fear-inducing, more approachable, more comprehensible. It's no longer a foreign substance that mysteriously appears on his plate: it's something whose very creation he contributed to.

The real point here isn't about how C is eating more foods, but about how he's overcoming a limiting anxiety. We're not bribing, cajoling or forcing him to change; we're trying to help him take control of the fear and perhaps turn it into something positive.

Who knows, maybe at some birthday party in the not-too-distant future, he'll actually eat a slice of pizza. One can dream, right?

Small victories

C's fingernails are a little long. Mental note: trim them during bath time tonight.

But wait. I haven't trimmed his nails in a long time. I haven't needed to: he's been chewing them himself. In fact, he was even chewing his toenails (flexible little bugger).

Anxiety.

The past couple of years brought a lot of it, and along with it came things like head-banging, shirt-chewing, licking (everything in sight!), and nail biting.

Most of the more obvious signs have abated since he's settled into his new school with its smaller, quieter classes. And now the nail biting is apparently gone.

So tonight I'll trim those little nails, and I'll picture the anxiety falling away with them. And I'll remind myself that progress isn't usually measured in big leaps and bounds, but in victories as small as overgrown fingernails.

The twin bond

We didn’t experience the almost supernatural bond between our boys that many other twin parents talk about…the secret language, the shared connection.

In fact, what we experience most of the time is two kids who exist not just apart from one another, but in separate worlds. Two boys who share almost no interests, as different from one another as any siblings can be (physical similarities aside).

And yet there are these moments when a bond does make itself apparent, its existence indisputable. For example, seeing C revel in M's enjoyment of an iPad app (see photo above), or finding them sleeping together, arms and legs entangled, faces an inch or two apart.

I now know they are connected — perhaps not in that special twin way, if such a thing even exists. But I know that, despite my earlier fears, my boys love one another very much. Even a newfound sibling rivalry is welcomed, because it means engagement, entanglement, connection.

And, once again, I find myself letting go of “normal" or “typical.” (What is normal or typical anyway?) Instead, when I can let go of those expectations, I find myself open to experiencing something else, something even better.