Talking about Autism…Sort Of

This past week, we finally had our long-awaited appointment for Theo with a developmental pediatrician. We’ve been waiting for this appointment since July, so it was a relief to finally have it! Our medical group has only one developmental pediatrician in the region, so as you can imagine, she has a pretty long waiting list.

Honestly, we don’t know much yet. And I debated not even saying anything, since we don’t really know much. But then I decided to share what little bit we do know…I suppose mostly because I rarely talk about what’s going on with Theo other than funny little stories, and the truth is that a lot goes on.

To sum it up in one very short line, we wanted this appointment because Theo seems to be struggling with anxiety and regulating his emotions. And we’ve tried everything—everything!—in our bag of tricks to help him, and we’re sort of out of ideas. And we’re also unsure of how much of it is six-year-old boy, how much is just Theo’s temperament, how much is emotional immaturity, and how much (if any) is related to whatever autism-y thing they seem to think he has. All we know is that the poor kid is fine a lot of the time…and then really crashes badly at some other times. And it’s heartbreaking—to us, as his parents…and probably to him, as the person going through it. So we want to understand it a little better, if we can, so we can help him learn some tools to cope when things are rough for him.

We still don’t have any answers. What we do know is this:

  • We both very much liked the developmental pediatrician. I can see why she’s booked out so far. She was excellent—with us and with Theo. She talked to us at length, and then we were able to observe through a glass and with headphones on while she talked to Theo. She was great with him, and he seemed to warm right up to her.
  • It was heartbreaking to hear him talking about some of the “bullying” types of situations that have been going on at school already. Chris missed that part because he was out in the waiting room with Sam, who by then had gotten fussy, but it was heartbreaking. I cried. Theo didn’t, but I did. Why do kids have to be mean to each other??
  • She got a pretty good picture of Theo in the time he spent with her. He was cooperative and agreeable, as he is much of the time, but he was his usual intelligent, interrogative, intense self. And afterward, she said she could very clearly see the intensity we spoke of.
  • She suggested we have him reevaluated for autism. She suspects he probably still falls on the spectrum, though to a lesser degree than he was initially placed by the school district. Given that the school district already described him as “high-functioning autistic,” I’m not sure how he could be less on the spectrum, but we’re fine with a reassessment. If it can help us understand how to help him, we’re all for it.

Interestingly, she didn’t seem to think ADHD was likely. Chris has long wondered whether it’s more ADHD than autism, just because his “symptoms” seem more like ADHD. And this pediatrician specializes in both autism and ADHD (along with developmental delays and a few other similar issues), so it didn’t seem like she’d be predisposed to diagnose autism over ADHD. But she seemed to think it was more likely autism. She can’t make a diagnosis without further assessment, obviously, but that seemed to be where she was inclined to think he fell.

The truth is, it really doesn’t matter what it is, because we don’t wish to go the medication route regardless. From what we understand, the difference between an autism diagnosis and an ADHD diagnosis is kind of twofold: (1) ADHD is usually treated with medication, whereas autism is not; and (2) autism has a bit more of a stigma at the moment. So really, to us it doesn’t matter what it is. There’s no stigma either way for us—and I wish there wasn’t for Theo, but obviously that does exist to some degree. Though with the rash of diagnoses in recent years, at least he wouldn’t be the only kid with it, I’m sure. And because we aren’t considering medication for him, it doesn’t really matter what the eventual diagnosis is in that respect.

How it does matter is that if we know better what may be going on, we hope that we can find some strategies that work for him. It’s pretty darn hard to try to work with him when we have no idea whether outbursts are brought on by autism, ADHD, anxiety, or none of the above—just normal six-year-old stuff. We try various strategies and see what (if anything!) works, but it’s like throwing a hundred darts at a dartboard and hoping that one out of the hundred darts sticks. I suppose you could say we’re hoping to narrow the playing field by understanding what’s going on.

The developmental pediatrician also said that if we get an updated diagnosis, we may be eligible for some services that could help him—presumably things along the lines of applied behavioral therapy, which I have mixed feelings about…but that’s another story for another post.

Somewhat validating, actually, was something the pediatrician said. Chris and I have long said (between the two of us) that Theo’s stages and behaviors don’t seem to be anything too out of the ordinary for a little boy—just much more intense than many. So the same things frustrate him that frustrate any little boy—but he reacts with much more intensity than we’ve seen in other boys. And his interests aren’t anything out of the ordinary (well, okay, elevators is a bit unique!), but he dives into them with a focus and intensity that is rather extreme compared to most kids. That’s one reason we’ve thought he was gifted (rather than necessarily autistic—though really it could be both)—gifted children are often characterized as very “intense,” and Theo certainly seems to be that. After going through our detailed written assessments and his kindergarten teacher’s written assessment, and meeting with Theo for quite a while on her own, she agreed with us and said, “Nothing that he is experiencing seems out of the ordinary, necessarily—just extremely intense. We need to help him find some tools to handle that intensity.”

One last interesting point: Chris and I had to fill out detailed written assessments separately, and Theo’s kindergarten teacher had to fill one out, too. We weren’t to look at anyone else’s or discuss them, and indeed Chris and I followed those directions and did them totally independently. Interestingly enough, the graphed results of the three assessments (mine, Chris’s, and the teacher’s) followed nearly the exact same curve, though at slightly different levels. All three of us answered questions that scored him in the “normal” range on many things, but for all three of us, he spiked into the “outside the norm” range on attention, focus, and thought processes. I just found it interesting that clearly the three of us all have the same picture of his progress and behavior. Makes me feel like I’m not nuts, I guess. 🙂

So the appointment went well overall. And we’ll be getting a reassessment done whenever that is scheduled (sometime in the next couple of months, I assume). But all the same, I came home and burst into tears after the boys were in bed. For three years, Chris and I have been saying, “Well, who knows if he has autism? The school district didn’t seem very sure. And I bet in a few years, if they reassess, he’ll no longer be on the spectrum, because he’s so barely on it right now.” And I honestly thought I was fine with it—that I was at peace with it. But maybe I wasn’t, because the fact that the pediatrician seems to think he probably still falls on the spectrum made me break down and cry. I don’t know why. It doesn’t change who Theo is or how I feel about him…but for some reason, it just stung. I guess I was clinging to a little hope that she’d say, “Why are you here to see me? Everything he’s doing is 100% typical. Go home and quit worrying!”

But then, you never quit worrying as a parent, do you? 🙂

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