The puzzle association with autism is no accident

posted by Jeff | Saturday, May 1, 2021, 9:56 PM | comments: 0

Last night, rocket scientist and YouTube genius Mark Rober, along with Jimmy Kimmel, did a three-hour fund-raiser for adult autism charities, and it was pretty great. Simon and I watched the whole thing, and he was fixated on the beaker graphic showing the donation totals.

Between celebrity appearances, they had a lot of great stories from autistic adults of every flavor, and it was one of those reminders that autism doesn't mean the same thing for any two people. I can't imagine being non-verbal or having difficulty controlling my body, while having a brilliant mind that can't easily manifest what it's thinking. The problem isn't always that the autistic person can't fit, it's often that society doesn't know how, or is unwilling to meet them where they are. Fortunately, a lot of employers are figuring out ways to utilize these adults with great success.

We had a fun night hanging out, but tonight was rough because something about having to shower before bed set him off into a meltdown. In the postmortem analysis of one of these, you try to figure out what happened, but in the moment, you focus on how to deescalate, because rationalizing the trigger won't do anyone any good. I also find myself cataloging the current crop of ticks, some of which are harmful (picking skin until it bleeds), and others which will make him a target of cruel peers (a compulsive shrugging thing that he knows he's doing).

All things considered, I don't think I've observed anything that might derail him as a functioning adult, but he has needs that are not being met. In his education, he makes the honor roll, while being behind in reading by a half grade level or more, depending on the assessment. He can seem to compose in small doses, but blank lines on a page produce a panic response. Even after getting back to in-person schooling, he isn't quite getting what he needs to meet him where he is, and for that reason, he'll go to a private school next year instead of getting lost in a middle school of 2,600+ kids. The next three years will be critical.

Meanwhile, the social and self-care skills we try to address via therapy, which we're now doing every other week. This doesn't have the clear objectives that we have with education, and often we focus on what happened the previous two weeks and look for ways to better prepare him. For example, this week there was a partner activity at school, and the kid he normally works with was out, and no other kid wanted to work with him. I heard the tears when he got home, and I knew, because there's a despair he feels that's different when external forces make him sad, as opposed to his own choices.

Trying to figure out how to help, in a way that teaches him to help himself, is a puzzle. Professionally, I'm good at puzzles... putting the right people together to build a team, coming up with the plan for people to work together, defining a problem so we can arrive at a concise solution. These are my super powers. But those skills don't translate well when you have an 11-year-old crying for reasons he probably doesn't understand himself. "Normal" is an "N-word" of its own kind in autism circles, because it implies that anything else is broken or substandard, but in the darkest moments, I'm not going to sit here and tell you that I don't wonder why my child couldn't have a more typical development experience. It can be heartbreaking.

I am still struck by all the things that he goes through that I can relate to in a deeply personal way, when I frame it in the context of my own childhood. Rober closed his fundraiser making the point that autism doesn't go away, and if you've ever had irreconcilable emotional situations, lost friends for reasons you don't understand, or socially find it difficult to adapt, autism could explain a lot. I'm glad that Simon has the diagnosis because it at least reduces that ambiguity about why he sometimes struggles. I'm not sure I have the balls to get a formal diagnosis, even if my therapist, who is not a psychologist, believes many of the stereotypical traits are there. If it's true, it's almost a relief that explains some difficult times. If it's not, then I may feel genuinely defective, which certainly isn't healthy.

But I'm deeply empathetic with Simon. I know what it's like to be in a state where something happens and your brain simply can't reconcile it in a logical way. I also understand his sense of loneliness, and seeing how he expresses it makes me understand how much I used to repress it. Despite the empathy, it doesn't always lead to connection, and I sometimes tell him that I'm doing the best I can.

While I'm nervous to see what happens when hormones are added to the mix, I feel like we're doing all the things. Tomorrow, we're going to try and have a little fun.


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