My five year old son Duncan loves Calvin and Hobbes. LOVES it. He buries his head in one or more of the several collections we have at the house, every single day. When we go to bed, he has me read several pages of the Sunday color strips to him instead of regular books. He acts strips out, running into the room with a cardboard box on his head and droning, “I am the world’s most powerful computer. Ask me a question”, or using that same box as a time machine with his brother and hunting dinosaurs. We even had a friend make him his own stuffed Hobbes for Christmas (not for sale, we respect Bill Watterson’s anti-commercial stance). Some nights, he goes to bed by himself and reads the strips until he passes out cold, and then I go in and turn off the light. Sometimes he wakes up in the middle of the night and turns the light back on and reads again for hours, which leads to awful mornings, so we keep trying to break this habit. If we don’t, it can throw the next several days off, leading to screaming fits and refusal to go to virtual school. So we try to keep his sleep consistent.
My son is also autistic. We just found this out in November. We’d suspected there was an issue for a while – his preschool had told us for months that he refused to cooperate in class, that his behavior was a problem. He hadn’t talked until he was almost two and a half; he wouldn’t smile at the camera in family photos unless it was one of us taking them; he didn’t always communicate or listen well. We’d had his hearing tested at around three and a half or so, since he didn’t always seem to listen. In March of last year, as he was getting ready for kindergarten in the fall, we had a psychologist from the school district observe him at preschool to see if he should have a full assessment before school started. It was scheduled for March 31, and then California was locked down on the 19th because of the COVID pandemic. No in-person services were to be provided until everything was deemed safe enough.
Finally, in November, after months of virtual school (I’ll do a separate post on what school has been like), Duncan got his assessment. And the verdict: high-functioning autism, essentially what used to be known in America as Asperger’s Syndrome. Side note: While the DSM Manual no longer recognizes Asperger’s as its own syndrome and folds it into autism spectrum disorder, the WHO still recognizes it as its own separate disorder. There are reasons this makes sense to me: Asperger kids are usually extremely intelligent and communicative and have a much better long-term prognosis. And Duncan is definitely extremely intelligent. Right before the lockdown happened last March, he literally taught himself to read by streaming Amazon Music on the TV. I mean that: he figured it out all on his own. We weren’t even really trying to get him to read much. He knew the alphabet and early numbers, but it was by istening to heavy metal through the Fire Stick that he figured out words. The first word he read on his own: TOOL. He and I share a love of the band, and I’m eternally proud. He also loves Iron Maiden, AC/DC. Aerosmith, and Meghan Trainor. He’s got eclectic taste.
Lockdown has been mostly good for him. We knew that he hated, HATED, preschool, and he cried most times when we left him there (and of course, for that, there is enormous guilt now). His behavior improved, he became more snuggly, and we all got closer as a family. However, the night wakings could be brutal – there was almost a solid month-long stretch where he and I and Julee never got a full night’s sleep. It was exhausting, and it threatened my sanity more than once. He still had outbursts, and we couldn’t get him to cooperate much, and we were too tired to push it too far. And then virtual kindergarten started.
That was a whole new nightmare. We still hadn’t received his assessment yet, so even though we knew there was an issue, we had no idea what it was, and his lack of reaction when we got upset with him, made us worry about so many possibilities. And while everyone hates online school, Duncan REALLY hates it. He can do the work – in fact, he was the most advanced reader in his class, and he picked up concepts quickly and easily, when he wanted to. We would learn later that this proclivity for focus has to do with “preferred activities” and “non-preferred” ones. You can figure that out, but it’s absolutely true.
Basically, what Asperger’s, or autism, seems to mean in our particular case is that Duncan is five, and his disorder amplifies his being five. Everything that’s difficult about having a five year old is more difficult. Tantrums are bigger, longer, and fiercer. His struggle to communicate with us is bigger, because when he gets overwhelmed, he just can’t figure out how to tell us what’s wrong or to calm down. And his bullshit detector is SPOT ON. He’s honest, even when he’s lying to us, which is both hysterical and worrying. When he doesn’t like something, he Lets. You. Know. If he wants something, he really, really wants it, and if he doesn’t get it, he goes ballistic. We have extra childproof locks on all the doors because we’re worried he might open one and wander off.
Except that he doesn’t want to be anywhere but with us, his family. Because he also loves us with a fierceness that is humbling. We are most definitely on his “preferred” list, and even when he yells at us, insults us (using insults he learned from Calvin, which is my fault and I’m trying to remedy), and seems cold, he reminds us as soon as he settles down. His anger forgotten, he grabs a book and snuggles up in my lap and asks me to read, because even though he can do it himself, he still wants that closeness. And so even if I’m still mad, I do my best to let go of it and read to him.
We’ve got a long way to go to really help Duncan be successful in life. And that’s all I want – for him to be able to live on his own, have a job he enjoys, maybe a relationship, whatever will make him happy and fulfilled. We don’t understand how he works yet, even though we know him better than anyone else. The Latin root of the word autism is “auto”, which I had never really thought about as meaning “self”. Duncan is a world unto himself, and it’s a fascinating, scary, dangerous world that we as his parents have to be brave enough, kind enough, and selfless enough to explore. We need to be like the bold, intrepid Spaceman Spiff, throttle that saucer down, and meet Duncan on his own terms. And that’s the hard part, because we just want to be able to get him to do what he needs to do or we want him to do, but we have to come to him. And it’s exhausting, heartbreaking, and rewarding.
I love my son with all of my heart. I get frustrated and furious with him, and I lose my temper, but I always try to remember that he’s not doing it on purpose – none of our children are, at five. And I have to learn how to be okay with meeting him on his terms, on his world, because that’s where he lives, and he won’t venture out unless we give him a reason to. So, to get him to come to us, we have to go to him first.
So I’ll be trying to post on this blog regularly, mainly about Duncan, but also about Ryder, who’s still a big part of this as well, and about whatever else happens to be on my mind. I need to start doing this regularly for myself. It helps to talk about it. And I hope it helps me and everyone else understand a little more about autism, because it doesn’t always look the way you think it does. I’m learning, every day.