My son’s autism is punctuated by extremely high anxiety levels; so high, and so hard to manage, that we specifically asked his developmental pediatrician to re-evaluate him for a separate anxiety disorder in addition to the autism, and to consider putting him on meds. She concluded that the anxiety was purely part of the autism, and was extremely reluctant to put him on meds considering he was only four years-old at the time. She suggested more management methods (which we were already using), and told us to just persist. Over time his anxieties have become more manageable, but they still make almost every part of every day, exhausting and difficult.
The best summary I can provide of what it’s like to live with – and how it so differs from his neurotypical brother – is that it’s like every little thing matters and has consequences.
The clothes he wears must be just-so. That used to be they had to be a certain type of cotton, with no zips, no socks, no hats. He’d refuse to sleep under sheets, even in winter. Now it’s that the buttons must always be done up, preferably add up to three, everything that can be in a bow must be in a bow, socks must be pulled up high and the sock heel must be positioned “correctly.”
The food he eats must be just right too. The pizza crusts he’ll eat must not have any glazing on them, or any evidence of ingredients showing on it. Jam sandwiches must not have any butter, and preferably number six pieces to a plate. I’m just happy we got him past only eating chips that must always be present to a certain amount in front of him (endless top-ups).
Everything has rules and expectations and order. At its worst he was controlling the windows and doors and seating arrangements, and who was allowed to talk. Currently he even controls my facial expressions; again though, I am glad that he even makes eye contact and knows how to read what my facial expressions mean.
How does he control these things? Why don’t I just stamp it out as naughty behaviour? First off, it’s not “naughty”, it’s anxiety; he doesn’t scream and shout and tantrum if he doesn’t get his way, he cries and shakes and shrinks into himself. It’s like watching someone disappear in front of your eyes, to the point where your words don’t penetrate and their senses shut down, leaving a trembling terrified person, who can take hours to calm down. This used to involve self-harm. There are days where one meltdown early in the morning, have meant that he’s wired high for the rest of the day – where even more things than usual will set him off.
If I’m not careful and ever-watchful, whole new obsessions and anxieties will regularly infiltrate his daily life. I have to be constantly mindful of his reactions and particularly aware of any new repeated phrases or behaviours he exhibits, as first signs of an emerging problem. If I’m light-hearted at those moments, and gently move him away from the thing that he’s starting to get anxious about, I can defuse the new bomb before it’s set up. If I’m distracted at the time or don’t treat the situation in the correct way, I may have to pay the price with months (or even over a year) of behavioural consequences.
His neurotypical brother doesn’t get hang-ups about things. He has preferences, but he doesn’t obsess. He throws tantrums, but he never has meltdowns. He’ll cry when he’s upset, but it never goes on for hours. Mostly he is happy and relaxed and easily distracted and amused. He is a “normal” kid. Sometimes I catch myself being on edge around him, watching for emerging anxieties and behaviours that never happen, because he isn’t autistic. I have to remind myself to relax, every tiny thing doesn’t matter. But as soon as my autistic son comes home from school or walks in the room, I have to ramp up my own awareness again, or pay the price for forgetting to do so.
It is exhausting. It has made me anxious too (not surprisingly). Sometimes it makes me so mad, or incredibly sad, but almost always frustrated beyond belief. I keep using the management strategies we have in place, and introduce new ones as needed. To a certain degree they have become automatic, but because they require such high levels of awareness and responsiveness, they still require a particularly high level of constant alertness on my behalf.
I do sometimes still wonder whether my son would benefit from medication to bring down his high levels of anxiety, just so he can function without so often being on the edge of a meltdown. But until and unless his developmental pediatrician agrees, I accept that this is just how it has to be for now. I’m hopeful that time – and the language and skills that come with that time – will bring down the anxieties to a level that medication isn’t a thought that crosses my mind anymore. I don’t want to medicate my son, I’m aware of negative side-effects, and I am impressed with his progress (he’s never been on meds for his autism) over the past two years.
Just one day at a time then for now, with a large dollop of hope for the future, and a fair heaping of faith (perhaps the wrong word) that his pediatrician is correct that what we’re already doing is the best thing for him. It’s part of why I read so many books and blogs and articles about autism everyday; searching for reassurance that we’re doing the right thing, and new approaches if we’re not.