Being Autistic in Public

The first source of anxiety for Oliver, starting out this week, was that his regular afternoon educational assistant at high school was going to be off yesterday, and there was, as Oliver put it, some “iffiness” about who would be substituting for her.

Oliver doesn’t like “iffiness,” especially where personnel matters are concerned. This anxiety wasn’t all-consuming–”the situation got resolved,” Oliver told me–but it raised the alert level a little.

On Tuesday morning Catherine got hit with a sudden and unexpected bout of vertigo–”It’s like the worst hangover with out all the fun,” is how she put it on Instagram. Her home care nurse advised staying in bed all day.

Her sudden infirmity threw a spanner into the works of my plan to attend the semi-annual meeting of the PEI Home and School Federation on Tuesday night, as with Catherine in bed, and Oliver’s support worker leaving at 6:00 p.m., Oliver would be left without supper and support. We quickly cobbled together a plan that would have Oliver go out for supper with his support worker before 6:00 p.m., and then Oliver left under the watchful-but-infirm supervision of Catherine-on-bed-rest. Not the perfect solution, but a workable one. We thought.

Late on Tuesday afternoon, I found myself at Central Queens Elementary School helping to set up the sound system for the Home and School meeting (sounds systems are complicated and we found several ways to come close to blowing our eardrums out before we got it right). Once we were set, I checked my email and found a just-arrived message from Oliver:

I miss you, this is too much. Today is too much.

I immediately called Catherine at home, and found that the prospect of an evening off-the-rails was causing Oliver considerable anxiety. She suggested I come home. So I begged out of Home and School hosting duties, hopped in the car, and, 30 minutes later, I was at home with Oliver. By the time I arrived, he’d calmed down considerably, primarily because my impending arrival would help to normalize things.

As it was still daylight, and we both needed to get out of our heads, we piled back into the car, with Ethan the service dog, and headed to the dog park to get some exercise. The dog park was packed with frisky dogs, and Ethan got a week’s worth of exercise in 30 minutes.

When we finished up, I realized that there was still time to get to the Home and School meeting in time for the small group discussions about the future of school planning, and, as students were encouraged to participate, bringing Oliver seemed like a good idea.

We high-tailed it out to Hunter River, stopping to grab a grilled cheese sandwich on the way there, and arrived shortly after the small groups entered conclave.

We found a group to join, 8 people gathered together in a classroom in mid-discussion about greenhouses and real-world curriculum. I interrupted the proceedings to introduce us to the group. And then we joined in the discussion.

Oliver and I have a lot of chats about the difference between consultation and collaboration, and a lot of my ideas about this are informed by things that I’ve learned from him. And so there was a certain poetry to the notion that the fulcrum of the Home and School discussion was exactly that. Oliver was engaged in the discussion, and made several contributions. He was enjoying himself.

At various intervals through the hour that was set aside for the small group work, the moderator of the plenary that was to follow popped in to let us know how much time was left for us–”You have 20 minutes,” he said; then “Just 10 minutes left!” and so on.

One of the things that really, really triggers anxiety in Oliver is ticking countdowns: he finds it incredibly stressful to be hurried along and rushed, especially when he’s as engaged in an activity as he was in the discussion, and especially when he’s already had a stressful day. He was able to keep his anxiety contained while the discussions were going on, but as soon as they came to an end his anxiety boiled over, and he lapsed into a full-fledged meltdown.

This involved a lot of yelling, a lot of flailing of fists, and some toppling of chairs. To someone unused to witnessing this, I expect it would have been quite distressing.

It took Oliver about 10 minutes to calm down enough to the point where we could communicate, and about 10 more minutes to get to the point where we could safely, calmly leave the school.

We stopped on the way home to get something for Catherine to eat, and by the time we arrived home around 9:00 p.m., Oliver was relaxed and feeling a little better.

On the way two bed, an hour later, he’d had time to reflect on the day and on the evening, and was very intent on making it clear that he was “disappointed in his actions.” We had a long chat about what had happened, and how it wasn’t his fault, and about steps we could have taken along the way to mitigate the trigger (like asking the moderator, after the first pop-in, to stop the countdown and the rushing).

While the evening’s proceedings were stressful for Oliver, and stressful for me, having meltdowns isn’t unusual for Oliver. It’s not something that happens every day and, indeed, often weeks or months can go by without one. But it’s familiar territory for us.

What was novel for Oliver about last night is that this all played out on a very public stage; that’s why, I think, Oliver was more than usually disappointed–he’d broken down in front of a group with which, only minutes before, he’d been actively engaged.

What was novel for me about last night was that, over the following minutes and hours, I received about half a dozen text messages or emails from friends and acquaintances who were at the meeting, both checking in to see how we were and expressing some confusion about how or whether they could have helped.

So, in addition to everything else, this blog post is by way of answering that question, and providing some context to those people.

Here are some things to understand that might be helpful in future:

  1. When Oliver’s in the throes of a meltdown, and is lashing out and hitting and yelling and toppling chairs, this isn’t an expression of violence, it’s an expression of anxiety. It’s less “bar fight” and more “utterly overwhelmed.”
  2. When Oliver’s in the throes of a meltdown, he cannot hear. It took me a long time to figure this out, but Oliver’s good at describing it now: his senses shut down, and when I’m saying “everything’s okay Oliver, calm down,” he’s hearing “blah blah blah blah blah.” So, in the thick of it, there’s little point in doing anything other than working to keep him and others safe. It’s not the time for reasoning.
  3. It takes a while to fully recover. I know Oliver’s breathing and facial expressions well enough to know where he’s at in the meltdown rise and fall; after the room had cleared, and he was sitting down, he still couldn’t hear me. It took 10 minutes of calmly sitting together before we could have a conversation of any sort.
  4. Having a meltdown is exhausting for Oliver: it’s like running an emotional marathon in 10 minutes.
  5. When Oliver’s in the throes of a meltdown, I’m 100% concentrated on keeping him and others safe. Which means that, in a way that ironically parallels Oliver, I’m not focused on anything else, and I likely can’t see or hear you if you’re talking to me. I have very little memory of the height of last night’s meltdown, and couldn’t tell you how many other people were in the room or what they were doing.
  6. In general, I don’t need help. Introducing new people into the mix would only complicate things for me and for Oliver. If I happen to lose track of Ethan, grabbing his leash and keeping him out of harm’s way is a help. But, other than that, we’ll make our way through a process together, Oliver and me, and we’ll come out the other end of it.
  7. Reaching out to inquire about us after the fact is very helpful and supportive; having a meltdown is all-consuming for Oliver, but it’s also a parenting challenge, and simply being reminded that there are other people in the world, when we’re calming down, is a big help.

Oliver woke up this morning in a good mood, and, reflecting back on last night, he told me that “he enjoyed the creative part, just not the rushing part.” Thank you to the members of our group who welcomed him in and allowed him to participate as an equal in charting the course of how we plan public education; it meant a lot to him, and to me.

In the car ride home from Central Queens last night, I told Oliver that he didn’t have anything to be ashamed about: he wasn’t “bad” for having a meltdown, it’s just how his brain works sometimes.

You tell me this every time this happens,” he told me, and a tone that conveyed resignation and appreciation both.

And it really is just the way his brain works. Some people are musical, some people don’t like spiders, some people have challenges reading, and some people freak out when they’re rushed. The best thing we can do is to learn from what’s happened, get better at mitigating the triggers and shepherding the process.

And helping our friends and family and community to understand that this is simply the way that things work for us. It’s our normal.

And so while Oliver might be disappointed or embarrassed about his actions on a public stage, perhaps there’s a silver lining that others, by virtue of that stage, get to understand a little more about Oliver and how he works.

Comments

Ton Zijlstra's picture
Ton Zijlstra on October 25, 2017 - 17:25 Permalink

Thank you for posting this Peter. Good read and good to know.

Oliver Rukavina's picture
Oliver Rukavina on October 26, 2017 - 17:11 Permalink

and it continues on being like this. Yesterday and Today.

Paul's picture
Paul on October 26, 2017 - 17:57 Permalink

Fascinating post, thanks for sharing Peter.