Every year, Ye Olde Blogge celebrates Autism Axx Month with posts reflecting on autism. I use “Axx” because it can signify Awareness, Appreciation, or Acceptance—depending on who you’re asking. It seems to change every year as someone comes up with another bright idea for how we should be framing our views of autism. Duration can vary, too: is it a day (April 2), a week (the first week of April), or the entire month? Again, it depends on who you ask.

Last year, it evolved to be a weekly post about autism. I like that. It fits with my posting speed and ability. The question always becomes what to write about: explaining autism to the uninitiated, providing helpful hints on how to cope with the people on the spectrum in your life, sharing my experiences of living with autism? Mostly, it is all of them.

For me, autism is deeply personal. I am autistic, and my daughter, mother, sister, and nieces are as well. My maternal grandfather likely was too. Every year, I have many autistic students in my classes.

For this year’s inaugural post, I think I’m going to be very personal. My goal is to help people to understand what it is like to be autistic, but, you know what they say, if you’ve met one person with autism, you’ve met one person with autism. That’s because it is more of a syndrome, which means it is a collection of symptoms rather than a disease which follows a predictable progression through stable regularly occurring symptoms.

This morning, I awoke at 5:14 AM — I looked at the time — from a disturbing dream that left me short of breath with a galloping heart rate, and a racing mind. In the dream, I had helped someone. Somehow it involved tape. I hate tape. I always manage to fold the adhesive side into itself or get it stuck on something it is not supposed to be stuck to. During our recent weeklong school trip — another reason March was such a poor posting month — I was the first aide person and I bandaged lots of skinned knees, scratched fingers, and banged heads. There were lots of mishandled adhesive surfaces, too. Maybe the dream was helping me work out all of my residual frustrations.

In the dream, I was bandaging someone using some of that cloth medical tape. Then, I moved on to thinking about what I had to do and when I had to do it. I was very focused on what I should be doing next.

That’s a common issue with autism. The world seems very arbitrary. Schedules, deadlines, protocols, all of it is somewhat arbitrary, which isn’t to say that it isn’t based in some factual necessity. For example, why is 15 April Tax Day? Why not 16 April or 20 May? How easily is an extension had? You have to have a day, I guess, but the particulars are buried under some obscure reasoning that most of us will never see or know. And, thank you to that commenter that will feel the need to explain why 15 April is Tax Day rather than take the larger point. I appreciate you; I really do. I enjoy that type of trivia, but I also like the larger point here.

Essentially, I was experiencing a daily worry: What should I be doing right now and how do I know it is the best thing for me to be doing? Worrying about work related tasks can be especially unnerving. Another aspect of autism is that you don’t always get the subtlety of instructions. There are lots of assumptions made when giving people directions for what you want done and by when. Autistic people usually get those assumptions wrong. I’ve learned to ask questions — stupid obvious questions that annoy people in meetings and my supervisors afterwards — and I still make mistakes and have to scramble to make up for them. It is a serious source of stress for me and probably many other autistic people.

This dream represented the feeling that there is a secret code that the rest of the world is following but that I am not. If I just understood the code, then I wouldn’t be filled with such doubt and anxiety, looked upon with such disdain by the well-intentioned people around me, and I wouldn’t make as many mistakes that are met with exasperation by those same well-intentioned people.

And, then the real hammer dropped. Some high muckety-muck pulled me aside for a talking to.

“The one thing about duct tape,” he said, and I’ll remember these words verbatim for a long time, “is that you have to keep after it. You were supposed to make sure that Pete was taking duct tape home with him,” implying that I wasn’t.

I wasn’t. I had been caught. How did he know? I wondered. I hadn’t realized that that was part of my taping responsibility, though. It wasn’t clear to me. Why did he expect me to know this? When and where was this ever communicated to anyone? In real life, these things are often clearly spelled out, but I’ve just missed them because of anxious distraction, but sometimes they are not and it is left to implication.

Still, I was in trouble… again. Maybe not with this person in this job, but this has been a recurring event in my life, and it fell upon me like a literal ton of bricks. The old failure coming back to bite me in the Achille’s tendon.

“Luckily,” the muckety-muck continued, “he was taking duct tape home.”

“I knew that,” I responded weakly. I knew the fellow didn’t believe me. In the dream, I hadn’t known that. “I knew that so I didn’t need to remind him,” I continued hoping to convince the high muckety-muck.

That’s when I woke up panting, worried, and feeling like life was too much for me to cope with.

The dream lingered.

“I had been watching him to see if he was taking duct tape home,” my waking self reasoned to my dreaming self and the fantom high muckety-muck. “I often do that. Watch to see what is happening before intervening to make sure an intervention is necessary.”

That part is somewhat true. I am the consummate observer. I notice many things that other people do not.

I am also incredibly passive. Asserting myself is tremendously difficult. I hate it. I hate asking people for help. I hate pointing out mistakes that people have made. I hate talking on the phone. There is so much about interacting with people that I hate.

Yet, paradoxically, I like being around people. I like discussing things with people. I hate it when discussions go wrong, though, and I have said something stupid or awkward or insulting. It happens all too often. My anxiety spikes. Self-recrimination ripples throughout the minutes, hours, days, weeks, months, years to follow slamming into my consciousness at unexpected moments and driving me to my knees with anxiety far worse than when it happened.

That dream represented my life as an autistic. It was all right there.

Image Attribution

This image was found on wislingsailsmen‘s Deviant Art page using a DuckDuckGo Creative Commons image search.