Living with Autism
On Twitter, at the end of 2016, I wrote a thread about what it’s like to be me, a 40-year-old with autism. I’ve brought that long thread here, because it’s easier to read in one place. Some content has been mildly edited for flow or grammar.
My autism diagnosis in my 20s explained all the things that didn’t make sense in my life. I still have bad days, but they’re bearable now.
Autism isn’t who I am, but it will explain why I don’t like crowds, loud places, or physical contact. I can be mercurial in social settings.
Autism doesn’t mean I don’t have feelings. I feel a wide range of emotions, but I don’t express them like other people. I might lash out.
I have a finely-tuned sense of humour, with literally thousands of programmed responses to appear “normal”. It is as exhausting as it sounds.
If I don’t concentrate, or I get tired, my usual efforts at looking or acting “normal” dissolve, and you see the real me. It can be jarring.
I became an actor and director because I wanted to understand what it is to be “normal”. We call this “neuro-typical”, or “NT”.
In many social settings, as long as I concentrate, I will appear funny, outgoing, confident, and charming. This is my greatest performance.
If a quirk of mine seems out of character, it’s the opposite. The quirk is the real me. The social character is fake.
I will never trade this exhausting, mentally-taxing social performance for anything. There are advantages to being autistic.
I can work for hours (days, weeks, months) on a problem to find a resolution. I have good attention to detail. Mundane tasks interest me.
Yesterday I went through 3,500 photographs to find duplicates manually. I enjoyed every minute of it. I forgot to eat, but hey.
Forgetting to eat, and on the other side, eating two meals because I forgot I already ate, balances out in the end.
I’m also really interested in making software faster. My current special interest is SQL Server, and what a special interest it is.
I can tell time to within 15 minutes of the clock, any time of day, unless I’m on vacation. Then it doesn’t matter.
I can read at over 1000 words per minute with excellent retention, but it is more comfortable at 600 words per minute.
Reading fast is one reason why I am good at proof-reading (as long as it’s not my own words). I recognise words by their shape.
I also make an excellent cup of tea or coffee, and it will be the same every time. Just don’t distract me while I’m doing it.
Distractions are my biggest bugbear. ADHD is common in autistic people, and I can forget things in an instant. There’s a story about this.
At boarding school, I once took a phone message for a fellow pupil to call his family urgently. His father had died. I didn’t deliver the message.
When the hostel was queried that evening, I looked around at everyone else, thinking “who could forget such an important message?”.
Later that evening, lying on my bed, I remembered taking the call. I remembered being distracted. When I came forward to admit it, they didn’t believe me.
Forgetting things is one reason I’ve considered taking meds. I was on Ritalin briefly, but I missed the pictures and sounds in my brain.
I like the colourful chaos in my head. Sometimes, yes, it’s debilitating. I hate flying because airports stress me out. I will usually stim.
Stimming is where I’ll rock my entire body, make noises, or flap my hands. It’s very soothing to me, but it looks weird. I have toys.
My favourite toy is a small metal Slinky, which I play with at my desk. At airports, though, I play with my phone. At least that looks “NT”.
I’ve had more meltdowns at airports than anywhere else, and it happens even now. This is the last place you want to draw suspicion, though.
Airports are thus incredibly stressful, so I don’t enjoy flying. Which is a shame, because airplanes are a special interest of mine.
My favourite plane is of course the Lockheed SR-71A Blackbird. It’s gorgeous.
I also like cars, so I’m a huge fan of F1. But unlike others, I don’t care about the pre-race stuff. I’m all about Sunday’s actual race.
And I’m a supporter of drivers, not teams. I’ve only ever supported three drivers in my life: Senna, Schumacher and Hamilton. That’s it.
Things I’m bad at: sharing living or work space with anyone else. Only one person gets me, and I married him.
I’m also bad at listening to people I don’t like, to the point where I don’t bother remembering what they’re saying. School was hard.
On the other hand, I can replay the last sentence you said to me verbatim because I’m not actually listening actively to you.
This is a defence mechanism to work around the distraction problem. Most people don’t even notice me doing it.
By repeating what you’ve said, I can give my brain time to process the words you’ve said. This is mentally taxing but it works very well.
Repeating it is the first time my active brain is hearing it for the first time!
I’ve been in many conversations where I was not an active participant.
It also allows me, in the right circumstances, to conduct three separate conversations. Which makes me look confident and outgoing.
I will generally sit at the head or the middle of a table so I know what’s going on everywhere. I may be autistic, but I love gossip.
My memory is legendary. I can retain information for years (cf. programmed responses). Getting it to stick is the hard part: learning lines.
I’m going to try the memory palace technique for my next play and see how that works. I remember song lyrics, film scenes, computer screens.
When I worked at a help desk, I would close my eyes and rest my head on the desk while taking calls. I could imagine their computer screens.
I’m very good at troubleshooting problems with computers. My ex boss also helped me in that respect with reading error logs.
This is why I’m in the IT industry. I’m really good at computers. They can be boring though, so I’ve done other things too. I was a teacher.
Teaching is the one thing I loved to do more than anything else in the world. Acting and directing is second.
I can’t teach in Canada, but I can speak at conferences and user groups, so I do that. I enjoy explaining things, which is part of my job.
I will fix your databases, and then tell you what I did so that you can understand.
One time I rewrote an entire website because the company was hacked. I got paid, but I did it to make things better for them.
Another time I drove a two-hour round trip for a box of cookies, to help someone with WordPress. They insisted on paying for my gas too.
To a fault, I like to help people with their computers. Computers are needlessly complicated and that’s a pain. Especially for old people.
Say what you like about them, but Apple brought ease of use to regular people. That’s why I like their products.
Since I’m awake, let’s talk about insomnia and autism. I can’t speak for others on the spectrum, but this has always been an issue for me.
For as long as I can remember, I’ve struggled to fall asleep. Now I will read in bed, or listen to the radio, or think thinky thoughts.
My usual sleep time is five to six hours, and I will crash at around 2am. Lately I’ve seen 3am, sometimes even 4am, as I get older.
What I need is seven to eight hours, and despite what the naysayers say, I believe sleep debt can be repaid on weekends. I catch up then.
When I worked on radio, I’d do a 28 hour shift from Friday night to Sunday morning, sleep 12 hours, and do the production meeting at 5pm.
Being an independent consultant now gives me more freedom to set my work hours. I can do meetings earlier than 10am, but I need my coffee.
I’ve tried all of the sleep tricks, and the most reliable is sleeping pills. Even sheer exhaustion isn’t enough to get me to sleep.
I don’t take pills regularly, just when I absolutely need to get a solid six hours, from time to time. They’re not a long term solution.
So I’m curious: what do other insomniacs do? If I do nothing, or read, I’ll still fall asleep around 2–3am. Reading seems more productive.
The risk is getting into a book and then I stay awake longer than necessary. But now you know how I manage to stay on top of current events.
There’s a good four to five hours of reading after I get into bed. Crazy, right? 600 words a minute, for four hours, every day.
Voracious isn’t the right word for how much I read, but it’s the only one I have.
A by-product of autism, if you will, is sensitive hearing. But it’s not what you think it means. I hear everything at the same volume. Right now, my dog and my spouse’s breathing, the central heating, my heartbeat in my chest, the CPU fan in the next room from my old laptop …
This is both a blessing and a curse. It’s a curse because filtering all of that input takes a lot of mental processing.
You may see some autistic people wear headphones all the time to filter sound. I hate things touching my ears, so that’s hard to work with.
Plus I wear glasses, so the headphones and the frames end up hurting my ears anyway. So I’m stuck with hearing everything all the time.
This seems to contradict what I said earlier about not listening. It doesn’t. I’m the classic case of hearing you, but not listening to you.
It’s the reason I don’t like large crowds or shopping malls. They’re too loud. I have semi-joked that even the sun is too loud.
Restaurants are especially painful, because there’s a tendency to put up the “background” music volume, which makes people talk louder.
Distraction by sound is probably the easiest way to ruin my day. Or night. So I need to sleep in silence. Difficult when sharing a bed.
I’ll probably die as a result of complications due to sleep deprivation, while reading about it.
What is a meltdown? Autistic people may experience these when stress levels get too high, usually as a result of external sensory overload.
A meltdown, in my case, exhibits as sensory shutdown, to protect my brain from too much stimulus. I might cover my ears and shut my eyes.
There may be rocking involved, if I’m seated, or pacing if I can’t sit. Then the hand stimming starts, which is flapping or making a fist.
Stimming and quiet are the only way for me to calm down from a meltdown. It’s exhausting and I may want to sleep when the meltdown breaks.
Sensory overload: too much light. Too much noise. Too many people speaking. Being ignored (hoo boy, this is tricky). Lots of reasons for it.
It seems to depend on stress levels. I can act on stage in front of hundreds of people and not get affected by the bright lights.
Kenneth asked how to help during a meltdown: help the person move to a quiet spot, preferably dark, with a comfortable place to sit or lie.
Some meltdowns are total shutdowns. I may not respond to any stimulus at all. I may cry though, but not always. It’s hell when that happens.
With a shutdown, I can’t instruct my body to move at all, and I may not even be aware of other people around me. It’s awkward in public.
When I was younger, the meltdowns were confused with temper tantrums, but while I may have been angry and broken stuff, it wasn’t the same.
Dealing with rage is the hardest part of being on the spectrum for me. Yes. Present tense. It’s been a 40 year struggle. This is why I joke a lot.
I will remove myself from a situation that is making me angry, either by moving away, or providing a warning. Humour has helped so much, though.
If I can find the humour in a situation, it will defuse the rage. If I’m laughing or smiling, we’re going to be ok.
General rule of thumb: if I say I’m being serious, then I’m being serious. It can escalate really quickly. Don’t be offended if I leave.
I found a parallel between meltdown and migraine recovery: darkened room, somewhere to sit or lie down, eyes closed, quiet.
Signs that I’m having a meltdown: stimming (rocking, regular hand movements, vocal tics). Ask: would you like to move somewhere quieter?
My next thread is about routines, and why “messing with my system” will end badly for both of us, sometimes even in a meltdown.
I have a very particular way of doing things. The methodology may look wrong to someone else, and in certain cases, they attempt to help.
Don’t do this unless I ask for help. If my routine is broken, it means that I am no longer in control, and sensory overload kicks in.
I have routines for brushing my teeth, to eating a meal, to sitting in the same spot (hello, Sheldon Cooper), and even typing on a keyboard.
I can type 65 words per minute with three fingers. Sometimes four. Don’t mess with my system. It works just fine, thanks.
I unpack the dishwasher a certain way. Don’t mess with my system. If you get excess water everywhere, I get (as my friend Janie says) stabby.
I drive a very particular way. Which means I’m a terrible backseat driver. Which is why it’s just better to let me drive.
To expand on driving, I need to add some background. It took me four attempts to get my driver’s licence. I was 23 years old. I refused to drive until it became difficult to get to work (my mother drove me everywhere). The thought of being on the road with a dangerous weapon was overwhelming. In fact, I had to take my learner’s licence twice, because it expired the first time.
The first time I failed driving out of the yard because the car rolled back a couple of inches. The second time I failed in the yard (I don’t remember why). The third time was at a different location, borrowing a friend’s car, and I failed on the road test. Apparently he believed I coasted the vehicle to a stop, instead of using a downshift. This wasn’t true, but arguing the fact got me nowhere.
On the fourth attempt, I used my own car (which cost the equivalent of CAD $600, borrowed from a friend), and went as early in the morning as I could. During the test, I intentionally stimmed, speaking out loud what I was doing, every step of the way. I passed.
Driving requires a lot of concentration, so I can only go for about an hour before I need to get out of the car and walk around, and drink coffee. I have fallen asleep at the wheel once, but luckily nothing came of it.
Back to the thread.
I realise of course that I’m not perfect. My systems may not be efficient. However, there may be a reason for them you don’t understand.
For instance, I take forever to pack away dishes. I’m extremely clumsy so I have to mentally talk through what I’m doing.
Here’s what’s going on in my head for every item I’m putting away:
“Pick up the glass carefully. Don’t hit the side of the tray. Don’t hit the other glasses. Careful with your head against the cupboard door. Phew, that was close. Ok, put the glass down carefully on the shelf. Watch out for the other glasses. Ignore the flash of light you saw. Ok, good job. Now for the next glass.”
Yes, it’s exhausting. And don’t get me started on washing dishes. That takes hours. So does ironing.
You know how you watch someone type slowly, using one finger, and you just want to reach over and type for them? That’s watching me do household chores.
On the other hand, when our basement flooded last year, I spent 4 hours vacuuming up water from a 10 sq ft area of carpet. I enjoyed it.
When I get ready in the morning, it can take up to two hours, or fifteen minutes if I’m in a hurry. I can do the same things, just faster.
When I cook (and I don’t cook often, mainly Hamburger Helper), like my tea making skills, it’s the same every time, and it’s delicious.
I do take a while though, because of my routine. But it’s always worth the wait :-).
If my routine is broken, like at airports when flights are delayed, then I go to pieces because I want to restart the routine from scratch.
But that’s impossible because there are people and it’s loud and I can’t hear my brain because a man across the waiting area, whose name is Sam, is talking loudly on the phone about kidney stones.
Then the thing where people can’t stand in lines and wait their turn, which drives me absolutely batty. And Sam is going on about beer now.
And that person who forgets to take out their picture ID even though the gate agent has said to do so, and Sam is now being a racist.
Dameon asks whether messing with my system means random stuff gets left around the house: yes. Don’t touch my desk. I know where everything is.
I have a phantom who cleans up after me. I married him. The problem is, out of sight, out of mind. It’s there because it’s reminding me.
I’ve had items of mine thrown or given away because I won’t “put them away”. An untidy desk in my case doesn’t mean an untidy mind.
I admit I’m difficult to live with. I have reminders to tell me to feed my dog, and water the plant, and make the bed, and do the laundry.
Each of those things may take a while. Don’t mess with my system and it’ll get done eventually. I’m eventually consistent, like NoSQL.
Dameon again asks whether I can explain what stimming is. Broadly speaking, it’s a repetitive task that brings order to the chaos which causes stress.
It takes many forms, but in my case it will be finger tapping, rocking or swaying my body (if you watch me on my voice acting live stream, I’m always swaying when I’m on the microphone), vocal tics (clicking sounds, squeaks, repeating lines from music and film), hand clenching, leg shaking, staring at the second hand of a clock or watch if there’s one nearby, playing with my beloved Slinky.
I used to do self-harm stimming as well, and if I’m really stressed, this can still happen. This includes scratching my face, arms and legs, holding my fist so tightly that my fingernails draw blood, and rocking against a wall or doorjamb, which causes bruising.
Thanks for reading. I think this is a wrap, but I may add more.