Hidden Costs

A couple of weeks ago, the train I usually take to work went offline due to railways works, and I had to get there via bus replacement instead. As those who live in Melbourne will know, public transport here is about as reliable as the ice cream machine at McDonalds.

For a lot of people, this would be a mere nuisance. A pain in the bum, sure, but manageable. For a lot of us who are autistic, however, changes to our routine and public transport are up there with toothaches and slow wifi; put the two together and you have nightmare fuel.

Eventually, I did make it to work, and home again. But the following day, all day, I felt exhausted, just completely drained, like a kind of mental hangover.

See, what a lot of folks don’t realize about being autistic is that a lot of everyday things come with hidden costs. It’s like when you buy a game console; there’s the advertised price you pay for the system itself, but what it doesn’t tell you on the box is that you also have to pay for controllers, games, online subscription, all that extra stuff on top of that.

For some people, bus replacements or going to the shops or talking on the phone might be no big deal, but for me, it takes a huge amount of energy.

Because this isn’t widely understood, people like me are often thought of as lazy. This mentality is so pervasive that we even internalize it ourselves; I still catch myself sometimes feeling bad about being on a disability pension, or working part time, or spending hours on my laptop to recover; why can’t I just go about life like other people do?

The reality of course, is that we’re not being lazy; some things just require so much more effort for us, like how it takes more effort for a seal to move around on land. That doesn’t mean seals are incapable creatures though; in the water they thrive.

This is why it’s so important that we build awareness and acceptance of autism; so that we don’t have to run ourselves into the ground trying to keep up with standards that weren’t designed for us. So that we know that it’s okay to take a break when we need it, or to ask for help, or that I wasn’t very productive the day after the trains were down.

We may not be able to eliminate bus replacements and other unavoidable hassles, but we can foster understanding of people’s hidden struggles, and give them the support and accommodations they need to get by.

Autistic Love

With autism, some emotions are like a tsunami; a crashing wave of icy fear, boiling anger, or fizzling excitement, exploding with such force it leaves me breathless.

The intensity is both a blessing and a curse; exquisite and overwhelming in equal measure.

But love, love is different. For some of us, at least. Love is like the tide coming in, slow and gradual, drawn in by the gravitational pull of a partner’s orbit.

As it rises, it washes up against the rocks of our routine, the solid foundations we’ve built to keep ourselves secure among life’s shifting sands.

At first, they may clash, as the stability we hold so dear is challenged by change, but if the tide continues to rise it embraces the rocks, creating an environment where new things grow and thrive.

The rising tide may not look spectacular. An observer expecting to see a tsunami may look and see nothing. It is a quiet love, a subtle love, a love not always stated out loud. A love that whispers in actions rather than words; “my time and space is essential to me, but I have made room for you.”

Routine is a refuge

You know that feeling you get when you’re in a tough job interview, and you’re trying to act all confident and cool when inside you’re about as calm as Wynona Ryder in the first season of Stranger Things? Imagine that’s every conversation you have.

Now imagine that every time you leave the house, every car horn is like Godzilla roaring into your ear through a megaphone, every smell has the intensity of a dead skunk that’s been lying in the sun for a week, and at any moment the sky could fall without warning.

Imagine that as you’re on your way home from grocery shopping one day the bomb squad pulls you aside, says “here, we need you to diffuse this bomb, good luck” and hands it to you with no preparation or training.

That’s what the world in all its unstructured chaos can feel like for some of us. Is it any wonder then that we cling to the comfort of structure and routine like it’s the last bottle of sunscreen at a nudist colony in the Sahara?

Routine is our safety net. It allows us to be prepared for what will happen to us next, so we can manage the stressors that could ruin our day. It offers us a sense of security, so we can feel that we’re okay even things are tough.

If I’m gonna face the monsoon of bullshit that daily life can be sometimes, at least let me bring a raincoat.

Time trials

There are few things scarier to me than not knowing the schedule for the rest of the day. Seriously, it’s up there with Australian Bat Lyssavirus, asking girls out, and being stuck in the zoo’s lion enclosure at night with a steak super-glued to my bum.

I have this intense need to know when important events and tasks will take place, and how long they will last. If someone tells me they’ll arrive at 4 o’clock, and they show up at 5, I get irrationally upset, though I’ll try my best to hide it. If  someone tells me a job will take an hour and we’re still going after an hour and fifteen minutes, it’ll be hell between my ears. Because if it isn’t over in the time I was told, how much longer will I be stuck there? Two hours? Three? I feel trapped and helpless. The schedule for the day I had planned out in my head falls to pieces, and I just want to scream.

Springing things on me doesn’t work too well either. For instance, if I’m going to go to out partying, I need to know at least a day in advance so I can mentally prepare myself, cos for me, partying can be a very stressful undertaking.

And if there’s one thing worse than not knowing, it’s plans changing at the last minute, and broken promises.

Planning ahead gives me a sense of comfort and security. It’s like this: if I can see the upcoming hurdles, I’ll be ready for them. On the other hand, imagine a race where the hurdles pop up out of the ground like demonic gophers on speed when you’re a meter away. Or where you use up all your energy by the finish line, and suddenly, “just kidding, the real finish line is somewhere down that road, off you go.”

My Dad used to drive me bonkers as a kid. “Hey Dad, how long til dinner?” (Dad looks from me to the stove) “About two and a half meters.” If I had dollar for every time he cracked that one, I’d be richer than Bruce Wayne and every James Bond villain put together.

Still, Dad did have a very comforting sense of schedule; every Friday was family movie night, every Thursday Star Trek night, every Sunday fish and chips night, every full moon pizza night. These I could look forward to with the confidence that they would happen as promised.

All this said, I do recognize that in the long run, such rigidity is potentially about as healthy as a deep fried cigarette burger with extra plutonium sauce. So I am taking steps to train myself out of it, using the same method I use to combat OCD; gradual, controlled confrontation. For example, I might I make myself wait until after dinner before deciding what to do for the night.

This is a rather new project, mere months old, while my OCD inoculations have been going for years. But given the success of the latter, I have high hopes that my scheduling obsession can  be brought under control. Maybe this same approach will help with other fears too, though I admit I’m a little nervous about trying it with the lion pen.

At the same time, though, maybe this particular obsession doesn’t need to be totally eradicated; careful planning can be helpful in moderation. In my experience, a lot of problems are really just positives that have gotten out of control. Moderate consumption of red wine has been linked to reduced risk of heart disease, but chugging a bottle every night probably isn’t a great idea. Sugar is incredibly damaging in excess, but without any at all, we couldn’t survive.

I just need to get my timetabling down to the Recommended Daily Intake.