What Autism feels like

Life on the spectrum is like a triple espresso. Like a fiery curry. Like a pizza with the lot.

It’s like watching a movie at the cinema from the front row, like showering in the dark, like driving a hundred kilometers an hour with the top down.

It’s like surfing when the sea is wild, like kayaking through rapids, like sun, rain, hail and lightning all in the same afternoon.

It’s getting up every day and venturing out into a world of vibrant chaos, where indescribable joy and immeasurable terror clash and fracture into a kaleidoscope of thought and feeling.

And I wouldn’t have my life any other way.

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The Journey

A single cell clings to the rim of a volcano at the bottom of a nameless ocean. The cell survives, and divides.

A creature of the sea drags itself into the crushing gravity of an empty beach, and conquers the land.

A tiny mammal climbs into the treetops to escape the jaws of fearsome predators.

A frail primate with no fangs or claws learns to manipulate its surroundings and reshape the world, to see things not just as they are, but how they could be.

You are the result of billions of years of victory over hardship. You didn’t come all this way to be stopped now.

Situational Spectrum Shifting

If I had a dollar for every time I heard “but you don’t seem autistic at all” or “I couldn’t even tell you were autistic” I could fund the construction of a life size replica of Peach’s Castle from Mario 64 on the moon.

These comments don’t offend me; they’re not meant maliciously and I don’t take them as such. But I do think it’s worth addressing.

Public awareness of autism has grown in leaps and bounds over the last 30 years; where once it was something most people hadn’t even heard of, its existence is now common knowledge. Most people today are very “aware” of autism. That battle has been more or less won. What we need to work on now is better understanding and acceptance of autism.

In many ways, I may not fit the stereotypical image of autism. (For a start, I look nothing like Dustin Hoffman circa 1988) When in public, I can come across as “normal”. Indeed, this is why it took until I was 19 to get a diagnosis. But this is essentially an act; a meticulously constructed, manually operated façade that can be exhausting to maintain.

Were these same people to see me in the privacy of my own home, or when I’m having a meltdown, I suspect I would fit much more neatly into the stereotype of what autism looks like; I flap my hands and gallop around the room, I make funny noises and blurt out random words.

Not only does autism manifest very differently in different people, it can also manifest very differently within the same person based on the situation.

I may not “seem autistic” when I’m buying my groceries, but I also might seem “mild mannered” to people who haven’t seen me get blue shelled in Mario Kart. It all depends on the circumstances. When I’m too stressed to maintain my social camouflage, or when I feel comfortable enough to shed it without worrying about getting harassed, I can go from zero a hundred faster than Sonic the Hedgehog on half a kilo of sherbet.

My social façade is a lot like pants; something I’m happier without but have to wear in public to avoid being given a hard time.

But even if we discount such conscious attempts at control, my autism constantly ebbs and flows on its own. Even if I never had to mask it, it would still vary from one minute to the next.

The spectrum is not only broad; it’s also fluid. Not only does every autistic person have their own place within it, but that place is not fixed, and a single individual can cover a wide and diverse range.

The Nocebo Effect

It’s been a while since I’ve posted on here, and the short version of why is that I’ve been having a difficult time as of late. Since the reason why is something I haven’t really talked about on here yet, I figured why not grab the gremlin by its horns and drag the little bastard out of the shadows and into the LCD glow of WordPress.

A lot of you will probably have heard of the Placebo Effect. For those who haven’t, it’s the phenomenon where, for example, a patient who is told they’re received a medication but is in fact given something inert will often feel better simply because they believe they’ve been medicated.

What fewer people have heard of is the Placebo Effect’s cruel and vicious alter-ego; the Nocebo Effect. While it may not be well known by name, it’s something many of us will probably have experienced in our lives. You’re browsing Facebook, watching television, or even looking out the window of a bus, when all of a sudden a post/ad/billboard raising awareness of a serious illness appears. It mentions the symptoms of the illness, and suddenly, out of nowhere, we start to feel those symptoms, and think we have that illness.

Just as with the Placebo Effect, our mind’s expectations skew our perceptions. Our anxiety and our hyper-focus on the thought of the symptoms we fear can actually create the illusion of those symptoms.

On its own, this is already about as fun as sitting your bare bum across both electrodes of a car battery, but coupled with conditions like OCD and autism it can be absolutely crippling. I myself have spent much of the past week struggling to convince myself I’m not dying of 5 or 6 different diseases, in constant fear for my life, and it really, really sucks.

One thing I’ve had to learn is that you never, EVER google your symptoms. It almost never helps, and the internet is loaded with enough nightmare fuel to keep the greasy turbines of the Nocebo Effect churning til the end of time.

Ultimately, this is something I think is best dealt with professionally, so that’s the route I personally have decided to take. Due to the stigma surrounding mental illness, it’s all too often something that people try to deal with on their own, but I’ve learned the hard way that this is usually not the most effective approach. The way I see it, if we have an infection, we go get antibiotics, if we break a bone we get it put in a cast, if we get a deep cut, we get stitches; why should seeking medical help be any different when it’s our minds that need treatment?

The Perks of Autism

That rush of energy, like your veins are roller coasters and your endorphins are screaming with joy.

That focus, like your brain is a crystalline microscope.

That sensitivity, like every cell in your body in a neuron of the universe, wired into the music of existence.

Serial vs Parallel Processing

Ever feel like your brain has too many tabs open at once? And then, like an overheated laptop, it crashes and takes half an hour to reboot? Have you ever considered that maybe, you could be a serial processor?

In computing, serial processing basically refers to performing tasks one at a time, while doing them in parallel means working on multiple tasks simultaneously. Some processors are very fast at doing things serially, others are better at doing them in parallel. People tend to be much the same.

Personally, I take to multitasking like a stegosaurus to figure skating. And that’s okay; I may not be able to juggle five tasks at once, but if tackle them one at a time, I get by just fine.

The challenging part is that we live in a world where parallel processing is the norm. For years I thought I was scatterbrained and lazy because I kept trying to multitask when that wasn’t what my brain is best at. I’d get overwhelmed thinking about all the things I had to get done, and it took me many years to work out that the solution was to break things down into a series of manageable bite-sized chunks.

Many of us on the spectrum are serial processors. We can bring an intense focus to bear on a singular task, and do that one thing brilliantly. We just have to learn to approach things in a way that best harnesses this processing power. A Formula 1 racing car for example is very fast, but you won’t get the best results driving it in peak hour traffic.

So if you’re one of those people who, like me, get stressed out trying to handle multiple tasks at once, try approaching things in series rather than in parallel; separate your workload into small steps, and do them one by one. You might be surprised at how much a difference it makes.

They’re right there

This is one of those posts where I feel like I should preface things with a disclaimer, lest I catch more flak than a low flying Zeppelin over North Korea. This blog entry is not meant as an attack on the parents of spectrum kids; rather, it’s friendly advice from somebody on the spectrum about a different way of handling certain situations.

In my job, I frequently meet kids on the spectrum alongside their parents, teachers, aides, etc. And one thing that sticks out to me is that very often, the adults introducing and discussing the child will do so almost as if the kid isn’t there.

The adults shake hands and say hi. Rarely is the child greeted. The adults then talk about the child; rarely is the child invited to join in the conversation or speak for themselves. In fact, the adults often behave as if the child cannot even hear or understand them. (Pro tip: Never assume that a person on the spectrum, even if they are non-verbal, can’t comprehend what is said around them)

This bothers me a little. As a kid, I didn’t like it when adults spoke for me, or didn’t include me in conversations that involved me. It made me feel left out, and like they didn’t think I was capable of keeping up. Conversely, when adults did include me in the conversation, that was a big confidence boost, because it felt like an acknowledgement by the grownups that I was worthy to be treated as their equal.

Personally, whenever I meet a kid alongside their parent/teacher/aide, I make a point of saying G’day to the them, introducing myself, and asking how they are doing. And if I want to know what their interests are, I’ll ask them directly rather than their adult guardian. If their responses make it clear they’d rather not socially engage at the moment, then I’ll back off and give them some space, but I feel like it’s always worth reaching out and giving them the option, so that they feel valued.

I mean think about it; would we treat an adult this way? Talk about them in front of them like they’re not there? Kids are people too, and they deserve no less respect than adults.

Inclusion is the sunshine from which we photosynthesize our sense of belonging. And when does a plant need sunshine more than when it’s growing?

 

Kids These Days

“The children of today have no respect. They’re entitled, careless, and good for nothing. We’re doomed when it’s their turn to take over.” – A caveman, 35,000 BC

Along with “I’m never drinking again”, the Kids These Days spiel is probably one of the most repeated in the history of the human species.

How easily we forget just how hard it can be, to be a kid. To have very little say or control over what happens to you. To live in a world where adults wield seemingly absolute and arbitrary power. As a kid, I often felt like I was constantly skating on thin ice, that at any moment the wrath of an adult would come crashing down on me for some transgression I didn’t even realize I had committed.

Being autistic made it particularly tough. Navigating the rules of society felt like trying to make it through a room filled with those invisible sensor lasers. And even the rules I did understand where extremely hard to follow. Sit down. Keep still. Be quiet. Yep, that’ll go over well with a kinetic thinker with more energy than Tigger on an espresso bender. May as well try to tell a kangaroo not to hop.

When I misbehaved, which was often, it was almost always either unintentional, or a desperate attempt to exert some degree of control over the terrifyingly uncertain world around me.

Young people cop a lot of flak. I’m sure they always have. But as someone whose job is mentoring kids and teens on the spectrum, I don’t think we give our youth nearly enough credit. The young people I work with are passionate, thoughtful, and empathetic. They think outside the box. They question. They care deeply, sometimes to the point where it causes them great stress. And it saddens me to see them getting badmouthed, because they have so much to offer.

I think kids these days are a marvelous people, and knowing that they are the future fills me with optimism and hope.

Autism & Screen Addiction

Yet again, at the ripe old age of 28, I find myself teetering perilously on the brink of “back in my day” territory, something I swore at 18 I’d never give in to. But then again, it’s not like screen addiction wasn’t a thing when I was a kid, (back in the late Pleistocene) when it was TV and Gameboys.

Us Autistics can be especially vulnerable to screen addiction. In a world that’s often intense, scary, or inadequately stimulating, our various devices offer a refuge we can retreat to any time, an ever-present source of comfort, distraction, and stimulation. And in moderation, this can be a useful coping mechanism.

The problem arises when this refuge becomes a dependency; a comfort zone that we never leave. Comfort zones are sterile places; nothing grows there. If we retreat to our smartphone every time we’re in a social situation, we’ll never get the practice we need to develop social skills that don’t come naturally to us. If we bury ourselves in Minecraft on our tablet at the first sign of discomfort, we’ll never learn the resilience to cope with the world around us.

Screen use can also play havoc with our sleep cycles; the blueish light tricks the brain into thinking it’s looking at daylight, and keeps us awake and alert. It’s like drinking coffee through your eyes. To combat this I’ve made my bedroom a screen-free zone, and set myself a 10pm screen curfew.

Another helpful trick is to have breaks, like going to the beach or out to lunch or whatever and not bringing a tablet. At the camps I help run at I CAN Network, we take all the kids’ phones and tablets when they arrive, and give them back at the end of the camp. While there’s some separation anxiety at first, they quickly learn to cope without them, and over the course of the weekend they come out of their shells and start to engage more with the activities and their peers.

Like most things, our phones, tablets and computers have both positive and negative aspects. They can be wonderfully useful tools, but they can also be addictive and isolating, especially for people on the autism spectrum. The key is moderating their use so that they act as a support, not a shackle.

On a Personal Note

Sometimes, I almost wish it were true that people on the spectrum lacked empathy. Because right now, I feel sick from it.

There’s nothing physically wrong with me, but the ill will and discrimination unleashed by my country’s postal survey on marriage equality is seeping into me, like a frog absorbing pollution through its skin. It’s not even directed at me, I’m straight, but still it pools inside my chest like cold sludge.

For the first time in six years I feel the dark tendrils of depression crawling, probing, searching for cracks in my mind to grip into. It’s a feeling I thought I’d left behind forever.

I can’t imagine what it must feel like for those whose right to treated equally under the law is on the line; some of them are my friends, my family, my colleagues, even the teens on the spectrum that I mentor at work. I see them suffering, and I want so desperately to help, but I feel so powerless in the face of the endless horde of strangers queuing up to tell them they are inferior, they are defective, they don’t deserve to be treated equally.

I won’t tell you what to do, or what to believe, but if you’re an Aussie reading this, I would beg you not to act in anger or fear against those who are already suffering enough. Because I see the results; rising rates of self-harm, depression, and suicide in our youth.