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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Life’s a Beach

When you’re caught in a rip and being dragged out into the terrifying tumult of the open ocean, you have two choices.

You can swim against it, exhausting yourself while the shore ahead of you remains out of reach.

Or, you can swim sideways out of the rip, and let each wave boost you closer to solid ground.

The waves alone won’t get you there, but if you take advantage of the opportunity they offer, and swim with all your might, it’s not a matter of if you’ll get there, but when.

How to change a life

When I was 10, my Grade 4 teacher set aside some time in a morning class for me to show everyone the “jetpack” I had made with a little battery-powered fan and a yogurt container.

When I was 12, my Grade 6 teacher helped me get a short story I’d written published by sending it out to a whole bunch of magazines and other publications until one of them finally accepted it.

When I was 17, my English teacher encouraged me to read out some of my writing to the class, even though I was very anxious about doing so, and told me, and everyone, how great she thought it was.

When I was 19, and in tears because I felt like my life was over now that I’d finished school, my Mum and Dad walked me through applying to University and told me that however impossible it seemed, they truly believed I could do it.

When I was 25, unemployed and drifting aimlessly through life, a lady named Robyn and a guy named Chris Varney told me they thought I had what it took to be a mentor for autistic youth.

This is how easy it is to be a life-changing force for good in the life of a person on the spectrum. Every one of these people helped me get to where I am today, simply by expressing their belief in me, and thereby encouraging me to believe in myself.

I have been immensely blessed to have had such people in my corner, and if there is one thing I hope to accomplish in life, it’s to offer the same support to others on the spectrum. Because I know from personal experience that a little encouragement can make all the difference in the world.

Strengthened by Fire

In metallurgy, there is a process called “tempering”, where materials like iron and steel are heat treated to increase their strength. Ironically, (sorry, couldn’t resist) this actually reduces the metal’s hardness, but increases its ductility, which is basically its flexibility under pressure.

The end result is metal that is actually stronger despite being less hard, because it is able to absorb stress that might shatter a harder but more brittle metal.

In this blog I tend to focus on the strengths, the benefits, and the joy of life on the spectrum; that’s just me, I’m a glass half full kinda guy. But that’s not to say it’s all rainbows and unicorns. (Which are real by the way, they’re just tubby, grey, and live in Africa) Autism can be challenging to say the least, and life on the spectrum is often very stressful.

But just as metal can be strengthened by heat, this stress can help build us into resilient, resourceful, and determined individuals. Whenever I’m feeling down, I like to remind myself of all that I’ve been through and overcome. Not only have these tough times made me who I am today, but the fact that I got through them is proof that I’m a strong person.

The heat of the forge may seem to weaken us at the time, but it can also make us stronger in the long run. It’s important to remember, however, that while life is the forge, we are the metalworker. We can harden our hearts and become rigid and inflexible, but as metallurgy teaches us, harder metals can actually be more brittle. If we temper ourselves to be both ductile and strong, we can handle anything life throws at us.

Stimulants and Stress

For a lot of people on the spectrum, myself included, the experience of autism can be described as “life with the contrast turned up”. The highs are like a tsunami of molten chocolate, the lows like skinny dipping in the Antarctic, and the transitions between like one of those amusement park rides that where you shoot up in the air then drop back down.

What I didn’t realize until relatively recently, though, was that something I was doing was making this emotional seesawing far more intense than it needed to be; my intake of sugar and caffeine.

Because I often felt sad or tired, I’d been trying to give myself a boost with unhealthy food and an excessive amount of coffee. Then, when I overhauled my diet in 2014, I noticed something; I was getting to sleep more easily, my panic attacks were less frequent and intense, and I was experiencing less stress in general. The things I’d been consuming to try to improve my mood had actually been making me feel worse.

Those of us on the spectrum are often susceptible to over-stimulation; as a result, chugging energy drinks can be like chucking petrol on a flame. It can easily become a vicious cycle; we feel down, so we consume sugar/caffeine, which makes us feel worse, which leads us consume more, and so on and so forth. I myself was stuck in this cycle for many years before becoming aware of it; I now place guidelines on my intake, and I feel significantly better as a result.

As always, I should point out that I am not a dietitian or a doctor, and this is all based solely on personal experience. I still drink coffee in moderation, and on occasion I’ll even treat myself to a bit of sucrose, I just know now to be mindful of its potential to cause stress. Life on the spectrum is already a roller coaster; there’s no need to grease the tracks!

Fright of Flight

Ah, aeroplanes. We’ve all heard the statistics, that they’re one of the safest ways to travel, but somehow that doesn’t always reassure a brain that hasn’t changed significantly since the Pleistocene and considers being 10 kilometers up in the air about as safe as tickling a Sabre Toothed Tiger.

My first experience with air travel was when I flew to and from Japan as a 17/18 year old, and as I’ve detailed in a previous entry, that trip went about as smoothly as a square snowball rolled down the side of Mount Doom. I left so shell-shocked that for the next decade, I avoided flying like the plague.

Then, a few weeks ago, I was invited to speak at a conference on autism… in Tasmania. My plane ticket was paid for as part of the deal, and I really wanted to go, but at the same time, I was terrified. Painful memories of my experiences ten years prior resurfaced with a vengeance. But at the same time, I wanted to face and overcome this fear that I’d been running from for so long.

Buoyed by a flood of support and encouragement from my friends, family, and colleagues, I decided to grit my teeth and give it a go. In the days and hours leading my up to my flight, my anxiety writhed inside me like a live octopus. But then, when I finally got on the plane, and took off, it detached and fell away, left behind on the tarmac. For ten years I’d built up flying to be this horrific thing, but when I actually did it, the glass tiger my mind had fashioned shattered against the hard rock of reality.

And I’m so glad I didn’t let my fears stop me, because I really enjoyed Tasmania. Hobart is a beautiful city, the conference went well, and I met some really lovely people. But perhaps more importantly, I broke free of shackles that had bound me to the earth my entire adult life. From here on out, the sky is no longer the limit.

Re-examining Independence

The other day, someone asked me for my thoughts regarding disability and independence. My first impulse was to say that while I can’t speak for anyone else, I myself have managed to live independently despite experiencing sometimes debilitating anxiety.

But then my train of thought veered off on a tangent, laying fresh tracks down in front of it as it went, like in Wallace & Gromit: The Wrong Trousers.

As social animals, almost all human beings are dependent on one another on some level. An adult who lives alone and supports themselves financially, for example, is still dependent on the farmers who grow their food, the workers who maintain the pipes that supply their water, etcetera. Independence isn’t a binary thing that we either are or are not, but a matter of degree.

Disability is a similarly nuanced concept. All individuals have their own challenges, some are simply more pronounced than others. There are many people who face far more hardship than I do, and others who face far less.

“Dependent” is often treated as a dirty word, as something to be ashamed of. Personally, I don’t think it should be. While those who face great difficulties in life may sometimes need more support, this can be seen as a natural extension of the mutual dependency we all share.

Many disabled people manage to live with a degree of independence close or equal to their more able peers. But for those who cannot, I don’t think there need be any shame in dependence on others, any more than we need feel ashamed that somebody else bakes our bread or works at the power station that generates our electricity.

Our dependence on each other is part of what makes us a community, a society, and above all, human.

Autism and Coffee

It should come as no surprise to any regular reader of my work that I’m a devoted enthusiast of that quasi-magical beverage derived from the seeds of the berries of the Coffea plant. I was savouring my daily dose the other day, (cheap and black, like my sense of humour) when it occurred to me; coffee is a lot like autism.

See, there’s a lot of focus on the challenges of being autistic, which shouldn’t be ignored of course, but virtually never have I seen the flipside touched upon; the pleasure of it.

You know that joyous rush of energy and excitement when a good coffee kicks in? Well, that’s what autism feels like to me when I think of a new idea for a story, or find a new book or documentary on one of my special interests, or when said interests come up in conversation. It surges through my body like hot molten chocolate; I want to dance, to flap my hands, to run in circles, cos I’m just so happy. My brain lights up like a Christmas tree, and it feels freaking fantastic.

It’s this aspect of my autism, this glorious frothy energy that allows me to power through a day’s worth of work in half an hour, or focus intensely on a single task for hours on end. I’ve talked before about how useful these abilities are as far as work and contributing to society go, but I neglected to mention that, perhaps just as importantly, they’re a source of immense enjoyment.

This is why I don’t see myself as “suffering from” autism. Sure, just like coffee, it can sometimes leave me feeling overstimulated and anxious, but when I think about how much fun I get out of it, I consider it a blessing, not a curse.

 

Resisting Relapse

First of all, a head’s up: this entry will be discussing self-harm, so if that’s not something you want to read about, stop now. That being said, I have endeavored approach the subject in a constructive manner, with a focus on coping strategies and recovery. I hope I’ve succeeded in this regard.

It’s been five and a half years since the last time I cut myself. I assumed that with time, the urges would go away, but the truth is, they haven’t. Months may pass without the thought of relapse crossing my mind, but every now and then, when I’m feeling lonely, unwanted, or embarrassed, it resurfaces with terrifying ferocity.

In those moments, the urge can be so overwhelming that it feels like I can’t breathe. Like I physically need it as much as I need oxygen. Resisting it is hard. Damn hard.

Now, I have no official training as any kind of counsellor, psychologist, or anything like that. This is simply an account of what has worked for me.

First of all, I’ve found that, like panic attacks, these episodes tend to be limited in duration. A lot of the time, if I can just hold out for fifteen minutes or so, the urge subsides.

In fact, a lot of the same strategies I’ve found useful in combating anxiety attacks are effective here as well; strenuous exercise, for example. If I go for a jog around the block or do a set of push-ups, it almost always helps me feel better. Meditation can also be helpful; if you don’t know how to do this, there are plenty of videos on YouTube that can walk you through it.

Another trick I use is that I have a word document where I keep a record of nice things people have said to/about me. When I’m feeling bad about myself, I open it up and re-read them.

Now, none of these things are a magic bullet, but as a sort of emotional first aid, I’ve found them valuable tools for keeping relapse at bay.

Perhaps most importantly, I like to remind myself that every day without relapsing is a victory that nobody can take away from me. In five and a half years, that’s nearly four thousand victories. We can’t always erase our demons entirely, but we still give them a kick in the arse and send them packing if they dare show their face. And after five and a half years, my kicking leg has grown strong.

A Helping Hand

There are times when life seems to shrink, like we’re a frog alone in a pond that’s drying up.

We can leave the pond, and fight our way across dry land under the scathing sun to try to find something better. And maybe we manage to save ourselves this way, through immense effort and hardship.

But what if someone saw the frog in the shrinking pool, and carried them a dozen meters to a larger one? Such a distance would be a terrible struggle for the frog, but for someone to carry them that far takes practically no effort at all.

Likewise, when a person is struggling, it can be extremely difficult for them to work through it on their own, while the relatively minimal effort it takes for someone else to ask them how they’re doing can make a huge difference.

It’s incredibly important to check in with our friends regularly, even if they seem to be doing fine; a lot of people will put on a brave face and try to hide their difficulties. Something as simple as messaging someone to say hi and have a chat can literally save a life.

While this can be true of anyone, it’s especially important in regards to people on the spectrum. A Swedish study from 2015 found that autistics without a cognitive disability had a suicide rate nine times higher than the general population. (http://bjp.rcpsych.org/content/208/3/232)

That’s a terrible statistic, and highlights just how important it is that we support each other and provide a safety net of kindness and inclusion for those among us who are facing tough times.