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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Let the stars shine

If you’re reading this, you’ve probably heard that it’s Autism Awareness Month, or as many of us would prefer, Autism Acceptance Month.

You might be wondering what you can do to contribute. You might have heard a lot of contradictory messages. Here’s what I’d advise, presented in my usual style of a metaphor more labored than a blue whale giving birth.

Among stargazers, there’s a term called “light pollution”. This basically refers to when light from stronger, usually artificial sources like houses overwhelms the light of the stars so that you can’t get a good look at the night sky in all its glory.

Something similar tends to happen with public discourse on autism, where the voices of those who are not themselves autistic tend to be given more of a platform, and in turn drown out the millions of actual autistics struggling to be heard.

I think it’s time we turned down the lights so that the stars can shine. We live in a wondrous world where the miracle of social media allows us to communicate on a scale never before seen in human history. Let’s use this to amplify autistic voices. Share posts, blogs, and messages from actual autistics. Listen to what we have to say. If you want to know something, ask us.

Artificial light has a purpose, but that purpose is not to smother the stars.

“A Normal Life”

Very often I hear people say “all this autism positivity is fine for you high functioning types, but what about those who are low functioning, who are non-verbal, who will never have a normal life?”

I guess my response would be, since when is a “normal life” the only worthwhile existence? Why can’t somebody who is non-verbal lead a happy life?

Happiness looks like different things to different people. Maybe they don’t need a high flying career, a spouse and kids to make them happy. Maybe for them happiness is collecting green straws.

And if they’re satisfied with that, what’s the problem? Why should their happiness count for any less because they find it in the simple things in life?

For such individuals, autism positivity means valuing their happiness rather than mourning the fact that they don’t conform to society’s standards of what success and normality look like.

When advocates like myself talk about embracing the positives of autism and nurturing the spark within each autistic, we’re not just talking about savant-type “superpowers” but also simply focusing on the things that bring a person joy and fulfillment.

Because at the end of the day, what is more important; a “normal life”, or a happy life?

Fanning the Flame

There was a time, long ago, when our distant ancestors saw fire as something negative and destructive, a force to be feared.

It never occurred to them that this force actually held vast potential, the power to transform our destiny as a species; only over time did we learn to set aside our fears and try to understand this phenomenon, to see it not as a threat but as something extraordinary.

Fast forward several ice ages, multiple steps in our evolutionary journey, and an industrial revolution, and we again found ourselves contemplating a force beyond our understanding. This time, it was one of our own nature.

It was not a new phenomenon, just as fire was not new to our primitive forebears who fled from it in terror. But the emerging science of psychology had dragged it out into the open, and like those early hominids, we reacted impulsively.

What we thought we saw was a disease that destroyed the minds of our children and left them unable to function properly in society. We thought with our adrenal glands, and let fear cloud our perceptions of this condition we dubbed Autism.

Then, over the following decades, ancient history began to repeat itself. We started to look beyond the surface and realize that Autism also held hidden potential. That these individuals were not defective or inferior, but simply had a different way of thinking, one with its own advantages and intrinsic value.

We started to see that within every Autistic burns an incandescent spark, and that instead of trying to stamp it out, we should fan this flame so that it and therefore its owner flourishes.

Throughout my life, I have been lucky enough to have had many people; family, friends, teachers, who fanned the flame within me so that I grew up to become an empowered Autistic adult.

There is still a great deal of fear and misunderstanding surrounding Autism. But we are gradually learning, as our ancestors did, that even things which appear frightening and harmful at first can be marvels in disguise.

The Roaring Twenties

When I turned 20 back in January 2009 I was depressed, newly diagnosed as autistic, and so wracked by anxiety that just the five minute walk to the local shops was a harrowing ordeal. I’d just lost my Dad, I was about to move out of home to start Uni, and I was absolutely terrified of what lay ahead for me. The future seemed like a tsunami rolling towards me, obliterating the horizon.

The first step was one of the hardest; moving 400 kilometres away from the tiny country town I’d grown up in to live on campus at La Trobe University in Melbourne. It was totally alien environment, and I knew almost nobody there.

Fortunately for me, the RAs for my dorm, (Residential Assistants, basically second year students whose job it was to look after the newbies) were two amazingly supportive and understanding individuals named Mez and Damo. They went out of their way to try to defuse my anxieties, always offering a patient listening ear and calmly explaining to me that no, I wasn’t going to die from accidentally standing on a discarded tissue, walking on the floor of my room hours later, picking up a pen off that floor, then rubbing my eye.

Also, thanks to my first mobile phone, which I’d received as a moving out gift, my Mum was always only a phone call away. I’m sure I drove her up the wall with all the times I called her at work or at 2am, but her support kept me going when the anxiety became too much to handle.

I struggled to make friends at first due to being extremely socially awkward, but in a funny way my autism came the rescue as I adopted a hyperactive, stimming-based style of dancing at the frequent Uni parties that turned out to be a great icebreaker.

Gradually, I began to form closer connections with a small number of fellow students who were especially understanding and accepting.

By the end of my second year, however, a new problem had arisen. I’d made friends, but my lack of any romantic or sexual success, particularly in an environment where everyone else seemed to be doing well for themselves, had left me feeling lonely, self-loathing, and frustrated with myself. This seething darkness inside me eventually boiled over into self-harm, which culminated the following year when I accidentally went too far and ended up in the emergency room. Lying in that hospital bed, I made a promise to myself: never again. That was more than seven years ago, and I haven’t self-harmed since.

Funnily enough, the next year, at the ripe old age of 23, I had my first romantic relationship. She was an international student a few years older than me, and to this day one of the kindest, gentlest, most understanding people I have ever met. She was completely unphased by my laundry list of quirks, or the fact that I had no experience.

After so much hardship, things finally seemed to be going well. Then my Mum was diagnosed with breast cancer. Having lost my father, I was now faced with the very real possibility of losing my mother as well. It was a terrifying time, and I was profoundly thankful for my girlfriend’s unwavering support, but in the end Mum pulled through and made a full recovery.

My girlfriend and I eventually broke up after 18 months together, but we remain friends to this day.

At 24, I graduated University and moved out to a flat in the suburbs with my younger brother, and started looking for work. At this point, I still hadn’t figured out what I wanted to do with my life; I knew I loved writing, but that’s a very broad skill that can translate into a thousand different careers. I felt lost, adrift in life without a compass to steer by.

My friends had been urging me for some time to try blogging; I fobbed them off for ages by saying I didn’t even know what I’d write about and nobody would want to read it anyway, but in early 2014 I finally gave in and started writing what I knew; life on the spectrum.

As it happened, my work was read by somebody who worked at Asperger’s Victoria, and they got in touch and said they’d like to meet me. From there I started volunteering at a local support group they ran for young adults at the spectrum, and it was there that I met a guy named Chris Varney, who told me about this idea he had for an organization run by autistics, for autistics, which would focus on the strengths and positives of the spectrum. It would be called the I CAN Network.

This idea spoke to me on a deep level; not only was it absolutely brilliant, but I was struck by how much it would’ve helped me to have had such a program back when I was first diagnosed. I wanted to be involved in any way I could, so when Chris asked me to help out with I CAN Network’s first camp for adults on the spectrum, I jumped at the chance.

Over time, I CAN Network grew, and I started taking on an increasingly active role within it. I became the editor of the company blog, a mentor first at camps then later also in schools, and a public speaker. Whenever I thought I couldn’t handle something, Chris and my other colleagues would push me to give it a try, in much the same way as my father had before he passed away, and in almost every instance, it turned out I could handle it after all.

The Network’s positive approach to the spectrum began to rub off on me, and for the first time in my life I began to feel at peace with my diagnosis; that it wasn’t some external poltergeist out to make things difficult for me, but an intrinsic part of who I was that had just as many positives as negatives. Furthermore, working alongside so many other autistics was and still is an amazing experience.

And so, as I stand today on the cusp of turning thirty, I have come further in my twenties than I ever dared to imagine at their outset. I’ve moved out of home, graduated University, found my calling in life, and I now do things in the course of my work that at twenty I never dreamed I could be capable of, like mentoring a class of sixteen autistic teenagers or helping run a camp for forty.

There were certainly ups and downs along the way, but that’s just life; if I’d started my twenties at sea level, I’d now be high enough to need an oxygen tank.

As I look ahead to my thirties, I’d be lying if I said I didn’t still feel some fear about what lies ahead. But this time, I also feel a great sense of hope and excitement. If the last decade has taught me anything, it’s that there will be challenges, there will be setbacks, but there will also be opportunities beyond my wildest dreams, and it’s up to me to take hold of them with both hands.

2018: A muddy uphill hike in a beautiful rainforest

From the very beginning, one of the core tenets of this blog was that I wanted to be as positive and constructive as possible, even when taking on topics that lean towards the serious and somber. That’s just kind of how I roll; I don’t like to wallow in negativity.

This year has been a challenging one for me, and I could spend this entry ranting about its numerous setbacks and hardships, but I don’t want to lose sight of the fact that a lot of really awesome things have happened as well.

I got to do nine public speaking engagements this year, and four I CAN Network camps, both of which I love. I CAN also started a new online mentoring program, which I was chosen to be a part of, and it’s been a great success. My third year of classroom mentoring has continued going splendidly, and our program has actually just been renewed for a fourth year at the high school where I work, so I guess I must be doing something right there. I met a bunch of amazing new people this year too.

That’s the rainforest. The mud was that my anxiety this year was the worst it’s been since 2014. My OCD has been constantly fixating on the tiniest real or imagined symptom, trying to convince me I’m dying if I have so much as a headache or a new freckle. Being in fear for your life all the time is utterly exhausting, and that’s been my day-to-day existence for most of 2018.

This in turn made it very difficult for me to carry on with my usual jobs and responsibilities, but then I suppose that makes it something of a win for me that I did indeed carry on with them. And that’s the best way of looking at it I think; this year was a real struggle for me, but as a result, it was also a reminder of my own resilience.

Perhaps, because of this year’s hardships, I’ll be finishing 2018 as a stronger person than I was when it started.

Dear Dad

It’s been ten years now since we lost you. I wish I could say I can’t believe it’s been that long, but I can. It almost feels like a different lifetime.

You’d be 60 now, which I believe makes calling you an old fart fair game.

So, greetings from the futuristic world of 2018, old fart. So much has changed, and there is so much I wish I could show you. For a start, you’ve missed 3 Star Trek movies and a new series.

Youtube has blown up in a big way, and I just know that if you were still around, you’d have your own channel with millions of followers where you’d be using your editing and special effects tricks to make more of those hilarious short films you used to do, like showing people how to make a water rocket at home and having it accidentally get tied to your shoelace and take you to the moon.

You really were a man ahead of your time; you’d be right at home in this multimedia age. You’d have a Facebook and Instagram page for your cartoons. I bet you’d be doing the artwork for I CAN Network as well.

I CAN Network, now that’s the other big thing I wish you could’ve seen. When you passed away, I’d only just been diagnosed as autistic, and still hadn’t figured out what that meant for me, or who I was, or what I wanted to do with my life. Well, with this group, I finally found my calling. I wish you could meet them.

So what else is new? Well, I did end up going to Uni, and graduating, just like you said I could. I’ve moved out of home, just like you said I could. I found a job I love, just like you said I could.

You always did believe in me more than I believed in myself. You never let me take the easy way out and give up; whenever I thought I couldn’t do something, you’d push me to have a go anyway.

Even when you weren’t there anymore to give me that push, I’d internalized it to the point where I kept giving it to myself, and it’s taken me further in life than I ever imagined I could go.

So thanks, old fart. Thanks for always giving me the kick in the bum I needed. It hasn’t been an easy ten years without you, but, in a way I never realized while you were around, you helped set me up for success in the nineteen precious years we got to spend together.

As I write this, the sun’s just peeked out from behind the clouds outside. I remember you always used to tell us off for spending all day mucking around on the computer when it was a lovely day outside, so I’d better get out there and enjoy it.

Bye, Dad. Love ya.

Built to succeed

A planet encased in ice miles thick, life trapped beneath a crushing shell,

A mountain tumbles from the sky, transforming the world into a fiery hell,

Volcanic poison, acid rain,

But nothing could smother life’s flickering flame,

Persistence is coded into our every cell,

We were built to succeed; that means you as well.

Lost at Sea: An OCD Analogy

Imagine for a moment that you’re adrift in the ocean.

The water is Obsessive Compulsive Disorder, but the conditions of the sea are your circumstances.

On a good day, when things are going well and life is gentle, the sea is tranquil and languid. You’re still immersed in it, but with a little effort, you can keep your head above water.

Sometimes, something good happens in your life, and it’s like a piece of driftwood has floated by, something for you to cling to.

But when life gets tough, and the winds of stress begin to stir, the ocean becomes choppy, and suddenly it’s a lot harder to keep your head above the surface.

As the winds intensify, the waves grow higher and stronger. Their merciless pull wrenches the driftwood from your grasp. It takes all your energy to fight your way to the surface between waves long enough to snatch a ragged gasp. Between dunkings, you risk using a lungful of precious air to call for help.

Suddenly, you feel something grab you by the legs, pulling you down. Is it a shark? Or have you just become tangled in seaweed? You kick frantically, and finally manage to break free of whatever it was, but by now you’re exhausted. As the next wave bears down on you, you wonder if you’ll even be able to surface again after it rolls over you.

Then, a human voice tunnels through the snarling chorus of wind and water. A life preserver flops onto the ocean next to you. With your last dregs of strength, you grab onto it, and feel yourself being pulled towards the voices. A boat materializes out of the storm, and as you reach it, strong hands reach down to pull you to safety.

For now, you’re okay. You know you may find yourself adrift again one day, because the ocean will always be there. But you also know that years of fighting its wrath have strengthened you. And perhaps even more importantly, you know that even in the middle of the ocean, you’re not alone.

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.