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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Diagnosed with a tumor: facing my worst fear

In a strange kind of way, my OCD is almost like a dark mirror image of my Autism. It has that same overwhelming focus on a specific subjects, except instead of it being a focus of passion, energy, and joy, it’s a focus of terror.

For almost as long as I can remember, serious illness has been something that my OCD has fixated on. This has been exacerbated throughout my life by the deaths of my father from a heart attack, two of my grandparents in recent years from cancer, and my mother’s own battle with cancer a few years back.

I can’t even count the number of times over the years that I’ve been convinced I’ve had a serious illness. OCD can turn every freckle, every muscle knot, every cough, every headache into an anxiety attack. As a result of this, I’ve had many false alarms in my life that turned out to be nothing.

Then, last month, I was diagnosed with a nerve sheath tumor. And suddenly, that ephemeral terror has become terrifyingly real.

Now, a nerve sheath tumor is hardly the worst kind of tumor to be diagnosed with; the majority of cases turn out to be benign. But when you have OCD, even relatively low chance of malignancy is magnified until it towers overhead like a monolith of solid shadow.

Ever since I was diagnosed with it, that sense of imminent doom that follows you around every day when you have OCD has grown exponentially, like a rising tide, and at the moment each day is a struggle to keep my head above the inky dark water. The indeterminate wait makes matters worse; I’m on a waiting list to have the tumor removed, but I currently have no idea how soon that will happen, and until I can be seen by a specialist I won’t know if it’s benign or malignant either. And so the black tide seems to stretch ahead as far as the horizon.

In the meantime, I’m trying to be as proactive as I can in shoring up my mental health; I’m trying to keep myself as distracted as I can with positive things like my work in mentoring and advocacy, my writing, seeing friends and family, and opting out of stressful events or situations. All the tricks and techniques I’ve learned in 13 years of battling OCD are being fired on all cylinders, and for the moment I’m managing to hold the fort.

The most statistically likely outcome is that I have the operation, it turns out to be benign, and that’s that. But for the moment I’m facing what is easily one of the greatest psychological challenges of my life so far. Then again, so was moving out of home, at the time, and beating self-harm. I’ve never backed down from my demons before, and I won’t now.

“When should I tell my child they’re autistic?”

Ah yes, one of the most common questions I’m asked in my work as an advocate. Now, I’m not a parent myself, and have zero experience in raising children, so I can only answer this from the perspective of someone who grew up autistic and didn’t get a diagnosis until the age of 20.

The thing is, while it may have taken until adulthood for me to get a definitive answer, from a very young age I knew that I was different from my neurotypical peers. As far back as early primary school, I remember noticing that I thought, felt, and behaved differently to them. I just didn’t know why.

And that feeling of not knowing drove me up the wall. I’ve always been the kind of person who takes comfort in knowing the why of things. When I understood the reason for things being the way they are, then I could accept them; on the flipside, few things had me more anxious and frustrated than an unanswered question.

Before my diagnosis, there was always that persistent doubt and uncertainty buzzing around my brain like a giant mosquito; what was wrong with me? Was I going mad? Was I a bad person? Getting diagnosed with autism was like finally getting to take a bazooka to the bloodsucking bastard. Just finally having an answer was a big step towards finding peace with myself.

Now, in my case, it wasn’t that my parents had known and kept it a secret; they found out at the same time I did. The reason it took so long was that, back in the “those days”, (you know, when phones had cords and stegosaurus still walked the Earth) autism was far less understood than it is today, and I didn’t fit the “rain man” stereotype of that time.

But I genuinely believe that, if I’d been known from early childhood, maybe at around 5 ideally, it would’ve saved me a great deal of stress.

Now, obviously not every autistic child is going to be just like me. But kids are generally a lot more switched on then adults realize. I’m sure most of them have also figured out from a fairly young age that there’s something different about them.

Knowledge is power, especially knowledge of one’s self, and only when we truly understand ourselves can we achieve self-acceptance. I wish I’d been told sooner, and if I were to have an autistic child of my own, I wouldn’t wait to tell them.

And when I did, I wouldn’t treat it as though I was informing them they had an illness; I would simply explain that yes, there is something different about them, but it’s not a bad thing. On the contrary, it’s something special. Something that does bring with it some challenges, but also strengths to be proud of.

Autism as an ally against OCD

One of the quirks of Autism is that it’s often a package deal, arriving pre-bundled with another condition, such as ADHD or Oppositional Defiance Disorder. Buy one, get one free!

For me, this accompanying condition was Obsessive Compulsive Disorder. Hell of a double whammy, right? Well, sometimes yes, but the way they interact isn’t as straightforward as you might think.

See, the primary focus of my OCD is a fear of disease and contamination. Back when it was at its worst, in my late teens and early twenties, if someone coughed or sneezed anywhere near me, or if I accidentally stepped on a discarded tissue, I’d go to pieces like a china plate Frisbee’d into a jet engine.

Now, perhaps as a result of my autism, I’m a very analytical, scientific person, so I tried to combat this irrational terror with cold hard facts, I did a lot of research about diseases. It epidemiology actually became one of my autistic special interests for several years.

And during the course of this research, I kept crossing paths with the concept of immunology; the idea that our immune systems grow stronger over time through exposure to pathogens. That’s how many vaccines work for example, they train your immune cells to recognize a virus so that when the real thing shows up they know how to fight and beat it before it can hurt you.

I was fascinated with this concept, and it gave me an idea; that maybe, I could build up an immunity to my fears, and my triggers, through gradual controlled exposure. My autistic affinity for structure came to fore, and I drew up my battle plan with meticulous exactitude. Every day, I’d try to confront one of my fears, just a little bit. Not by jumping head first into it with anything super terrifying, but just taking a small step. I’d set myself goals, and timelines to reach those goals.

Over time, bit by bit, the fear response became less powerful, and I was able to get to the point I’m at today where I can use a public bathroom, something that was unthinkable to me ten years ago. So as it turns out, my autistic traits, like my systematic thinking and my focus on my special interests, turned out to be a potent weapon I could utilize against my anxiety.

Of course, we’re never going to completely eliminate anxiety, and nor should we. It’s a fact of life. And in fact it exists within us for a reason; without it we would’ve died out millions of years ago, because we wouldn’t have run away when the saber-toothed tigers jumped out at us.

But excessive, chronic anxiety, is something that we can train our brains to resist. And for those of us on the spectrum, who are particularly prone to this type of anxiety, leveraging our own neurology can give us an edge.

In the case of both myself and many children I’ve worked with, it has helped a lot to turn this strategy of confronting our fears into a highly structured plan, a game almost, that reflects our literal and logical thinking. Structure is a comforting thing, and since unpredictability is itself often a source of anxiety, just making a plan like “I will use a bin once a day” or “I will interact with a cashier by myself once a week” is therapeutic in itself. It puts our challenges into a format that’s tailored to the way our brains work.

Now isn’t a process that’s going to happen overnight; it’s not even going to happen over weeks, it’s going to take months, it’s going to take years. But I know from personal experience that by utilizing our autistic strengths, it’s possible.

When I was 18, my anxiety was so extreme I could not leave the house. If you’d told me then we’re I’d be today, I wouldn’t have believed it. I spent far too long fighting fear on its terms; the turning point came when I decided to fight it on mine, with autism as my ally.

Besieged

With OCD, the mind is a battleground, like a city embroiled in guerrilla warfare. Light and dark fight house to house, neuron to neuron, to capture and control the vital areas.

In a war, not every battle will be won. There will be times when the darkness gains ground, when barricades collapse, defences are overrun, and shadowy soldiers with bayonets of ice storm building after building.

But there are also times when the sun bathes the city in radiant warmth, the bayonets of ice are melted, and the shadows are driven back. This sun burns with the fire of love and kindness. Sometimes the clouds of circumstance and the smoke from the battle below obscure its rays. But as long as it burns strong, there is hope for the city, for darkness can never permanently reign over a world with a sun.

A change in perspective

A shattered mirror stretching as far as the horizon

A trillion splintered planes

In stillness, jagged chaos

In motion, a rolling sea

The ocean isn’t broken

It’s not meant to be perfect.

Game Review – Hellblade: Senua’s Sacrifice

I know video game reviews haven’t traditionally been a feature of Max’s Shop of Horrors, but in this case I thought I’d make an exception for a couple of key reasons. Firstly, gaming is one of my Autistic “special interests”, as it is for a great many people on the spectrum. Secondly, the game’s subject matter really resonated with me in a way that is quite relevant to the themes and issues I often discuss here.

I should preface this however with a warning; Hellblade is intended for mature audiences, containing not just violence, but vivid depictions of mental illness that some may find upsetting. Please bear this in mind should you decide to play it.

Hellblade is a game that defies the way I usually assess games. I tend to be systematic; I break a game down into its constituent parts and judge each one individually. In this case however, I find that doing so would do the game a disservice. I could talk about how I enjoyed its challenging combat and clever puzzles, and how I was impressed by the technical and artistic proficiency of its graphics, but that wouldn’t effectively illustrate just why I loved it so much.

It’s become cliché within the sphere of video game journalism to refer to a game as an “experience”, but I can think of no game for which this is a more fitting description than for Hellblade. And for me, it was a very personal one. In over 24 years of gaming, I have never been so emotionally affected by a game.

For those unfamiliar with its premise, Hellblade follows the story of Senua, a Celtic warrior suffering from severe mental illness who is on a vision quest of sorts to retrieve her dead lover’s soul from the underworld. Senua’s story is one of confronting inner demons, coping with unresolved trauma, and of how frightening the world can be when you are mentally ill. The game thrusts the player into her distorted reality, and does so to harrowing effect.

Yet at the same time it approaches the subject matter with maturity, empathy, and respect. Many other games reduce mental illness to just a tool for cheap scares; in Hellblade, however, nothing is just there for shock value alone, it all has meaning.

The game was actually developed in collaboration with people who have experienced psychological disorders, as well as neuroscientists, and the developers went to great lengths to consult those with a lived experience of mental illness so as to ensure that the end result was authentic and not exploitative.

As a person with Obsessive Compulsive Disorder, Senua’s journey spoke to me on a deeply personal level. I know all too well the terror of having to navigate a world teeming with frightening stimuli, as well as the struggle of not being able to fully trust one’s own perceptions. Like Senua, I too have darted between pockets of perceived safety, felt crushing guilt at the thought that my illness was harming others, felt darkness growing inside me like gangrene, and struggled to apply meaning and structure to the world around me.

Though my life has been quite different to hers, Senua felt like a kindred spirit to me. I connected with her like no other video game character I have ever played as, to the point where the game’s ending felt like saying goodbye to a close friend.

For me, video games are primarily a way of taking a break from reality, of seeking temporary refuge in a digital space where things feel so much safer and less stressful than real life. Hellblade, by contrast, was like someone held up a mirror to my own darkness, but then empowered me to challenge it within a realm where I feel in my element; the realm of video games.

 

[Hellblade is the property of Ninja Theory, and is available on Nintendo Switch, PC, Playstation 4, and Xbox One]

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.