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.

Hope in the time of COVID-19

Let’s cut to the chase; we’re living in a difficult time right now. With such a constant deluge of scariness it can be difficult not to find ourselves overwhelmed with negativity and anxiety.

I typically try to look on the bright side of life, but that’s easier said than done sometimes; after all, how do you find a positive outlook on the worst pandemic the world has seen in a century?

Well, for one thing, in the face of this common threat, the world is arguably more united now than it ever has been. Never before has a globalized society come together as one like this.

Scientists from all around the world are pooling their knowledge and ingenuity to find solutions to this crisis. And they are succeeding; already multiple potential vaccines have reached clinical trials, the first of which set an overwhelming world record in taking just 63 days to go from the virus’s genome being sequenced to the first shot being administered to a human.

Multiple existing drugs have also shown promising early results in treating the disease, and because these drugs have already been approved for use, they can be rolled out quickly to patients across the world should the trials currently underway show them to be effective.

At the community level, countless groups are volunteering their time to distribute food to people in self-isolation, such as the elderly and other at-risk groups. At a larger scale, distilleries are converting to produce and donate sanitizer, textile companies are putting their factories to use in producing masks and medical clothing, and many of the world’s most powerful supercomputers are being given over to medical research. One such computer has already identified 77 compounds that block the virus’s ability to bond with our cells.

And perhaps above all, there is the courage and dedication of health workers the world over. In the United Kingdom for example, more than 500,000 people have come forward to volunteer with the NHS, include tens of thousands of retirees and students.

Even as the pandemic looms over us like dark, stormy cloud, the human spirit burns like the heart of a star in response, as our collective compassion, intelligence, resilience and resourcefulness are brought to bear.

The human race has survived countless pandemics before, and we have never been better equipped than we are now. Times like this may be frightening, but they also bring us together and show just how amazing we are when we put our differences aside and work for the common good.

Please, Protect Me

I’m know you’re all sick of hearing about the current pandemic; trust me, I am too.

But here’s the thing; I need your help. In fact, I am depending on you.

I have cancer. I am an asthmatic. I one of hundreds of thousands of Australians and millions around the world who are especially vulnerable to this pandemic.

I’m being as careful as I can. But I need you to be careful as well.

I need you to practice social distancing and hand-washing. I need you to stay home unless you absolutely have to go out. I need you to quarantine yourself if you become sick, or have been exposed to someone sick.

I need you to protect yourself, so you can’t pass it on to me and others in our community who are highly vulnerable to it.

Now more than ever, we need to look out for one another. Consider that even if you have a mild case, you might pass it on to someone who might die.

Before you go out to the pub, a cafe, or the gym, think about those of us who rely on you to keep us safe. Our lives are in your hands. Please don’t let us down.

 

Conditioned Withdrawal

It’s almost treated as inherent that Autistics are quiet, introverted, and keep to themselves; that this is just another characteristic of the spectrum. And for many people, it is, and that’s okay.

But for others, including myself and many others I know, introversion and withdrawal can be the symptom of years of unintentional conditioning.

From a young age, particularly at school, Autistic students are constantly told to sit down and shut up; when they initiate interactions, they are usually harshly shut down, whereas when they disengage and keep to themselves, they are praised as being “well behaved”.

Over years and years, this combination of positive and negative reinforcement conditions Autistics not to volunteer their opinion, not to speak up, not to try to engage with others. They become introverted not by nature nor by choice, but because that’s how neurotypical society trains them to be.

So, what can we do about this? One method we use in the program I work in is to make a conscious effort to positively reinforce participation whenever possible; if a student gets overexcited and shouts out an answer, we don’t sweat it. If things get side tracked, we try to redirect gently rather than shutting them down. If we have to ask a student to stop interrupting, we make sure to still commend their enthusiasm.

We also set up opportunities for them to be rewarded for speaking up, such as giving talks to the class about their special interests.

On the flipside, we try not to praise a student for “behaving themselves”; not only is this somewhat back-handed as it implies they’re inherently badly behaved, (and kids WILL pick up on that, they’re smarter than we tend to assume) but we don’t want to convey that the ideal student is one who simply “sits down and shuts up”.

This is not to say of course that natural introverts are ever made unwelcome. Our ethos is challenge by choice; while students are encouraged and given opportunities to express themselves, they are always free to determine the degree to which they’re willing to participate.

At the end of the day, conditioning children on the spectrum to be passive, obedient, and disengaged is ultimately not setting them up for success in life, and we’re not doing right by the next generation of Autistics if we train all their enthusiasm and initiative out of them.

Looking Cancer in the eye

Malignant.

On the 23^rd of December last year, two days before Christmas, and about a month before my 31^st birthday, that one word smashed my life to pieces like a mirror blasted by a shotgun.

For four months I’d waited and hoped that my tumor would turn out to be benign, that the nightmare would finally be over. Alas, it was only just beginning.

Since I was a child, serious illness, and especially cancer, has been one of my greatest fears, a bogeymen wheeled out by my OCD on a daily basis. To be told that I actually had cancer felt like my lifelong demons had suddenly become real.

The next two weeks crawled passed like a sickly, adrenaline soaked fever dream as I waited to find out just how bad it was. I could barely eat or sleep. I expected the worst; to be told that there was no hope or recovery, that the end was just months away. I had never been more terrified in my entire life.

My Mum and step-Dad had traveled to be with me, and they had to almost physically support me as I stumbled into my GP’s office to get the results of my scans. My current GP is a wonderfully kind man, the best doctor I have ever had. He didn’t keep me waiting; as soon I walked in he told “it’s okay, it’s good news.” The cancer had not spread.

I burst into tears and hugged my Mum and Step Dad. I even asked my doctor if I could hug him; he said yes, so I did. I felt as if the weight of the world had been lifted from my shoulders; I still had cancer, but with just the one tumor, my doctors are optimistic it can be cured.

That same day I started radiation therapy; as I write this I’ve just come home from my 4^th daily session out of 28. The plan is to shrink it this way, then remove it around March.

And that’s where I am at right now. I’m still scared, but with treatment underway, I’m on the road to vanquishing my darkest demon.

The Benefits of Stimming

First off, for those who are wondering what on Earth “stimming” is, it’s shorthand for self-stimulating, and basically refers to a range of actions that Autistics often engage in such as hand flapping, making noises, rocking back and forth, etc.

These behaviours are, unfortunately, often viewed as disruptive and inappropriate, and therefore discouraged. I would argue they shouldn’t be, because stimming can actually be a very important and beneficial practice. So, what’s so positive about it? Here are just a few of the ways in which it can be awesome:

– For those of us who are Autistic, our thoughts and feelings can be very intense, to the point where it can feel like our bodies can hardly contain the energy it takes to process them. Stimming can act like our brain’s stabilizing thrusters, keeping us on course and focused. I personally find I do my best thinking when I’m stimming. In fact, I am stimming frequently as I write this blog entry.

– Similarly, when we are stressed, stimming can be like the safety valve on a boiler, allowing us to let off steam and prevent ourselves from becoming overwhelmed and having a meltdown.

– It can be exercise! For me, a good stim session is like a mini workout. Beyond just burning off a few calories by hand flapping or going for a gallop, the benefits of physical activity in terms of both mental and physical health are well documented.

– It feels amazing! When I stim, my brain is lighting up like fireworks, and I feel like hot molten chocolate is coursing through my veins. In my experience, there’s not many things quite as enjoyable.

These are just a few examples; I’m sure other Autistics could add more many more, and in fact, if you’re on the spectrum, I’d love to get your input on this.

In short, what might outwardly appear to be a meaningless act of misbehaviour is in fact a complex mechanism of self-regulation with remarkable benefits. It is my hope that as we work to build a more inclusive and understanding society, stimming will be accepted as just another way in which we humans interface with our world.

Solitary Confinement

A common misconception about autistics is that we have no interest in social interaction, or even that we despise it.

Now, I’m sure this is true of some folks on the spectrum, (and plenty of people off it for that matter) but the reason I call it a misconception is that it is often treated as a blanket rule, with potentially devastating consequences.

All too often, autistics want very much to socialise, but simply aren’t sure how to initiate and sustain a social interaction. When their well-meaning attempts to strike up a conversation are met with a negative or even hostile response, this can discourage them from trying again. They become reluctant to initiate contact, and this is misinterpreted as “oh, they don’t want to socialise because they’re autistic,” thus perpetuating a feedback loop of isolation.

Having met and worked with hundreds of autistics over the past few years, one of the most pervasive mental health issues I’ve seen is loneliness. This is something I have struggled with myself.

Don’t assume that because someone sits by themselves, doesn’t go out, or never proactively seeks out contact, they want to be alone. They might, but don’t jump to that conclusion. Reach out to them. Ask them. If they’re genuinely wanting some time and space to themselves, then give it to them. But don’t buy into the myth that all autistics abhor human contact and are happiest when left alone. Because that’s how so many people end up trapped in a prison of well-meaning ostracism.

This can be especially true of non-verbal autistics. Don’t confuse the inability to speak with a lack of any need for social connection either.

We tell our kids to talk to the children who sit by themselves in the schoolyard. Let’s not forget that this lesson, like autism itself, extends beyond childhood.

There all along

Centuries ago, we didn’t know that plants generated the oxygen we need to breathe, or that the Earth’s magnetic field protected us from the full force of the sun.

Decades ago, we didn’t understand that the crystal prism of Autism diversified human thought into new ideas and perspectives that enriched humankind.

But that too was there all along.

 

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.