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.

The Joys of Autistic Sensitivity

There’s so much focus on the negatives aspects of Autistic sensitivity. On sensory overload, meltdowns, and stressful stimuli. And those are genuine issues that should not be ignored.

But what tends to be forgotten is that there’s another side to this sensitivity; a wonderful and positive side.

A sensitivity to sound might make loud noises uncomfortable, but it can also give us a deeper appreciation of music, or sounds like leaves rustling in the wind, a gentle whisper, or water splashing into a glass.

If we’re sensitive to smells, we might be overpowered by a pungent odour, but we might also derive great pleasure from the scent of a garden after the rain, of soothing herbs, or the earthy freshness of a walk in the bush.

Certain textures might make us cringe in revulsion, but others might bring us immeasurable tactile joy.

As with so much regarding Autism, the focus is so often overwhelmingly on the negatives, with the positives overlooked. If we only see Autism as a collection of problems, then we not only undervalue Autistic individuals, but we reduce their lived experience to a tale of misery that ignores the immense happiness that is as intrinsic to our neurology as our challenges.

The Torture of Understimulation

Imagine if all the life was sucked out of the world. If all food tasted like Styrofoam, no breeze ever stirred the air, a world of plastic trees and mannequins under a cracked plaster sky.

Imagine how suffocating it would feel to be cut off from all the sensations that bring you even the smallest amount of pleasure or joy.

We talk a lot about how painful overstimulation can be for Autistics, but what’s seldom discussed is that the exact opposite, insufficient stimulation, can be just as agonizing.

Imagine that every person has a cup of water. The sensations we experience throughout our day are like water being poured into the cup. Too much water, and the cup overflows and spills everywhere. Not enough, and we go thirsty. With Autistics, sometimes our cup is smaller, and we overflow more easily. Other times, we get dehydrated and need more water to fill our larger cup.

This is a big part of why we stim; as well as being a way to let off steam if we’re overloaded, it’s also a way to alleviate a lack of external stimulation. A lot of what might seem like “bad behaviour” from Autistic children is in fact a desperate bid to alleviate the mental pain they feel from not receiving enough stimulation.

Just personally, there a few things more mentally uncomfortable for me than when I’m not being stimulated sufficiently by the world around me. It’s incredibly frustrating. In severe cases, it almost feels like I’m not getting enough oxygen.

I believe we need more awareness of this particular aspect of Autism, because what may come across as merely boredom or acting out can in fact be a symptom of significant psychological discomfort, and if this was more widely understood, perhaps it could be better addressed.

OCD in a time of pandemic

Since I first saw Bird Flu on the news as a child, long before I was diagnosed with OCD, a pandemic was one of my greatest fears. From H5N1 to SARS to Swine Flu, it always seemed like just a matter of time before something like our current situation happened.

This had quite a formative effect on my OCD tendencies; since I was a teenager, I would socially distance from strangers in public, make a conscious effort not to touch my face, and wash my hands til they were cracked and raw.

Ironically, what was once a crippling disability became a great asset once a pandemic actually arrived; I was already doing the things that health authorities are now urging us to. Habits that I’ve been trying to break for years suddenly became essential survival skills.

In fact, over the last few months, I have found myself having to teach my family how to be “OCD”; how to live in what has been my reality since childhood. In this new world, I found myself suddenly an expert.

The cost to my mental health however has been significant; my already considerable anxiety is constantly elevated, and there are times were it feels absolutely crushing, like being at the bottom of the ocean under hundreds of tons of pressure.

I also worry about the long term effects; not only is the pandemic entrenching and reinforcing compulsions I’ve worked had to break, but its occurrence has lent weight and solidity to that constant fear that the worst will happen. It could set my fight against OCD back by years.

In the here and now though, I’m trying to focus on getting through each day as it comes. There will come a time when the pandemic is over, and I’ll be able to focus on regaining lost ground. As frustrating as they are, these setbacks are temporary, and if nothing else, the past few months have proven that I’m stronger than I thought I was.

Cancer: The Showdown

After 8 months of waiting, 8 months that felt like years and were saturated with the most potent anxiety I’ve ever felt in my entire life, the day I’d been waiting for had finally arrived.

I’d been lucky; the cancer hadn’t spread, and radiation therapy had shown good results. All that remained was for it to be surgically removed.

This would not be a straightforward process, however; the tumor had wrapped itself around the tibial nerve in my right leg, so a substantial section of that nerve would have to be removed. I would need a nerve graft in order to restore functionality to my leg. They decided to use the less important sural nerve in my left leg as a replacement.

When the day finally came, it didn’t feel real; I kept expecting it to be cancelled at the last minute, or for something else to go wrong, as had happened several times throughout this grueling journey. I’d already had one failed operation and been lost in the system of the first hospital I was referred to.

When I woke up after surgery, I immediately asked them if it had worked, if the tumor was gone, terrified that I’d be told once again, as I had been after the first operation, that they’d been unable to remove it. They said they’d taken it out, but that it would be several days before we’d know if they’d gotten all of it.

I remained in hospital for the next eight days; despite the surgery having been done, these were among the most difficult days of the entire eight-month ordeal. After isolating myself for weeks, I was suddenly in a position where I was totally unable to employ social distancing. My OCD was in overdrive as I constantly worried about catching COVID-19 from one of the numerous people I was in unavoidable close contact with.

A hospital isn’t exactly an autism-friendly environment either, filled as they are with harsh lights, cloying smells, and a cacophony of noise. Each day was a struggle.

Thankfully, the nurses were amazingly supportive. To help me sleep, they even gave me earplugs and turned off the hallway light outside my room at night.

Then, on the 7^th day, came the news I’d been waiting for with both hope and abject terror. They told me they’d gotten a wide margin around the tumor; that as far as they could tell, it was all gone. For eight months, this was the result I’d so desperately hoped for. I felt as though an exoskeleton of lead had fallen away from me. At last, the nightmare was over.

The following day I was allowed to go home. As I write this, I’m still only able to walk with the help of crutches, and I’m struggling a bit with nerve pain, but every day I feel stronger, and as terrifying as it was, I have confronted my greatest fear and won.

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.