Max's shop of horrors

Warning: imagination testing site. Enter at own risk

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 Importance of Autistic Role Models

When I was a newly diagnosed teenager, there really wasn’t anybody I knew of that I could look to as an Autistic role model. There was nobody to reassure me that it gets better, that I wasn’t broken, to share what worked for them in conquering the challenges I was going through.

In classic Autistic fashion, I found the closest thing in fictional characters that weren’t canonically Autistic, from Seven of Nine and Spock from Star Trek to L from Death Note. But there really weren’t any really positive portrayals of Autism going around back then, at least that I recall.

It wasn’t until my mid-twenties when I started working with an Autism support group that I truly found my tribe; other real life Autistics with whom I could finally relate and share the lived experience of the spectrum.

Today, my role models are my peers and colleagues, and even my students, who often inspire me with their courage and strength.

And yet, I can’t help but wonder how much less painful my late teens and early twenties might have been had I had such role models when I needed them most.

This is what drives my work as an advocate and mentor; I want to give the next generation of Autistics what I needed at their age; an adult on the spectrum to show them that it’s not the end of the world, and to offer advice and validation. I truly feel that this is the way forward for Autism advocacy; Autistic adults mentoring Autistic youth, so that they don’t have to go through the isolation that so many of us did.

If you have a child who is Autistic, I think one of the most crucial pieces of advice I can give is to introduce them to others on the spectrum, and give them Autistic role models to look up to. While we still have a long way to go in terms of Autistic representation in the media, in the real world the Autistic community has never been bigger, more global, and more interconnected.

A sense of community, of belonging, can be absolutely vital to our emotional wellbeing. So many of us grew up without this. But as someone who finally found theirs, I can attest that it makes a life changing difference.

Knowing Your Limits

It’s sometimes frowned upon to talk about our “limits”. Phrases like “nothing is impossible” and “you can do anything you set your mind to” make for hotter slogans.

I for one feel like knowing one’s own limits is actually an essential part of living a healthy and happy life. For a lot of my own life, I didn’t know mine, and as a result I would often push myself way too hard, until I inevitably crashed and burned with disastrous results. I’d set myself unreasonable goals, then hate myself for not being able to achieve them.

Only in recent years have I learned to take my foot off the pedal when I’m spinning my tyres in the mud, or to take a detour instead of continuing to bash my head against a brick wall.

We have it hammered into us constantly that “winners don’t quit”, yet sometimes quitting is exactly what it takes to succeed; to abandon a strategy that’s getting us nowhere and try a different approach.

We can absolutely work to expand our limits, but they tend to be elastic, and snap back on us if pushed beyond our tolerance. I like to go by one of the core principals of the group I currently work for; “push yourself to grow, but not to breaking point.”

It’s important to instil resilience, determination, and persistence in the next generation of Autistics. But it’s also important to teach them that these are not absolutes; that it is okay to change course when something just isn’t working, and that we shouldn’t sacrifice our mental health on the altar of “never give up”.

As humans, we are all finite beings. None of us can do absolutely everything, and that’s okay. Figuring out where your threshold for burnout lies and knowing when to ease off, as well as how to self-regulate, is a vital life skill that I personally think should be more widely taught.

Sensory Shock

I grew up in a country town surrounded by farms, so I’ve received my share of electric shocks in my time.

And that feeling, that painful jolt that runs right though you like the thread of your existence was twanged by some celestial space demon, that’s a lot like how it feels for me when someone touches me unexpectedly, or when a loud car or motorbike passes me in the street.

See, what I don’t think is widely understood enough is that sensory overstimulation for Autistics isn’t just an annoyance or a discomfort; it’s actually almost physically painful. It’s not something we can just choose to ignore, any more than someone who isn’t Autistic could ignore being given an electric shock, or being smacked over the head with a frying pan.

Things that might seem completely innocuous to others; loud noises, bright lights, strong smells, being tapped on the shoulder, really can be a complete onslaught to us. And I really think that there needs to be more awareness of this.

“Discomfort” is too mild a word to describe the experience. It’s really more like a sensory shock or sensory pain. If you’re not Autistic, try to bear that in mind in your interactions with us.

Don’t Sweat the Small Stuff

Of all the advice I could give to parents, teachers, and other supporters of Autistic children, I think one of the most important tips would be this; don’t make something into a bigger deal than it really is.

If your kid lines up all their toys in a row instead of playing them as a neurotypical child would, don’t pathologize it and see it as dysfunctional behaviour that must be trained out of them; just accept that it makes sense to them even if it may not to you.

If a student of yours flaps their hands or fidgets while they’re thinking in class, don’t tell them off for it; recognize that it’s part of how they propel their thinking or cope with stress, and model acceptance for your neurotypical students.

If a child doesn’t want to make eye contact, don’t force them to. It doesn’t mean they’re not paying attention. Do you need to look at a radio when you listen to it?

There will be more than enough legitimate challenges in an Autistic person’s life that they will need support for; don’t make mountains out of molehills and call a red alert over every little thing they do that isn’t “normal”. Try to look at it this way; if the behaviour isn’t causing any real harm or danger, then what’s the problem?

In the course of experiencing the world in our own unique way, us Autistics are inevitably going to do a lot of things that might seem strange. Try to accept without judgment, learn when to let it go, and save your energy for actual problems. The child you’re supporting will be better off for it, and so will you.

“Growing out of” Autism

I’ve heard it asked so many times; “will my child grow out of their Autism?”

Well, as a 31 year old Autistic, I sure didn’t, and for that I am eternally thankful. But my relationship with Autism over the course of my life has certainly not been a static one.

As a small child, I was unapologetically Autistic. I flapped, galloped, and made noises to my heart’s content. Little kids are allowed to do that.

As I grew older though, it became seen as less acceptable. I was increasingly in trouble at school, told to sit down, to stop moving, to be quiet. Eventually, it also became unacceptable to my peers, and my friendship circle began to break down.

And so, as I moved into my teenage years, I repressed my Autistic impulses. To the external viewer, I might have seemed to be growing out of my Autism. But what I was really doing was learning to pretend to be someone I was not. And this performance was exhausting and costly.

Far too many years later, with the help of a wonderful community of Autistic peers, I finally learned, or rather re-learned, to accept and embrace my Autism, and now, as an adult, I once again stim openly. I am, to the external observer, more Autistic now in my 30s than I was as a teenager, and I’m a happier person for it.

My Autism has remained a deep, inner constant throughout my life. It just took me a quarter of a century to do consciously what my child self did subconsciously; to befriend it, and let it shine.

The Revelation of Diagnosis

Before I was diagnosed as Autistic, life was like wandering through a forest in a moonless night.

I stumbled through inky darkness, unable to see the brambles or the trees until I’d painfully run into them.

I couldn’t even find the path much less follow it.

Then, when I was diagnosed, the sun rose.

The path, the trees and the brambles were finally revealed to me.

For the first time I could see my way forwards.

But more than that, in time I could see the beauty of the trees and the sunlight trickling through the canopy.

And perhaps most importantly, I could see myself.

The Road to Recovery

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It’s been four and half months now since I had my cancer removed. Last week I had my first post-op scans, and the results came back clean a few days ago.

A lot has happened since I last touched on my progress here. For the first six weeks after the operation I couldn’t walk, and had to stay in bed all day with a brace on my leg, using crutches to make the arduous journey to and from the bathroom. (Or, as pictured getting the occasional ride in a wheelchair from my lovely family!) Since I’m a naturally active and energetic person, this extended period of forced bed rest was a challenge to say the least!

In late May, the brace finally came off, though I could still just barely limp around my house. From there I started rehab to train up my leg and restore my mobility. This actually progressed a lot faster than I expected; just over a month after I started, I was able to stagger around my block for the first time since the surgery. It was grueling struggle, and by the end I felt like light-headed and exhausted, but the speed with which I’d reached this milestone was hugely encouraging.

In the two months from then to now, my walking has continued to improve by leaps and bounds. My current record is a 35 minute walk to a nearby railway crossing and back; I still have a slight limp, but in terms of general mobility, I’m almost back to normal.

The nerve graft, on the other hand, will take a lot longer to reach full functionality; perhaps as long as two years according to my doctors. So far I still have no sensation on the tissue graft to my right calf, or my right sole. Still, I consider that a small price to pay for saving my life. It’s still a question mark as to how close to normal the nerve will eventually get, but even if it stays as it is now, I’d have no complaints.

I’m also immensely fortunate to have a wonderful support network that had my back every step of the way, from my family providing for me while I was unable to look after myself properly, to friends who offered me encouragement and kindness throughout my recovery.

It’s an ongoing process, but I’ve already come further than I expected, and I’ll keep pushing myself until I’ve gone as far as I possibly can.

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

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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.