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.

Autism and Animals

Social connection can be a real challenge for us autistics. Our fellow humans are complicated, unpredictable beings, whose behaviour and communication can be so loaded with confusing nuance as to seem inexplicable.

There’s also a considerable element of risk; the potential for misunderstandings, manipulation, and bullying is a constant threat.

This is not to say of course that autistics cannot form healthy and lasting relationships with other people, just that it generally does not come easily to us.

On the other hand, a great many autistics I’ve met have found it much easier to form deep and powerful connections with other members of the animal kingdom. And is this really so surprising? After all, dogs are easy to read. Reptiles don’t play mind games or whisper about us behind our backs. Animals are clear in their intentions and straightforward in their communication.

A few years ago I had the privilege of working with Summer Farrelly, a brilliant young autistic advocate with an affinity for chickens. She told me that understanding the behaviour of her flock gave her a frame of reference through which to understand social interactions.

Animals can also be a great source of companionship and comfort, something us Autistics can need a lot, given how stressful it can be just existing in a world that’s not designed for our neurology.

One of the most common misconceptions about autistics is that we inherently lack empathy. This is, quite simply, absolute codswallop. While each person is of course different, autistics very often have a very high degree of empathy, and animals give us someone safe to invest this empathy in, someone who won’t betray us.

In short, there’s good reasons why so many autistics form a close attachment to animals; the resulting relationships can be incredibly beneficial, even life changing for some of people I’ve talked to. As so many of us can attest, autistic or not, the bond between human and animal can be nothing short of magical.

(PS: The good boy pictured above is Picaso; he belongs to a friend of mine and you can see more of him on Insta: @poppyandpicaso)

How far we’ve come

I found out I was autistic in 2008, at the age of 19. In historical terms it was a blink of an eye ago. And yet, in the 13 years since, the progress I’ve witnessed in regards to autism awareness, acceptance, and advocacy, has been both profound and incredibly encouraging.

One of the biggest steps forward has been the rise in self-advocacy, and resulting shift in discourse to actual autistics speaking on their own behalf instead of non-autistics speaking for us. I’m aware that as a concept this predates my experience, but in recent years it has increased dramatically.

Where not so long ago conferences, workshops, and seminars on autism consisted entirely of non-autistics, now more and more of us are taking the stage to give our own firsthand experience and insights.

The same pattern can be seen in support groups and mentoring programs, with autistic adults increasingly taking the reins.

In the digital world, the rising #ActuallyAutistic movement has similarly begun to take control of the online discussion of autism (and neurodiversity in general) and replace the traditional narrative with one shaped by our firsthand experiences rather than external observations of us.

There has also been much-needed diversification among those doing the talking; more and more women, POC, and other under-represented members of the autistic community are making their voices heard, disrupting the long held misconception of “the autistic” as exclusively white male children.

Diagnosis has also improved; where many of us did not discover we were autistic until we were adults, or even until middle or old age, the broadening of our understanding of autism has led to earlier and wider diagnoses, allowing millions to understand themselves better and be spared the often painful hardships of going through life not knowing.

Don’t get me wrong; we still have a long way to go. They is much vital work that remains to be done. But from what I’ve seen and lived through over the past 13 years, I feel gratified to have seen such improvement, and I look to the future with radiant hope and resolve.

10 Years Clean of Self-Harm

Through the foggy mirror of time I see a different version of myself. A Max who despised himself with volcanic intensity. A Max who blamed everything that went wrong in his life on himself. A Max who was absolutely convinced that he was useless, worthless, irredeemable, unworthy of love.

Much of this went hand-in-hand with first undiagnosed then later poorly understood autism. Whenever I struggled with something, which was often, my difficulty with emotional regulation led to frustration, and when lashing out at the world proved ineffectual, I directed it inwards.

Instead of seeing my challenges for what they were; a disconnection between the way my brain worked and a world that was not accommodating of my neurology, I interpreted them as me simply not being good enough, capable enough, or trying hard enough.

I’m not sure exactly the first time I self-harmed on purpose. I was 13 the first time I remember cutting myself. I kept it a secret, because I felt that I didn’t deserved to be helped or given any sympathy.

What a lot of people might not understand about self-harm is the addictive satisfaction of it. When you’re in mental anguish, it feels almost like scratching a maddening itch until you bleed; yes it hurts, but that hurt is a comparative release compared to the itch.

It was at University that my self-destructive compulsions began to spiral out of control. I constantly compared myself to my peers there, who always seemed to have more friends, get higher marks, and have more success in romance and sex.

I wish I could say that the turning point was a positive one, but in truth it was when I hit rock bottom; one particularly nasty incident when I was 22 landed me in the emergency room, and it was the shock of this harrowing event that initially broke the habit.

That was 10 years ago now. In the years since, with the help of my amazingly supportive friends and family, and through finding my place in the autistic community and gaining a better understanding of autism and thus myself, the self-loathing that consumed me for so long has been slowly replaced by self-acceptance.

My work in mentoring other young people on the spectrum held up a mirror through which I learned to see the good in myself instead of just the bad, and over time I learned to treat myself with the same compassion and empathy that I would a mentee, colleague, or friend with the same struggles.

That’s not to say it’s all been sunshine and rainbows; the spectre of relapse has reared its head on multiple occasions, lurking like the coward it is to strike when I’m at my weakest. On these occasions, I found that the best countermeasure was to immerse myself in my special interests, or immediately reach out to a friend or family member; the urges tend to be short-lived, so if I can hold them off for just a few hours, they subside.

Over the years, this spectre returned less and less often, until by now I can’t exactly remember the last time it showed its face.

As I write this, it’s been a decade, almost to the day, since the last time I hurt myself on purpose. The scars will always be there, but where once they were angry red, they are now pale and faded.

I look back at that younger version of myself, and I’m reminded of so many young autistics that I work with in my career as a mentor and advocate.

If I can, in some small measure, give others the support and connection that helped me find and follow the path to self-acceptance, then I can’t think of anything else I’d rather do with my life.

Autism and Birds

A penguin cannot fly. On land it seems clumsy, limited, and slow.

But underwater it soars with magnificent grace, at home in its element.

A penguin is not a failed or defective bird. It is simply a different kind of bird, specialized for a different way of being.

Do not weep for the penguin, any more than you would weep for the eagle that cannot swim; instead, appreciate each for their own qualities.

Growing up Autistic: What my parents and teachers got right

Like a lot of Autistics, I didn’t receive an official diagnosis until I was an adult, in my case at the age of 19. The 1990s and 2000s were a very different time, and there weren’t a whole lot of Autism experts in the small country town where I grew up.

As a result, not only did I not have the benefit of knowing I was Autistic, but neither did my parents and teachers. There was no roadmap for them to go by; they could only try to work with the unusual child in front of them. In some ways, this was probably a good thing, as Autism wasn’t very well understood back then anyway, and was viewed very negatively.

To their credit, even flying blind, there was some important things they got right. One of the most impactful was that my obsession with writing was seen as a positive, and at school I was given the label of “gifted” from a young age. This helped me to feel good about myself in spite of the many other things I struggled with.

My parents also whole-heartedly embraced my special interests; when I was really into dinosaurs, my Dad would char chicken bones in the fire then hide them around the garden so I could play at being a palaeontologist. When I was obsessed with lights, they made me a lantern out of a tin with windows cut into it and a candle.

Some of my best teachers made room for my interests as well; in Grade 4 a teacher gave me five minutes at the start of class to show off the “jet pack” I’d made with a battery operated fan, while in Grade 6 another teacher helped me submit one of my stories for publication in a young writer’s anthology.

Only much later once I was a diagnosed adult did I learn that my parents were also working hard behind the scenes to try to get my teachers to be accommodating of my need to move around while I was thinking, for example.

All this is not to say that growing up as an undiagnosed Autistic was all sunshine and unicorn farts, but given the circumstances, I count myself fortunate to have had wonderful parents and a few really awesome teachers who went the extra mile to support me.

Want to know about Autism? Ask an Autistic

A friend and colleague of mine, Kyal Kay, has a terrific saying regarding learning about Autism; “Seek out primary sources, just as you would if you were studying history. When it comes to Autism, primary sources are people who are Autistic.”

In history, a primary source is a firsthand account of an event or period; a secondary source as the name suggests is a second hand analysis or interpretation of a primary source. For example, if we’re talking about World War 2, a primary source would talking to or reading the account of somebody who was actually there; a secondary account would be a textbook written by someone born decades later.

Autism is no different; there is only so much you can learn from a textbook written by someone who is not themselves Autistic.

Another analogy is the black and white room; a person is born into a windowless room where there are no colours. On a black and white monitor, they read about colours, about their wavelengths, their cultural connotations. But that person cannot truly know what it’s like to gaze into a deep blue sky or a fiery sunset.

The real experts on Autism are those of us who live and breathe it every day of our lives. There are millions of us out there. If you really want to learn about it, ask us.

A Different Kind of Socializing

One of the defining features of Autism as it is traditionally viewed is impaired social skills. Lack of eye contact, difficulty with conversation, and generally just a poor grasp of the intricacies of social protocol.

Here’s the thing though; all of this is measuring our ability to socialize using the way that Neurotypicals socialize as a baseline for “correct” behaviour.

It may be true that communication between Autistics and Neurotypicals comes with certain barriers, similar to those you might find when two people from different cultures communicate.

However, in both my work with Autistic youth and in my own life as someone with many Autistic friends and colleagues, I’ve observed something else; when a group of Autistics get together, we can socialise among ourselves very well.

When I’m with my Autistic friends, we know not to expect sustained eye contact from each other, we forego the formalities of social protocol, and we converse just fine.

I believe that it’s less a matter of Autistics being socially impaired, and more that we have a different social “language” to our non-Autistic peers. Our interactions with Neurotypicals essentially take place across a language barrier, and that is misinterpreted as us being socially incapable.

Autistics are expected to learn the social “language” of Neurotypicals; perhaps if the same allowances as are made with a language barrier were exercised, we could shift our perspective away from seeing Autistics in a negative light.

Who knows, maybe non-Autistics could even learn a little of our language; a meeting of the minds is that much easier when we meet each other halfway.

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.