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.

Strength in numbers

One thing I get asked a lot is what advice I would give to young autistics, or parents of autistic children. Thinking back to what helped me the most in my journey, perhaps my foremost advice is this; get in touch with the autistic community.

When I was diagnosed at the age of 19, I couldn’t think of any other autistics that I could turn to for help or advice. I felt overwhelmingly isolated and alone, and this is a feeling I have heard echoed by countless other autistics recounting the early years of their post-diagnosis life.

Long before I was diagnosed, I had noticed this indescribable sense of difference between myself and my peers, but I could never quite figure out what it was that set me apart. I felt as if I was some alien life form placed on earth among humans, able to exist within their society with difficulty, yet separated from them by a gulf as wide as an ocean and as deep as that chasm where Gandalf fights the Balrog.

It wasn’t until my mid-20s (and by writing this blog) that I connected with the autistic community and for the first time, got in touch with numerous others who were like me. That feeling of no longer being the odd one out, of being able to easily relate to others, of belonging, was unlike anything I’d ever experienced before. Suddenly, that suffocating isolation lifted like a morning fog burned away by a radiant summer sun.

Beyond my own firsthand experience, I’ve seen the same thing happen countless times in my work as a mentor; groups of young autistics brought together in support groups and school programs forging close friendships and gaining a newfound sense of community and self-acceptance from connecting with others with whom they have a shared neurology and lived experience. It’s really quite magical.

If you or someone close to you is newly diagnosed, I cannot recommend enough the value of connecting with other autistics, and thanks to the internet and the rise of autistic peer mentoring programs in recent years, the community has never been more available.

Newcomers are welcome in our global and growing family. And just as a multitude of water molecules working in unison can carve through solid rock, enough people coming together can change the world.

Sparkling Autism

For most of my life, my autism was something I instinctively tried to suppress and conceal. When I was very young, it flowed freely; the exuberant energy and focused passions it bestowed on me a were seen as, to an extent, acceptable for a small child.

As I grew older, it became progressively more frowned upon. In my teens I learned to mask and do my best to pass as neurotypical to try to mitigate the withering onslaught of bullying.

Even upon reaching adulthood, finally gaining a diagnosis, and reaching the somewhat less brutal environment of university, the instinct to suppress my autism was still deeply ingrained. It wasn’t until I discovered the field of advocacy in my mid-twenties that my journey towards accepting my autistic self began in earnest.

But even as I broached my thirties, having learned to appreciate the strengths and benefits it gave me, it was still something I was reflectively reluctant to give free rein too, fearing it would be met with disapproval and ridicule outside my circle of fellow autistics.

Then, a few months ago, I met someone. Someone truly amazing.

When I infodump about my passions, she smiles with the warmth of a gentle sunrise, and says my autistic excitement makes me “sparkle” and that she loves that about me.

Every time she says it, my heart sings in a thousand colours, and that fear of judgment and rejection I’ve carried for most of my life is drowned out in a sea of joy.

To be accepted, completely and unconditionally, it one of the most magical things I have ever experienced.

If you ever find yourself wondering how you can support autistic people, this is how.

Positive Pressure

When I was a kid, I used to love squeezing into the tight space between the spare mattress under my bed and the bed itself. When I needed peace and quiet, I’d wriggle in there an octopus and just enjoy the sensation. At the time I never knew why; it just felt right.

It wasn’t until much later, as an adult, that I discovered this was far from rare among autistics. Many others I’ve met over the years have also found physical pressure to be like a hot bath of liquid dopamine.

This can take a wide variety of forms, from very strong hugs, to weighted blankets and clothes, to compression socks, to intense massage, to even having one’s partner lie on top of them.

There’s a lot of focus on the sensory stimuli that autistics find unpleasant, (mushy food for instance makes my soul try to eject itself from my body like a scarecrow fleeing the Hindenburg) and while these stressors are important to be aware of, we should also remember that autistic sensory sensitivity goes both ways; there are also stimuli that can be immensely soothing, and this seems to be a very common one.

Beyond just being enjoyable, the sensation can even be actively therapeutic. I’ve had people describe having intense anxiety or even meltdowns defused by the healing power of a tight squeeze, or struggles with sleep fixed instantly by a weighted blanket and a harder mattress.

This is not to say that every autistic will like being squeezed; everybody is different after all. And of course, never do so without permission. But if you or someone in your life is autistic, positive pressure might be worth looking into as an addition to one’s toolbox of life hacks.

Because as with many things in autism, and in life, the way we process sensory input has a positive side as well.

Invisible

(The following piece is not by me, and the author wishes to remain anonymous, but I wanted to share it with their permission because I feel it so powerfully conveys something so many of us have felt – Max)

What to do when you feel like nobody? Hide in the car. Go for a walk. Stay home. You are invisible.

You are invisible because you are nobody here, so don’t come. You are invisible because you have nothing to offer these people. You are invisible because you don’t know how to be anything but invisible.

Look for other invisible people. Being invisible makes my tummy sick. Being invisible makes my tummy so sick. I can’t get out of the car. Maybe I will breathe and my tummy will feel better. Maybe if I feel better I can get out of the car.

How long till I go home? How long till I am ready? Not yet. Wait some more. Breathe some more. I can’t go back because nothing will have changed. I can’t go back because I will still be invisible.

My husband didn’t see me either.

NeuroCulture

When I was 17, I studied abroad in Japan as an exchange student.  Was my first experience of visiting another country, and coming from a tiny country town, my first exposure to another culture.

A lot of things were the same; a smile still meant happiness and crying still meant with overwhelmed with emotion, but a lot of other things were different; for example, when greeting or thanking someone you made a bowing motion, and shaking hands was not customary.

It wasn’t until later, after being diagnosed as autistic, and reflecting on my experiences with both the autistic and neurotypical communities, that it dawned on me; this feeling of being in a foreign culture and trying to learn and imitate its customs, was strikingly similar to when I tried to “fit in” and emulate the social protocols of “neurotypical” society back home.

By contrast, being among my autistic peers feels like my own “culture”, as interaction is easier to understand and feels more natural, and there’s more of a sense of shared norms.

If you’re not autistic, but have travelled to countries with a very different culture to your own, this can be a helpful frame of reference for how it can feel for us autistics trying to navigate a neurotypical world.

That feeling of uncertainty as to what is appropriate, the fear of accidentally seeming rude, trying to manually note and imitate the behaviours of those around you; that’s how it can be for us every day in our own country.

There is no universal set of human social norms; perhaps instead of thinking of autistic behaviour as pathological or disordered, we should try seeing it like another culture, one that for all its differences from the neurotypical standard is still valid in its own right.

Infodumping: A Joyous Release

If you asked me about battleships, or Godzilla movies, or Nintendo, I could literally talk for hours. Like, non-stop. At some point I might get so into it that I might forget to breathe and end up gasping for air like Darth Vader having an asthma attack.

This is known as “infodumping”, and is very common among us autistics. Often, it’s treated rather negatively, as socially inappropriate behaviour that needs to be trained out of us. As with autism itself though, looking at it from this angle is like judging a rose by its thorns; you’ll miss out on its positive aspects.

For example, autistics don’t infodump for no reason; for a start, it feels fantastic. When I’m talking about my special interests, it’s like liquid sunshine is rushing through my veins and my brain is lit up like the milky way on a moonless country night. Our interests have a special place in our hearts and minds, and expressing them is like when an artist paints or an author writes, it ignites our soul in a blaze of passion.

It can also be a very powerful coping mechanism and a way of connecting with others. A wonderful parent I know actively encourages infodumping as a way to deepen her bond with her autistic child and help them cope with stressful situations. If her child is showing signs of being unsettled, having an opportunity to infodump can bring them great comfort.

A few years back, I remember reading a quote from another young autistic; “On the mornings when I am having trouble getting ready for school, my mum will ask me to explain something about my favourite game. Infodumping gives me energy!”

As an autistic myself, I can relate to both these kids; two years ago when I was on my way to hospital to find out if my cancer had spread, my own awesome Mum invited me to infodump to keep me from breaking down.

Not only is it a very effective distraction from whatever is making us feel terrible, but the positive emotions it invokes are so strong that they can provide a potent counter balance to anxiety, anger, or sadness.

It’s not just beneficial for the person doing it either. If you listen to an autistic person infodump, you’re sure to learn something. The positivity can be contagious too; when I’ve done it in the presence of my amazing partner, she says it makes me “sparkle” and that makes her happy.

Like with many things to do with autism, and so much in life in general, examining something through a negative lens is counterproductive. Infodumping gets a bad rap, but if we take the time to examine it more closely, there is value and purpose to it.

Mental illness can make you physically sick

A common misconception, even today, is that mental illness is limited to the mind, when it reality, it can (and almost always does) spill over into the body as well.

Recently, I had an extremely stressful day, where my OCD went berserk for hours on end like Donkey Kong on an espresso bender. I found myself trapped in a situation where I couldn’t escape the stressors all around me, made worse by the fact that the careful plans I’d made all fell apart due to factors outside my control. By the time I got home I felt like someone had filled my head with barbed wire and shaken it like a cocktail mixer.

For days afterwards, I was physically unwell. I was exhausted, had a headache, couldn’t think clearly, had body aches, a tight chest; I felt so crappy I actually wondered if I had caught covid.

Years ago, when I was doing placement as part of my postgrad in education, the same thing happened; I just couldn’t handle long hours day after day in an environment so full of sensory stimuli. I tried to hang in there and tough it out for as long as I could, but eventually my body just gave out and I had to withdraw from the course.

Not enough people seem to realize this, that a mental illness can take a huge toll on your physical health as well, and that it’s not just a matter of needing more disciple or trying harder, any more than one can will away an infection or a broken bone.

I work part time not because I am lazy, but because I know from experience that my health pays the price if I try to do too much. I still push myself hard and take on as much work as I can, and over the years I have increased the amount of hours I can handle by a lot, but I also have to prioritize my wellbeing.

The mind and the body are not separate entities, there are deeply and intrinsically intertwined, and when one suffers, so does the other. Never judge someone mentally ill as lazy; they’re probably fighting a lot bigger battle than you might think just to be where they are.

And if you are someone who struggles with a mental illness, never feel bad for taking time off or giving yourself a break. As human beings we have a finite amount of energy, and sometimes we need it all just to stay afloat. You’re not weak, you’re just doing what you have to to stay healthy, and that’s okay.

Even positive social contact can be exhausting

Socialising can be something of an endurance test for those of us on the spectrum.

Navigating the complex maze of social cues that we’ve had to decode manually (because they generally don’t come naturally) can be like speaking a second language. So our brains are working in overdrive, and that’s on top of potential sensory issues like noise, crowds, people in our personal space, eye contact, and other things that can stress us further.

The thing is though, this doesn’t necessarily mean we dislike social contact as a rule. Speaking for myself, I really enjoy and treasure social time spent with my friends and family. But that’s another thing; even positive socializing like this drains my batteries.

Imagine you’re eating a delicious meal, the tastiest you can imagine. You savour and love every bite. But no matter how good it tastes, there comes a point where your stomach feels like it’s you swallowed a bowling ball and you just can’t eat any more.

Similarly, there comes a point in even a lovely social exchange where my brain simply hits overload point and I need time and space to myself or I’ll go to pieces like a scarecrow sucked through a jet engine.

This is something to bear in mind when interacting with autistics; please don’t take it personally if we need take a break, leave an event early, or just to call an end to a hangout. It doesn’t mean we don’t enjoy spending time with you, it’s just that we’ve run out of brain space for the moment.

The Immeasurable Value of Neurodiversity

Imagine a world where everybody thought the same way. Where there was no autism, no ADHD, no variety at all in the way our brains functioned. A world of uniform perception, of homogenous thinking.

Think how monotonous such a world would be. Think how many incredible innovations in science, technology, or the arts sprang forth from neurodiverse minds, and how much poorer our species would be without them. Imagine how much shallower the human experience would be without minds that can process different wavelengths of reality.

Look at the extraordinary diversity of life as we know it, from the trees that generate the air we breathe, to microscopic single celled organisms, to the blue whale, the largest creature to ever live. Just as diversity of organisms is essential to a healthy ecosystem, diversity of neurology is essential to a healthy human race.

Each of us sees only a portion of the vast rainbow of the universe, and only together can we appreciate its full spectrum. Embracing neurodiversity not only enriches our society, it also teaches us the vital importance of acceptance and inclusion.

Every mind is valuable, and without those who think differently, our world would shine less brightly.

Autistic Processing Times

Sometimes, someone will say something to me, and it’s as if my brain lags out like a 10 year old laptop trying to stream Netflix in 4K.

I’ll either take ten seconds to even register it, or it’ll expire from my short term memory before I even get around to it.

Then, when and if I comprehend it, the process of formulating a response begins, which can take roughly several business days, during which time the conversation has moved on to something completely different.

I used to think that this “slow” processing was a failing, that I was basically stupid.

But then I tried to analyse what was going on behind the scenes, to be conscious of the process my brain was going through to arrive at its often belated conclusion.

See, when you’re autistic, it’s like the world pours into you. A constant flood of thoughts and sensations rush into your brain all at once; it can take a few seconds to filter through all that, assess each one according to its importance, then pick out and more closely analyse the key ones.

Then, when trying to construct a response, my brain branches out in a multitude of directions at once, again evaluating each potential path. For each word, there are numerous possibilities to be considered. Multiple scenarios are simulated and discarded before I finally decide on what to say.

So what I thought was slow, stupid processing, is actually thorough and meticulous processing. There’s just so much information going through my brain all the time that I have a lot to work through to arrive at an action or decision.

Try to bear this in mind when interacting with autistics; if we don’t respond right away, just bear with us and give us a little extra time. Don’t judge someone as unintelligent because their responses are delayed. It’s not that we’re slow, we just have more to compute than you might realize.