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.
Having a panic attack feels like being a ship in a stormy sea; tossed back and forth by towering waves of anxiety that threaten to capsize and sink us.
What we need is an anchor; someone to ground us with their stability and calm. The waves will still be there, but with an anchor to secure us, we can ride them out.
During a panic attack, our own logic and reason will have deserted us; as our anchor you can lend us yours. If you remain rational and reassuring, and work through the problem with us, you can help us to cut through the fear and see the situation from your less clouded perspective. If we feel like we can’t trust our own judgement, help us to trust yours instead.
It’s important that you don’t be dismissive of our concerns; we already feel like we’re going crazy and being made to feel ridiculous doesn’t help. Break things down gently, without judgement.
While the storm rages, we will probably be challenging to be around; we may have outbursts of emotion, we may ask for reassurance over and over and over. Please bear with us; we’re not being purposefully difficult; we are just overwhelmed and in pain. Your patience is deeply appreciated.
It’s said that reassurance brings only temporary relief, and that can be true. But you know what else only works temporarily? Insulin. Yet it still saves lives. If I drink water I’ll still be thirsty again in a few hours, but that doesn’t mean the water isn’t keeping me alive.
Ultimately, the storm won’t last. Eventually, the waves of anxiety will subside and the sea will be tranquil once more. And when it clears, having an anchor may have made all the difference.
An autistic meltdown is generally known as an explosive outburst of emotion; a breaking wave of frustration and anxiety that’s impossible to miss. And indeed, this is how they manifest for many of us.
But there is another kind of meltdown that’s not as well known; one that’s the total opposite, silent rather than loud, implosive rather than explosive. These are sometimes called a “shutdown” and while they may be less visible, they are every bit as serious.
My own meltdowns tend to manifest in this way. When my stress levels exceed my ability to cope, my brain disconnects from the world around me to protect itself. It’s like I withdraw inside myself to escape the pain. I go very quiet, I retreat away from other people, on the outside I may seem calm or uncaring but on the inside I am in agony.
Because there’s less awareness of this type of meltdown, it is often misunderstood. To those around us, it can look like sulking, or giving people the silent treatment. It’s important however not to interpret it this way; a person having a silent meltdown is not being defiant or rude, they are simply so overwhelmed that their brain has locked itself down. A meltdown is not a choice, anymore than a headache or a sneeze, it is an autonomous bodily function we have no control over.
As with many things concerning autism, I feel it is vital that these things are more widely known. Understanding benefits both sides, and creates a kinder world.
So if somebody in your life is autistic, always remember that just because they may seem okay on the surface, that doesn’t mean they’re not struggling.
Like many autistics, I wasn’t diagnosed until I was an adult; when I was a kid back in the 90s and early 2000s, there was simply far less awareness and understanding of autism compared to today.
Of course, I was autistic all along, since before I was even born, and looking back there were a lot of signs. Since knowledge is power and diagnosis was, for me, a vital step in finding self-acceptance, I thought it might be helpful to talk about these signs, in the hope that it might benefit others.
Now every person is different, so these shouldn’t be taken as gospel, but for me at least, these were the telltale clues that I was, shall we say, a bit neuro-spicy.
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Socializing is exhausting
While I was never straight-up adverse to social interactions, they have always drained my mental batteries. Even if it’s a positive exchange, with people that I like, after a while I just feel worn out and look for any polite excuse to leave.
This is because when you’re autistic, a lot of the processing of social cues that happen automatically for most people have to be done “manually”, which requires a lot of mental effort.
We also tend to subconsciously suppress our autistic tendencies in social situations in order to fit in; this is called “masking” and can also be really tiring.
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A need for structure
All my life, I’ve felt most comfortable when things is very orderly and structured. Conversely, uncertainty and changes of plan make me intensely uncomfortable.
I constantly feel the need to check the time, I plan out my whole day in advance according to a strict timetable, and I try to have a contingency or backup plan for any possible outcome.
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Meltdowns
When it all becomes too much for me, when I am bombarded with uncomfortable stimuli and I have run out of the mental resources needed to cope with life’s stresses, I explode. I yell, swear, lash out, cry, in the past I have even broken things.
This can be confused with a tantrum, but there’s a key difference; tantrums are goal-oriented, behaviour designed to achieve a desired outcome. Meltdowns have no goal, they are just an explosion of uncontrollable emotion when autistics have simply been pushed too far.
A tantrum is a choice; a meltdown is not.
In undiagnosed individuals, this is often misunderstood as a bad temper or poor self control.
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Sensory Sensitivity
Another classic trait I’ve always experienced is being very sensitive to sensory input. If a food has the wrong texture, then trying to eat it makes me physically gag. Loud or unpleasant sounds feel like receiving an electric shock straight to my brain. Bright lights or strong smells feel overwhelming.
Because of this, seemingly little things that most people don’t notice, like a dripping tap or a buzzing light can be a major stressor when you’re autistic.
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Sensory Seeking
On the other hand, this sensitivity also extends to positive sensations. Certain textures, sounds, smells, feelings, give me intense energy and pleasure, leading me to flap my hands to feel movement, squeeze myself to feel pressure, rub my hands together, or play with things to feel their texture. Just as I instinctively avoid loud noises or bright lights, I instinctively and actively seek out positive input.
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There are many other autistic traits besides these five, but these were the primary ones that, looking back, signalled that little Max was autistic.
If these sound strangely familiar to you, maybe that’s something you might like to explore in more depth. In my experience, understanding oneself is the key to self-empowerment, and it never hurts to look into things.
February 2014. It feels like a different lifetime now.
I’d just finished University, I wasn’t yet connected with the autistic community, a career in advocacy hadn’t even occurred to me, and the discourse surrounding autism in general was still overwhelmingly negative.
Back then, just like today, I had an intense passion for writing, and several of those closest to me had suggested I start a blog. I put it off at first, as I couldn’t think of what I’d even write about, and I really didn’t think anyone would be interested what I had to say.
When I finally decided to give it a go, I just typed out the contents of my crowded brain, but almost immediately, like the yeast in shapeless dough, my autism sprang to life and breathed life and form into my ramblings.
At the time, I didn’t have a terribly positive view of autism; it saw it as this saboteur in my brain, a monkey with a wrench upstairs loosening bolts and jamming machinery. That was my lived experience up to that point, having had little support and little contact with other autistics.
As my blog grew however, it was read by someone who worked at Asperger’s Victoria, and they got in touch and invited me to join a support group they ran. From there I dived headlong in the autistic community like a captive dolphin let loose into the sea, and as I got to know them I began to realize that it wasn’t all about deficits; autism was my passion for writing, my attention to detail, the joyous energy flooding through my soul when I engaged with my interests.
Over the next ten years to this day, this same realization has begun to take root in society at large, like wildflowers blooming on what was once a battlefield. I’ve seen the world grow kinder, more understanding, more accepting. I’ve had the privilege of helping bring this rethink to the next generation of autistics, so that they get the support so many of us missed out on.
The progress I’ve seen since I started this blog a decade ago fills me with joy, with pride, and with hope. We still have a long way to go, but the future looks bright.
Obsessive Compulsive Disorder is simultaneously one of the most well-known mental health disorders, and one of the most misunderstood.
Stereotypes abound; “I like to arrange my pens in the order of the rainbow, I’m so OCD” or “odd numbers annoy me, I’m really OCD about it.” It’s portrayed as something cute and harmless; a quirky nuisance.
The reality of course is far more insidious.
See, these examples, while usually just the natural human desire for order and structure, can in fact be genuine Obsessive Compulsive fixations as well.
So how do we differentiate between stereotype and reality? How can we tell when it’s actually OCD?
Well, the first difference is one of impact. If you’re like most people, having your pens out of order might annoy you a little, but you can set it aside and get on with your day. If it’s a genuine Obsessive Compulsion on the other hand, then leaving them that way feels like you literally cannot breathe, or like you’re touching a red hot frying pan. It’s mental anguish.
The second difference is the compulsive component; when you have OCD, there are specific actions or “rituals” that you feel you must perform to make the mental torture go away, even if they are completely irrational or serve no practical purpose. These may manifest as repeated hand washing after they already clean, checking if the doors are locked three times before bed, or phrases that you feel you must say aloud. Even if you know they’re not logical, performing them feels like the only way to make the pain stop.
But the relief is only temporary, hence the Obsessive component; for those with OCD, the intrusive thoughts inevitably resurface, forcing you to repeat the rituals over and over in an endless cycle.
OCD is a monster, and left unchecked it can turn one’s life into a living hell. But the monster can be defanged, and the first step is seeking help.
At my worst, I couldn’t leave my house due to OCD. Now, I can’t remember the last time I had a panic attack. Beating it back isn’t easy, but it is possible.
“My child won’t play/socialize with others, they just play with themselves” is something I hear a lot, and I understand the concern; nobody wants their child to feel lonely or left out. But sometimes, with autistics, it can be a misunderstanding of what is actually going on.
Consider this; have you and a close friend or partner ever sat next to each other and done different things? Maybe one of you is watching TV and the other is reading on their phone. Maybe one of you is knitting and the other reading a book. Maybe one of you is playing a game and the other is watching.
Now, in that scenario, would you say that you’re not spending time with that person, just because you’re doing different things? Of course not. You’re still doing what you’re doing together.
The term for this is “Parallel Play”, and while pretty much everyone does it, (including adults!) for autistics, this can actually be our preferred method of interaction, because it places less pressure on us than socializing more directly.
Sometimes, two kids who are doing different things side by side, even if they don’t speak a word to each other, are actually socializing in their own way; they are enjoying each other’s company in a way that makes them comfortable.
Think of it this way; in some cultures, at a main meal, everyone takes food from one shared plate or bowl. In others, everyone has their own bowl, but just because they’re not eating from the same bowl, that doesn’t mean they’re not sharing the same meal together.
Autistic play is often pathologized and treated as incorrect, but it’s really just a different custom, one that better suits the way our brains process things. So please respect our way of doing things. It may be different, but it works for us.
Yep, that title reference dates me as clearly as my yellowing Super Nintendo from Christmas 1995.
Anyway, throughout this year I’ve been teaching in several school programs with autistic students, and in one of them in particular, the kids tended to be really dysregulated. No matter how hard I tried, I couldn’t seem to help them focus. Sensory toys, movement breaks, games, nothing seemed to help.
It’s not their fault mind you; high school is a pretty stressful environment for any teenager, much less an autistic one. When I was 13, I was about as regulated as a snowman in a blast furnace.
Then one day, a student was going through my box of sensory toys, and she asked if I had any playdough, slime, or plasticine. I didn’t, but I promised her I’d get some.
The next session I bought some in, and encouraged them all to take a piece to play with as they listened. The difference it made was remarkable. These kids who’s been bouncing off the walls before managed to stay on track for the whole session.
Being able to shape the plasticine as they listened kept them grounded; it gave them the right kind of sensory feedback and fulfilled their need to stim. It also acted as a creative outlet; now after class they show me the things they’ve made from it.
After weeks of trying, the program was finally going well, and how appropriate that all it took was for one of the students themselves to ask for what they needed.
And that’s the key takeaway; yes, plasticine, slime, playdough, or clay can be a fantastic classroom aid, but more importantly than that, if we teach kids to self-advocate, and actually listen to them, they know best.
A couple of weeks ago, the train I usually take to work went offline due to railways works, and I had to get there via bus replacement instead. As those who live in Melbourne will know, public transport here is about as reliable as the ice cream machine at McDonalds.
For a lot of people, this would be a mere nuisance. A pain in the bum, sure, but manageable. For a lot of us who are autistic, however, changes to our routine and public transport are up there with toothaches and slow wifi; put the two together and you have nightmare fuel.
Eventually, I did make it to work, and home again. But the following day, all day, I felt exhausted, just completely drained, like a kind of mental hangover.
See, what a lot of folks don’t realize about being autistic is that a lot of everyday things come with hidden costs. It’s like when you buy a game console; there’s the advertised price you pay for the system itself, but what it doesn’t tell you on the box is that you also have to pay for controllers, games, online subscription, all that extra stuff on top of that.
For some people, bus replacements or going to the shops or talking on the phone might be no big deal, but for me, it takes a huge amount of energy.
Because this isn’t widely understood, people like me are often thought of as lazy. This mentality is so pervasive that we even internalize it ourselves; I still catch myself sometimes feeling bad about being on a disability pension, or working part time, or spending hours on my laptop to recover; why can’t I just go about life like other people do?
The reality of course, is that we’re not being lazy; some things just require so much more effort for us, like how it takes more effort for a seal to move around on land. That doesn’t mean seals are incapable creatures though; in the water they thrive.
This is why it’s so important that we build awareness and acceptance of autism; so that we don’t have to run ourselves into the ground trying to keep up with standards that weren’t designed for us. So that we know that it’s okay to take a break when we need it, or to ask for help, or that I wasn’t very productive the day after the trains were down.
We may not be able to eliminate bus replacements and other unavoidable hassles, but we can foster understanding of people’s hidden struggles, and give them the support and accommodations they need to get by.
When I was 17, I spent two months in Japan as an exchange student. Long story short, (and you can read the long version here) while it was in many ways a valuable experience, my then undiagnosed OCD exploded out of control without my parents around to support me. Like volcanic ash building up until it collapses a roof, many small things combined to overwhelm my capacity to cope.
By the time I came home, I was so unwell that I couldn’t even leave the house or use a toilet without having a panic attack.
In the sixteen years since, I often thought about going back, thinking that I could get so much more out of it now, as an adult with more stable mental health. Then, late last year, I was invited there with my girlfriend to attend the wedding of one of her friends.
Needless to say, I was very nervous. Even beyond the traumatic memories of my previous visit, traveling overseas is a pretty intense experience when you’re autistic; the unfamiliar setting, the organizational complexities, and being cut off from my usual coping strategies were all intimidating obstacles.
Still, I felt I had unfinished business in Japan, so I decided to give it a go, and last month, it finally happened. (A big thanks by the way to my amazing girlfriend, who supported me throughout the process. The photo above is also her handiwork)
The thing about improving one’s mental health is that it’s often a gradual, long term process. It took me years to recover to from my last visit, but because this healing happens so slowly, it often feels like you’re gaining no ground at all.
Going back there made the difference crystal clear, and showed me just how massively far I’ve come since I was a teenager.
The last time I was there, I literally wet myself once because I was too scared to go into a public toilet. This time, I used them all the time, and was unfazed. Last time, if a tree branch or the handholds on a train touched my hair, I would have to shower. This time, didn’t bother me. The whole trip was full of these revelations, made explicit by returning to a setting that had been so scary last time.
I may not have vanquished my OCD, and perhaps I never will, but where once it was an unstoppable monster holding my brain hostage, now it was a mere nuisance.
My first visit to Japan nearly broke me; my second taught me that I’ve grown stronger than my teenage self could ever have imagined.
Max's shop of horrors 