Max's shop of horrors

Warning: imagination testing site. Enter at own risk

Taking Shape

This past year has been a transformative stage in my life. It’s been a time of many breakthroughs, but perhaps the most significant for me is that my volunteer work in autism advocacy has developed into a paid job.

In March, I started working as a classroom mentor for students on the spectrum at a local high school. This is something I never thought I would be capable of doing, but I absolutely loved it, and I’ve already signed on to work at an additional school next year.

My work as a speaker has also taken off in a big way. Among my many gigs this year, I got to talk at the Victorian Autism Conference, at a forum on Autism and Employment with Amaze, and at Young Social Pioneers 2016. It still boggles my mind that people would pay money to hear me talk, but hey, I’m not complaining!

I’d also be remiss if I didn’t mention the Autistic Teens group I was recruited to help run in February; I’ve met so many amazing people there, and while I would’ve been happy to continue doing it for free, that too will become a paid position next year.

Now that I write all this down, I feel like I’m bragging, but I’m really just over the moon to finally have paid work, and for that work to be so awesome that it doesn’t even really feel like work at all.

My dream of having a full time career in autism advocacy is taking shape, and I can’t wait to see what’s next in 2017.

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A Change of Pace

Aloha lovely people! First of all, I just want to thank you all from the bottom of my blood pump for your continued support. Producing a new blog entry every Tuesday for almost three years has been challenging to say the least, and the main thing that’s kept me going is having such an awesome and appreciative audience.

Alas, after so long, I fear I am reaching the point of creative burnout. For the last few months I’ve been really struggling to come up with new entries once a week, and as we move into 2017, I’ll be stepping up my commitments at work.

As a result, while I will continue to post new blog entries, from 2017 onwards I will no longer be doing so on a regular weekly basis. Rather, I will simply post whenever I find the time, energy, and a good enough idea.

It will be difficult to let go of my weekly routine, as I know my OCD will make me feel like I am somehow ruining three years of work by doing so, but in the long run I think I will be better off, as posting every Tuesday has begun to feel like a stressful obligation.

I just thought I should give you all a heads up, in case in seemed like I was abandoning this blog, which I assure you I’m not. The Shop of Horrors will remain open, just with different business hours.

“Mildness”, Farts, and Mirror Masks

“Your autism must be very mild.” Oh boy, if I had a dollar for every time I heard that one, I’d be sleeping on a pile of gold like Smaug, and living in an air conditioned chocolate palace with a swimming pool full of coffee.

I’m not offended by these comments, mind you. It’s not meant maliciously, so I don’t take it as such. After all, it’s true that a lot of people on the spectrum face significantly more challenges than I do.

On the other hand though, I feel I should point out that my “mildness” is, at least partially, an act. When I’m out in public, I wear a mirror mask, which reflects the social norms of those around me. If you saw me in the privacy of my own home, “mild” might not be the phrase that comes to mind; I flap my hands, I make funny noises, I do a lot of the things more typically associated with the word “autism”.

If I appear “mild”, it’s because I’m expending a tremendous amount of effort to appear as such. My autistic characteristics may not be apparent, but that’s not because I don’t have them; rather, I’m holding them in for the time being, kind of like when you’re on a date and you really need to let out a nice fart, but you know it’ll spoil the mood.

I’m not ashamed of my autism. I mean, I’m not ashamed of the fact that I fart either. They’re both natural parts of who I am, and restraining myself from indulging them in public doesn’t change that.

Learning to shake hands

Early this year, I set myself a goal; that by the end of 2016, I would have trained myself to shake hands with people without flipping out. Now, that may not sound like a difficult thing, but when you have OCD, shaking someone’s hand can be the equivalent of an arachnophobe picking up a tarantula.

I don’t mean to sound derogatory or judgmental towards others, but whenever someone offered me their hand to shake, my OCD would kick into overdrive, and all I could think about was “you don’t know everywhere that hand has been and everything it might have touched” and “what if they forgot to wash their hands after going to a toilet” and “what if they sneezed into that hand or wiped their nose with it a few minutes ago?”

The fear would kick in like a shot of liquid nitrogen, and I’d tell them that sorry, I don’t do handshakes. It was nothing personal, I just would rather not deal with the anxiety that would inevitably result.

This year I resolved to confront this fear, using the same techniques I used to acclimatize myself to hugs, rubbish bins, public toilets, and public transport; gradual controlled exposure. I made a point of shaking hands whenever I met someone new. At first it was terrifying, but I forced myself to keep doing it, and over time, it got less and less scary.

I can’t say it’s completely lost its bite, but I’ve reached the point where I can cope with it reasonably well, and I no longer avoid it. And so, another battle is won in the ongoing war against anxiety. Now to decide which fear to target next. There are still plenty to choose from, but slowly yet surely, the list is shrinking.

Emotional Astronomy

When you live with anxiety, fears and worries are like the stars in the sky. They’re always there, but how many shine through depends on the conditions.

On a dark and lonely night, a countless multitude stab down like icy needles. But then you hang out with a friend or do something you enjoy, and it’s like the moon has risen, its comforting light blotting out the weaker fears and dulling the stronger ones.

It’s not just overtly happy feelings that help either; sometimes just keeping busy or exercising can be like cloud cover, muffling and burying.

Best of all though, is the sun. That one thing so overwhelmingly positive that it completely drowns out our anxiety. Everyone has their own sun. It could be throwing yourself into your favourite hobby. It could be spending time with your partner. Usually, it is the thing we love the most.

Naturally, it can’t always be sunny, and like the stars, our fears will always be there, but that doesn’t mean they’ll always hold sway.

Social Hangovers

You wake up drained, feeling like your mojo has been sucked dry by space vampires from the dark side of Pluto. Your head aches, and your brain spins its wheels in the quicksand of fatigue.

“Oh God,” you murmur to yourself. “I swear, I’ll never socializing like that again.”

When you’re on the spectrum, socializing can be a lot like alcohol; sure, it can be fun when you’re doing it, but too much can knock us out of commission and take a whole day to recover from.

After all, it’s hard work; our brains are working overtime, trying to manually analyse countless verbal, visual, and contextual cues that most people process automatically. At the same time, we’re acting; we have to consciously think about what we’re doing with our faces, voices and bodies. It’s like being on stage, or on camera. Hours of that can be incredibly tiring.

Naturally, after such exertions, we need a bit of a break. Sometimes that might mean a couple of hours, but after a particularly taxing social binge, we may need to take a day for ourselves, to regroup. It’s nothing personal, and it’s not that we’re lazy or weak, any more than someone who works full time is lazy or weak for taking weekends off. And it’s certainly nothing to be ashamed of or feel guilty for.

Ultimately, we need to take care of ourselves, and part of that is knowing when to take it easy.

Punching through the stratosphere

Imagine trying to explain to someone in the year 1900 that before the century was out, humans would have traveled to the moon, put robots on Mars, and invented a global electronic network through which information could be shared almost instantaneously.

In all likelihood, they wouldn’t believe you, because in their mind, such things would be beyond the limits of reasonable probability. People tend to think that nowadays we’re more enlightened, but the truth is, all too often we see the world through a similarly limited view. We place restrictive limitations on what we believe ourselves or other people are capable of.

One of the privileges of my position is that I get to see these limits shattered on a daily basis.

I work with a guy on the spectrum whose parents were once told that he wouldn’t be able to go to a mainstream school. He is currently nearing the end of a PhD in medicine.

I’ve worked with students who in the space of a few months have gone from being too scared to utter a word in class, to giving a speech in front of hundreds of people.

I know numerous individuals who were expected to never finish school, or get a job, or live independently, but who managed to surpass these limiting predictions like a rocket breaking free of Earth’s gravity and hurtling into space.

If there’s one thing I’ve learned, it’s to never underestimate someone’s potential. If you showed that person from 1900 the Apollo 11 rocket, they’d probably say it would never get off the ground. And yet there are footprints on the moon.

An idle Aspie can be a recipe for catastrophe

One of the paradoxes of the spectrum, at least in my experience, is that while over-stimulation is a constant threat, looming overhead like a flying elephant that’s recently drunk prune juice, under-stimulation can be just as dangerous.

When I’m busy, I can focus on the task at hand to distract myself from negative thoughts. But when my mind is unoccupied, things like anxiety and frustration tend to bubble to the surface.

When I finished University, I spent six months unemployed before I started doing volunteer work. I had all the spare time in the world, and very little in the way of stressful obligations. And yet, I was miserable. Day after day I sat on my computer doing nothing, marinating in a seething broth of self-loathing, loneliness, and feelings of inadequacy.

When I did start working, doing meals on wheels for the local council, I found that a small amount of external stress was actually a very effective antidote to the overwhelming internal stress I’d been experiencing when I had nothing to do. To this day, I hate it when I have more than a few days in a row without work, and I actually look forward to days when I’m busy.

Currently, unemployment levels in the autistic community are tragically high, and in my opinion, one of the reasons this is so damaging is because it means so many of us are left with no diversions from our inner demons. We’re not getting that healthy mild dose of external stress to inoculate us against the turmoil within.

A good short term solution can be volunteer work; not only did this work wonders for my mental health, but it also helped me to transition into paid employment. In the meantime, it’s also good to just be aware that an absence of external stressors is not necessarily a good thing. An idle mind can be a breeding ground for anxiety and depression, and sometimes it’s better to push ourselves than to suffocate in our comfort zone.

(Dis)Closing the Deal

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One topic I get asked about a lot is whether or not someone on the spectrum should disclose their condition to an employer when applying for a job. I myself have been very fortunate in this regard; my autism was actually one of the reasons I got my current job as a mentor and speaker. But I do realize that not every employer is as spectrum-friendly as mine.

As I general rule, I would advise disclosure. However, I think that how you disclose is of critical importance. If you frame your autism in an entirely negative way, and make it sound like nothing but a liability, then it will probably hurt your chances.

On the other hand, if you detail the strengths that your autism grants you instead of just the challenges, then you can turn that liability into an asset.

For example, instead of saying “I have autism and that means I get stressed out and can’t deal with noise”, say that while it does give you some sensitivities, it also gives you a high level of focus, determination, attention to detail, or whatever your autistic strengths happen to be. Make them aware of whatever difficulties you may have, but also play up the positives. Sell your autism as a skillset rather than a disease.

Not only will this improve your chances of landing the job, but you’ll also be helping to dispel negative stereotypes about autism, and in turn, helping to build a future where being on the spectrum won’t be a barrier to employment.

The Obligation to Lie

Humans are a strange lot. Our social customs can be so convoluted and bizarre that for those on the spectrum, trying to navigate them can be like trying to unravel a mating ball of snakes, or the wires behind your TV, if they had holes in their insulation and you were standing in a tub of dishwater.

One particular custom that a lot of us find very difficult is knowing when we are expected to lie.

In our society, people often ask questions not because they want an honest answer, but because they want to hear a specific response. Similarly, people often make statements for the sole purpose of being contradicted. “Am I ugly?” “That speech I gave today was so terrible.” “I look dreadful tonight.” “Did I mess that up?” “I’m such an idiot.”

Very often, we spectrum folk don’t realize we’re supposed to lie, and respond with a brutal honesty that can get us into trouble. It’s not that we’re being intentionally hurtful, but rather that we’re misinterpreting “Does my bum look big in this?” as a genuine request for feedback. It may not even occur to us that what’s really being asked for is reassurance.

Now, if you’re not on the spectrum, these kind of ‘white lies’ may seem so obvious and natural that it may be hard to imagine how they could be so confusing. Try to think of it this way; in some countries, the ‘thumbs up’ gesture is considered extremely rude, equivalent to a middle finger. If you live in one of these countries, you would know this instinctively, but if you come from a country like Australia where it’s a positive gesture, you may not realize this, and have no idea why you’ve caused offense. Many of us on the spectrum perceive social protocol through a similar lens; it’s like a foreign culture to us.

If you’re on the spectrum and want to err on the side of caution, a general rule is that if somebody makes a negative comment about themselves, they want to be contradicted, and if they ask for an opinion about themselves, they don’t want negative response.

Honesty, it turns out, isn’t always the best policy. Openness, on the other hand, can go a long way. In time, those of us on the spectrum can learn the nuances of social protocol, just as a person might learn a second language, or the customs of another culture. It takes time and practice, but it can be done. In the meantime, I’ve found that being open about the fact that I’m on the spectrum and find social skills challenging has helped to defuse many a misunderstanding.