Max's shop of horrors

Warning: imagination testing site. Enter at own risk

Re-examining Independence

The other day, someone asked me for my thoughts regarding disability and independence. My first impulse was to say that while I can’t speak for anyone else, I myself have managed to live independently despite experiencing sometimes debilitating anxiety.

But then my train of thought veered off on a tangent, laying fresh tracks down in front of it as it went, like in Wallace & Gromit: The Wrong Trousers.

As social animals, almost all human beings are dependent on one another on some level. An adult who lives alone and supports themselves financially, for example, is still dependent on the farmers who grow their food, the workers who maintain the pipes that supply their water, etcetera. Independence isn’t a binary thing that we either are or are not, but a matter of degree.

Disability is a similarly nuanced concept. All individuals have their own challenges, some are simply more pronounced than others. There are many people who face far more hardship than I do, and others who face far less.

“Dependent” is often treated as a dirty word, as something to be ashamed of. Personally, I don’t think it should be. While those who face great difficulties in life may sometimes need more support, this can be seen as a natural extension of the mutual dependency we all share.

Many disabled people manage to live with a degree of independence close or equal to their more able peers. But for those who cannot, I don’t think there need be any shame in dependence on others, any more than we need feel ashamed that somebody else bakes our bread or works at the power station that generates our electricity.

Our dependence on each other is part of what makes us a community, a society, and above all, human.

Autism and Coffee

It should come as no surprise to any regular reader of my work that I’m a devoted enthusiast of that quasi-magical beverage derived from the seeds of the berries of the Coffea plant. I was savouring my daily dose the other day, (cheap and black, like my sense of humour) when it occurred to me; coffee is a lot like autism.

See, there’s a lot of focus on the challenges of being autistic, which shouldn’t be ignored of course, but virtually never have I seen the flipside touched upon; the pleasure of it.

You know that joyous rush of energy and excitement when a good coffee kicks in? Well, that’s what autism feels like to me when I think of a new idea for a story, or find a new book or documentary on one of my special interests, or when said interests come up in conversation. It surges through my body like hot molten chocolate; I want to dance, to flap my hands, to run in circles, cos I’m just so happy. My brain lights up like a Christmas tree, and it feels freaking fantastic.

It’s this aspect of my autism, this glorious frothy energy that allows me to power through a day’s worth of work in half an hour, or focus intensely on a single task for hours on end. I’ve talked before about how useful these abilities are as far as work and contributing to society go, but I neglected to mention that, perhaps just as importantly, they’re a source of immense enjoyment.

This is why I don’t see myself as “suffering from” autism. Sure, just like coffee, it can sometimes leave me feeling overstimulated and anxious, but when I think about how much fun I get out of it, I consider it a blessing, not a curse.

 

Resisting Relapse

First of all, a head’s up: this entry will be discussing self-harm, so if that’s not something you want to read about, stop now. That being said, I have endeavored approach the subject in a constructive manner, with a focus on coping strategies and recovery. I hope I’ve succeeded in this regard.

It’s been five and a half years since the last time I cut myself. I assumed that with time, the urges would go away, but the truth is, they haven’t. Months may pass without the thought of relapse crossing my mind, but every now and then, when I’m feeling lonely, unwanted, or embarrassed, it resurfaces with terrifying ferocity.

In those moments, the urge can be so overwhelming that it feels like I can’t breathe. Like I physically need it as much as I need oxygen. Resisting it is hard. Damn hard.

Now, I have no official training as any kind of counsellor, psychologist, or anything like that. This is simply an account of what has worked for me.

First of all, I’ve found that, like panic attacks, these episodes tend to be limited in duration. A lot of the time, if I can just hold out for fifteen minutes or so, the urge subsides.

In fact, a lot of the same strategies I’ve found useful in combating anxiety attacks are effective here as well; strenuous exercise, for example. If I go for a jog around the block or do a set of push-ups, it almost always helps me feel better. Meditation can also be helpful; if you don’t know how to do this, there are plenty of videos on YouTube that can walk you through it.

Another trick I use is that I have a word document where I keep a record of nice things people have said to/about me. When I’m feeling bad about myself, I open it up and re-read them.

Now, none of these things are a magic bullet, but as a sort of emotional first aid, I’ve found them valuable tools for keeping relapse at bay.

Perhaps most importantly, I like to remind myself that every day without relapsing is a victory that nobody can take away from me. In five and a half years, that’s nearly four thousand victories. We can’t always erase our demons entirely, but we still give them a kick in the arse and send them packing if they dare show their face. And after five and a half years, my kicking leg has grown strong.

A Helping Hand

There are times when life seems to shrink, like we’re a frog alone in a pond that’s drying up.

We can leave the pond, and fight our way across dry land under the scathing sun to try to find something better. And maybe we manage to save ourselves this way, through immense effort and hardship.

But what if someone saw the frog in the shrinking pool, and carried them a dozen meters to a larger one? Such a distance would be a terrible struggle for the frog, but for someone to carry them that far takes practically no effort at all.

Likewise, when a person is struggling, it can be extremely difficult for them to work through it on their own, while the relatively minimal effort it takes for someone else to ask them how they’re doing can make a huge difference.

It’s incredibly important to check in with our friends regularly, even if they seem to be doing fine; a lot of people will put on a brave face and try to hide their difficulties. Something as simple as messaging someone to say hi and have a chat can literally save a life.

While this can be true of anyone, it’s especially important in regards to people on the spectrum. A Swedish study from 2015 found that autistics without a cognitive disability had a suicide rate nine times higher than the general population. (http://bjp.rcpsych.org/content/208/3/232)

That’s a terrible statistic, and highlights just how important it is that we support each other and provide a safety net of kindness and inclusion for those among us who are facing tough times.

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.

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.