Coping with Autism: Redux

Happy New Year!

Over the past few weeks I’ve been forming a solid plan for the year ahead, and those plans have pivoted on one central focus: I want to get back to Australia.

You wouldn’t know it from this blog, considering that my posting habits tanked as soon as I got there, but I loved my time in Melbourne. I felt at home there, more than I ever have in the land of my birth.

One step in my plan is to get a post-graduate scholarship. My coffers are dwindling, and I’d need all the monetary support I could get. I’ve been digging through my assignment marks to evaluate my prospects.

In doing so, I came across a curious side comment on one lecturer’s feedback. The Unit was “Editing and the Author”, where each student submitted a written piece for another to edit as part of their coursework.

After scratching my head over this – the forums where we shared our pieces are no longer available – I dug around on an old external hard drive. Voila. I’ve found it. It’s an adapted version of one of my old blog posts, specifically “Coping with Autism: My Perspective”, Parts 1 and 2. Those posts got a lot of traction at the time, and I had some wonderful comments from people I’ve never met. It makes me cringe a little to read it now, but that’s always the case with when I read my old stuff.

I’m thinking of writing a Part 3, one that takes into consideration everything I’ve learned and experienced over the past two years. If that sounds like something you’d like to read, I’d love to hear so from you. I’ve learned there’s nothing quite as motivating as encouragement from readers and viewers, so it may be exactly what I need to get my butt in gear.

For now, though, here’s the adapted version of parts 1 and 2. If you have a little more time and would rather read the unabridged version, by all means follow the links above. Either way, I hope you enjoy the read!

blockspectrum

“Am I really Autistic?”

This is a question that plagued me for a number of years. What if the diagnosis was faulty? What if I was just… terrible at socialising and a bit eccentric? Wouldn’t it be awful if I was making a claim that was entirely false?

I very much doubt that these thoughts are unique to me. It may sound insensitive to those much worse off than I, but sometimes I’ve found myself wishing that my symptoms were a little more obvious. If they were more obvious, surely they’d be easier to understand? Well, even if that were true, it’s not exactly a healthy thing to wish for. The fact is that people on different points of the Autistic Spectrum face different sets of challenges. One of my personal challenges, for a long time, was the fear that I was lying to myself and others.

If I really am autistic, why do people not notice? Sure, I struggle with some things that other people find easy, and excel in some things that others find difficult, but to some extent, couldn’t you say the same thing for everybody? Did I just latch on to a label to escape?

The origin of that last doubt is not my own mind. It began with a close family member, and then became internalised. Out of all of my doubts, it’s this one that really clawed at me. Did I try to escape responsibility for my behaviour, and foist the blame off on some nebulous disorder?

I have gotten to the stage where I say this, boldly and clearly: I did not. But, the hilarious thing is that the question was completely irrelevant in the first place. People don’t typically respond to the unknown by offering leeway. It just doesn’t work like that. It is, in fact, the very opposite of human nature. It is the exception, and not the rule. The benefit of the doubt is not so trivially obtained.

Allow me to demonstrate: Last year, I got a job at KFC. It’s safe to say I had to jump through some hoops to be one of the new batch of recruits, which I suppose is unsurprising in the current job market. In the process, I let them know I was autistic, simply because I thought it would be a bad idea to conceal it.

I was fired a couple of weeks in. For slacking? Nope, I worked as hard as I could. For a big slipup? Nope, the slipups were few and minor. For bad customer service? I was commended for my customer service, it was my biggest strength. No, when I was taken into the back at the end of that shift and was unceremoniously told that I’d been let go, the reason given was simply this:

“You’re not picking it up fast enough.”

Up until this point, I thought I’d been doing quite well. With the effort I’d put in to learning the till and juggling orders, I was picking things up faster than I would usually. But therein was the problem: I was judging by my own standards. How could I expect my employers to do the same? How much did they even know about Autism? Here’s the real question: did it matter? Of course not. They wanted an employee that could quickly give a return on the investment inherent in training them. I was not such an employee, so I wasn’t worth the time or money.

Could I have protested, which quivering lip, “B-but I have Asperger’s”? Ha, I doubt that I ever could. I’ve developed quite the aversion to pulling that card. Assuming that experience had not already seeded that aversion in me, though, would it have helped? I highly, highly doubt it. They already knew, after all, and regardless of how much they knew about it, the decision was made.

It was hard to take solace in the fact that I tried my best when this simple fact was glaring me in the face: I couldn’t maintain a minimum-wage job for more than a couple of weeks. Funnily enough, i since came across an online list of “Bad Jobs for People with High Functioning Autism or Asperger’s Syndrome”. First item on the list: cashier. Again, cold comfort.

Another behaviour I’ve learned from experience is to avoid using the term “Asperger’s Syndrome” if at all possible. I still remember bringing it up for the first time on an online message board, if only for the downright volcanic response I got. It’s not exactly surprising that such vitriol was found on the internet, given the general principle that a normal person given anonymity and an audience becomes a menace to society. Still, the things that were said had their root in commonly held conceptions that I’ve seen repeatedly since then.

The stigma attached to Asperger’s is twofold, as I have seen it. In general terms, the twofold perception is this:

1) Asperger’s Syndrome is something that shut-ins diagnose themselves with.

2) Asperger’s Syndrome is basically a fake mental illness.

The problems this perception causes are pretty self-explanatory. To anyone holding this view, there are two layers of doubt to break through. First, the doubt of a person’s claim to having Asperger’s Syndrome. Second, the doubt of the validity of Asperger’s Syndrome itself. Whether there is any precedent to the first assumption – whether there are people who ‘self-diagnose’ Asperger’s – is utterly moot. Assumption is assumption. Trivialisation is trivialisation.

Even when such things are said in jest – a far more common personal experience – they are equally harmful if not more so. It’s not funny. “Ass-Burgers” is not a clever joke, no matter how many Americans seem to pronounce it that way.

Yes, it’s a shame that I default to saying “Autistic” rather than “Asperger’s”. I shouldn’t have to, but I feel like I do. I hope that’ll change.

*****

“I never would have guessed!”

This is by far the most common response I get upon telling someone that I’m autistic. Nowadays I just take it as a compliment, but it used to be much more of a two-sided coin.

On the one side, when I first started getting comments of this kind I was somewhat flattered, but on the flipside, these remarks led me to extrapolate that people had begun to see me as more ‘normal’. And, believe it or not, this worried me greatly. Why was I getting better? Autism isn’t something that can just be cured or recovered from. I couldn’t just… not have it anymore, right?

Of course, this led to renewed doubts that I had it in the first place. No more, though: being autistic doesn’t mean that it’s impossible for me to progress in those areas in which I struggle. When I cast my mind back to my fourteen-year-old self, I can’t believe how far I’ve come. There were times where I was the butt of a joke and completely unaware. I barely had any friends; those people I spent time with I would now consider as merely tolerating my presence, even though I was oblivious at the time. Hindsight, huh.

Even though Autism should be taken seriously, it should also not be treated like a cage. I think the real balance here is in trusting in my competence while being aware of my limitations. By all means, challenge me. I may struggle with some things, but that doesn’t mean I should be entirely withheld from them and deemed eternally incapable. If I just gave up on being social because I wasn’t very good at it… well, who would I even be right now? Trust me, I would be an entirely different person, and probably not much fun at all to talk to.

In the past few years, I’ve especially come a long way in socialising. Talking to perfect strangers on the street for two years will do that for you. But I still feel a world away from everyone around me. There’s always something missing, but I have no clue how to get it.

An overwhelming feeling of not belonging keeps coming back. It comes especially strong when I attend conventions and gatherings with other people my age. In those moments, I just feel like no-one would give a crap whether I lived or died.

And you know what that feeling is? Untrue. I know it is, even when I feel it. Regardless, in my struggle to be noticed and loved by many, I often lose sight of those good friends I do have. Then I exaggerate what I perceive to be negative responses in others, and all of a sudden I’m down in the dumps. I’m not trying to belittle these feelings, I’m trying to deconstruct my own thought process. Although I do exaggerate, I can never entirely be sure how much of my exaggerations are based in fact. The thought of these ideas being even partially correct terrifies me.

I wish I could pinpoint what these difficulties are. If I knew what I was missing, you can bet I’d do my utmost to emulate it. If I knew what I was doing wrong, I’d try my hardest to correct it. The major part that I can identify is my shoddy name memory. Here’s a recent personal experience which demonstrates some of the social problems that Autism can cause – it demonstrates the name memory aspect particularly well.

A month or two ago, I was walking back from shopping, and was nearing my flat when I felt a tap on my back. I turn around to see a familiar face, but… goodness. Where do I know her from? What’s her name? I can’t just guess. That’d look ten times worse for me if I got it wrong. Crap. I wasn’t prepared for this, I came out to get some shopping. A test of memory and a conversation were not on the cards! Crap. Crap crap crap crap crap. Uhhhhhhhhhh….

Such was my thought process as we proceeded to have our short but incredibly awkward conversation. From the way she later paraphrased my side, I came off incredibly cold and dismissive. Nothing could have been further from my intentions. I was just trying to figure out who she was and how I knew her. The fact that I had forgotten her name didn’t mean that I didn’t care. In fact, as I realised to my horror the moment I stepped into my flat, I’d registered her name perfectly well- quite an uncommon occurrence after only a few conversations. I just couldn’t pull it out at that moment of pressure. Additionally, while I was trying to deal with the problems I could notice, she was seeing the problems that I couldn’t. I’m just not conscious of my irregular behaviour sometimes. On occasion I hear about things I’ve done in the past and they completely mystify me. Who would do that? Well, I would, without any immediate awareness that I’m acting strange. As for this occasion, I immediately messaged her on Facebook to apologise, but to some extent the damage was already done.

Well, such is the light and the heavy of the challenges I face as a result of being autistic. Thank you for taking the time to read. Hopefully, in dissecting my own personal experiences and feelings – some of them quite personal in nature – I’ve been able to give you an idea of a handful of the obstacles that Autistic people face. Especially, of course, those with asperger’s syndrome, as I can’t speak much for those higher on the spectrum. Simply understanding these issues, and spreading that understanding, will do a great deal for anyone you know who shares these things in common with me.

If you yourself are autistic, perhaps you’ve identified something about yourself that you never were able to place your finger on before. As far as advice goes… Well, I can only speak from experience, and so I can point to three big steps in my personal development from which you could possibly gain some ideas.

1) I started college and made some actual, honest-to-goodness friends. This one’s not necessarily easy to replicate for everyone, since it inherently depends on other people. The best place to look, though, is wherever there are probably people with the same interests. Common ground is valuable for anyone as far as developing friendship is concerned, but for people with social difficulties it’s almost vital.

2) I did two years of missionary service, and in doing so faced some of my biggest challenges head-on. Now, as much as I’d highly recommend it, I know not everyone’s going to go serve a mission. Still, finding something that’s doable yet highly challenging can really help in conquering fears.

3) I started a blog and even, recently, a YouTube channel. Boy, is self-expression useful. Finding a productive and enjoyable hobby and sharing it with others can edify all involved, especially the one sharing.

Whoever you are, I hope my ramblings helped you in some way.

-Jesse (@FunPunditry)

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