Hi! Welcome to my blog. In 2017, I was diagnosed with Autism Spectrum Disorder, a condition where the affected have a neurological condition that means their brain develops differently, causing sharper senses, honesty, an ability to notice little details, and social awkwardness or a liking for being alone. Symptoms vary from person to person – no two people with autism are alike. The purpose of my blog is to raise awareness. Someone on YouTube insisted that autism means the affected are stupid. Autism Speaks, an infamous charity, refuses to actually get opinions from the affected. This blog is here to tell you that no, we are not stupid. We deserve to be heard. And everyone deserves to know what it’s like, so we can be respected, understood, and we will no longer be excluded from the career paths we choose to take.
Everyone in the disability sector is familiar with the phrase “autistic burnout”. It’s not like one of those obscure traits that no one outside of the disability sector knows. That’s because while I can’t say every autistic person experiences it, it’s something that happens everywhere. That’s why the suicide rate is far higher in people with autism. Trying to live a life that isn’t designed for their brain to handle becomes too much and they just can’t try any longer.
On the other hand, I think every person with autism, whether they’ve already reached burnout territory or not, have mini-burnouts now and then. It’s a burnout where they have to remove themselves, but then have the will to get back up. That’s what meltdowns often appear to be. Are they a warning of ultimate burnout? Maybe, if they happen more and more frequently. Are they a bad thing? They feel like it at the time, but if it doesn’t last, it might actually help.
This kind of temporary burnout is something I have to deal with all my life. It always happens when I’m working really, really hard to look like everyone else, act like everyone else, and be friendly, charming and healthy with it. It’s just not something that happens. It never shows itself until it’s happening, and that’s what makes it so dangerous. One day I’ll be thinking I’m totally fine, and then the next, it’s there and everyone blames me.
And that’s the worst part about burnouts – any burnouts. No one thinks it might be the world’s fault, a result of tiredness in desperately trying to act like everyone else – unless you’ve been there in which case you’re either feeling too much the same way to be a sympathetic ear (and it’s not your fault at all), or not there at all (and that’s not your fault either). Your autistic friend, neighbour, family member or acquaintance isn’t trying to look for a crutch. They just want to be allowed to be themselves and not have to burnout by being constantly on their best behaviour, like everyone else. Why are you blaming them for just wanting to be what you are?
So let me be me. Let me have bad moods when I’m not happy. You can ignore me if you want for that time, don’t feel obligated to ask me what’s wrong. Just don’t act like I’m doing it on purpose. Because I’m not. And the only thing you can do is make me feel worse about it when it’s over – and the last thing any burnout aftermath needs is guilt.
Forgetfulness is not a textbook feature of autism. Really, it’s not. I can’t think of anyone with autism (including myself) that just finds it easy to forget things. I can forget stuff, but not too much. No, I’m talking about little stuff that you forget to do. Stuff that doesn’t affect anyone else. A feature that seems to apply to autism much more than general forgetfulness.
I, personally, sometimes forget to eat. Why is this a feature of autism? Well, it’s because of the reason I forget. A textbook feature of autism is getting really involved in something, the rest of the world dropping away for a little amount of time in favour of this pursuit. And forgetting to eat, or get some water, or wash hair before bedtime…well, that’s what my autism can do.
For example, today I didn’t feel particularly hungry at all. So when it got to my usual dinnertime, I didn’t bother to get up and cook something. It was only when I realized that it was almost eight o’clock that I realized if I was having any dinner, I needed to do it right then. Not to mention that I only had a snack for lunch because I had it late and I didn’t want to spoil my appetite for dinner.
I don’t often forget important engagements unless I have one almost every day of the week, which has been happening recently. Tutoring Tuesday, cooking Wednesday, product making Thursday, meetings Friday and babysitting Saturday. And this week, I was busy on Sunday and got to bed late, so I only found the time to write this now. But the things I forget are more like eating, sleeping and checking the time regularly.
But you know what?
Those are the most important ones.
Have you ever heard of “blocking”? It depends if you’ve ever been in a performance or drama class. Blocking is just a term for working out where you’re going to stand, where you’re going to walk and what actions you’re going to do. And most actors will write it on their script. Easy and simple, no? The director tells you what to do. Your lines and acting ability say the rest.
Unfortunately, for the average autist, there is no script and no director. Figuring out what to say is hard enough, but when you realize that you have to connect actions to work out if what you hear is correct, that adds another whole new layer to everything. I mean, it’s fine if the person telling you that you’re his best friend is also holding a steak knife with dried blood on it. You can figure out that what you’re hearing means something completely different, like a suicide pact you don’t remember. But when someone tells you they didn’t borrow your tent and fidget, it’s not completely clear that they are feeling guilty because they did. It doesn’t help that many of us in the autistic community fidget out of habit. I know I do. It’s all I can do to train myself out of rocking.
Blocking means body language. And so does communicating. It’s not an easy thing, to know what someone wants when they don’t tell you, but that’s why you neurotypicals notice body language. You know because you have a built-in sense. The autistic community doesn’t. Oh, we want to know what you want. We’re not selfish in that way. Many of us would dearly love to know what you want to hear and say it. But although it’s not all of us, a lot of us don’t know unless you tell us. Like, is it too early in a relationship to say “I love you?” Do you really want advice, or do you want us to tell you that you did everything right when it was all wrong? Why can’t you just say it straight out? We’re not mind readers.
And don’t get me wrong, this is a neurotypical struggle sometimes, too. It’s just an autistic struggle in much more clear-cut situations. Some forms of body language are blatant to a neurotypical, while an autist won’t catch it. What we really need is a director, so we know what body language to use and what body language tells us. But we don’t have a director. We only have experience. And so we’re going to have to get to work experiencing a lot more blocking.
Yeah, okay, I know, I’ve talked mood swings and what autism can do with them. But it’s like the world – remember, having autism is like playing a game where you don’t know any of the rules but everyone thinks you do so no one bothers to tell you any of them and you have to work them out on your own. Think like you’re playing Monopoly and because you didn’t know you could buy properties, you lose all your money because everyone else bought all the properties before you got the idea of how the game worked.
Moods seem to work the same way. You think you’re okay for about ten minutes, but then you’re ticked off and mad and you don’t even know why. Most people get these mood swings as teenagers, but autism triggers major ones over and over, with the usual triggers – struggling to act like everyone else, socializing all day and half the night too, and (well, this might just be for me) starving and not allowed to eat one of the doughnuts being sold not three feet away. Or the authentic pizza further down the street. Or the gelato at the next stall – seriously, if you ever have a chance to get down to Newmarket during the Italian festival and you like food, go.
But me? I had a banana for breakfast and was extremely hungry by the time I got to Newmarket. I got my food (nothing Italian, but I still had some lunch), but I was still moody all day. The skirt at Allanah Hill didn’t suit, I didn’t have time to try on the denim dress in Seed, I put the wrong indicator on at Hatfields, I started making dinner far too early. And maybe, just maybe, none of those things would’ve happened if I hadn’t spent the whole of yesterday trying to be pleasant and chatty and tolerant. Maybe if I hadn’t been dicing capsicums and singing Disney songs, I would’ve been more alive. That’s my problem. I can be life and soul of the party when I want to be, but I forget that it always puts me in a bad mood later on.
How am I going to learn how to stop being one extreme or the other? Well, join me next week. Hopefully, I’ll have found the answer.
Have you ever wished you could take something back? Not to not say it, but to say it differently? Or have you ever thought you said something very nicely, but were accused of being aggressive? Of course, the former has probably happened once in your life. Any neurotypical has probably once said something that came out wrong. You wouldn’t be human if that didn’t happen. But there are very few neurotypicals who think they say something in a way, and have it completely misinterpreted that way. No, that is something the community of autism has probably experienced the most.
Like saying “Is this stir-fry all fresh vegetables?” What does that mean? “Wow, it’s all fresh veggies, and some crushed peanuts, too! Isn’t that thoughtful?”, or “I don’t like fresh vegetables! Where are the frozen ones?” Or, it can be a little of both. Like “That’s really healthy! I’m glad I have all fresh. Of course, maybe I could add cashews and some baby corns from the tin, because I like those too.” Like today. I didn’t mean for my voice to make it sound cross, because I WAS happy to have a stir-fry made of completely fresh vegetables. But no, just asking that question meant I had to sit through being yelled at for being ungrateful, when all I wanted to do was say how lovely and thoughtful it was to put in all that hard work when it would have been so much easier to just toss a few frozen veggies.
I’m not even going to count the twenty-odd times that everyone says I’m angry, when I only got angry after I was accused of being angry – I was fine before then. It’s not worth dwelling on it for that long. It’s just too many times.
Keep in mind, this problem with tonal regulation doesn’t happen to everyone with autism. But it happens to a few others. And it’s not always an aggressive interpretation (although I have known a little boy that always looked and sounded cross). It might be an interpretation of lifelessness, no matter the real energy level. Or always on the verge of crying (I’ve received that question, too) when the real mood is neutral.
My point is, if people don’t take into account that some people with autism can’t regulate their tone and their volume limits what expressions they can choose (which is a problem, seriously), then someone is going to get hurt. And it will be the person with autism, and I am getting hurt. And I’m not going to stand for it!
I’ve talked about routine break quite a lot on this blog. I seriously don’t mind a few changes here and there. But what about when you’re changing every part of one routine? That is, what you eat and when you eat?
Yesterday evening, I started my diet. It was nothing big at first, just having two boiled eggs and two pieces of toast (one peanut butter and one Vegemite) for dinner. Okay, so it was more like a breakfast plate, but it tasted fine and filled me up. I like toast and even just eat it with butter sometimes, and although boiled eggs can sometimes be unpredictable, these ones were just how I like them (mostly solid with just a few drops of liquid in the middle).
It was today that things got hard. I had baked beans for breakfast – one of those little baby tins that are about half the size of a regular one. I have now bought twelve more of those tins for future breakfasts (alternating with eggs). I wanted sushi for lunch, so I didn’t eat anything more for the next few hours. However, my body was used to lunch being at twelve, so by half-past, my mind was being severely punished by the change in routine and my body insisting it was hungry. I spent the afternoon tearful and tortured, both by the fact that I had to start dieting and that I didn’t feel good. And I never did get the sushi I wanted.
After a few hours of this, I was encouraged to go and have a snack, so I had to settle for plain popcorn. Now, I like my popcorn plain, second only to buttery popcorn, so it was actually an enjoyable snack, and I did feel a lot better after eating it.
Then for dinner, I had chicken noodle soup, which as everyone knows, is extremely healthy. Because the chicken was boiled and had no skin on it, it was almost pure protein, no calories.
So what next? I guess I’ll just have to get used to this new routine of food. I’ve vowed to get my weight down. I haven’t checked my weight recently, but I hate the way I look in all the dresses I’ve tried on this week and I should fit into them more comfortably. If I look good in my two-year-old polkadot dress by November, I’ll have made it. My new routine will be eggs or baked beans for breakfast, a sandwich/roll/American hot dog for lunch with some carrot sticks or fruit, a snack of nuts or popcorn, and…well, I’m not going to change dinner.
And I’m going to be seeing a nutritionist on Friday too, so I’ll probably end up with a whole new meal plan. Routine change again. So, as an autist, how have I fared with this so far?
Well, first of all, I had another meltdown. To be fair, I was hungry at the time and it didn’t last as long as it could have. Second, I felt very lifeless all morning. That might have been partly because I was in the throes of anxiety about my weight (and as a matter of fact, I felt my stomach after the noodle soup and it felt like there was slightly less of one already). Third, and most importantly, I am already feeling the temptation to cheat. I know, it’s terrible. But I need to get into better habits.
And so the sun sets on day one of diet time. When will I next eat a bowl of pumpkin ravioli?
Jet lag sucks. That’s not just from an autistic point of view. No one likes to have jet lag. It’s especially bad if you go from somewhere like New Zealand to Italy. The time difference is twelve hours, so even if you go to bed at midnight most days, you feel like you should be asleep when it’s the middle of the day!
For someone with autism, though, a major concern can be that jet lag, and adjusting to it, breaks routine. How can you wait until twelve o’clock to have lunch, when at ten am your body is screaming because twelve was twenty-four hours ago because of where you were yesterday? Do you really have to go to bed at ten when the day before, ten was nine?
That’s what I want to talk about. As my fellow New Zealanders will know, Daylight Savings began on the 29th of September this year, 2019. As such, my clock was completely out of whack. My body didn’t want to wake up at 8 because it felt like 7, my brain begged for lunch instead of breakfast and I ended up with a brunch of katsu don (that’s a Japanese dish that involves crumbed pork and rice with a great sauce). That meant I wasn’t hungry when it was lunchtime and I ended up having sushi for afternoon tea since I missed lunch. That meant, when it finally got to six o’clock and it was dinnertime, I wasn’t particularly hungry for Pad Thai, usually one of my favourite meals (I’m not Japanese or Thai, by the way, all the meals were coincidental – no more rice or rice noodles for a few days).
See? My routine got out of whack because of the clocks changing. And I am not ashamed to admit that I didn’t cope with it very well. I felt moody and weak all morning. It took me several hours to get out of my funk. Admittedly I felt better by the time I was on my way to St Pierre’s, but I was in a really strange mood before that.
Now, I don’t consider myself one of those autists who really needs routine and gets very concerned when they don’t have a plan to follow. But I do like to know where I’m going and what I’m doing, say, about an hour before I do it, or even earlier. And when everything is an hour earlier, well, it takes me a few hours to get my head around it. And if anyone else with autism feels that way, too, let me know. Because believe me, it’s the change in routine that leaves me behind.