It’s A Mood Swing

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.

Tonal Whiplash

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 Think My Stomach Ate My Routine

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?

Time Difference, Routine Difference

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.

Melt Down To Freeze Up

It’s a fact of life. We all have meltdowns, we all have shutdowns. That’s not a trait of autism, it’s a fact of life. It’s just that research shows that it is notably more common in individuals with autism. My theory is that the reason more meltdowns and shutdowns occur in people with autism are because…well, our senses are less able to handle a certain amount of stimuli.

Meltdowns can often be mistaken for tantrums, especially in younger children, There are no set occurrences for meltdowns. Some can involve screaming and violence, including attacking themselves. Others can be just silent tears and an inability to get out of it until removed from the situation. While tantrums ask for attention and not giving it is the best way to make tantrums stop, there is no way to modify behaviour from a meltdown, except to keep the stimuli causing it away from the person. Not an easy thing to do. Often, once the stimuli is removed, a meltdown will eventually be over.

A shutdown is different. While a meltdown is an external reaction, you might not even notice a shutdown at first. A shutdown is when the person just stops reacting. They often won’t talk or respond. I don’t know if they always take in what’s going on, but it takes a while for them to start responding. A friend of mine had this happen to her a while ago, and last time I messaged her, she told me she’d only just started to talk and write again.

Why is it important to look at shutdowns and meltdowns in the context of autism? Well, because what causes them can be completely alien to a neurotypical. And if a younger child has this happen, they might be mistaken for throwing tantrums or sulking, which can prompt grave mishandling of the situation that damages the child, giving them the label of being a troublemaker and denting their self-esteem. If you know what it is, though, you can act quickly, checking for a cause. However, if you really come across an adult meltdown, like the last time I had one, just remember: It’s probably not over two gutter balls in a game of tenpin bowling. Sometimes, one little thing can set off the meltdown that was over several bigger things.

We Don’t Live In An Autistic World

I don’t know how many of my readers have autism. But I do know a number of you are clinically neurotypical. A good number of neurotypicals may have autistic traits, but that doesn’t make you “a little bit autistic”. It’s perfectly normal to hate sirens, fidget a bit or question why people find the weather such an interesting talking point (yes, I know it’s sunny, there’s a window right there). But what if…you woke up one day and most of the world was turned off by YOU, thinking you were weird and you only found a select few people who understood the way your mind worked?

That is a question that has been asked on Quora, multiple times: “What would the world be like if people on the spectrum were the majority?” What if autistic behaviour was just the normal behaviour? What if we defined the norm and neurotypicals were “weird” and had a clinical diagnosis? Well, that’s the question I’m going to try to answer.

First of all, I think the world would be a lot more honest. I’m not saying crime would lessen – it wouldn’t. There would probably be more passion crimes than ever, and assault and manslaughter. People with autism can get pretty over-emotional. But we’re also, typically, an honest group. We don’t like lies, avoidance or exaggeration. Don’t get me wrong – I can lie, and I’m sure others can, too, but if brutal honesty was normal, I doubt people with autism would try to learn how to lie. They just wouldn’t see a need for it. So most criminals would be caught and confess instantly. Crime itself might not rise or fall, but the crimes would be handled very differently.

And second, and most importantly, the world would be very inconvenient for neurotypicals. All possible sounds would be turned down or off, less people would feel the need to get married, schools would include more work on motor skills and incorporate more learning styles, and if anyone got bullied, it would be the neurotypicals.

That’s the thing – think about it. As an autistic in a neurotypical world, you are the different one, and you get picked on. If you were a neurotypical in an autistic world, it would be likely that you would be different and get picked on. A few of you may have made fun of someone who might well have been autistic. Or maybe you were a teacher and picked on a child who seemed somehow different. Well, just keep that in mind – in another world, if you were the different one, you’d be in their shoes. And even if, just once, if you are different in any way, you will experience that feeling. The feeling of being a neurotypical who was stuck in a world where autism was the norm.

Look Up, Look Down, Lightning All Around

I don’t know if other autists have this, but this is what happens – sometimes, I can zone out and have no idea of what’s surrounding me…but only at the worst possible times. Or when I’m bored – you know, what’s normal. On the other hand, there are other times when the sensory sensitivity takes over and I can’t block things out, even if I pull my covers over my head and shut my eyes tight.

This is what happened on Saturday night. Around nine thirty pm, there was a power cut. Now, power cuts aren’t so bad when it’s daytime and there’s light outside. So we have to cope without heaters, air con or lights for a while! Big deal. We’ve got plenty of ways to communicate or leave the house, and if the electricians don’t know it’s there, we can report it anytime. But at night, it’s just like everything goes black, and you STILL have to run around and turn off anything that might have been on before so if you go to bed and the power’s still off, you won’t leave anything running.

The power cut was not the problem. The power came back on again before midnight. Up until then, I could ignore everything that was happening, just like I talked about. I could block out what was going on, mostly. It was at three am that my senses really started to bother me.

I woke up to rain battering at the windows, lightning flashing and thunder literally crashing around. I didn’t mind the rain, I didn’t mind the thunder. Once I’d been woken up by them, I could get back to sleep. But the lightning was not so easy. I don’t like lightning in general, even during the day. But at least in the day, it’s still light. Even with the lights off, you can see what’s going on. In the dark, lightning lights up everything. EVERYTHING. You’re in a dark room, and then everything flashes white for a second. Imagine if you were trying to sleep and someone kept flashing a torch in your eyes. Even though I had the curtains drawn and the covers over my closed eyes, I could still see the light.

I don’t know if this is because of being very sensitive because of my autism, but it’s probably something that could be addressed. Nighttime lightning is one of the biggest annoyances I have, and possibly the only thing that annoys me through my sight, rather than any of my other senses. The question is, do I really need to buy a face mask, or would the lightning still intrude? And other autists, tell me, can you sleep during lightning storms?

Zero Tolerance, Like An Autist

So, we’ve talked a lot about the fact that these neurotypicals around us see fit to pick on a disabled person if they don’t know that person is disabled. A disgusting thing to do, right? So why is it that they find it easy? We don’t stand out from the crowd, we don’t look that different, and we keep quiet.

It’s always the quiet types that get picked on. This gives most people with autism the “shy” label, even though they’re usually not shy at all – many of them just like to be alone more. Or, they have a meltdown in front of everyone. At school, if this happens, no one will ever forget it. Kids in particular have the longest memories ever, and even if they do forget it, they’ve probably gotten so used to teasing that they’ll keep doing it anyway.

The other thing is that again, we feel things more deeply. Emotional and physical. That’s exactly what bullies look for – people who feel things hurt more than others, because that’s what they’re trying to cause. Never mind why they’re doing it, and whether making other people hurt does anything to help them – someone with autism is far less able to hide their feelings. That’s a part of autism.

And as for how to stop it? That’s an important part of any story about bullying. You have to stop it. And with autism, most authority figures will just shrug and say “Well, if they tried to fit in more, they wouldn’t get picked on. They’re asking for it.” In fact, a lot of adults will join in with the bullying, picking on an autistic person because they think the person is asking to be bullied. Not just at school. At university, at work, in social clubs. Is it any wonder people with autism need a lot of alone time? A friend of mine once told me that she was getting left out of a group at uni she was doing a project with because they just didn’t like her, even though she was doing most of the work. We have to stop that.

That’s why we mask. We don’t want to be picked on, but no one will help us unless we don’t look like victims. But the only other way to go is to get diagnosed. That way, people will realize we’re not asking to be bullied and we can’t help being the way we are. Well, we can, but we will finally be given support to stop being victims. Zero tolerance is a phrase tossed around in schools worldwide. But as a person with autism, I’m one of the people who will prove that we should all learn what it really means.

How Does It Feel?

Okay, let’s get the obvious out of the way. Yes, I am referencing the song of the same name by Avril Lavigne. There, done.

Anyway, the thing is, I’ve talked about senses and being extra-sensitive. But I haven’t talked about emotions. The thing is, if we’re so extra-sensitive to sounds, touch, light, etc, naturally that makes the autistic community sensitive to emotion, too. Oh, we’re not sensitive to other people’s emotion, although we can be sympathetic when we tune into it. But we are VERY sensitive to our own feelings, or when we confuse someone else’s feelings for our own, which happens often.

Have you ever cried in front of someone? Well, if you cry in front of me, you’ll be lucky if I don’t start crying too. You have given me a very clear sign of your state of emotions, and it hits me much harder than it would someone with a neurotypical brain. My brain takes signs like tears or laughter as a sign that I should be sad or laughing myself. I don’t know why it happens, but it’s common that an autistic or Asperger’s brain takes emotions they see, amplifies it, and insists that we must feel that same emotion.

But it’s not just other people’s emotions we feel. People think we don’t feel sympathy, but it’s more that we feel it too much. Our own emotions, though, hit just as hard if not harder than other people’s. Most people think saying “I’m sensitive” is an excuse for someone to expect to be treated with kid gloves. It’s not. When we say “I’m sensitive”, we mean, “Just ignore me if I get over-emotional, it’s just something that happens, it doesn’t mean anything.” Well, at least that’s what I mean when I say it. Sometimes I need a hug, but mostly I just want to be treated like nothing’s happening.

So, that’s something to think about. You can make as many school dances silent as you want. You can limit contact with strobe lights. But can you let us have some space to deal with our extra-sensitive emotions?

Say It With Style

Okay, well, everyone has their own style. Just yesterday, I bought burgundy, maroon and pale gold striped cords. But, I did not buy the blue and peach-pink striped ones, even though they were cheaper. Why?

Well, because they looked strange on me, partly. But also because they felt stiff on me. That might just be an “they’re in the store, they’ll stretch with you” thing. But they seemed to hang strangely. For the burgundy ones, yeah, they were a little tight, but they felt amazing.

What does this have to do with autism? Well, welcome back to the sensitivity to all five senses realm. We’ve missed you.

We all like comfortable clothes, don’t we? It’s important to feel good. But it’s harder for me, and countless others with that feature of autism, to find the clothes that make us feel good. Or, to put it another way, we find it more important to feel good than to look good than most people do.

For me, I don’t like wearing crop tops. It makes me feel too exposed. Same with all the short-leg, flared ankles style that everyone’s wearing now. I have two lovely pairs of jeans and some cute flowery overalls from my favourite store, and both of them are just a tiny bit too short for my liking. (The cords are also from my store, and I specifically asked for longer, figure-hugging pants). Maybe some people with autism are the same, but some are different. I know someone who may be autistic (has some traits), and he rarely wears long pants. Even in winter, he wears shorts. To contrast, a similar person I know dresses in some pretty formal clothes, like a green blazer. Sometimes, we look for comfort over practicality.

Of course, what makes me feel comfortable isn’t the same for all people. And yeah, I like to look good. I couldn’t buy the red and white check pants because even though they were VERY comfortable, I could not reconcile myself with that shade of red – it needed to be deeper. But even if something looks gorgeous on me and I like the way it looks, I won’t buy it unless I like the way it feels. Many a time I’ve said “I like it, but I’d never wear it.”

So – yeah, if you ever buy stuff and don’t wear it, maybe next time, try shopping with an autistic mindset. No matter how cute it looks on you, don’t buy it unless you know you’ll like the way it feels.