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.
Being an autist – actually, just being human – has ups and downs. And a lot of those times, it’s about good days and bad days. The question is, what triggers it?
For me, it’s energy level. A lot of those so-called people who can’t feel empathy feel a lot more than you do. And you know what? Emotional energy is something that many of us in the autistic community have a limited supply of. Just like how we can’t handle a whirlwind week of social engagements every night, we also can’t handle people crying all over us every few days. Give us some time to recharge! We’re like laptops, cell phones, iPads and every other electronic handheld nowadays.
And that’s what leads us to our bad days. It’s the days when we have our emotional energy depleted. So what can we do that day? We tend to go back to being more like children, thinking about ourselves first and not remembering how to think about how we might affect others. How many times has a drained person on the spectrum heard “Be normal”?
And more importantly, how does it feel to hear that? Does it hurt? Or does it recharge you? Well, for me, it actually drains my energy even further. I’m sorry, but expecting me to be neurotypical when I literally can’t be and expecting a command as such not to hurt me is really, really terrible, especially when the patience I’m running out of causes me to ask how to clean a car impolitely, because I had offered to clean it – it might not be a nice thing to say, but it was because I needed it to do a nice thing.
And that’s what emotional draining does to someone in the autistic community. It completely depletes any chance of masking, being nice when you don’t feel nice, and returns a person to the age where masking was impossible. It’s back to the behaviours you all associate with autism – routine, rules and complete and utter honesty without thinking.
And I guess that’s what I want people to understand. I’m sorry if it hurts, but it hurts more if you won’t understand it, and I don’t mean make allowances. Just be aware that it’s coming up, warn me if you see any signs instead of just getting cross, and then I can monitor myself and make sure I keep myself calm and rested so I can recharge on my own time. See you when I’m ready to take on all your emotional baggage once more!
Every week, I try to find a different angle to talk about the autism spectrum and how it can make life harder, or sometimes easier. This week, I’m going to ask YOU to give me a bit of material.
You’ve read my musings on autism. You know how I feel about my diagnosis and how I relate to others on the spectrum. Now, it’s time for me to stop talking about my own experiences and find out from both the inside, and the outside, what autism looks like.
So, if you’re reading this, I’m going to give you just five questions to think about. You don’t have to reply with your answers, but if you’d like to, it would really help me make a start on a new project I’m starting to do with autism acceptance, understanding, and most of all, how it works as a spectrum.
- What do you think of when you hear the word “autism”? (What images come to your head?)
- What was your first experience with hearing of the condition and what it meant?
- What traits do you associate with someone on the “mild” end of the spectrum?
- What traits do you associate with someone on the “severe” end of the spectrum?
- What kind of therapy do you think should be made more available to everyone on the spectrum (children and adults)?
My project will be getting opinions from the outside, from strangers who don’t know me or might not have any idea what autism is or looks like. My attention is to learn which myths of autism are most widespread, whether people view it as an illness, what kind of support people with autism are getting, what they need more support in, and how to help the general public get a real view, and accept that those who are able to become somewhat independent deserve a chance to support themselves.
One more note to think about while writing your answers, or just thinking about them: Research has shown that about 50% of people on the spectrum have average or above-average intelligence. I know there are some people on the spectrum who will always need to be cared for. But I know a lot of very intelligent people on the spectrum, and many of them, including me, would feel patronized and insulted by the idea of not being allowed to be independent.
When you’re a child writing a piece in school and you’re asked to check your spellings, where do you go? To a dictionary. When you’re reading and you come across a word you don’t understand, where do you go? To a dictionary (probably an online one). When you are on the autistic spectrum and you don’t understand something someone said, where do you go? To the…oh wait, there’s no dictionary for it. You know the words, and who cares if you can spell them or not? But you still don’t understand it, and you have to guess at the meaning. And if you get it wrong, it’s just too bad for you.
I know that something I wish for is a little guidebook for those in the autistic community. Everyone says that autism is like landing on a planet where everything is mostly the same as their own planet, but everything is just a little off-centre – voices are louder, colours are brighter, and the language seems to have a hidden component. And of course, the scientists that sent you to this new planet didn’t pack a guidebook. Well, that’s why someone needs to write that guidebook. Sections on tonal shift, body language, common expressions and expectations would do wonders for the majority of the community, especially those that are trying desperately to mask and their failures are detrimental to their chances of success. Especially if it had a section on what people expect of autists and how to prove that they’ve got it all wrong.
Obviously, I know a guidebook like this would not fit every autist. But I have a feeling that if it covered enough things, many people on the mild and moderate areas of the spectrum would have a much easier time. Maybe the severely affected people would be unable to put these into practice. But plenty of perfectly intelligent, talented and kind people have been ostracized for being on the spectrum, and that’s not fair. What do you do if you want to cook a casserole and you don’t know how? You use a recipe. If someone with autism wants to appear like everyone else and they don’t know how? They don’t have anything to use and they can’t do it. It just stands to reason that they ought to have the chance to find that information, just like you can find a recipe.
There are some books on this. Author Jennifer Cook O’Toole has written a series of “Asperkids” books to help the children with autism. But adults with autism still need a little guidance as they grow. We need these books out! And maybe, if someone cares enough to read this book, gather information from people both with and without autism, what they need to know, what they know already. Then maybe, just maybe, we’ll have a guidebook coming to us.
It was a few months ago that I read the claim that current president Donald Trump made that vaccines cause autism and we must find a cure for these “sick” people. Well, fine, vaccines also cause bigotry and we must find a cure for the States’ “sick” president. Autism is not an illness. It does not have a cure. And as I mentioned last week, vaccines are no more capable of causing autism than lightbulbs are of causing a melanoma. The question is, how can the autistic community speak up for themselves in light of those medieval (or medi-evil) people in power? Well, I’m not going to write directly to Trump and have him invite me to live in America so I can be arrested for slander. I’ll just write the letter – what I would write here:
Dear Mr President,
I am going to start by saying I am not an American citizen, nor have I ever been. With your country being divided by political beliefs go, however, it has been impossible to not see you on the television in New Zealand most nights, stating your opinions. One of your opinions that, in all honesty, concerned me, was the idea that ASD (Autism Spectrum Disorder) was an illness caused by vaccines that needed curing.
Please do not take this the wrong way. I do not disrespect you and the good people who have tried to prove this. But it is fruitless to try. As an autistic individual who has kept a steady job tutoring through an agency and teaching a young woman with an intellectual disability to cook safely and efficiently, I feel that you are underestimating many of the people on the spectrum. You may know of the franchise Pokemon, created by Satoshi Tajiri. He is one of the most successful people in the world, and he is on the spectrum. In fact, some people would say that he could not have created this international success if he wasn’t. Would you really want him to be “cured” so he would stop creating?
Another point to be made: One of your predecessors, President Thomas Jefferson who wrote the Declaration of Independence in 1776, was speculated to be on the spectrum. He was born before vaccines were invented, and he had autism from birth. So that, as far as I am concerned, prove that vaccines, in fact, did not cause autism in many cases. I know many children who have been vaccinated, and none of them developed any quirks that made little sense after being vaccinated. It’s true that vaccinations in the past have been dangerous, but the ones today are proved safe, with no permanent side effects.
I hope you will not think ill of me or my judgement, just because of my being unafraid to admit that I am on the spectrum. I very much intend to just inform, and not insult.
(Insert signature here)
Ever met that person that insists they’re right no matter how many things happen to show they’re wrong? Like how The Lion King is based on Hamlet but no matter how many YouTubers say it they won’t believe it – they think it’s wrong unless they hear it from a Disney executive? Well, if you give evidence to me, I’ll change my mind. I don’t know if other autists feel that way, but one of the traits of autism is to accept logical explanations. And if I’m given evidence to something I disbelieved once, I’ll start to believe it.
But you know who won’t believe it? Anti-vaxxers. Someone asked on Quora who still believes that vaccines cause autism. Someone answered that it was “everyone who is sane.” My request to them was not to change their minds. I knew that was a lost cause. My request was that they not call everyone who didn’t believe it insane. They came back with abuse and insistence that I must be wrong, even though I hadn’t said I didn’t believe it.
Afterwards, they actually forced me to give evidence about people who had been autistic before vaccines were invented, like Mozart for example. I don’t think this person believed it could be possible. But even if Mozart wasn’t autistic, that doesn’t mean Thomas Jefferson wasn’t, and he was already pretty old by the time the smallpox vaccine was invented. However, because they couldn’t reciprocate and name anyone who became autistic after being vaccinated, they couldn’t very well support their argument. They did not reply to this, but I got the feeling their answer was “Just because I can’t argue with that doesn’t mean you’re right, and you are still crazy”. And I never wanted to argue anyway – I just wanted them to respect opposing opinions the way I do, even if they don’t agree with them.
Anti-vaxxers are ruining the autistic community’s reputation. If autism came from an outside influence, then it could be taken away by an outside influence, and so even if they don’t mean to, they are influencing those who think there should be a cure. That belief is damaging to everyone on the spectrum. Autism is partly genetic, but more research needs to be done to discover other causes, why it’s a spectrum, and why so many people are placed in different areas on that spectrum when their brains show similar differences in them to the neurotypical brain (one of those being a lack of pruned synapses – that’s what makes us more sensitive to some things). Once the community accepts that autism is just a brain difference that can’t be changed by vaccines or whatever the opposite is, maybe the community will finally give autism a wider voice, and maybe, just maybe, we’ll find new innovative ways of managing the difficulties that come with it and ways of cultivating the positives.
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.