“How many timesdo I have to tellyou?!”
Us people with autism hear that all the time. Me, I’m always being told off for doing the same old things. It may look as if we’re being bad out of naughtiness, but honestly, we’re not. When we’re being told off, we feel terrible that yet again we’ve done what we’ve been told not to. But when the chance comes once more, we’ve pretty much forgotten about the last time and we just get carried away yet again. It’s as if something that isn’t us is urging us on.
You must be thinking: “Is he nevergoing to learn?” We know we’re making you sad and upset, but it’s as if we don’t have any say in it, I’m afraid, and that’s the way it is. But please, whatever you do, don’t give up on us. We need your help.
Q6 Do you find childish language easier to understand?
Children with autism are also growing and developing every single day, yet we are forever being treated like babies. I guess this is because we seem to act younger than our true age, but whenever anyone treats me as if I’m still a toddler, it really hacks me off. I don’t know whether people think I’ll understand baby-language better, or whether they think I just prefer being spoken to in that way.
I’m not asking you to deliberately use difficult language when you talk to people with autism—just that you treat us as we are, according to our age. Every single time I’m talked down to, I end up feeling utterly miserable—as if I’m being given zero chance of a decent future.
True compassion is about not bruising the other person’s self-respect. That’s what I think, anyway.
Q7 Why do you speak in that peculiar way?
Sometimes, people with autism speak with a strange intonation, or use language in a different way. Non-autistic people can sort out what they want to say in real time, while they’re having their conversation. But in our case, the words we want to say and the words we cansay don’t always match that well. Which is why our speech can sound a bit odd, I guess. When there’s a gap between what I’m thinking and what I’m saying, it’s because the words coming out of my mouth are the only ones I can access at that time. These words are either available because I’m always using them or because they left a lasting impression on me at some point in the past.
Some of you may think we read aloud with a strange intonation, too. This is because we can’t read the story and imagine the story at the same time. Just the act of reading costs us a lot of effort—sorting out the words and somehow voicing them is already a very tall order.
More practice will help, however. Please never laugh at us, even when we’re doing a less than great job.
Q8 Why do you take ages to answer questions?
You normal people, you talk at an incredible speed. Between thinking something in your head and saying it takes you just a split second. To us, that’s like magic!
So is there something wrong with the circuitry in our brains? Life’s been tough for people with autism, pretty much forever, yet nobody’s really been able to identify the causes of autism. For sure, it takes us ages to respond to what the other person has just said. The reason we need so much time isn’t necessarily because we haven’t understood, but because by the time it’s our turn to speak, the reply we wanted to make has often upped and vanished from our heads.
I don’t know if this is making a whole lot of sense to you. Once our reply has disappeared, we can never get it back again. What did he say again? How was I going to answer her question?… Search me! And all the while, we’re being bombarded by yet more questions. I end up thinking, This is just hopeless. It’s as if I’m drowning in a flood of words.
Q9 Should we listen to every single word you say?
Making sounds with your mouth isn’t the same thing as communication, right? Lots of people can’t get their heads fully around this, I think. Isn’t there a belief out there that if a person is using verbal language, it follows that the person is saying what they want to say? It’s thanks to this belief that those of us with autism get even more locked up inside ourselves.
Just because some of us can make sounds or utter words, it doesn’t follow automatically that what we’ve said is really what we wanted to say. Even with straightforward “Yes” or “No” questions, we make mistakes. It happens all the time to me that the other person misunderstands or misinterprets what I’ve just said.
Because I’m barely able to hold a conversation, fixing what’s gone wrong is beyond my powers. Every time this happens, I end up hating myself for being so useless and clamming up. Please don’t assume that every single word we say is what we intended. This makes communication between us difficult, I know—we can’t even use gestures—but we really badly want you to understand what’s going on inside our hearts and minds. And basically, my feelings are pretty much the same as yours.
Q10 Why can’t you have a proper conversation?
For a long time I’ve been wondering why us people with autism can’t talk properly. I can never say what I really want to. Instead, verbal junk that hasn’t got anything to do with anything comes pouring out of my mouth. This used to get me down badly, and I couldn’t help envying all those people who speak without even trying. Our feelings are the same as everyone else’s, but we can’t find a way to express them.
We don’t even have proper control over our own bodies. Both staying still and moving when we’re told to are tricky—it’s as if we’re remote-controlling a faulty robot. On top of this, we’re always getting told off, and we can’t even explain ourselves. I used to feel abandoned by the whole world.
Please don’t judge us from the outside only. I don’t know why we can’t talk properly. But it’s not that we won’t talk—it’s that we can’t talk and we’re suffering because of it. All on our own, there’s nothing we can do about this problem, and there were times when I used to wonder why Non-Speaking Me had ever been born. But having started with text communication, now I’m able to express myself via the alphabet grid and a computer, and being able to share what I think allows me to understand that I, too, exist in this world as a human being.
Can you imagine how your life would be if you couldn’t talk?
The Mystery of the Missing Words
Us kids with autism, we never use enough words, and it’s these missing words that can cause all the trouble. In this example, three friends are talking about their classmate who has autism:
“Hey, she just said, ‘All of us’!”
“So … that must mean she wants to join in with us, yeah?”
“Dunno. Maybe she wants to know if we’re all doing it.”
In fact, the autistic girl’s ‘all of us’ came from something the teacher had said earlier on in the day: “Tomorrow, all of us are going to the park.” What the girl wanted to find out was whenthey were going. She tried to do this by repeating the only words she could use, “all of us.” Here you can see how our missing words tweak your imaginations and send you off on wild-goose chases, here, there and everywhere.