Out of all the things I have read on Autism, the one that has mirrored me the MOST is The Reason I Jump: The Inner Voice of a Thirteen year old boy, by Naoki Higashida. I have not gotten very far in the book, but I have to say that I have NEVER read anything that is exactly like me!! I mean, I read Temple Grandin and I’m like yea that fits that fits. But I have to say I could have written this book. The hardest things I have ever had to deal with is communication. One of my favorite things to do when I was a kid was do theater. The reason was, I had a script. I knew what to say, when. I didnt have to try to figure out what to say. The words were given to me. Conversations are THE most draining for me. I often times feel like I’ve run a marathon after a five minute conversation. Just trying to keep up. It feels like the people I’m talking to have had a head start and I’m trying to catch up the entire race. When we are all done, I’m not sure I even understood all of it. The biggest obstacle is to get the words out and hopefully the other person did not get that I struggled through every word.
Here are Naoki’s words. as soon as I try to speak with someone, my words just vanish. Sure sometimes I manage a few words…but even these can come out the complete opposite of what I want to say! I can’t respond appropriately when I’m told to do something, and whenever I get nervous I run off from wherever I happen to be. So even a straightforward activity like shopping can be really challenging if I’m tackling it on my own.
I have always wanted to communicate. I think that is one of the most basic needs of any human being. It is one of THE hardest things for someone with Autism to do.
Not being able to talk means not being able to share what you’re feeling and thinking. It’s like being a doll spending your whole life in isolation without dreams and without hopes. Sure, it took a long time before I could finally start communicating via written text on my own, but on that first day when my mom supported my writing hand in hers, I began to acquire a new way of interacting with others.
Just like Naoki, I figured out ways to communicate. I drew. I wrote. I would write in poetry and in notes to people all the time so they could understand what I was trying to say. I work at school for kids with Autism and there is a child we met who learned the alphabet in sign language, on his own, so he could communicate.
That is SMART! People with Autism are SMART. We are in there even though we do might appear that we are not. People talk around me. I have been around people that completely ignore me because I am quiet and they converse as if I’m not there. I have to admit, if there are a lot of people in a room and many people talking, the chance of me figuring out how to jump in, is pretty slim. BUT if someone gets me one-on-one, I will talk.
I ‘gap’ talk. What that means, is there are a lot of gaps in between my words at times. I know people with Autism who have gaps IN a word. It’s just processing.
The words we want to say and the words we can say 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.(Naoki)
When I try to speak, there are so many words that go through my mind at the same time. Most of the time, I get out the most simplest way of saying it, even though my mind said it completely different! It is so frustrating.
Naoki states, 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. Once our reply has disappeared, we can never get it back again. What did he say again? How as I going to answer his question? 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.
WORDS is the most complex thing invented. They come in hundreds of languages and there are millions of them. There are slang words and made-up words and they all have their own meanings. The same word spelled exactly the same way, can have two different meanings. It is sooo complex.
Having Autism in an NT world of words. Ugh! But we are trying. it’s just exhausting at times. Just work with us. We are trying to communicate.