By Kodey Toney
One is the Loneliest Number
I’ve often said that I would really like to get into Konner’s head just once. I wish that I could have a little bit of an idea what is going on inside his head. I also talked about a book recently that I was reading titled “The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism” by Naoki Higashida, translated by David Mitchell. This truly is eye-opening. It gives you a small insight into what it is like to live day-to-day with autism.
Keep in mind once you’ve met one child with autism you’ve met one child with autism, but I think many of these things are probably pretty universal. No child is going to be same, but the things they are feeling are probably pretty constant.
I’m going to share a little from the book that I thought was interesting. I’m also going to try and relate Konner’s issues.
In one of the first sections of the book Naoki addresses the fact that most people thing those with autism prefer to be loners. He explains that “he values the company of other people very much, but because communication is so fraught with problems, a person with autism tends to end up alone in a corner, where people then see him or her and think, ‘Aha, classic sign of autism.’”
I’ve witnessed Konner many times walk over to somebody or some kid and I can tell that he wants to talk to them or play with them. He usually ends up just standing there watching, or talking about things like trains. In fact right now he is in my ear talking about trains, Edward, tenders, and track gauges. This is something that not many children his age are interested in listening to for long periods of time, but it’s what he knows and feels comfortable about.
I found it interesting that In Japan they use three characters for the word “autism”. They stand for “self,” “shut,” and “illness.” This makes it seem as if a child with autism is sick and shut-off from the world or within themselves. This couldn’t be farther from the truth. Autism is not an illness, though many people want to “fix” those on the spectrum. They are also only “shut-off” if they can’t find a way to communicate. We have to find ways to help them open up.
There is usually this misconception too that children with autism don’t feel sympathy or empathy. Naoki said that this is not true. In fact, often he is conflicted with the feeling that he is a burden to his family. He states, “If autism was regarded simply as a personality type, things would be so much easier and happier for us than they are now. For sure, there are bad times when we cause a lot of hassle for other people, but what we really want is to be able to look toward a brighter future.”
I can tell when I really get upset with Konner that is affects him. He will come to me sometimes with tears in his eyes and let me know that I hurt his feelings. Now I know that he feels these things, and that I should be more aware of getting upset with him. However, the common myth is that this is not possible. Be careful of what you say around your child with autism. Even if they are non-verbal they can hear you and understand.
Naoki addresses the question: Why do people with autism talk so loudly and weirdly? There was a Will Farrell skit on Saturday Night Live once where his character had Voice Modulation Syndrome. He couldn’t control the volume of his voice. This is what living with Konner is like. At times he talks so softly that you can’t understand him, and there are other times when he seems so loud you can’t hear yourself think. He does this without even knowing there is a problem. Naoki said, “People often tell me that when I’m talking to myself my voice is really loud…this is one of those things I can’t control. It really gets me down. Why can’t I fix it?” He goes on to explain that the sound of his own voice is comforting, but the voice he can’t control is different. “It’s more like a reflex,” he explains. “It’s almost impossible to hold it back, and if I try it actually hurts, almost as if I’m strangling my own throat. I want to be nice and calm and quiet…(I) simply don’t know how.”
Keep in mind this is coming from a child who is virtually non-verbal, and has found a way to communicate through writing.
All of this is just in the first section of the book. I hope to bring more insight to you in the future.