I found it difficult to decide how to begin this post. I decided rather than having my husband and I introduce autism in this opening paragraph, I’d instead let the autistic author of “The Reason I Jump” Naoki Higashida do so with a few of our favorite quotes.
“When you see an object, it seems that you see it as an entire thing first, and only afterwards do its details follow on. But for people with autism, the details jump straight out at us first of all, and then only gradually, detail by detail, does the whole image float up into focus.
Every single thing has its own unique beauty. People with autism get to cherish this beauty, as if it’s a kind of blessing given to us.” ― Naoki Higashida
“I think that people with autism are born outside the regime of civilization. Sure, this is just my own made-up theory, but I think that, as a result of all the killings in the world and the selfish planet-wrecking that humanity has committed, a deep sense of crisis exists. Autism has somehow arisen out of this. Although people with autism look like other people physically, we are in fact very different in many ways. We are more like travelers from the distant, distant past. And if, by our being here, we could help the people of the world remember what truly matters for the Earth, that would give us a quiet pleasure.” ― Naoki Higashida
Our journey begins…
When we got our son’s diagnosis for the first time he was just a small boy of 3 years. We were living in Okinawa, Japan, as my husband was stationed there working as an IT in the Navy. We didn’t really take his diagnosis very seriously, we told ourselves, “Oh he is just developing a little later than most kids, no big deal”.
We moved our little family to Wisconsin and put him into early childhood so he could get the attention and therapy he needed. His learning was slower than typical, and no form of language seemed to interest him. After some time of intensive home therapy, on top of early childhood education, the realization that our son may never speak began to sink in. His potential for living an independent life was diminishing. Despite the very real possibility that he won’t ever utter the words “mom” or “dad”, we will be there with him and for him.
Telling him that we love him can’t stop the meltdowns… oh the meltdowns! A meltdown is a physiological fight or flight response where the body is reacting as it would in a life or death situation. He would bang his head on the floor, pull his hair out or pound his head until it had a permanent bruise on the center of his forehead. During moments of miscommunication or misunderstanding our son would become extremely frustrated with us and attack us by biting, pinching, hitting or head butting. During the worst of his episodes he would withdraw into what seemed like another plane of existence, a waking nightmare full of screaming and tears that ends not with a startling jolt but with a disconnected stare into nothingness. Our parental love couldn’t break through his experience, and we could not bring his attention back to our shared reality.
I started hearing comments like, “Don’t let him spin like that he’ll be that weird kid in class!” “Don’t let him eat with his hands he’ll be that weird kid in class!” “Maybe he just needs to be disciplined!” “Maybe if you don’t feed him other options ‘cause he’s not eating his meals, he’ll get so hungry he’ll eat his meals.”
These comments made me very frustrated, and I knew just looking at him that the joy I saw when he was spinning, jumping, rocking, clapping was REAL! Why would I wanna stop these things that bring genuine happiness to my boy?
We tried teaching him to use utensils but he never liked the feel of them so he currently uses plastic training chopsticks which are his utensil of choice (behind his hands, of course). His diet was very odd because everything was about texture for him. He wanted tiny uniformly cut pieces of food separated into individual compartments. He mostly just ate fried chicken and broth with no chunks and had no interest in new foods that even ice cream was weird to him. When all these things started happening, I felt the true realization of our situation starting to settle in. We scoured the internet for useful information but despite the abundance of theories out there the only thing we found consistently is that what works for one Autistic child may not very well work for another.
I finally fell upon some videos made by a woman named Amythest Schaber, called ‘Ask An Autistic’. These short explanatory videos changed the way I looked at Autism. Until this point I had been focused on adjusting our son to fit into the external social world. We felt pressured to teach him to “pass” as a neurotypical person even though he is not. This is a boy who expresses his emotions with his whole body rather than just his face and words. He is not broken, but his daily experience is so drastically different than mine that it is no wonder he and others like him are misunderstood.
They have a difficult time controlling their body movements. Some autistic people have such a vast imagination that they have a hard time knowing which reality is real and can get easily distracted and walk into streets, cars and people without even knowing what happened.
They can be easily overstimulated which can incapacitate them and trigger meltdowns.
After particularly extreme experiences they may experience temporary burnouts. These periods of regression and withdrawal may happen after a difficult experience like overstimulation or inconsistencies in an otherwise predictable routine.
Physical and vocal/verbal stimming is a way for them to block out the sensory overload that they are experiencing and helps them self-regulate. Stimming can be hand flapping, jumping, spinning, shaking one’s head back and forth very fast, rocking, humming, making loud noises, or repeating the same word over and over again. Of course, to the neurotypical person my child smiling and flapping his hands back and forth is a strange sight. In the past people may have tried to stop this behavior, but it is a coping mechanism that maintains his ability to coexist with us.
I realized how many people have it wrong, forcing children with autism to stop stimming to pass as normal. I was ignorant and I needed to learn to understand my child better. I had known that he was not average, but I was beginning to understand that that could mean all sorts of things. Average was not a benchmark anymore. Average is a narrow band, and there is so much room to grow above or below it. When he was just 11 months old I remember him organizing little mini chocolates on his food tray by color. My husband and I were pretty stoked about this, and our son, of course, had zero interest in actually eating the chocolates. He would lay on the floor and line all his cars up in a perfect line, and if you moved one he always knew. He could leave the room and all his toys on the floor but if you moved one out of place he would know.
He used to flip the light switch on and off, and on and off, and on and off again. We thought it was just a weird tick but one day when watching the movie ‘Thinking In Pictures’(a movie about the famous Temple Grandin, a professor in animal science, and her journey through life living on the spectrum) it finally hit me; Jun wasn’t just having a tick turning that light switch on and off, and on and off again. He was observing the light turning on and the connection to the switch, he wanted to understand how this magical thing worked, so he would then flip the switch on and off and on and off again.
After realizing that my son was actually just a tiny little professor trapped in a body he couldn’t communicate with or control well, I began to observe the things he would do in a different way. I started researching the things he was doing and why. I started understanding him better. There was a cause and effect for most actions, meltdowns, or ticks that would come up. His brain was processing information and was looking at things on a whole different level than the average person, but it was also beautiful and fascinating to get to watch and learn. Just as we appreciate differing opinions, we also must learn to embrace different ways of thinking and experiencing.
In closing I’d also like to end with a few words from Mr. Higashida.
You must be thinking: “Is he never going 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. ― Naoki Higashida
“But I ask you, those of you who are with us all day, not to stress yourselves out because of us. When you do this, it feels as if you’re denying any value at all that our lives may have–and that saps the spirit we need to soldier on. The hardest ordeal for us is the idea that we are causing grief for other people. We can put up with our own hardships okay, but the thought that our lives are the source of other people’s unhappiness, that’s plain unbearable.” ― Naoki Higashida