A couple months ago, I wrote an article about how resourceful other autism parents have been for me. Ever since my son Julian was diagnosed, most of my information and guidance has come from parents, not doctors or therapists.
In fact, the doctors I’ve seen have been the least helpful of all in terms of answering questions I have regarding autism. If it weren’t for other parents, I would be completely lost.
When I wrote that article, an autistic woman left a comment. (I use the word autistic because that’s how she referred to herself.) She wrote:
“If autism parents are your only source of information, you’re doing it wrong. #actuallyautistic”
Her comment bothered me in two ways – Firstly because she didn’t subscribe to my blog, so I couldn’t reply. I would’ve loved the opportunity to follow up with a question. I’m thirsty for knowledge and her statement confused me.
The second reason it bothered me, and actually made me a little hot, was the fact that this woman could type. She could read. She could obviously process my article, feel a certain way about it, and send me a snide remark about how stupid I was.
What could someone like her teach me about my child? Julian doesn’t talk. He doesn’t respond to most of my words. And the doctors assume he has a severe cognitive delay. (They can only assume that because he isn’t able to perform their tests.)
Fast forward to a couple weeks ago. I read an article in The Guardian by a man named David Mitchell. He wrote a piece about his own journey through the spectrum with his severely autistic son.
In his article, Mitchell referenced a book that was written by a boy in Japan. Mitchell actually helped to translate the book to English so more people could read it. The book is called, The Reason I Jump.
Before I begin, this is not an official review of the book, nor is it sponsored in any way. I’m simply a mom who thinks sharing is caring.
The Reason I Jump blew my mind! It changed my perception of autism in so many ways. Naoki Higashida, who was 13 at the time he wrote it, is almost completely nonverbal just like my son.
For the most part, the book has a simple Q&A format. Naoki is asked questions like, “Why are your sleep patterns messed up?” and “Why do you wander off?”
Naoki answered these questions in detail, with a spirit of simplicity and sincerity and that only a child could express. He talked about his body and his mind in a way that made sense to me.
He didn’t use abstract phrases like sensory input or stimming. Instead, he referred to his own senses and feelings.I could actually visualize what Naoki was saying, and relate it to my own child’s autism.
I often wonder why Julian does certain things… or if there is any reasoning at all. This book restored my faith that there are reasons for his actions. And it reminded me to be more patient and understanding.
Of course every individual is different, so not all of Naoki’s answers lined up perfectly with my own kid. But that’s not the point.
The point is Naoki has an answer. He has a reason for the things he does. And even though he struggles greatly to communicate, he definitely has something to say. We just have to do a better job listening.
Every parent will have their own “take aways” from reading this book. Here are 3 of mine:
1. I need to treat my child with more respect. In that, I mean respect for his feelings, his meltdowns, his fears, and his anxieties. I need to do a better job explaining situations to him, instead of dismissing his reactions and hurrying him along.
2. I need to have higher expectations. Even though he can’t talk, I should assume that he has a better understanding than he can currently demonstrate to me. I already know he’s smart. I need to relay that knowledge back to him.
3. I can’t give up. (Not that I ever would.) No, he can’t talk yet. He may never be able to talk. But I need to provide more opportunities for him to communicate. I can’t give up because the past 10 methods didn’t work out. I just need to move on to the 11th.
I’m not sure why this book wasn’t shoved in my face 8 months ago when Julian was first diagnosed with autism. Maybe it’s because it was written over 10 years ago, and the hype has worn off. Or maybe it was on a list somewhere in that pile of paperwork I’ve collected.
I now understand what that woman was trying to say on my previous article. I’ve learned more from Naoki than I could’ve ever imagined learning from a nonverbal 13 year old.
It would’ve been nice if she’d explained herself a bit more, but whatever. I’m currently on the hunt for more books written by #actuallyautistic authors. Leave a comment if you have any suggestions.