Yesterday was the first day in a long, long time that I finished reading a book in one sitting. Well, two sittings. Yes, the children ate junk food and the laundry got left in the washer for, ahem, six hours. But hey, you only have so many life changing moments. So this book is titled “The Reason I Jump” and is written by a 13 year old autistic boy who has very limited communication ability. He ‘wrote’ a book using a software that he had been trained to use to communicate. This book is a glimpse into a very rarely understood world and so many of Aiden’s habits and personality traits now have a clear cut reason to them. I’ll give a few examples of how this book has helped me better understand my son.
Why does Aiden wave goodbye with his hand pointed inwards? Why does he jump when he is very happy or very upset? Why does he often use other’s hands as ‘tools’? Why does he find it so hard to pedal a bike, hold a pencil, draw a picture, catch a ball? The answer: a very poor awareness of his own body and very poor control over how his own hands and feet work. I just never knew that Aiden doesn’t trust his own hands to open a door and needs to use other’s for this. He’s effectively waving to himself because he’s mimicking what he sees. He needs to jump because it helps him deal with the excess of emotion that is threatening to overwhelm him.
Why can’t Aiden make eye contact when he’s being spoken too? Because he is so intent on making sense of the words that are being spoken that any other stimulation (liking looking the speaker in the eye) will be too much distraction. The author describes the need to feel the sound coming out of another person in order to comprehend the words. He describes how quickly words escape him once he’s heard them and how difficult they are to find when he wants to formulate a reply. And therefore, this need to resort to stock, oft repeated phrases because they provide the comfort of predictability.
Why does Aiden suddenly bolt? It’s not because he’s a naughty boy who cannot understand that this is not something we do, who wants to deliberately provoke anger, who wants to make his adult’s life difficult. It’s because he has seen something that has so captured his attention that he must drop everything else and go and explore this phenomenon. Which, for you and me, may be nothing more thrilling that a pinecone.
There were so many other questions that I found answers for in this book. But I also came across something that made me very very sad: a constant theme of self-loathing, shame, and doubt. Again and again this child is asking for love and patience. He acknowledges that his meltdowns, his seeming defiance, his habit of repeating the same maladaptive behaviours, are all giving his carers grief. That grief fills him with self loathing but he cannot help the compulsions that are causing the behaviour. He is constantly reaching out for forgiveness and love but without having the words to say sorry. He is again and again asking for patience because our anger hurts him and shakes his belief in our capacity to love him. He tells us that he needs for us to be consistent with the boundaries and for us to enforce the rules over and over. Because, even if it takes years, there will come a time when he will be better able to manage his reactions.
I must recommend this book to everyone whose life has in any way been touched by autism. I’ve just ordered three copies for family! If you cannot find it in your local bookstore or online let me know and I am happy to send one off to you. I will ask that we all make an effort not to talk about autistic individuals in front of them like they are a piece of furniture. I have long known that though Aiden shows no recognition of what is being said, he understands everything. This book has confirmed this suspicion. Imagine not having the words to let others know that you are hurting their feelings. Imagine being a fully formed functional human with complex thoughts and emotions and being treated like a broken toy that needs only managing. Imagine being subjected to this treatment all your life and you too will want to give up on forming any meaningful human relations.