So I have started reading a lot of Autistic books. I have since found a remarkable list curated by the autistic community that can be found here:
I got interested in reading reliable autism information when suggested by actually autistic people. I have only been diagnosed this year, and I had spent a significant amount of time over the last three months doing a deep dive into autism but only from an academic research article perspective.
It was through this movie that I discovered the two books that I have read already. This is a short five minute film – but I really need you to watch it. Non speaking autistic people often face the worst stigmatisation. They need to be heard!
‘The Reason I Jump’ and ‘Fall Down 7 Times, Get Up 8’ by Naoki Higashida
I cried most of the way through this book. One of the main reasons was that I misunderstood so much about non speaking autistic people.
The other main reason was that Higashida was describing me, I might have verbal abilities, and I appear to have developed communication pathways – but his experiences, and the way his mind works is like reading about myself. I deeply related to this book on an extremely personal level.
The book is written mainly in question and answer format about how he would describe his Autism, or why he does the things he does that allistic people do not understand. His answers are extremely insightful. I learned a great deal about myself from reading this book.
The first book ‘The Reason I Jump’ he wrote at the age of 13.
Some key takeaways I didn’t realise were autistic things:
- I don’t have a memory that is sequential – it’s not like other people, it’s like a series of nodes of categorised nodes that my brain often tries to traverse usually at lightning fast speed.
- I have no concept of time. I get the general idea but I am quite often living in the past, present, and future all at the same time. To give an explanation of this – when I pet my cats – often I will be thinking of these things in the exact same moment – my past experiences with cats, the current sensation and feelings I have toward my cat, the sometimes overwhelming grief of knowing what will happen to them in the future. I quite often break down crying even though my cats are young. As I have no concept of when things occur – memories that are strong I recall with as much emotion as the time they happened – I cannot distinguish that the cat that I am petting now is young because I am also living in the future where the cat has already passed.
- I found out that laughing randomly or crying due to emotional recall when by yourself is not common in neurotypical people – this explains so many odd looks I’ve gotten over the years. My brain can be amazing at entertaining me. I do this all the time.
There were also experiences and phrases that I deeply related to – these from ‘The Reason I Jump’.
- “My brain is always sending me off on little missions, whether or not I want to do them. And if I don’t obey, then I have to fight a feeling of horror. Really, it’s like I’m being pushed over the brink into a kind of Hell.
For people with autism, living itself is a battle.”
- “Just by looking at nature, I feel as if I’m being swallowed up into it, and in that moment I get the sensation that my body’s now a speck, a speck from long before I was born, a speck that is melting into nature herself. This sensation is so amazing that I forget that I’m a human being, and one with special needs to boot.”
- “In the water it’s so quiet and I’m so free and happy there. Nobody hassles us in the water, and it’s as if we’ve got all the time in the world. Whether we stay in one place or whether we’re swimming about, when we’re in the water we can really be at one with the pulse of time.”
- “For us, one second is infinitely long – yet twenty-four hours can hurtle by in a flash. Time can only be fixed in our memories in the form of visual scenes. For this reason there’s not a lot of difference between one second and twenty-four hours. Exactly what the next moment has in store for us never stops being a big, big worry.”
This one answer to the question what’s the worst thing about having with autism hit home so hard – I’ve been told my whole life that I am a burden, by school, by media, by doctors, by science. It wears you down.
You never notice. Really, you have no idea quite how miserable we are. The people who are looking after us may say, ‘Minding these kids is really hard work, you know!’ but for us – who are always causing the problems and are useless at pretty much everything we try to do – you can’t begin to imagine how miserable and sad we get.
Whenever we’ve done something wrong, we get told off or laughed at, without even being able to apologize, and we end up hating ourselves and despairing about our own lives, again and again and again. It’s impossible not to wonder why we were born into this world as human beings at all.
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
The second book ‘Fall Down 7 Times, Get Up 8’ was written as he was growing older and goes into more depth about his experiences, and his thoughts on special education schools, education in general, and expands on the ideas around autism and empathy.
I won’t quote anymore because you should buy them both and support the author. He’s an exceptional writer.
I don’t believe in giving review scores to books, they are valuable for whatever you get out of them – but I’d highly recommend these to people who have autistic children, who have autism themselves, or those that wish to truly understand the struggles of trying to grow up in a world where no one understands you.
These books also gave me a pretty hard to process realisation – if I could never talk again in person – I would choose to do that. I hate talking in person, it’s so hard for me. It’s messy, disorganised, and people are inadvertently hurt when I get stuff wrong. I’d stop speaking tomorrow if I could – I also understand it’s not to be taken for granted. I’ll continue speaking. But I will always… always prefer to talk in text.