When I was small I didn't even know I was
a kid with special needs.
Naoki Higashida, a thirteen year old, non-verbal autistic boy from Japan had his world opened up by the application of an alphabet board, giving him a long desired way to communicate his thoughts to those around him. Here he answers questions about his experiences, the way his mind works, and of course, why he jumps.
This was one I’d been meaning to read for quite some time, having a vested interest in autistic own-voices which are few and far between. With the advent of the diverse-a-thon, something created in direct response to a vastly unpleasant video that I have not sacrificed twenty odd minutes of my life to watching but understand the gist of from other people's responses. This was the time; not all diversity is about race or sexuality.
This book mostly takes the format of a Q&A, with some unknown person asking thirteen year old Naoki a question that is commonly asked about autistic children, and his response given via his alphabet board, with a smattering of fictional shorts throughout. This makes for a very quick read, the whole thing clocks in at less than 180 pages so won’t take even a slow reader too much time to get through, though even at this small size it occasionally gets repetitive and some of the answers just don’t seem to relate to the questions asked.
A criticism that seems to be levelled at this book an awful lot is that this couldn’t possibly have been written by a thirteen year old, autistic or not. Being thirteen, autistic, non-verbal, none of these are mutually exclusive with eloquence or self-awareness. There is probably something added in the translation by David Mitchell, some dramatic literary flare, and possibly whoever transcribed it in the first place had an impact, but we can't know to what extent so I will assume these are Naoki's words until he says otherwise. Not being able to speak is not the same as not being able to think.
That said, I still didn’t really like this much. I am autistic myself (obviously, have you noticed the title of this blog?), though I am verbal (mostly), a westerner, an adult, and female, so my own experience is very different from Naoki’s. If you have met one autistic person you have… met one autistic person. We are not a gestalt mind, we are not homogenous, we are just as unique from each other as neurotypicals are. This is not the definitive account of autism that it is being touted as, there is no such thing, it may be the way that this one autistic person sees the world, the way he thinks, but it is by no means one size fits all. But my goodness does this book like to generalise.
Often, Naoki starts a response with “we” or answers in a way that implies, or outright states, that what he is saying applies to all autistic people. And more often than not I completely disagreed with what he was saying. My sensory issues are exasperated by but not caused by my emotional state. Food I don’t know is stressful because I have issues with textures. I find visual schedules and cues helpful, not restricting. I do not need or want you to stop me from a repetitive behaviour unless I am actively going to harm myself or others. And these are just a few examples, from this one autistic individual (hi there), my experience isn't universal either.
Another big one that really made me inner-growl was that he claimed that nobody human actually wants to be alone really, that it’s just because we are so ashamed of our constant negative effect on those around us. Seriously, fuck that noise. I do very much like being alone, other people are stressful as heck, a constant source of sensory input that I can only handle in small doses. I am not hiding away because I’m in a constant state of horror at my impact on other people, nor should I or any other autistic be, it is because I take pleasure in it and it recharges my batteries. The portrayal of autistic shame as if it is universal was just frankly unpleasant, we do not need to apologise for existing, no matter how severely autistic.
Another aspect that really irked me was the constant use of “people with autism”. I do not know if this is from the original writing or a result of the translation but it is a massive pet peeve of mine and it was used constantly through both the main book and the introduction. I am not a person with autism, I am an autistic person, I cannot be separated from it like it is a disease. Person first language is supposed to remind you that the person in question is in fact a person; I don’t think you should need reminding of that in the first place. But as I said, personal preference, it just rubs me the wrong way. Really, really rubs me.
This whole thing smacks a little of inspiration porn, look at this non-verbal autistic being eloquent and thinking just what we want him to think! How inspiring! How deep! Often the things he says are fluffy, romanticised, metaphorical bull, the stuff that struggling parents and caregivers want to hear, but not what a lot of us are actually thinking. Sensory issues are just sensory issues, not a desire to go back to the time when we were little more than primordial soup. We are not here to be a cure for the wrongs humans have done to each other and the planet. I am not looking at someone’s voice when I’m avoiding eye contact, nor is there a deep philosophical reason that walks in the country are pleasant.
Well, that might all make it sound like I hated this book, but I didn’t, there was still merit to be found. While the fictional segments were just pretty boring for me and I could have done without them, they were very clearly written by a thirteen year old, the answers were eloquent and occasionally insightful. The key issue that he highlighted that I hugely agreed with and want to just shove in everyone’s face is that hey, of everyone involved, it is the autistic individual who is the one suffering the most. As much as you as a parent or caregiver are frustrated or irritated by their inability to do something, they are far more so. You may be annoyed and unable to understand, but imagine what it’s like on the other side, without the words to climb out. So be patient, be compassionate, we're trying just as hard as you.