fall down 7 times just keep falling down forever

Autism Parents say the saddest things even as they make progress towards recognizing that their children are human. In The Guardian, Charlotte Moore reviews Naoki Higashida’s new book, Fall Down 7 Times Get Up 8. He uses an alphabet grid to communicate. (I haven’t read either of his books)

My two eldest sons, George and Sam, have autism. Sam is the same age as Higashida, and similar in many ways. When I read The Reason I Jump, I felt as if Sam was speaking to me fully for the first time – or for the first time since early childhood, when he would try earnestly to make himself understood before withdrawing, defeated. Would reading its successor be as valuable and powerful an experience?

See how there’s a thought process where the first thing she says is dishonest and the truth is awful? Didn’t realize I needed to spell this out before: to understand my point, you have to stop and picture yourself not as a hand-wringing mother but as a small child unable to communicate with its mother to the point of despair. Then it becomes threatening to think that maybe the child’s behavior was actually interpretable all along. The phrase “sometimes thick heads” admits to but downplays this painful realization.

The book’s single most important function is to drum into the sometimes thick heads of us neurotypical readers that people with autism experience a genuine and usually insuperable disconnection between what they want to say or do and what their brain allows them. Higashida wants to laugh along with other people, to exchange greetings, to say “thank you”, but his mind “tends to go blank whenever I try to speak”. His brain “has this habit of getting lost inside things”; he blurts out remembered phrases as if hitting “a replay button I have no control over”.

This lack of control is one of the most painful aspects of his autism. His mother asks him if he wants his gloves; “I replied ‘gloves’ straight off even though, in truth, I didn’t want the gloves.” Gloves was the last word he heard, and “latterly heard words stick best to my memory”. At worst, “when I fight the demands of my fixations, and when my urge to do what my fixation dictates and my determination to ignore it smash into each other, I can erupt into anger”. A meltdown follows: “I want to take control of the situation, but my brain won’t let me… My rage is directed at my brain, so… I start punching my own head.” Head-punching and other forms of self-harm are common autistic traits, much more so among the non-verbal. Higashida’s explanation makes perfect sense.

Can it really be true that normal people haven’t felt enough frustration to hurt themselves? I’m getting ripped off in life so hard if it’s true. I mean, I already knew they don’t get it, but man…

Autism prevents him from seeking help, and makes him unable to accept intervention, however well intentioned. “If I’m agitated… please let me work through it… nothing you say is going to get through to me. Please be calm and even-tempered even when I’m mid-meltdown, and don’t try to talk me out of it.” Reprimands delivered mid-meltdown are worse than useless, they can even become “tangled up with my anger” and create “a new verbal fixation. Your words will then stir me up even more.” Advice like this is of incalculable value to the bewildered parent, teacher or carer.

It’s of incalculable value, but more importantly, you’re the problem if you need to be told that. Do you like it when people yell at you when you’re at your worst? Did someone commanding you to feel an emotion ever work? So don’t do it to other people. Jesus Christ.

For her to be writing these sentences, it means she wasn’t doing these basic Golden Rule things before. That’s why it’s so enraging. How casual the dehumanization of her own children is, because of our culture.

Higashida has progressed since the days of The Reason I Jump. There are losses as well as gains: “I feel less connected to nature… however, I’ve grown fonder of myself.” As a child, he hated himself so much “that I didn’t want anyone else even to see me… I yearned to vanish from the world.”

He used to run away, as did Sam. Calling out police helicopters was a regular event during Sam’s childhood. It never crossed my mind that self-hatred could be behind his disappearances; I wouldn’t have credited him with such a level of awareness, but Higashida’s writing opens my mind to all sorts of possibilities for interpreting the behaviour of both my sons.

Life is still challenging, but Higashida no longer wants to vanish. “I only reached a place where I’m OK with being seen when I was able, finally, to accept my disability.” Perhaps achieving this acceptance explains why so many autistic people, George and Sam included, become much calmer and easier to live with as they get older. Higashida can’t imagine losing his autism, and doesn’t relish the as yet entirely theoretical idea of a “cure”; “How would you feel if you were obliged to undergo medical treatment for the sole reason that the person you are is an inconvenience? To live a life where I feel blessed to have autism: that will be my goal from now on.”

The connection is not made between her son hating herself and wanting to run away, and her own belief that her probably-very-sensitive child is insentient.

What’s unspoken is the truth of what it means every day that she didn’t “credit her son with awareness.” It means saying all kinds of openly-hurtful things you would never say in front of someone you didn’t think was retarded. Behaving around the person the way you would around a dog. You don’t think treating your kid like an animal makes them want to disappear?

Then she actually admits it herself at the end of this passage:

As with The Reason I Jump, Fall Down 7 Times Get Up 8 is translated by the novelist David Mitchell and his wife KA Yoshida, themselves parents of an autistic son. Some readers will question its authenticity; how could such lucid prose, such a flexible vocabulary, be commanded by someone who cannot talk, and whose reading consists mainly of the picture books of his childhood? Moreover, a defining characteristic of autism is held to be lack of empathy, yet Higashida shows a delicate regard for the difficulties his condition creates – “I encroach upon other people’s comfort zones, yet I remain acutely sensitive about my own” – and is adept at explaining his experiences in language that makes sense to neurotypicals – “I try to ensure my autism-influenced senses don’t take my sentences too far from the reader’s experience”.

Lacking any insider information, I choose to believe in it. We accept that some non-verbal autists can produce astonishingly intricate drawings or play classical music beautifully, so why should a facility for language not also be possible? Higashida points out that neurotypicals “say whatever comes into their heads, unfiltered” in front of autists, wrongly assuming that because they don’t react, they can’t understand or aren’t listening. Higashida has many years’ experience of nonreactive observation to draw on for his observations about human behaviour.

I hate the way “some readers” are dignified in their denial of humanity to other people. There are so many people who like Disney stuff that are too old for it. Just saying. Including parents who bring their kids to the movies.

Yes, he shows a “delicate regard” for other people in those passages. It’s still not enough to start off the passage with the viewpoint that we’re not people. From experience, sooooo many normal people are less considerate than the sentences quoted here, and they don’t have to work 10% as hard for people to believe they’re capable of empathy.

She “chooses to believe in it” like she’s being super charitable and just did a Great Thing. Then she explains that she’s the lady who says, “But you can’t be autistic!” “Good at words and bad at people” is the kind of autism I have. If your mental picture of autism is limited to people who can’t talk, your perspective is skewed. It’s simply not accurate.

Notice also that she says she’s “lacking any insider information.” When autistic adults are disagreeing with Autism Parents, family relationships are said to trump all such “inside information.” When her guard is down, she admits being related to someone isn’t the same as understanding them very well. I grant that it’s a fair presumption for pure groups of normal people.

Besides, there’s something gloriously autistic about Higashida’s writing. He isn’t a neurotypical trapped by wordlessness. His sensibility is “other”. His overwhelming reactions to a rusty umbrella fastening, sticking plasters, a cartoon kitten; his inability to interpret the sound of rain as meaning that it is actually raining; his limited awareness of the wider lives of the people he’s fond of – all this would be hard to fake.

This means she read the book with a mindset of not wanting to believe the purported author is a real person. Rarely are normals held accountable for this fundamental hostility. They seem unaware that it is hostility.

I don’t think that all non-verbals are as gifted as he is; parents shouldn’t feel tortured by their failure to release a hypothetical hidden talent. Rather, we should look with gratitude through the porthole he has cleared on to a submerged world: “Spoken language is a blue sea. Everyone else is swimming, diving and frolicking freely, while I’m alone, stuck in a tiny boat, swayed from side to side. Rushing towards me are waves of sound… When I’m working on my alphabet grid or my computer, I feel as if someone’s cast a magic spell and turned me into a dolphin.”

Again with the veiled admissions of guilt. Also, where is the “hidden talent” thing coming from? The problem isn’t failing to recognize savant skills, it’s failing to recognize basic humanity.

It’s disturbing to me that this is what being thoughtful and reflective about autism looks like to normal people. A lady saying things that could make you cry about her own children is the best they can fucking do?

The problem, like always, is their bullshit need to belong, which is why there have to be Others. If they didn’t believe in Others, basically all of the problems would take care of themselves. They wouldn’t need to agonize over these fine distinctions like whether autists are people or not. They would just treat everyone like people and get on with it.

Normal people love their Others and they’re keeping them. They know it’s wrong and they do it anyway.

Oh noes! Your kid makes YOU an Other by association. OMFG we have to eliminate this from the human condition what a gross awful burden.

It’s a good thing we don’t have any empathy or theory of mind so we can’t tell how shitty you treat us! Wouldn’t it suck if we knew damned well? This is when the normal people get overwhelmed and shut down. Start carrying on.

A lot of normal people are ready to get into a fight if someone disrespects them this hard even one time. I’m reminded of my subhumanity multiple times basically every day. This is definitely the reason “confidence” is the precondition of affection. Normal people are plenty insecure as it is. They don’t actually deal very well with having lots of haters. They need to fit in, remember? In practice, if the world is telling you that you’re a piece of shit all the time, “confidence” is irrational. The problem isn’t that people presume you’re fine, and you’re not sure of yourself. The problem is being sure of yourself, and everyone presumes you’re not fine.

Daily life with stigma is basically such a burden that “Must be confident” just means you’re looking for people without any.

Like…seriously think about how much dehumanization is in that article, and extrapolate that to daily life. How would you feel after 6 months? How long could you maintain your “I don’t care what other people think about me” facade? Normal people couldn’t tolerate it for 5 minutes, because they can’t tolerate hearing other describe it.

So when there’s actually a self-respecting black person, autistic person, woman, etc., it’s alarming that the psychological domination has failed. “Holy shit if we did all that to them and they came out liking themselves, they might be unstoppable! Kicking them around is supposed to be easy! I don’t know what to do!” The panic of a bully.

Wouldn’t you want to just disengage from life and hide in obsessing over something? What’s the point if everyone’s heads are so far up their asses that you can’t communicate with them? They feel no urgent need to work on themselves. You can show clearly that the problem is them and not you, but it won’t change anything.

In their culture, knowing something is wrong isn’t a reason not to do it. It’s a reason to manage other people’s perceptions of you. The allegiance is to climbing the hierarchy, not social harmony. They basically want something destructive, so they destroy things and don’t mind.

This is a country run by the people who beat up autistic kids and like nigger jokes. They always, always win. Always. Always and forever until the end of time. 1000 Year Reich. Full spectrum dominance.

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