the reason i jump (book)

reason i jump.png

(2013) by Naoki Higashida (translated by david mitchell)

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notes/quotes:

intro (david mitchell)

a damburst of ideas, memories, impulses and thoughts is cascading over you, unstopably. your editor controlled this flow, diverting the vast majority away, and recommending just a tiny number for your conscious consideration. but now you’re on your own

now your mind is a room where twenty radios, all tuned to diff stations, are blaring out voices/music. the radios have no off switches or volume controls, the room has no door/window, and relief will com only when you’re too exhausted to stay awake.. sensory input flooding in too.. fabric softener in your sweater smells as strong as air freshener fired up your nostrils.. your comfy jeans are now as scratchy as steel wool.. the floor keeps tilting.. you’re non longer sure where your hands and feet ar in relation to the rest of you.. you can feel the plates of your skull, your facial muscles and your jaw.. your head feels trapped inside a motorcycle helmet three sizes too small.. from now on.. all languages are foreign languages.. sense of time is gone

as if it wasn’t a tall enough order, people w autism must survive in an outside world where ‘special needs’ is playground slang for ‘retarded’ where meltdowns and panic attacks are viewed as tantrums,

it was his explanations about why children w autism do what they do what were, literally, the answers that we had been waiting for…

reading (the reason i jump) was.. as if .. our own son was talking to us about that was happening inside his head..

the book goes much further than providing info .. it offers up proof that locked inside the helpless – seeming autistic body is a mind as curious, subtle and complex as yours, as mine, as anyone’s.

both emotional poverty and an aversion to company are not symptoms of autism but consequences of autism.. its harsh lockdown on self-expression and society’s near pristine ignorance about what’s happening inside autistic heads..

the three character used for the word ‘autism’ in japanese signify ‘self’ ‘shut’ and ‘illness’.. my imagination converts these characters into a prisoner locked up and forgotten inside a solitary confinement cell waiting for someone, anyone, to realize he or she is in there.. the reason i jump knocks tout a brick in the wall..

preface (naoki)

what kept me hammering away.. the thought that to live my life as a human being, nothing is more important than being able to express myself.. getting across to other people what i want and need them to understand..

loud/weird voice.. a reflex.. esp when frustrated

memory diff – reason for repeating questions.. dots rather than line.. another reason.. lets us play w words.. we’re familiar with.. like a game of catch w a ball.. rhythmic

firing same question back.. a way to fish out right ‘memory picture’ in our heads.. can end up saying opposite of what you wanted to say.. like foreign language every minute of every day..

you must be thinking – is he never going to learn  we know we’re making you sad/upset, but it’s as if we don’t have any say in it,  keep forgetting.. please.. don’t give up on us

every single time i’m talked down to, i end up feeling utterly miserable.. don’t know if people think i’ll understand baby-language better.. or i prefer it..?

when there’s a gap between what i’m thinking and what i’m saying, it’s because the words coming out of my mouth are the  only ones i can access at that time.. either because i’m always using them.. or they left a lasting impression

on reading aloud w strange intonation.. we can’t read story and imagine it at same time.. please don’t laugh

it takes us ages to respond.. isn’t because we haven’t understood, but because by the time it’s our turn to speak, the reply we wanted to make has often upped and vanished from out heads.. once our reply has disappeared, we can never get it back again.. then more questions.. so ..like drowning in a flood of words

making sounds w your mouth isn’t the same as communication.. t lots of people can’t get head fully around this.. belief that if a person is using verbal language, the person is saying what they want to say. this belief locks us up inside ourselves even more.. it doesn’t follow that what we’ve said is really what we wanted to say.. misinterpretations et al.. every time this happens.. i end up hating myself for being so useless and clamming up.. please don’t assume every word we say is what we intended.. t this makes communication difficult.. we really badly want you to understand what’s going on inside our hearts and minds. and basically, my feelings are pretty much the same as yours..

huge.. shaw communication law.. et al.. for all of us

our feelings are same as everyone else’s but can’t find way to express them.. as if we’re remote controlling a faulty robot..

being able to share what i think allows me to understand that i too exist in this world as a human being..t

we all exist in this world as a human being.. perhaps a mech that can listen to every voice.. everyday.. via idio-jargon.. would help everyone believe that

mystery of the missing words..

to me.. making eye contact feels a bit creepy.. so i tend to avoid it.. but in looking down.. looking at other person’s voice.. trying to listen w all sense organs

this idea people have that so long as we’re keeping eye contact while they’re talking.. that means we’re taking in every word.. ha..

on holding hands..  this impulse kids w autism have to dart of f to anything that looks interesting.. so let go of hands..

i can’t believe that anyone born as a human being really wants to be left all on their own.. what we’re anxious about is that we’re causing trouble for the rest of you.. getting on your nerves.. this is why it’s hard for us to stay around other people.. we’d love to be w other people.. but because things never ever go right.. end up getting used to being alone..

it would help.. if you could use our name first.. to get our attention.. before you start talking to us

on being touched..  feels like toucher is exercising control.. or that our thoughts become visible..

once i’ve made a mistake.. the fact of it starts rushing toward me like a tsunami.. i have to get out of the situation..finally i calm down.. and see the wreckage i’ve made. and .. i hate myself.. i just hate myself..

there are times when i can’t act, even though i really badly want to.. as if my whole body, except my soul, feels as if it belongs to somebody else.. and i have zero control.. i don’t think you could ever imagine what a agonizing sensation this is.. we never really feel that our bodies are our own.. they’re always acting up..

when we sense you’ve given up on us it makes us feel miserable..

what’s the worst thing about having autism? you never notice. really, you have not idea quite how miserable we are.. it’s impossible not to wonder why we were born into this world as human beings at all.. but don’t stress out.. the hardest ordeal for us is the idea that we are causing grief for other people..unbearable..

for us having autism is normal – so we can’t know for sure what your ‘normal’ is even like.. i’m not sure how much it matters whether we’re normal or autistic..

normal ness

autism ness

when i’m jumping, it’s as if my feelings are going upward to the sky. really, my urge to be swallowed up by the sky is enough to make my heart quiver.. when i’m jumping and clapping i can feel my body parts really well too.. that makes me feel so so good..

when i jump i feel lighter..

on writing letters in the air.. i’m recalling what i’ve seen as symbols.. letters, symbols, and signs are my closest allies because they never change.. when lonely or happy.. same way you might hum a song to self.. i’m not alone when i’m with letters..

on noise – not that noises grate on our nerves.. more to do w fear that if we keep listening.. we’ll lose all sense of where we are.. cupping ears helps us get a grip back on where we are

when you see an object, it seems that you see it as a entire thing first, and only afterward do its details follow on. but for people w autism, the details jump straight out at us first .. and then only gradually, detail by detail, does the whole image sort of float up into focus..

every single thing has its own unique beauty. people w autism get to cherish this beauty, as if it’s a kind of blessing given to us. wherever we go whatever we do, we can never be completely lonely.. it may look that way.. but we’re always in company of friends..

we feel obliged to do everything we can to protect ourselves against uncertainty and wearing comfy clothes we like is one way of doing this

on time – not a lot of diff between one second and 24 hrs.. exactly what the next moment has in store for us never stops being a big big worry

in the water it’s so quiet and i’m so free and happy there..t

nobody hassles us in the water, and it’s as if we’ve got all the time in the world..

people w autism get a kick out of repetition.. familiarity.. what we just don’t do are disputes, bargaining or criticizing others.. we’re totally helpless in these scenarios

when we look at nature, we receive a sort of permission to be alive in this world, and our entire bodies get recharged.. nature will always give us a good big hug, here inside our hearts.. green is life. and that’s the reason we love to go out for walks..

thing is, that’s not so much what we want to do as something we can do.. playing w familiar items is comforting.. so you think.. oh.. that’s what he likes to do.. we are misunderstood and we’d give anything if only we could be understood properly

what we love.. making friends w nature.. reason we aren’t much good at people skills – we think too much about what sort of impression we’re making.. or how we should be responding.. just by looking at nature, i feel as if i’m being swallowed up..into it..t i forget that i’m a human being, and one w special needs to boot … nature calms me down when i’m furious and laughs w me when i’m happy.. human beings are part of the animal kingdom.. and perhaps us people w autism still have some leftover awareness of this.. i’ll always cherish the part of me that thinks of nature as a friend..t

 holmgren indigenous law

jogging and walking refresh my body at least, and once refreshed i kind of feel back home inside myself.  my sense of gravity is restored, too, and that calms me down..

reason we get lost so often.. we don’t really know where we ought to be..t

supposed to’s.. of school/work et al.. killers/cancer

simply put, people w autism never ever feel at ease, wherever we are .. because of this, we wander off or run away – in search of some location where we do feel at ease.. we get swallowed up by the illusion that unless we can find a place to belong, we are going to be all alone in the world..

on wandering from home: my body moved because it was lured outside by something there… as i was walking farther from home, i didn’t feel any fear or anxiety. it came down to this: if i didn’t go outside, then i would cease to exist. why? i can’t say, but i had to keep walking on and on and on… roads speak to us people with autism and invite us onward..  please keep an eye out for us..

i feel a deep envy of people who can know what their own minds are saying.. and who have h power to act accordingly. 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.. living itself is a battle..

we don’t obsess over certain things because we like it.. or want to.. but because we’d go crazy if we didn’t.. whenever our obsessive behavior is bothering other people, please stop us right away, whatever way you can.  the person who’s suffering the most is the one who’s causing al the headaches for everyone else… if not bothering anyone.. keep a quiet eye on us.. it won’t las forever..

sometimes unable to move on to next action w/o a verbal prompt.. terrifying.. enough to make me lose the plot completely

when i’m not moving it eels as if my soul is detaching itself from my body and this makes me so jumpy and scared that i can’t stay where i am.. i”m always on the lookout for an exit. .. as long as i’m in a state of motion.. able to relax a bit.. because i’m so much more relaxed when i am moving, it took me quite a while to wrk out exactly what their ‘calm down’ even meant..

people w autism may look happier w pictures and diagrams of where we’re supposed to be and when, but in fact we end up being restricted by them.. they make us feel like robots.. visual schedules create such a strong impression on us that if a change occurs, we get flustered and panicky..

higashida autism law:

what are your thoughts on autism itself: .. i think that people w autism are born outside the regime of civilization. i think that as a result of all the killings in the world and the selfish planet wrecking .. a deep sense of crisis exists.. autism has somehow arisen out of this..  we are like travelers from the distant past.. and if , by our being here, we could help the people of the world remember what truly matters for the earth that would give us a quiet pleasure..t

nice..

afterward (david mitchell)

the gap, between what you see and what you get – the gap between a young man whose every waking second is in thrall to his neuro-atypical wiring and the thoughts that he is capable of articulating – is pronounced, and to an ‘autism-outside’ astonishing. it affirms what is to me the single most important aspect of the reason i jump: that we neurotypicals are constantly underestimating the intellectual and imaginative potential of people with autism.

convo between david and andrew solomon

andrew

naoki got a lucky genetic/neural break: a\ permitted a cogent communicator to develop behind his initial speechlessness and b\ did not entomb this communicator by preventing him from writing.. this combo appears to be rare (said before.. autism comes in a bewildering/shifting array of shapes… but common denominator is a difficulty in communication)

a: relationship between language and intelligence… d: it would be unwise to describe a relationship between two abstract nouns w/o having a decent intellectual grip on what those nouns mean.. .language as subset of intelligence and homo sapiens being the communicative, cooperative bunch what we are, rather a crucial one..

i feel that is is linked to wisdom – humor

in terms of public knowledge about autism, europe is a decade behind the states, and japan’s about a decade behind us, and naoki would view his role as that of an autism advocate to close that gap

in my experience, people w autism exhibit only mild symptoms in some areas but sever symptoms in others and at different times. as it happens, naoki has developed methods to overcome the block on his ability to communicate, so in this area his autism doesn’t look sever, but in other areas it does.. what do you do with this.. how do you describe the autism.. are you actually measuring it, or the degree to which the individual has or hasn’t been able to integrate coping mechs into behavior? i don’t have the answers, but i wish the narrative could move beyond people wanting a single adjective like ‘severe’ or ‘mild’ as if autism were a cold. it feels lazy somehow, and if you’re the one with autism, any degree of severity must feel overwhelmingly sever many times per day..

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on david‘s wikipedia page: (some) Researchers are doubtful that he (higashida) wrote the book himself, with psychologist Jens Hellman claiming that Higashida’s accounts “resemble what I would deem very close to an autistic child’s parents’ dream”.

whether or not he wrote it.. what a stupid thing to say.. researchers

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doc of the reason i jump:

The Reason I Jump’ Is a Total Immersion in What It’s Like Living with Autism https://t.co/jbgz1kC5Az via @indiewire
@david_mitchell @jerry_rothwell
#Documentary #Film #Representation #AuthenticRepresentation #International #Autism #Inclusion #TheResourceKey #Community
Original Tweet: https://twitter.com/JourdanSaunders/status/1329439670657294346

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