naoki higashida

naoki higashida.png

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intro’d to Naoki here:

Celeste Ng (@pronounced_ing) tweeted at 7:06 AM – 18 Aug 2017 :

This, from an interview with autistic author Naoki Higashida in TIME, is really beautiful. https://t.co/p3lWAC1Er8 (http://twitter.com/pronounced_ing/status/898531437229613056?s=17)

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reason i jump (translated by david mitchell)

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

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

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

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..

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..

higashida autism law

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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article from above:

I interviewed Naoki Higashida, an author with nonverbal autism, about life with little ability to speak: https://t.co/Qjj1kkUMr2

Original Tweet: https://twitter.com/NDHopper/status/885562422907555840

http://time.com/4856602/autism-nonverbal-book-naoki-higashida/

I can’t converse well, but this doesn’t mean I don’t think. It’s just that when I try to speak, the words that come to mind disappear..t

so many of us..

beyond words ness

People who have disabilities are told what they ought to do much more often. Those giving the advice may have good intentions, but sometimes the advice is more geared to minimize the hassle and inconvenience caused to others.

My meaning stems from the fact that people constantly compare themselves to others. They find it difficult to decide the best way to live..t

mona lisa compare law

I guess, and comparisons help them evaluate their own situation. A person can attain pure freedom only by being set free from being a person..t

freedom ness

What do neurotypical people agonize over too much?

Human relations. Not wanting to be left out of the group, or wanting to be better than others.. t

this kind of mentality makes relations between people way more fraught than necessary. Sometimes I wonder if the human intellect can nudge us backward.

When we know we are loved, the courage we need to resist depression and sadness wells up from inside us.. t

maté basic needs.. for all of us.. ie: hlb via 2 convos that io dance.. as the day..[aka: not part\ial.. for (blank)’s sake…]..  a nother way

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others:

Aware of how mystifying his behaviour can appear, Naoki Higashida explains his non-verbal autism #FallDown7GetUp8 https://t.co/zM3pUAkGDB

Original Tweet: https://twitter.com/david_mitchell/status/884427413932867584

https://www.economist.com/news/books-and-arts/21726055-naoki-higashidas-descriptions-being-autistic-have-made-him-one-most-famous

Using an alphabet grid and a transcriber, Mr Higashida explained the hidden frustrations of his condition. Commanding his body to move is like “remote-controlling a faulty robot”. He also exposed the depths of his emotions, admitting that a large statue of Buddha once moved him to tears.

To many, these glimpses were a revelation; lack of speech clearly does not amount to mental incapacity.

beyond words

“Fall Down 7 Times Get up 8” also reveals the inherent sadness of a life without words. Mr Higashida is unable even to say “thank you” to his own mother. Non-verbal people with autism “are probably the loneliest souls of all,” he says. That loneliness could be eased if the rest of the world had more patience. “The failure of people with autism to communicate doesn’t stem from inner self-imprisonment: it stems from a failure of others to see that we are open and receptive.” A lack of imagination for what autistic people can achieve ultimately holds them back.

http://www.penguinrandomhouse.com/authors/175207/naoki-higashida

Naoki Higashida was born in Kimitsu, Japan in 1992. Diagnosed with severe autism when he was five, he subsequently learned to communicate using a handmade alphabet grid and began to write poems and short stories. At the age of thirteen he wrote The Reason I Jump, which was published in Japan in 2007. Its English translation came out in 2013, and it has now been published in more than thirty languages. Higashida has since published several books in Japan, including children’s and picture books, poems, and essays. The subject of an award-winning Japanese television documentary in 2014, he continues to give presentations throughout the country about his experience of autism.

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wikipedia small

Naoki Higashida (東田 直樹 Higashida Naoki, born August 12, 1992) is a Japanese poet, novelist, essayist. He is one of the most famous writers in Japan. Higashida was diagnosed with autism at the age of 5. He was not able to make himself understood to people around him and his behavior was considered erratic.

Despite his disability, Higashida quickly took to learning Japanese characters. By attending a nearby cram school, he was able to better express himself. Soon he began writing Japanese characters with the help of adults who assisted by guiding his hand. He was able to express some of his emotions. Higashida’s mother noticed his power of expression and encouraged him to write poems and short stories. At the age of 11, and again when he was 12, Higashida won first prize in the Grimm Fairy Tales Contest, a story writing competition.

Since 2004, Higashida has published more than twenty books of fiction and non-fiction. The Reason I Jump was published as a book in 2007 when Higashida was 13 and it features 58 often-asked questions about his autism and his frank, sometimes startling, answers to them. The book was a hit in Japan, and its discovery and subsequent translation by David Mitchell and his wife, Keiko Yoshida brought it mainstream to audiences all around the world. Mitchell’s English translation was published in 2013 and soon topped the best-seller list of Amazon’s U.S. and British sites.

Higashida’s second major translated release, Fall Down 7 Times Get Up 8, was released on July 11, 2017. KA Yoshida and David Mitchell provide the translation for this book as well

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autism

dis order

crazy wise

et al

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david mitchell – either it was a fake.. or we are underestimating (autistic) people

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fall 7 get up 8

notes/quotes:

intro (david mitchell)

xii

what if the current mainstream assumption that people w sever autism have matching sever intellectual disabilities is our own decade’s (like 40s autism came from refrigerator mothers; 60s cures based on electrotherapy.. et al).. big bad wrongness about autism.. what if naoki’s conviction – expressed in this present book – that we are mistaking communicative nonfunctionality for cognitive nonfunctionality is on the money?

xvi

to be told that we’ve been underestimating our child’s potential can feel like we’re being accused of collab ing in our child’s imprisonment, and what loving, self-sacrificing mom/dad would sign up fo that.. an impulse to shoot he messenger is understandable..

i believe that while severe nonverbal autism does indeed look like a sever cognitive impairment, the truth is it’s not: it’s a sever sensory-processing and communication impariment.. these words hold a world of difference..

to deny that a severely autistic brain my house a mind as curious and imaginative as anyone else’s is to perpetuate a ruinous falsehood..

the history analogy is deafness, which from aristotle’s era until the advent of sign langauge in the 19th cent was also thought to be indicative of a severe cognitive impairment

xix

autism has a habit of making clean labels like ‘verbal’ and ‘nonverbal’ murky..  i cannot know for sure whether he understands none, some or all of a convo between third parties. if ai cold be sure, it wouldn’t be autism we were dealing with…. autism is a relative thing as well as label resistant..

5

if i couldn’t communicate via my alphabet grid, my question would go unanswered and i’d be sad to my core about how little i understood..

25

how i would love it if i could breezily ask.. at what time shall we call it a day..but articulating such long sentences is nigh on impossible for me..

27

in the past, i had a much harder time if order of day’s events got switched or if urgent business cropped up unexpectedly. i didnt’ mind about the change of plan itself; rather, i was very nervous about thow i might react to the new situation..

doing nothing drives me crazy and isn’t in the least bit restful; action relaxes me and puts me at my ease… i am connected to neither past/future.. having nothing to do in present has ame impact on me as having nothing to do for rest of eternity would… as long as i’m in motion, i feel as if i could become a valid member of society, ike everybody else.. by being active and in motion, my heart beats more strongly..

29

viewing a whole day in terms of subdivision is a skill i seem to lack.. for me.. once time is compartmentalized its ‘scenes’ are fixed and i’m no longer at liberty to change things around..t

lovely..

30

if my current activity doesn’t finish by the time the next one is due to start, i cancel the second activity or push its starting time back..

my brain has this habit of getting lost inside things.. finding way in is easy.. but.. like being in a maze .. finding way out again is a lot harder.. i want to exit the maze right now.. but forced to stay inside it.. this applies also to time and schedule.. they constrain me. i’d like to live w/o these constraints as far as possible..

me too

31

i guess in any context there will be a ‘majority’ way of doing things and a minority who find al alternative. what’s important to consider is how best we can address our deficiencies or uniqueness and what kind of help would make our lives most manageable..

32

i’m one of those people who get anxious when they don’t know what happens next, and turning this anxiety into a pleasure (anticipating season change) has taken me a very long time..

36

many people w disabilities are, i think, kept isolated and insulated from society.. please give those of us w special needs opps to learn what’s happening in the wider world w/o deciding on our behaves.. by assuming – they won’t understand anyway.. or well.. they don’t look that interested..  on the surface, a sheltered life spent on your fav activities might look like paradise, but i believe that unless you come into contact w some of the hardship other people endure, your own personal development will be impaired..

37

the value of a person shouldn’t be fixed solely by his/her skills/talents – or lack of them. it’s how you strive to live well that allows others to understand your awesomeness as a human being. this miraculous quality touches people…via this ‘how’ people consider the sanctity/validity of everyone’s life, whether special needs are involved or not..

38

for me success is not some invigorating, emotional experience, like taking in the view from the summit of a high mountain.. it’s more like walking a high wire, barefoot, in a circus tent. once you reach the far side you’ll earn your round of applause – but the big drop down can happen at any moment.. only people who think of success as an end in itself will see it as a shiny, sparkling state..

39

people generally judge something to be a success or a failure according to results, but i think there’s more to it than this. i’ll respect a person who’s still at the foot of a mountain but standing firm and looking up at he peak. in the eyes of even those people who seem to be furthest away from ‘success’ you might find reflected the image of a beautiful mountain. ‘m truly grateful for my luck that my words have found an audience; and now it’s time for a different, taller, mountain..

43

i find the rhythmic motions of athletes’ bodies as they run beautiful – i can’t help but watch. i really don’ care who wins and who loses in sports or games..

in reason i jump you wrote ‘my memory isn’t a continuous line but a collection of dots’.. does this mean that the things you experience every day add more and more dots to a big blank canvas?… i’d say it’s more as if experiences become stars in the sky, one by one by one. a blank canvas is 2-d, but my memories are arrayed here and there in 3d.. some stars i can reach out and touch, while others are hundreds of millions of light years away..

44

at what state do you consider a person to be finally ‘grown up’? … maturity, i’d say, is a matter of progressing ever closer to your ideal self. ..i tend to ignore what people think about my progress .. t

eudaimonia

because i can gauge it myself just by seeing how far i’ve come.. if my present situation slid a little, relative to my past, i ‘d view it as a necessary stage for my future self. ‘grown up'” a valid pair of words..

there’s no need to feel any shame just because your ‘fullest’ and ‘best’ look different from those of others..

45

i get depressed usually when i’ve failed to do something. my failure will remain in my head as a memory – what’s done is done. but if i stay depressed, the failure memory will be worsened by having a depressed me in it. i don’t want this, so to avoid it i visualize myself getting back on my feet as quickly as possible. if i can turn a memory of me failing into a  memory of a victory over adversity, then i can overcome any failure..

52

exchanges of thought are, to a large degree, reliant upon this thing called language. thanks to it, human beings – and we alone – can truly enter a end explore the feelings of others.. what an extraordinary skill

57

although i can get my meaning over to some degree, much of what i really wish to convey is spoken prayer-like, mantra-like, silently, but over and over, in my heart. words aren’t everything, i’ve come to learn. please remember: the reality of a nonverbal life is way way harder than the verbal majority can imagine

60

i find it easier to access language (in formal/repetitive situations.. than in daily life, thanks to the consistency of classroom routines

communication is the person, to a major degree. please don’t be the first to walk away (on this taking a great deal of practice..patience.. waiting)

62

writing prose that i know will be read feels like discreetly placing a manuscript on a mountaintop and leaving it there. from a good vantage point at the foot of the mountain, i can look back up and watch travelers finding, crying or smiling over the page i left up there. the mountaintop looks far away, but their voices echo down to where i’m listening..

lovely

63

ideas and emotions exist first, to my mind; words come second, to give form to the ideas and emotions. certainly, people w an impressive vocab can express their ideas more precisely, but these ideas exist independently of the words used to describe them. i wouldn’t say that the more words you acquire, the richer your sensibilities. pleasure, sadness, likes, and dislikes, – we all fell these, but who can capture every last sensation they ever feel in words alone..?

beyond words ness

i don’t have ‘fav rods’ based on how they sound to my ear. words are animated by meaning, after all. sounds in nature – the chirping of crickets or a bush-warbler’s song – attract me more than the wound of words. the fact that these creatures don’t speak in words as such but send out messages using their whole bodies is a mystery to me a mystery that human beings cannot duplicate

66

can you imagine a life where you’re confronted at every turn by this inability to communicate? i never know i’m saying the wrong thing until i hear myself saying it. instantly i know i’ve slipped up, but the horse has already bolted and people are pointing out my error or even laughing about it.. their pity, their resignation, or their sense of .. so he doesn’t even understand this.. make me miserable. there’s nothing i can do but wallow in despondency…

the pain of being unable to do what we’d like to is already hard to live with . pain arising from other people’s reactions to our mistakes can break our hearts..

67

imagine.. interpreter who offers you a strictly limited period of time in which he/she will translate anything you wish to say… i think the exchanges are high that first and foremost you’d want to express your appreciation (rather than spend it mouthing off about the miseries you endure thanks to your feeble grasp of language.. .. when time is short, most of us would go for gratitude.. especially if we don’t know when we’ll next get the chance – if ever – to show our thoughts and feelings..

68

these days i’ a person who can tell his family whatever i wish to. tim is my ally. this is a luxury i treasure

76

some grown ups tell the bullied kids simply to put up and shut up, even admonishing the victims and telling them, ‘ ha, there’s worse than tha waiting fo you out in the big wide world.

as far as i’m concerned, there’s no need whatsoever to ‘practice being bullied’ acquiring superpowers of endurance is not something children need to be learning before they enter society at large..

i would like people to stop pressuring children to make friends.. friendships can’t be artificially created..

90

the answers.. when put into words, might appear to be too complex for us.. but i’d argue that that’s only because we are often so poor at handling language. i’d argue that every neuro atypical person is thinking the same way about a life w meaning and independence. children w disabilities might, to your eyes, look stuck in a perpetual childhood, but our thoughts and sensibilities evolve constantly. so, using vocab the child understands, please show them how they can live their lives to the full

92

advice to my younger self: life is short.. roll up sleeves and get on with things..

116

the neuro typical public needs to know that the failure of people w autism to communicate doesn’t stem from inner self-imprisonment: it stems from a failure of others to see that we are open and receptive…

117

when i stop and think about it, i see that everyone is kind of alone from the day they’re born until the moment they die..people w nonverbal autism.. probably loneliest of all.. looking at it another way.. not really so unique..

120

some people w autism go into a meltdown at sight of someone else getting a major scolding..  my theory is.. triggers a panic attack..

121

i find it very hard to laugh along with (people laughing).. not that i fail to find .. funny: it’s that i literally can’t do it, because the moment i see someone start laughing, i forget to join in.. i become entranced by the sight of the other person’s laughing face..  then if i look away.. entranced w sound of laughing.. slips my mind i ever wanted to laugh.. what makes me feel lonelier .. is that people assume i don’t share their feelings or humor..

other times.. i find diff between angry and normal person’s face hilarious.. might burst out laughing…. despite the anger this generates..

124

i can often cause trouble for other people.. makes me miserable.. but .. whatever happened.. my family just acts as if nothing out of the ordinary had occurred.. how lucky i am to liven in such an environment.. bubble like evanescent sensation..  life w/o them would be impossible..

125

i don’t want to be a one of a kind only flow in world.. i’d prefer be kind of flower you can find all over the world.. in any old place.. .. to me.. actually the wildflowers, weeds.. dandelions..  which nobody really gives a second glance to .. that are the happiest..

131

when start hitting my head.. want to take control of the situation but my brain won’t let me..my rage is directed at my brain..

if people don’t flip out.. their forbearance give me the headspace to think that one way or another i have to stop myself..

132

biting my clothes.. letting out a squeal.. helps me cool down

134

events don’t follow a script.. this is a human being

135

once i come back to myself again, please just treat me as you normally do.. reproaching/punishing someone w autism for having a meltdown makes us miserable..

136

unwarranted praise for sticking to rules doesn’t make us – as adults – pleased..

137

when i’m at home i can go about my daily routines at my own speed and this si why i’m able to forget about my autism..  ‘at my own speed’ – relates to feeling comfortable and secure..

144

compassionate people understand that being told to ‘do your best’ can feel like an extra burden, or come across as an exhortation to up one’s game..

157

what i pay attention to while i’m writing is not to over explain things; and to write those things that i, and only i can write..

169

it dawned on me.. in these situations (have to get off train early) the source of all my difficulties is chaos in the brain.. needing to obtain my brain’s consent..

172

act on the assumption that we’re good people. if you suspect we’re a lost cause, we pick up on that.. the value of a person shouldn’t be decided by the judgments of other people..kindness brings out best in all of us

devijver assume good law

183

i yearn to pass as an ordinary person yo’d not give a second glance to .. i doubt most people can imagine what it’s like to be noticed/watched the whole time.. but when i’m w my family at home, they don’t pay overly close attention to me.. everyone does their own thing.. and i get to be an ordinary person..

184

is there not hope that one day we’ll create a place in the wider world where we belong too?

we all need this.. spaces of permission.. with nothing to prove/watch

190

my sister’s room.. where i’m never rejected or get special treatment..

197

how would you feel if you were obliged to undergo med treatment for the sole reason that the person you are is an inconvenience.. not medicine to alleviate symptoms, but an operation to effect a root and branch change to who and what you are and remove all meaning from everything you thought was beautiful and precious..

it is unfair that even the personalities of people w autism get invalidated because of our differences from the norm..

if world at large would take deeper interest in how our brains work and research our uniquenesses – as opposed to focusing on our treatment and ‘cure’ – we could take pride in our neuro-atypical natures..

198

every tingle time someone treats me w kindness my determination to live well from tomorrow is rejuvenated..

thanks to people who come to me with questions and ask for my opinions .. never mind if i can’t always answer.. i get to think about what i want..

199

to live a life where i fell blessed to have autism: that will be my goal from now on

201

the period in which we are together as parents and child is finite.. so please.. support them well.. laugh together and share your stories.. you won’t be revisiting these years.. value them.. that’s all i’d ask

203

giving flowers to my mom on mother’s day was a dream i’d been harboring for years..

________

tim chan

[https://www.youtube.com/watch?v=279h9QJ9ptw]

[https://www.youtube.com/watch?v=Woy-XzC-UVs&t=375s]

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highly sensitive people – Elena

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