The Guardian: about Autism 1

Reading about Autism and autistic children from parents that struggled to understand Asperger and Autism can be more than useful.

I love these articles written by David Michell; I hope you could find them interesting and might help you cope with your pupils/students!

 

Novelist David Mitchell looks back on the heartbreak – and joy – of learning that his son had autism. Plus, below, an extract from the book by a young Japanese boy that helped him
Novelist David Mitchell
 David Mitchell: ‘One psychologist preached that autism is caused by mothers not loving their children properly. You hope Satan has something planned for that gentleman.’ Photograph: Adam Patterson for the Guardian

So. The child psychologist across the desk has just told you that your three-year-old is “presenting behaviour consistent with that of an individual on the autistic spectrum”. You feel trepidation, sure, a foreboding that your life as a parent is going to be much tougher than the one you signed up for, but also a dash of validation. At least you now have a 10-page report to show to friends and relatives who have been insisting that boys are slower than girls, or that late language is to be expected in a bilingual household, or that you were just the same at that age. It’s a relief that your child’s lack of eye contact, speech and interest in picture books now has a reason and a name. You send some generic emails to people who ought to know first containing the words “by the way”, “looks like”, “has autism”, “but don’t worry” and “confirmed what we thought anyway”. The replies come quickly but read awkwardly: condolences are inappropriate in the absence of a corpse, and there aren’t any So Sorry Your Offspring Has Turned Out Autistic e-cards. People send newspaper cuttings about autism, too – about how horse-riding and shamans in Mongolia helped one kid, about a famous writer whose son has autism and is doing fine, about a breakthrough diet based on hemp and acacia berries. The clippings go in the compost.

You read books to learn more – until now, the closest you’ve come to autism is watching Rain Man or reading The Curious Incident Of The Dog In The Night-Time. Autism proves to be a sprawling, foggy and inconsistent field. Causes are unknown, though many careers are fuelled by educated guesses. MMR is the elephant in the room, but you’ll get to know a number of people with autism who never had the injection, so you draw your own conclusions, like everyone else – until such time as harder data emerges from the vast control group of MMR refusers’ children created by the scare. Symptoms of autism appear to be numerous. Some are recognisable in your own son, but just as many are not. You learn that luminaries such as Bill Gates have “high-functioning autism”: “low-functioning” people with autism lead less visible lives. You hope for the best.

There’s quite a marketplace for autism treatments, you find. Some sound rational, others quasi-deranged. One claims that autism is caused by allergens entering the bloodstream through a perforated bowel and inhibiting cerebral development. You FedEx a blood sample to a laboratory in York, and quite a long list of prohibited foods comes back, including lamb, kiwi fruit, pineapple, gluten, red meat and dairy products. Your family adopts the regime, and although you feel a little healthier, you see no change in your child. Ditto the benefits from the ionised water you’ve ordered from the US, which a friend passionately recommended. You feel a new pity for the medieval unwell, who limped from one shrine to another, hoping to find the right saint to pray to, when what they really needed was a quantum leap in medical science. Such a leap has not occurred in autism research yet.

Autism therapists enter your life. Some work for local care-providers, some are freelance; some are occupational therapy specialists, some focus on speech and language, some advocate Floortime™ (a play-based treatment), some “applied behaviour analysis” (rewards and measurements); some are evangelical about one approach, some take a more pragmatic “whatever works, works” approach.

You learn that treatment is called “intervention”, and that while 10-15 hours a week are recommended, your local care-provider has the resources to offer only about 15 hours per year – and, after sickness and staff training, this will become 10 hours. One afternoon, a therapist from the care-provider is so fazed by your kid headbanging the kitchen floor that she flees before the session is over, and you realise you’ll have to pay privately. You don’t begrudge the money – the therapist you find has a horse-whisperer’s gift for teaching children with special needs – but 10 hours a week is going to cost upwards of £10,000 a year. (How much is Eton again?) Some is refundable, if the official criteria for the tutor are satisfied, but for the most part you’re on your own. Therapy during school holidays is not repayable, because the authorities believe autism ceases to exist outside term time.

Things get challenging. Your sleep is broken and stays that way. Kids with autism don’t really do bedtime – they keep going, Duracell bunny-style, until unconsciousness sets in, often after midnight: 3am “parties” are common, where your child wakes up refreshed and jumps on the bed for an hour, laughing and crying. After one rough night you take your kid out for a spin in the car to give your partner a rest – 45 minutes of nonstop screaming later you give up and come home. Worst is the headbanging – against the hard floor, up to a dozen times a day. Your kid’s bruises are earning you dodgy looks at the supermarket checkout. It is suggested that you keep a self-harm diary to identify the triggers, but these seem numerous and obvious: hunger; tiredness; frustration at dead batteries in a toy; a scratched Pingu DVD; not being allowed to play with kitchen knives.

You’re warned against stopping the headbanging by force, in case this reinforces the self-harm by teaching your kid that headbanging = attention + a hug, but you’re also afraid of brain injury and concussion. A wise therapist suggests placing your foot between head and floor, so that the impact is softened. As your feet get tenderised, you recall an influential American psychologist who preached that autism is caused by “refrigerator mothers” not loving their children properly. You hope that Lord Satan has something special planned for that learned gentleman. You envy acquaintances who have hands-on family members living nearby, able and willing to roll up their sleeves and help: like many others, you and your partner are on your own. Self-pity, however, makes you feel wretched and is a rudeness to single parents coping with a child with autism while being forced by the bedroom tax to search for one-bedroom flats.

Your social horizon dwindles. Friends assure you, “Bring him over. It’s fine – our place always looks like a bomb’s hit it” but you know they’ll be less laid-back when a curtain rail gets used as a gym bar and comes down in a shower of plaster. Babysitters, air travel, hotels and B&Bs are off the menu. You are offered respite care, but it feels too much like dumping your four-year-old among minimum-wage strangers in Mid Staffordshire, and turn down the offer. Soon after, you read about a teenager with autism who died at a nearby respite facility. He choked to death on a rubber glove and wasn’t found until the morning. You feel a fuzzy anger at autism itself, for denying your kid so many childhood pleasures: making friends, trips to the cinema, birthday parties, a day at a theme park.

Your kid suffers from a period of acute hypersensitivity, when clothing appears to feel like cheese-graters, and sitting or even lying down to rest causes intolerable distress. People suggest massage oils, swinging your kid around at high speed, and waiting for the sunspots to subside. Others say, “Thanks for telling me” in a consoling tone of voice. A potty-mouthed Edinburgh friend says he hasnae got a fockin’ clue how fockin’ hard that must fockin’ be fer all o’yer, which cheers you up a bit. The hypersensitivity lasts about a fortnight. That was the nadir.

Novelist David Mitchell
 ‘One afternoon, a therapist is so fazed by your kid headbanging the floor that she flees. You realise you’ll have to pay privately. (How much is Eton again?)’ Photograph: Adam Patterson for the Guardian

Your kid turns five. One day, he traces a finger over the VW insignia on your car and remarks “V and W”. A few days later, you hear him sing “Cork 96 FM” – the cheesy jingle of a local radio station, but it is pure music. Soon after, there’s a cup held under your nose and the word, “Juice.” Two weeks later your therapist brings your child into the kitchen to say, “Can I have apple juice, please?”

Life’s still far from Mary Poppins – there’s no dialogue as such, and while many people are tolerant, your partner reports unfriendly vibes from other mothers at the Jumping Beans Preschool Song and Dance Circle. Au revoir, Jumping Beans. The shoe shop lady rolls her eyes in contempt at your child’s meltdown at the foot-measuring stool, and the owner of a hair salon doesn’t hide what she thinks of such a big kid getting freaked out by buzzing clippers. Nonetheless, you are aware of your son growing into who he is. Life gets better in small increments. Your child likes standing on your feet to chop vegetables; baking; reciting long, half-clear chunks of Wes Anderson’s Fantastic Mr Fox; gazing at the sky, fascinated, through the fingers of trees; and leaping with delight at the Archers omnibus theme tune every Sunday. One day your child replaces the name “Dora” with his own name in Dora The Explorer, and gives you a crafty smile to see if you noticed – a first joke. He is entranced by the numbers on the microwave display panel, and counts the stairs in English, Spanish and Japanese. One day you notice he has scored 79,550 points on a tricky iPad game, Doodle Jump. This is 50,000 points higher than the top score achieved by any “neuro-typical” member of the household.

Time to find a primary school. You take your child to the therapist at the local care-provider for an updated needs assessment. In due course you receive a list of what a primary school will need to provide: occupational therapy, speech and language work, and a one-on-one SNA (special needs assistant) within a special needs unit. You ask which schools in the area can provide all this. The therapist looks cagey and names two schools. School A is 20 miles away, school B is 30 miles away. Over the phone the principal of school A asks whether or not your son is verbal. You say, “A bit.” The principal tells you they work with non-verbal children only, and wishes you a nice day. You visit school B, where the special needs unit has six places, though three are already filled. You realise that every five-year-old kid with autism from your half of the county has to compete for three places. The principal is impressive and her son has autism so she knows what’s needed, but the application form warns that the school “upholds the Catholic ethos” and asks for the name of your parish and priest, if applicable. It isn’t, and you doubt that 79,550 points at Doodle Jump will help a whole lot.

As you drive off, you think you can hear the distant thunk of your application form hitting the bottom of the bin, but that can only be imaginary. Later, you call the care-provider therapist to tell her you don’t think your kid has a school to go to in September: what should you do now? She says, “Well, you might hear from school B.” You say that you both know that won’t happen, and ask what she would do if the shoe were on the other foot. You badger her into admitting that she has no idea. Later, you regret it. It’s hardly her fault.

At the 11th hour the Department for Education sniffs legal action and media scrutiny, and realises it has to respond. Or maybe that’s far too cynical; maybe the policy-makers were motivated by altruism and concern. A nearby primary school is approached with a proposal to host a new unit for children with autism. The principal, whom you’ve known for a few years, is dedicated, focused and indefatigable. She agrees, and thanks to her, your six-year-old has a school when September rolls around. Everyone involved is on a learning curve, but the underfunded, underpaid team do a great job. Your kid has classmates for the first time, and by hook and by crook each student acquires an iPad. These prove to be godsends. Beside the specialist apps, the built-in video camera allows the teacher to record your child achieving goals in the classroom that you never imagined were attainable. You and your child love watching these video clips at home.

Two other things help a lot: an analogy and a book. The analogy comes via a Jewish friend’s rabbi, and compares expectations of parenthood to planning a long sojourn in Italy. Prior to your holiday, you read up about Italy, speak with experts on Italy, plan your route, gen up on Italian and anticipate the pleasures of your time there. Having a life-redefining diagnosis – like autism, Asperger’sDown’s, whatever – is like getting off the plane and finding yourself not in balmy, romantic Rome but… Schipol Airport, in Holland. What the hell? My wife and I booked our holiday in Italy, like everyone else. But time passes and the penny drops that hankering for Italy is stopping you from seeing Holland. Your attitude shifts. You begin to discover that Holland possesses its own singular beauty, its own life-enriching experiences.

The book that helped me the most to “think Dutch” about my own son’s autism was written by a 13-year-old Japanese boy called Naoki Higashida. It’s called The Reason I Jump. The author would be classed as severely autistic, and writes by pointing to a “cardboard keyboard”, one character at a time. A helper transcribes the characters into words, sentences and paragraphs. Part one adopts a Q&A format, where the author answers questions about life with his condition. Reading it was illuminating and humbling; I felt as if my own son was responding to my own queries about what it’s like to live inside an autistic mind. Why do you have meltdowns? How do you view memory, time and beauty?

For the first time I had answers, not just theories. What I read helped me become a more enlightened, useful, prouder and happier dad. Part two of the book is a story, I’m Right Here, about a boy called Shun who discovers he’s dead and can no longer communicate.

My wife and I translated The Reason I Jump clandestinely, just for our son’s therapists, but when my publishers read the manuscript, they believed the book might find a much wider audience. For me, Naoki Higashida dissolves the lazy stereotype that people with autism are androids who don’t feel. On the contrary, they feel everything, intensely. What’s missing is the ability to communicate what they feel. Part of this is our fault – we’re so busy being shocked, upset, irritated or looking the other way that we don’t hear them. Shouldn’t we learn how?

‘Living is a battle’: growing up with autism, by 13-year-old Naoki Higashida

Naoki Higashida
 Naoki Higashida: ‘What makes me smile is seeing ­something beautiful.’ Photograph: Miki Higashida

When I was small, I didn’t even know I had special needs. How did I find out? By other people telling me I was different and that this was a problem. True enough. It was very hard for me to act like a normal person, and even now I still can’t “do” a real conversation. I have no problem reading books aloud and singing, but as soon as I try to speak with someone, my words just vanish. I can’t respond appropriately when I’m told to do something, and whenever I get nervous I run off from wherever I happen to be. So even a straightforward activity like shopping can be really challenging if I’m tackling it on my own.

During my frustrating, miserable, helpless days, I’ve started imagining what it would be like if everyone was autistic. If autism was regarded simply as a personality type, things would be so much easier. Thanks to training, I’ve learned a method of communication via writing. Problem is, many children with autism don’t have the means to express themselves, and often even their own parents don’t have a clue what they might be thinking. So my big hope is that I can help a bit by explaining, in my own way, what’s going on in the minds of people with autism.

Why do people with autism talk so loudly and weirdly?
People often tell me that when I’m talking to myself my voice is really loud, even though my voice at other times is way too soft. This is one of those things I can’t control. It really gets me down.

When I’m talking in a weird voice, I’m not doing it on purpose. Sure, there are times when I find the sound of my own voice comforting, when I’ll use familiar words or easy-to-say phrases. But the voice I can’t control is different. This one blurts out, not because I want it to: it’s more like a reflex. When my weird voice gets triggered, it’s almost impossible to hold it back – if I try, it hurts, almost as if I’m strangling my own throat.

Why do you ask the same questions over and over?
It’s true, I always ask the same questions. “What day is it today?” or “Is it a school day tomorrow?” The reason? I very quickly forget what it is I’ve just heard. Inside my head there isn’t such a big difference between what I was told just now and what I heard long ago.

I imagine a normal person’s memory is arranged continuously, like a line. My memory, however, is more like a pool of dots. I’m always “picking up” these dots – by asking my questions – so I can arrive back at the memory that the dots represent.

But there’s another reason for our repeated questioning: it lets us play with words. We aren’t good at conversation, and however hard we try, we’ll never speak as effortlessly as you do. The big exception, however, is words or phrases we’re very familiar with. Repeating these is great fun. It’s like a game of catch. Unlike the words we’re ordered to say, repeating questions we already know the answers to can be a pleasure – it’s playing with sound and rhythm.

Why do you do things you shouldn’t, even when you’ve been told a million times not to?
It may look as if we’re being bad out of naughtiness, but honestly, we’re not. When we’re being told off, we feel terrible that yet again we’ve done what we’ve been told not to. But when the chance comes once more, we’ve pretty much forgotten about the last time. It’s as if something that isn’t us is urging us on.

You must be thinking: “Is he never going to learn?” We know we’re making you sad and upset, but it’s as  if we don’t have any say in it. Please, whatever you do, don’t give up on us. We need your help.

Do you prefer to be on your own?
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, or even getting on your nerves. This is why it’s hard for us to stay around other people.

The truth is, we’d love to be with other people. But because things never, ever go right, we end up getting used to being alone. Whenever I overhear someone remark how much I prefer being on my own, it makes me feel desperately lonely. It’s as if they’re deliberately giving me the cold shoulder.

Why do you make a huge fuss over tiny mistakes?
When I see I’ve made a mistake, my mind shuts down. I cry, I scream, I make a huge fuss, and I just can’t think straight about anything any more. However tiny the mistake, for me it’s a massive deal. For example, when I pour water into a glass, I can’t stand it if I spill even a drop.

It must be hard for you to understand why this could make me so unhappy. And even to me, I know really that it’s not such a big deal. But it’s almost impossible for me to keep my emotions contained. Once I’ve made a mistake, the fact of it starts rushing towards me like a tsunami. I get swallowed up in the moment, and can’t tell the right response from the wrong response. To get away, I’ll do anything. Crying, screaming and throwing things, hitting out even… Finally, finally, I’ll calm down and come back to myself. Then I see no sign of the tsunami attack – only the wreckage I’ve made. And when I see that, I hate myself.

Why do you repeat certain actions again and again?
It’s like our brains keep sending out the same order, time and time again. Then, while we’re repeating the action, we get to feel really good and incredibly comforted.

I feel a deep envy of people who can know what their own minds are saying, and who have the 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. For people with autism, living itself is a battle.

Why are your facial expressions so limited?
Our expressions only seem limited because you think differently from us. It’s troubled me for quite a while that I can’t laugh along when everyone else is. For a person with autism, the idea of what’s fun or funny doesn’t match yours, I guess. More than that, there are times when situations feel downright hopeless to us – our daily lives are so full of tough stuff to tackle. At other times, if we’re surprised, or feel tense or embarrassed, we just freeze up and become unable to show any emotion whatsoever.

Criticising people, winding them up, making idiots of them or fooling them doesn’t make people with autism laugh. What makes us smile from the inside is seeing something beautiful, or a memory that makes us laugh. This generally happens when there’s nobody watching us. And at night, on our own, we might burst out laughing underneath the duvet, or roar with laughter in an empty room… When we don’t need to think about other people or anything else, that’s when we wear our natural expressions.

 This is an edited extract from The Reason I Jump: One Boy’s Voice From The Silence Of Autism, by Naoki Higashida, translated by David Mitchell, published by Sceptre at £12.99. To order a copy for £10.39, including free UK mainland p&p, go to guardian.co.uk/bookshop.

 

 

 

David Mitchell 1

David Mitchell 2

 

 

Advertisements
Posted in asperger, autism | Leave a comment

The Guardian: about Autism 2

This is the 2nd article about autism I recommend. It was written by David Mitchell and it really talks about the importance of having access to the right information and support in order to deal effectively with autistic pupils or teens.

David Mitchell: what my son’s autism has taught me

‘Hurry!’ came the advice following diagnosis. ‘Save your child from autism before it’s too late!’ But how do you save your child from something when you don’t know what that something is?

David Mitchell
 David Mitchell: ‘Autism resists definition, vigorously.’ Photograph: Tim Kline for the Guardian

The road to understanding autism is unfinished, zigzagging and punctuated by speed bumps, the first of which is the question that transformed my life as a dad in 2008: “What is autism, anyway?” My son was three years old when he was diagnosed, but autism resists definition, vigorously. Google Down’s syndrome or Parkinson’s disease, and you’ll get a broadly agreed-upon set of causes and criteria. Google “autism”, and you get a can of worms, a minefield, academic papers and a shouting match. Despite the prevalence of phrases like “autism epidemic” and suggested “cures”, autism is not a disease (an illness caused by a known biological agent), but a syndrome – a cluster of symptoms, or the disorder associated with them. These symptoms cover a lot of tangled ground: impaired communicative and social skills; scrambled sensory processing; delayed childhood development; poor motor functions; an aversion to eye contact; tendencies towards repetitive behaviours, spinning and rocking motions. Some of these were visible in my son; just as many were not.

Confusing things further were the two best-known portraits of autism in popular culture, in the 1988 film Rain Man and Mark Haddon’s excellent 2003 novel The Curious Incident Of The Dog In The Night-Time, which depict not mainstream autism but Asperger syndrome. Was our son going to turn out like Dustin Hoffman’s savant or Haddon’s teenage mathematician? It looked unlikely. But if not them, who? There was no answer, and attempts to discern my son’s future felt as futile as they felt depressing as they felt impossible.

Autism’s symptoms vary widely from person to person, and change over time. There’s an evergreen adage: “If you’ve met one person with autism, you’ve met one person with autism.” Very true, but it was a truth that didn’t help the anguish of those first two years, when the dominant message is: “Hurry! Early intervention is crucial, before his neural pathways are set! Save your child from autism before it’s too late!”

How do you “save your child” from something when you don’t know what that something is? Or when nobody even knows what causes it?

The question I encountered from friends, family and relatives – and our second speed bump – was: “So how autistic is he?” Conditions like deafness or visual impairment can be measured on a scale. Autism laughs at scales. Our son’s diagnosis was conducted via the snazzily named Disco test: Diagnostic Interview for Social and Communication Disorders. Disco is dismal. It involves a mammoth seven hours of parental interviews and a meeting with the child, but doesn’t distinguish between what a child can’t do and what a child won’t do when asked, as far as I could tell. It seemed that a bright examiner capable of engaging a child’s attention would arrive at a different result from a tired, unimaginative examiner – implying that Disco’s truest measurement is the tester’s skill at administering Disco.

“Degrees of severity” labels are, I think, inherently subjective. Which is OK – that’s autism – but what’s not helpful is to pretend otherwise. After all, these labels may mean the difference between a decent life in an assisted-living unit and a life shuttled between borstal, homeless shelter, NHS ward and overcrowded prison cell. Furthermore, the current language of autistic degrees bring me out in a rash. “Mild” and “severe” sound like ratings for pneumonia, spicy food or crime. The common “low-functioning” and “high-functioning” bring to my mind a 1980s home computer, or the liquid metal android from Terminator 2. For personal use, I deploy a system based on my printer’s ink cartridges: yellow is at the Asperger’s end of the spectrum, cyan is in the middle and magenta is the most hardcore. “So how autistic is your son, exactly?” “Well, his sensory processing is pretty cyan these days. Speech-wise, he’s light magenta. A nice canary yellow when it comes to motor control and memory functions, mind you. Thanks for asking.”

Anyway, circa 2010 things were pretty grim in our house. My son still wasn’t talking; his eye contact was fleeting; he didn’t do bedtime; and he was prone to meltdowns, which meant an uncontrollable bout of sobbing while hitting his own head or banging it on the floor. This would occur several times a day, for up to an hour, wherever he happened to be, including the supermarket or toddler group. Sometimes the trigger was visible – being separated from his mum for more than a minute – and sometimes it wasn’t. Our special-needs support person suggested we keep a diary of when the meltdowns occurred, which wasn’t a bad idea per se, but neither was it of any practical help with what we were trying and failing to handle.

Around this time, my wife ordered a book online called The Reason I Jump. It was written by a 13-year-old boy from Chiba prefecture in Japan called Naoki Higashida. Naoki’s autism is designated as severe (I’d say “deep magenta”) and non-verbal, but he can, with intense effort, write via an alphabet grid. This is a Qwerty keyboard drawn on a card with an added Yes, No and Finished. Naoki touches the letters he needs to build up words and, eventually, sentences and paragraphs. The Reason I Jump was written this way. (There are clips of Naoki working on YouTube; sceptics can see for themselves that nobody’s hand is near his as he writes.)

As my wife read sections of The Reason I Jump aloud at the kitchen table, we recognised many of our son’s traits, and found many of Naoki’s explanations for these behaviours plausible. The book is made up of short Q&A chapters, and some of the questions were ones we badly wanted to ask our son: what’s with the head-banging? Why the tears or laughter with no visible cause? How can we help you more usefully? Naoki’s autism is, of course, Naoki’s own autism, but we found plenty of overlap with our son’s condition, and the book provided answers, corrected misconceptions and filled in blanks. Even chapters that didn’t apply to our son directly helped us by highlighting the gap between the “what you see” and the “what’s inside” of non-verbal autism. They also testified to Naoki’s ability to feel the whole gamut of human emotions and to view situations from other people’s perspectives. Before autism entered my life, I had believed the condition precluded emotional breadth and empathy: The Reason I Jump consolidated my wife’s and my suspicions that, in fact, people with autism feel what everyone else does. They just cannot show they feel it, so neurotypical people have come to think of an autistic mind as locked-in and robot.

Thanks to the book, my wife and I found ourselves modifying our interactions with our son. We engaged with him more, expected more back, and followed Naoki’s advice – even if it was as simple as, “Hang on in there and don’t give up: he’ll get there in his own time.” Our son responded positively. He began using a few words, his understanding bloomed, his self-harming dropped away and he was happier. None of this is very scientific, I agree. I can’t know for sure or prove that these changes wouldn’t have occurred anyway, and, heaven knows, bad days and bad patches still happened, still do, and always will. But The Reason I Jump helped us turn some kind of corner in our lives together.

My wife and I translated Naoki’s book into English, not exactly legally, just so we could hand out A4 copies to the people working with our son. We wanted them to know what the book had taught us about autism, and to act accordingly. Encouraged by their positive reactions, I showed our manuscript to my agent, and my UK and US editors. They thought that Naoki’s writing could find a wider audience; though it’s fair to say that nobody foresaw the English-language edition of The Reason I Jump topping bestseller charts on both sides of the Atlantic, selling well into six figures and being translated into 35 languages. An expanded edition of a more recent book by Naoki, Fall Down 7 Times, Get Up 8, also co-translated by my wife and me, will be published this month, and focuses on autism in young adulthood.

Perhaps it’s just vanity, but I like to think the success of The Reason I Jump has encouraged a readership for other books by non-verbal textual communicators with autism – “texticators”, since I’m in a word-coining mood. Notably, Ido Kedarand Carly Fleischmann in the US, and Tito Mukhopadhyay in India have also written insider accounts of life with autism. The authors concur with Naoki on some points and disagree with him on others – and this diversity enriches the literature of autism.

***

The word “autism” was first used as early as 1910, by Swiss psychiatrist Eugen Bleuler, to describe a state in which “thought is divorced both from logic and reality”. Autism as a psychiatric diagnosis, with no basis in biology, hobbled on through the 1920s and 1930s as a form of childhood schizophrenia, occasionally awarded to children whose jailers had no other label for them. In 1943, Austrian-born psychiatrist Leo Kanner nominated autism as a disorder in its own right. Kanner deserves kudos for identifying a syndrome badly in need of recognition, for naming it and for encouraging early support groups. Unfortunately, he went with the flow of mother-blaming in the 1950s and attributed autism to “a genuine lack of maternal warmth”, though he did appear to recant towards the end of his life – unlike the Darth Vader of autism infamy, another Austrian-born American, Bruno Bettelheim. This Chicago-based propagator of the “refrigerator mother” theory of autism published his hugely influential text, The Empty Fortress, in 1967. This contained such pearls as: “The precipitating factor in infantile autism is the parent’s wish that his child should not exist.” The cure was psychoanalysis for the mothers, while the children were allowed to “unshackle” themselves by being put in a room with their peers and allowed to do whatever their ids, egos and superegos told them. You can imagine how that went.

Describing Bettelheim as merely “wrong” is a kindness I don’t think he deserves, yet for years his thinking dominated the public discourse. Mothers bought into this cruel farrago because no strong counter-narrative existed, and because if they had “frozen” their children into autism, submission to the faith promised a thaw. (Bettelheim would not be the last charismatic, media-savvy doctor to attract a fierce and loyal following among autism parents who felt ignored by specialists and frustrated by the lack of answers.) Historical perspective lets us groan at Bettelheim, and feel a righteous disgust at other researchers in the 1960s, who electrocuted their test subjects with cattle prods to deter self-injury, or who dosed children’s hot chocolate with LSD. The more ethical even obtained parental consent.

The closer we get to the present day, however, the trickier it can be to discern solid science from “magical thinking” with scientific trappings. At an event at the Hay festival in June this year, my very first questioner asked me to agree that there may be a link between autism and the MMR vaccine. Now, I regret prevaricating, though if I had replied that no large-scale, peer-reviewed, duplicable research free from conflicts of interest has ever established a link, the session could well have died a noisy, messy death in Conspiracyland. Skin is thin. Being told, as an autism parent, that you’re wrong about autism feels very like being told that your ignorance is compounding your and your child’s misery. Little wonder people lash out.

So what are we still getting wrong about autism, and how do we get it right? My answers form a kind of wishlist. First up, is that we stop assuming a communicative impairment denotes a cognitive one. Let’s be wary of assuming that behind autism’s speechlessness lies nothing, or nothing to speak of. Instead, let’s assume that we’re dealing with a mind as keen as our own, and act accordingly. Talk to the person. Don’t worry if there’s no evidence he or she understands. Maybe there is evidence, but you’re not recognising it as such. If the person is there, never discuss them as if they’re not, or as if they’re only there like the coat stand is there. If they don’t notice this courtesy, no harm is done; but if they do, then someone who is often treated as a part-object, part-human, total nuisance gets to feel like a real, valid, card-carrying member of society.

My second wish is that diagnosis day and its aftermath don’t feel like a cursory death sentence with no hope of appeal. On my son’s diagnosis day, a psychologist gave us a photocopied report about how poorly our son had performed in the Disco, a platitude about him still being the same boy he was the day before; and our time was up. We went home, Googled “autism” and embarked on a two-year stress-fest of searching for a kindergarten that might take him, of searching for a home tutor, of jumping through hoops erected by a bureaucracy that feel designed to make you give up, and of chasing “cures”. (The less said about the water I ordered from Texas that had either ions added or ions taken out – I forget which – the better.)

I know that central government has forced local authorities to cut health services back to the bone, and we’re all supposed to accept this as the natural state of things. I know also that parents whose dreams for their children have just collapsed aren’t the easiest folk to deal with. But intelligent counselling, drawing on guidance from parents who have been there, would go a long way to saving the newly diagnosed from floundering as badly as I did. And, as it happens, cost very little.

The third item on my wishlist is, too predictably, better funding for education and adult care. The status quo obliges sleep-deprived autism parents and sympathetic school principals to be frontline activists, just to obtain statutory minimums. This is inhumane and illogical. Funding a special needs assistant now can create a future taxpayer. Not funding special needs education is a waste of a child’s mind. That could be your child’s mind I’m referring to, or your grandchild’s, or a future Elon Musk’s. Speech and language therapy and occupational therapy can and do make big differences, if they are frequent and regular. What the state grudgingly dispenses at present is infrequent and irregular. Better-off families pay to close the gap, if they can find a good private therapist; but what we now call ordinary hardworking families don’t stand a chance. I’ve met some great therapists working in the creaking UK and Irish state systems, but too often the state system appears to be a legal fig leaf whose main purpose is to deter lawsuits brought against education departments for providing nothing. (As an aside, to any bright young people with curiosity and empathy reading this article and wondering about a career, think about autism therapy. Demand outstrips supply, and Brexit is likely to drain the UK’s talent pool still further.)

Lastly, I ask for more big-scale, better-funded research. Much historic wrong-thinking about autism was debunked by research foundations set up by well-connected American autism parents. Bright young scientists entered the field, attracted by the grants, and a genetic component in autism was spotted. (There’s a 60-90% chance of an identical twin of someone with autism also having the condition; and 20-30% for non-identical twins. RIP, Refrigerator Mum.) More research followed, autism conferences grew in number and size, donations snowballed and finally governments got involved. Answers to the same core questions I had after our son’s diagnosis – What is autism, and can it be made to go away? – remain elusive and debatable, but every decade the questions asked get better and the research more fruitful. Autism is now a multidisciplinary field with career-building roles for biologists, pharmacologists, geneticists, psychiatrists, neurologists and a whole platoon of other -ists.

In his book Far From The Tree, the psychiatrist Andrew Solomon quotes Nobel laureate Eric Kandel: “If we can understand autism, we can understand the brain.” Solomon adds: “That is a generous way of saying we will understand autism only when we understand the brain.” True, yet this is a call to mobilise, not a reason for despondency. To study autism is to study the mind, the brain and the body; their connections and ruptures; the human genome, speech, sentience and alternative permutations of being alive. Autism research benefits not only people like my son, but stroke survivors, those living with dementia and the families who care for them, and countless others in ways not yet known. It’s a bold prize. It’s a huge challenge. Let’s rise to it.

 Fall Down 7 Times, Get Up 8, by Naoki Higashida, translated by David Mitchell and KA Yoshida, is published next week by Sceptre at £14.99. To order a copy for £11.24, go to bookshop.theguardian.com or call 0330 333 6846.

Posted in asperger, autism | Leave a comment

More on Autism

This is a very interesting article about Autism and Asperger, so I invite you to read it and reflect on it.

It is quite engaging and invites us to have a deeper look at the people around us and in our case, as teachers, our students. Autistic people can teach us a lot and we should be aware of their great capacity to inspire us!

Resultat d'imatges de Asperger Syndrome  More here!

 

Cambridge Lifespan Asperger Syndrome Service

The high-flying obsessives

What might these three men have in common? Not just brilliance but a form of autism that is only now being recognised in thousands of intelligent people.Karen Gold on the Asperger explosion

Remember the child in your class no one ever wanted for their partner? Or that furtive-looking microbiologist in your hall of residence, who never spoke but ended up getting a first? Or your train-spotting ex-boss? You probably dismissed them, more or less sympathetically, as nerds and geeks. But what if the reason they struggled on the social fringes but succeeded academically was because they had the form of autism known as Asperger syndrome?

Asperger syndrome was unheard of 20 years ago. Now it seems to be everywhere. Ludwig Wittgenstein, the philosopher, who designed and made a sewing machine at the age of 10 and was friendless and teased by his fellow students, is thought to have had Asperger. So too is long-haired, green-slippered Albert Einstein, who used to lose his train of thought in the middle of giving a lecture.

Their modern day equivalent, Bill Gates, the Microsoft chief executive and Windows inventor, has been described as having autistic-type traits: lack of eye contact, poor social skills, a monotonous voice, a prodigious memory and a tendency to rock backwards and forwards during business meetings.

Twenty years ago we thought we knew what autistic people were like. They had low IQs and limited language, they behaved bizarrely, and they were put into special schools and residential homes. Autism occurred in about one in 10,000 of the population. Since then, it has been redefined as a spectrum ranging from mild to severe – and with that redefinition has come a massive increase in numbers. Some researchers say one schoolchild in every 70 is now diagnosed with a form of autism, including children with average or higher intelligence and no difficulty learning to speak. These are the ones categorised as having Asperger.

Much of this extraordinary increase is due to teachers and psychologists looking again at children who might have been written off as loners or anti-social, and recognising the typical autistic pattern of social reticence, poor imagination, inability to see into others’ minds, emotional blankness, unusual obsessions. But unless something nasty has got into the water, the implication of finding all these extra autistic children is that there have always been large numbers of otherwise ordinary people with this cluster of symptoms, which means that an awful lot of us are walking around with AS and no idea that we have it.

Dr Simon Baron-Cohen, a Cambridge psychologist and autism expert, sees adults making this discovery all the time in his recently established clinic, the first in the country to specialise in late diagnosis of the syndrome. Their GPs have referred them because they fit a set of criteria suggesting that they have had unrecognised AS all their lives.

Some of them are terribly sad, says Baron-Cohen: “We are seeing people in their 20s, 30s and 40s. Many have awful stories to tell about being bullied at school, losing jobs, broken relationships. You see men who have meals and sex with their wives, but they don’t have an emotional relationship. Their partners will start saying something that is a clear signal for emotional support, like “I got the results of my tests back from the doctor today” and they will say “Not now, I’m watching the football.”

Since the clinic was established, Baron-Cohen has seen more than 50 adults and has a waiting list of another 20. To confirm Asperger, which is always detectable in early childhood, whereas schizophrenia or obsessive-compulsive disorder would appear in the teenage years, patients must, if possible, bring along a parent: “It can be a bit embarrassing, asking an 80-year-old mother if her 40-year-old son used to mix with the other children when he went to playgroup. But quite often you get a really clear picture. They say, ‘My child has always been a loner; at school the only people my child talked to were the teachers’. That’s a classic.”

The majority of clinic attenders are men. (Nine out of ten autistics are male). Half are married or in steady relationships. Their jobs (most are in work) are largely in computing, scientific research, mathematics and engineering. They all have obsessions: “One 35-year-old woman had 2,000 videos and knew the directors of all of them,” says Baron-Cohen. “You begin to get a picture of what these people’s bedrooms are like.”

But one man’s obsession is another’s life work. Many people with Asperger are high-achievers: one man reads dictionaries and speaks 10 languages; others are at the cutting edge of technology. Not all gain promotion to the level of their qualifications: one draughtsman had won a string of awards for his work, but remained low on the pay scale because he would not allow anyone who worked for him to stop for coffee or conversation.

Some work environments enable people with the syndrome to flourish. Richard Borcherds, professor of maths at Berkeley in California, was 38 and teaching at Cambridge when he won the Fields medal – the equivalent of the maths Nobel prize. He suspected he might have autism after reading an article about it when he was in his 30s and recognised many of its symptoms in himself. Borcherds, who describes himself as “socially inept”, knew Baron-Cohen, who assessed him for a study of Asperger high-flyers and diagnosed that he did indeed have AS. Yet his career has certainly not suffered: “I’ve spent most of my life in universities, where eccentricity is fairly common, which probably made me stand out less. Most maths departments I’ve been in have at least one person who is clearly weirder than I am.”

There are theories that whatever makes the Asperger brain function differently – and the current theory is that the right and left halves of the AS brain have insufficient “central coherence” or pulling-together power to see the overall picture – may also be of benefit in work which requires very precise attention to detail.

People may need to think like this, to a greater or lesser extent, to be the best computer analysts. That does not necessarily mean that all computer analysts have Asperger. But there are weird results from surveys of students and professionals in science and engineering showing that very large numbers – “sometimes more than one in four” – have a close relative with autism. Since autism has a powerful genetic factor, the implication is that the labs are full of people who fit somewhere on the autistic spectrum too.

But if they can live and work with Asperger, why go to the trouble of labelling them? Borcherds believes that for him, diagnosis was fairly pointless: “It might have been useful 20 or 30 years ago; maybe I could have had explicit lessons in social behaviour or something like that. But by now it seems to make little difference.”

That is not what the people attending the Cambridge clinic feel, since they or their families – several patients have been sent along by their desperate wives – are by definition seeking some kind of help. Nor is it the view of Clare Sainsbury, daughter of Lord Sainsbury, the Labour peer and science minister, who was 20 and an Oxford philosophy student when she read about Asperger and recognised herself.

She grew up, she says, bullied, depressed, convinced that she was either schizophrenic or an abandoned alien from another planet. She trained herself to perform social smiles in front of a mirror, and got away with parroting back greetings like “hello” and “goodbye” until the awful day when somebody wished her happy birthday.

“Being diagnosed was a huge relief. Finally to have a name for it, to be able to say, ‘this is how Clare is and it’s not that she’s not trying hard enough or being deliberately difficult’. I have been able to stop tortur ing myself, and it has been wonderful for my family because parents often get blamed for their children’s behaviour and it must have been very hard for them to defend the way I behaved, even if it didn’t conform to other people’s ideas of normal.”

Viewed from the majority perspective, people who fail to make eye contact are shifty or sinister. Asperger adults are constantly tailed by shop security guards, even though their inflexible mental processes make it unthinkable that they would break the law. Viewed from the perspective of an AS researcher at Yale University, the picture is rather different: “If we are autists, you guys are heterists. The diagnostic features of heterists are making lots of eye contact and overlooking details such as small coins on patterned carpets or car number plates.”

Maybe what we need is to value as well as label the differences between the ways our different brains work. Or as Temple Grandin, an American autistic woman whose obsession with cattle pens led her to become the world’s expert on humane corralling of cattle cattle, puts it: “What would happen if you eliminated the autism gene from the gene pool? You would have a bunch of people standing around in a cave, chatting and socialising and not getting anything done.”

• From the Cambridge Lifespan Asperger Syndrome Service, email sb205@cus.cam.ac.uk

Posted in asperger, autism | Tagged , , | Leave a comment

A Is For Autism (Tim Webb), 1992

 

 

Posted in autism | Tagged | Leave a comment

Liane Holliday Willey

Picture

At 35, Liane was diagnosed with Asperger syndrome, and just like that, her life zoomed into focus. Unafraid to tell it like it is, Liane became passionate about refocusing her interests on diversity training. Knowing what it is like to be one smart cookie who nonetheless struggles with multi-tasking, organization, social skills, sensory integration, literal thinking, anxiety, & rigid thinking patterns, Liane gives motivational and educational presentations that take her audiences on a whirlwind tour of how challenging it can be to survive and thrive in a society that doesn’t easily accept those who are different.

Liane holds a Doctorate of Education with a specialty in psycholinguistics and learning style differences. Liane likes to share her experiences of living with Asperger’s syndrome with audiences worldwide, bringing positive insight along with the real and not so happy memories she has gathered over the years during her stints as a university professor, writer, manure scooper, french fry maker, community volunteer, wife and mother. Whether she is talking to large groups, leading a small group seminar, writing a book or blog, or serving on a special education board, Liane’s goal is to help others understand the importance of accepting differences and individuality.

Picture

 

Liane Holliday Willey, EdD is an internationally-renowned author, keynote speaker on
​autism spectrum conditions, communications, and learning diversity.

Posted in asperger, autism, Uncategorized | Tagged | Leave a comment

Autism file: Northern Ireland

Autism Statistics in Northern Ireland

statistics.jpg

Autism is one of the most common developmental disabilities in Northern Ireland. Autism is lifelong and the exact cause is still being investigated. At present there is no known cure for Autism; however, there are a range of interventions that can help individuals reach their full potential.

 

This website offers useful info on ASD:

Autism is a lifelong disability which affects the social and communication centre of the brain. Autism affects the way an individual relates to people, situations and the immediate environment. Many inidividuals with Autism have difficulty processing everyday sensory information. They can experience hyper(over) and hypo(under) sensitivity to sight, smells, touch, tastes ad sounds.

The term Autism Spectrum Disorder (ASD) is used because Autism varies from person to person. Around 25% of people with ASD will have an accompanying learning disability. Many individuals with ASD will have average or above average intelligence, they are likely to be diagnosed with ASD, high functioning Autism or Aspergers Syndrome. Regardless of an individual’s level of functioning, all individuals with an Autism Spectrum Disorder will have problems in the areas of Social Communication, Social Skills and Social Imagination.

Asperger’s Syndrome has been described as “high functioning Autism”.

People with Asperger’s Syndrome may not have a learning disability; Asperger’s Syndrome may not become obvious until a child is older. Indeed some people can go through their whole lives having Asperger’s Syndrome and not receive a diagnosis until they are in their 40’s or older.

Hans Asperger identified Asperger’s Syndrome in the 1940’s; however, it only became widely known and researched in the 1980’s when Dr Lorna Wing gave comprehensive accounts of 34 cases.

Dr Wing described the main clinical features of Asperger’s Syndrome to be:

  • Lack of empathy.
  • Naive, inappropriate one sided interactions.
  • Little or no ability to form friendships.
  • Pedantic or repetitive speech.
  • Poor non verbal communication.
  • Intense absorption in certain subjects.
  • Clumsy and ill coordinated movements and odd postures.

People with Asperger’s Syndrome can go on to achieve a lot of things; they may have above average intelligence, they may go on to university, have a job, a family. Some people with Asperger’s Syndrome have gone on to become professors, world experts in their chosen field; an example of this is Professor Temple Grandin.

 

Check out her website at www.templegrandin.com

 

Statistics

statistics.jpg

Autism is one of the most common developmental disabilities in Northern Ireland. Autism is life-long and the exact cause is still being investigated.

Autism is not caused by poor parenting or social circumstances.

At present there is no known cure for Autism; however, there are a range of interventions that can help individuals reach their full potential.

This is relevant:

 

GP leaflet

  • More than 300 children in Northern Ireland are diagnosed with Autism every year.

  • Rates of children being diagnosed have quadrupled since 2002.

  • Autism affects four times more males than females.

  • Around 25% of individuals with Autism have an accompanying Learning Disability.

Posted in asperger, autism | Leave a comment

Donna Williams

She was a lovely person and her work on Autism and Sociology is relevant; her books are used in courses on special education & psychology.

On her blog, in fact, in her last post, she wrote:

 

As a person diagnosed with autism, I became a published author in 1991, an international public speaker in 1994 and then an autism consultant in 1996.  As an autism consultant, I have worked with over 1000 families and individuals since 1996.

This is a story about Polly told by her husband on her memorial:

Memorial speech by Chris Samuel, Polly’s husband:

Once Polly was about to fly on a plane and she asked the check-in person about getting an aisle seat so she she wasn’t surrounded by people.   The person asked if there was any special reason for this and Polly said “Because I’m autistic”.  The person looked annoyed and said “I’m sorry, but being artistic is no reason for special treatment!”.

 

Her life:

Donna Williams is an Australian born adult with autism who was assessed as psychotic at the age of 2 in 1965, labelled disturbed in the 1970s and diagnosed as autistic in her 20s in 1991.

She acquired functional speech in late childhood and went on to become a qualified teacher with an honors degree in Sociology and a degree in Linguistics. She is the author of two international bestselling autobiographies and has 10 published books including 4 text books widely used in autism education and two books of poetry and prose.

As a screenwriter, she wrote the screenplay to “Nobody Nowhere”, the first book in her 4 book autobiographical series. That screenplay is currently under option to become a Hollywood film. She is an professional artistsinger-songwriter and published poet as well as a world renowned public speaker on autism now living with her husband in Australia. In her presentations she draws not only on her own experiences but on international experience as a professional autism consultant since 1996.

http://www.donnawilliams.net .

Posted in autism | Tagged , | Leave a comment