Month: July 2013

Forget What You Know says Jacob Barnett

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Welcome Home

Here is a video I recently watched featuring child prodigy Jacob Barnett.

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ISDs – know the signs

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a diary of a mom

Ed note: The following is a spoof based on the DSM’s diagnostic criteria for Autism Spectrum Disorder.

The American Psychiatric Association’s Diagnostic and Statistical Manual-IV, Text Revision (DSM-IV-TR) 1 provides standardized criteria to help diagnose ISDs (Ignorance Spectrum Disorders).

Diagnostic Criteria for 608.00 Ignorance Spectrum Disorder as related to Autism Spectrum Disorder, among others:

Six or more items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

Qualitative impairment in perception of others who present with differences as sentient, intelligent, capable human beings as manifested by at least two of the following:

  • marked impairment in ability to overcome belief that nonverbal people (or people who struggle to communicate verbally) have nothing to say and / or no understanding of spoken language
  • failure to get past assuming that verbal language is the only language with meaning and purpose
  • a lack of spontaneous…

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Keep Cool

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It’s too hot to blog lately, so everyone please stay cool and hydrated.  I am taking a little break from WordPress until after Labor Day.  If you would like to be a guest blogger, please contact me; I’d love to have you aboard.  

Please continue to spread the word about Autism Awareness and Advocacy, enjoy the posts in the Archive and don’t forget to visit the Facebook page for Beyond Autism Awareness.  

Peace -Ed

3 Broadway Performances Set To Be Staged Especially For Those With Autism

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The Lion King On Broadway

NEW YORK (CBSNewYork) — The Theatre Development Fund has announced a new roster of Broadway performances for the 2013-14 season – specifically geared toward people with autism.

The fund’s Autism Theater Initiative will be staging a special performance of Disney’s “The Lion King” at 1 p.m. Sept. 29 at the Minskoff Theatre; “Spider-Man: Turn off the Dark” at 2 p.m. Nov. 16 at the Foxwoods Theatre, and “Wicked” at 1 p.m. March 2 of next year at the Gershwin Theatre.

The shows are presented in what the initiative called a “friendly, supportive environment” for both children and adults with autism and their families or friends. But in no way does that mean the performances are toned down or fundamentally changed, according to Theatre Development Fund director of accessibility programs Lisa Carling.

“If there are cases where there are strobe lights or sudden bursts of sound, those might be modified slightly to soften it, but overall, it’s the same wonderful performance, and we always encourage the actors to give it their all,” Carling told WCBS 880. “There’s no need to tone anything down, so to speak. Any adjustments are technical.”

Everyone involved in the performances is prepared in advance, Carling said.

“We do training sessions with the house staff so the ushers know what to expect, and the cast as well – they’re prepared. It is an atypical audience,” she said. “There’s apt to be vocalization or movement during the performance, and it in no way means that the audience is not enjoying it, They’re having a wonderful time.”

There are also extra accommodations in the lobby, she said.

“If children or adults get restless and they want to get up, stretch their legs, or have some quiet time, we have everything, you know, that anyone could need. We’ve got wonderful fidgets, very soothing; a tactile, squishee ball; coloring magazines to look at; very comfy bean bag chairs,” Carling said.

The Broadway performances especially for those with autism began in 2011, with a sold-out performance of “The Lion King.” Since then, a performance of “Mary Poppins” and a second staging of “The Lion King” also have been called a success.

Alan Hilfer, chief psychologist at Maimonides Medical Center in Brooklyn, said the effort is about making theatrical productions accessible to those with disabilities.

“The analogy here for my point would be when we began to make theaters and arenas wheelchair accessible. This is making these events accessible to a different kind of disability,” Hilfer told WCBS 880.

http://newyork.cbslocal.com/2013/07/14/3-broadway-performances-set-to-be-staged-especially-for-those-with-autism/

Autistic Man Breaks Through The Silence

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Please click the article link at the end of the post to view the original article with video -Ed

Watson Dollar went silent at age 2, then two decades later, he began to communicate with his mother, using an iPad.

JACKSON, Miss. — The last word Watson Dollar spoke before autism erased his ability to do so was “lights.”

The chubby cheeked toddler lay in his father’s arms as anesthesia, administered for an ear-tube surgery, dimmed his consciousness. Head lolling back, body going limp, Watson gazed at the fluorescent lamps above him, uttering the one-syllable noun.

Then he closed his eyes and never spoke again. That was 20 years ago.

In the two months between Halloween and Christmas of 1992, Watson had lost almost of all of his 150-word vocabulary along with an interest in the world.

His parents initially failed to notice the change, chalking up the subtle signs to stubbornness or fatigue or the ever-changing nature of a developing child.

By New Year’s, though, the difference was both inescapable and worrisome.

The smiling, inquisitive boy who’d sung and pranced around his house in Magee now sat sullen and withdrawn. He rarely spoke. Instead of saying “juice” or “outside,” Watson met his needs by tugging the nearest adult to the refrigerator or the backdoor.

Watson also stopped playing with his toys. He used to push little cars around the living room, making vroom-vroom sounds. Now he held the vehicles upside down and close to his face while silently fixating on the wheels he’d spin for hours with his tiny fingers.

By the time his pediatrician discovered fluid in his ears and recommended tubes, Watson was a different child. His parents, Pam and Donald Dollar, hoped the surgery would return him to his previous state.

“He can’t hear, that’s why this is happening,” Pam remembers the doctor saying. “As soon as we get those tubes in, everything will be fine.”

But the procedure changed nothing.

The Dollars got the dreaded diagnosis on May 17, 1993 — 10 days after his second birthday — autism — and took immediate action.

They bombarded Watson with therapy and enrolled him in Magnolia Speech School in Jackson. They enlisted the best doctors and attended the latest autism conferences. They did everything they could to loosen autism’s grip, but it wouldn’t let go.

Pam and Donald eventually accepted reality: The disorder had permanently severed communication in their only child and, in doing so, isolated him from the world. Watson was lost, and he wasn’t coming back.

His own mother often wondered, “Is he even in there?”

That question lingered two decades, until, on Nov. 11, 2011, Watson sent a postcard from the other side.

Watson awoke from sleep thirsty and plodded down the hall to the kitchen, where his mother had left a half-empty water bottle on the counter. He reached for it.

Still awake and sitting nearby, Pam quickly snatched the bottle. She was sick and didn’t want Watson to get her germs. He needed to get his own water instead.

Because she doubted he’d understand a verbal explanation, Pam grabbed the bottle and drank all its contents.

Watson became agitated and was headed toward a full-blown meltdown.

So Pam tried something she’d never before attempted. She grabbed her iPad and pulled up its keyboard, then typed, “Mom is sick, when someone is sick they have germs, germs can make you …”

Watson hesitated, then grabbed his mother’s hand and slowly typed the last word of her sentence: “sick.”

Pam couldn’t believe it. Watson not only understood, but he was able to respond — albeit slowly and while clutching her hand. Still, she wanted to see if he’d do it again.

“Mom’s water had …” she typed.

“Germs,” Watson finished.

“Mom doesn’t want Watson to get sick. OK?” she wrote.

“OK,” Watson replied.

A simple exchange by all accounts, but for Pam it was a breakthrough. This was the first conversation she’d ever had with her now full-grown son and the first tangible evidence that he was, indeed, “in there.”

She decided to press her luck.

“Is there anything else you want to tell me?” she asked out loud.

Watson grabbed her hand and typed the words she’d been waiting to hear his whole life: “I love you, Mom. Very much.”

And with that, Watson cracked a door between two worlds long ago severed by autism. That door would open again and again in the months that followed, each time revealing more of the young man who’d been trapped behind it for years.

Watson, it turns out, has been watching us all along.

His mind has cataloged a lifetime of memories that he now recalls for his mother and a few others with whom he’s comfortable enough to type. He remembers the way his preschool teachers physically restrained him and said he hated that school because of it.

“It was abuse,” he typed.

He remembers wanting to console his second-grade classmate after her father had died, but he didn’t know how. He felt sad and helpless. It still haunts him to this day.

He can name the kids who were mean to him in school, as well as those who showed him kindness.

He’s also capable of complex thoughts and is keenly aware of his disorder, as evidenced by this Dec. 13, 2011, conversation between him and his mother.

Pam: “Do you understand autism?”

Watson: “Yes, I live with it.”

Pam: “Yes, you do. You understand it better than anyone. Do you like autism?”

Watson: “No, it is hard to deal with. I wish I did not have it.”

Pam: “I know. Me too. It has to be very hard for you.”

Watson: “(I) try to really deal with my weird stuff, but it’s hard because so many things to deal with.”

Pam: “So what are the hardest things to deal with?”

Watson: “Sounds (are) too loud, and (I) can’t tell you things, like, God, I pray to get better.”

Pam: “You are getting better, every day. We can talk like we are now, and we weren’t able to do that until a month ago.”

Watson: “For a long time I wanted to talk to you, and now I can. That is great.”

Pam” Yes, it’s wonderful. I’ve wanted to talk to you for years, too. And now we can, so that means you’re getting better.”

Watson: “Really glad.”

Pam: “Me, too. Is there anything you think people need to know about autism?”

Watson: “For people (to) try to understand more. Then they will be nicer to people with autism.

Pam: “Do you remember when you got autism?”

Watson: “Yes, it was when I was 4.”

Pam: “No, it was when you were 2.”

Watson: “I don’t remember that.”

Pam: “You were talking and were very socially outgoing, and then you changed. Something happened, but we still don’t know what.”

Watson: “Really? What happened to me?”

Pam: “We still don’t know.”

People like Watson who have autism suffer deficits in social interaction, communication and adaptability.

Hallmark signs of the disorder include a lack of eye contact, limited or absent language, social awkwardness, repetitive behaviors like rocking or humming, and a fixation on a narrow set of interests.

An estimated one in 50 children has autism, and boys are four times more likely to get it than girls, according to the Centers for Disease Control and Prevention.

Some people with the disorder are considered high functioning and have the ability to talk and interact with the environment despite their differences. Others, like Watson, are labeled low functioning because they lack language and a means with which to connect to the world.

The disorder typically appears before a person’s second birthday but most likely is present from birth, according to the latest research.

Studies by doctors at the Marcus Autism Center in Atlanta reveal subtle, yet key, differences in early infancy that disrupt the entire developmental process.

Using eye-tracking technology, researchers found infants later diagnosed with autism don’t focus on the eyes when looking at a face. Instead, they look at the mouth, or they don’t look at the face at all.

That’s opposite of typically developing children who glean important social cues from maintaining eye contact with caregivers.

Researchers also found typical children enjoy connecting to others — the pleasure centers of their brain light up when they do. This joy motivates them to deepen their connections through communication.

Children with autism don’t get pleasure from connection and thus lose their motivation to communicate.

“The question isn’t ‘Why aren’t they using speech?’ We know why; it’s not rewarding to them,” said Gordon Ramsay, director of the Spoken Communication Laboratory at the Marcus Autism Center. “The question is ‘Why isn’t it rewarding?’ That’s really what we don’t understand.”

The answer lies somewhere inside the autistic brain, where mutations in any one of about 1,000 different genes disrupt normal synaptic firing, otherwise known as neural communication.

Everything we do — from talking to walking to slicing bread — requires neurons from different parts of the brain to share information, said Larry Young, director of Emory University’s Center for Translational Social Neuroscience.

When that free flow of information slows or stops, seemingly simple tasks become difficult or impossible.

Think of an orchestra. In a typical venue, you would hear each instrument playing together harmoniously. In an autistic venue, you would still hear each instrument but fail to integrate them into a coherent piece of music.

Watson’s parents say their son used to hear the full orchestra, as evidenced by video footage of the toddler interacting normally with peers and having simple back-and-forth dialogs. But for whatever reason, the instruments stopped harmonizing.

Roughly one in four children with autism experience what’s commonly called “regression,” Ramsay said. That means they lost skills that they’d already gained. The rest simply fail to develop those skills in the first place. No one yet understands why.

Either way, those on the autism spectrum experience the world as a confusing swirl of disjointed information. Those affected most severely likely give up trying to understand it, Young said, and they retreat into themselves and their narrow set of interests.

That appears to be the case for Watson, who spent most of the past two decades physically present but socially isolated.

Evident during a visit with Watson in his family’s living room this summer, the odd behavior of the young man obscures his inner world. While his parents chat with a reporter, Watson leans back in his recliner and stares at the ceiling while unintelligibly reciting the script of a favorite movie.

“Oh-oh-oh-um,” he says, his voice rising and falling with inflection. “Ahhhh! Du-sham-a-shish. Wee-eem, way-way-way. Woam.”

Sometimes he’ll shake his hands back and forth and look at them. Or he’ll flip through the pages of a Dr. Seuss book; he always carries one around.

Watson doesn’t acknowledge when the conversation turns to him and doesn’t respond to his name, which is mentioned numerous times during the course of the morning.

Only when someone directly engages him does Watson snap to attention. Then he’ll smile or follow a command. Otherwise, he seems lost, disconnected, on his own.

“What is your favorite Dr. Seuss book?”

His mom types the query on her iPad and summons Watson to read it.

Standing over her, he studies the screen and composes a reply. It takes him about one minute to type it: “Really? You yearn really (to) know?”

“Yes, I would love to know,” Pam types for the reporter. “Will you tell me?”

“Yes,” Watson types. Then he thinks for a moment. “Too hard to very much choose.”

After a few more rounds of questions, Watson starts to pace. His vocalizations become louder. He’s getting upset.

“What’s wrong?” Pam types.

“These incessant questions,” Watson replies. He sits down, and it’s clear the session has ended.

“Incessant.” Not a feeble-minded word.

For those who have known Watson the longest, his sudden communication comes as both a shock and a long-awaited chance to ask him their most burning questions.

Chaneka Roby has been Watson’s friend since first grade. She sat by him in all their elementary school classes and visited him daily when he later was placed in a separate special education room. She had always wondered whether he truly enjoyed her company or just tolerated her presence.

“That was my first question,” Roby said. “I asked him, ‘Do you like me?’ ”

Watson said yes.

Roby, who now attends Hinds Community College, discovered Watson could type after reading about it on his mother’s Facebook page. She got excited, and it wasn’t long before she found herself engaged in her own conversation with her childhood friend.

They swapped stories and shared memories. They also solved at least one mystery.

“I asked him why he bit my finger on the playground when we were in first grade,” Roby said. “I had always wondered about that. Why did he do it?”

It turns out Watson had been frustrated by Roby’s relentless urging that he go down the slide before he was ready. Eventually, he’d had enough of her prodding and bit her.

“To me, it’s amazing he can type a sentence,” Roby said. “It’s a mystery and a blessing. I wish we would have had this technology in junior high and high school.”

The first iPad hit the markets in April 2010. But while the device indeed boasts a handy keypad, typing itself has been around for decades.

So why didn’t Watson communicate on a computer or typewriter years ago?

And, furthermore, why can he type his thoughts but not speak them?

Once again, the answer lies within the brain.

Remember that disjointed orchestra?

The one where each instrument plays but can’t harmonize together?

It’s the same concept preventing Watson from meaningful speech.

The brain requires little coordination to emit a sound, to echo a word, or to recite from memory a script. “That’s like a short loop within one brain area,” Young said.

To arrange thoughts in a coherent structure and articulate them vocally requires a vast network of neurons to fire simultaneously.

Watson has the thoughts in one part of his brain, grammar in another and vocal ability and muscle movements in yet another. But none of them works together.

“It’s a miracle all these things can come together efficiently and timely to allow us to do all the things we can do as typical people,” Young said. “But if there’s a disruption in our genes that slows or impedes communication between neurons, you can throw the whole thing off in some way.”

Typing still requires some coordination, but not as much as talking or writing.

Watson needs only one finger and the sleek surface of an iPad to compose his thoughts.

Even then, he struggles. Watson initially found it easier to grab his mom’s hand and guide her outstretched finger to type words rather than extend his own. He doesn’t do that much anymore but still prefers to clutch her hand while he types with his own finger.

“Not understand how hard it is for me to really type,” he wrote.

That could explain why Watson never sought out a typewriter or computer at an early age. It’s also likely why he never initiates communication now. Someone else, usually his mother, always starts the dialog. Always.

Another reason involves the social impairment common among people with autism. Even those who can readily communicate often choose not to, said Alice Shillingsburg, director of the Marcus Autism Center’s Language and Learning Clinic.

“I work with kids who speak in full sentences but never ask you personal questions,” Shillingsburg said. “They never ask what your favorite cartoon is. That tends to be what stands out.”

Watson spends his days at home with his father while Pam heads the nonprofit Mississippi Parent Training and Information Center in Jackson.

The family lives on some 40 acres just east of Magee, where Watson and Don tend the yard, pick blueberries and go fishing.

The two are close despite their lack of communication. Like many sons, Watson doesn’t express himself as freely with his father as he does with his mother.

“We’ve tried,” Don said, referring to the iPad discussions. “It just doesn’t work with us.”

On a sunny morning in late June, the guys stroll from the house to a nearby blueberry bush. Don silently gathers the ripe fruit as Watson watches. When his father has a big handful, Watson leans his head back and opens his mouth like a baby bird. Don feeds him.

They do this several more times, until Watson has his fill, and stroll on.

When it gets too hot, father and son retreat into the one-story house where Watson grew up. Now towering over his parents at 6 feet, 3 inches, the young man disappears down the narrow hall and into his tiny bedroom.

A vast collection of Dr. Seuss books fills a floor-to-ceiling shelf and spills out into a waist-high pile near the door. Watson selects one of them and returns to the living room to watch cartoons in his recliner.

It’s a leisurely lifestyle, but one that bores the 22-year-old. While most of his peers, like Roby, are in college or working, Watson is stuck at home.

“(It’s) killing me to be by myself,” he types.

He’s lonely. He wants friends who understand him, and a job — as a “data entry person.”

His parents want that for him, too, and for the first time since his autism they feel it might be possible. But it will take time and patience, and he may never achieve full independence.

Nevertheless, life for Watson and his family has improved since he started communicating.

When Watson’s grandfather, Buddy Dollar, died in September, the family used the iPad to work through the grieving process. The young man had questions about death that likely would otherwise have gone unanswered.

His parents also recently discovered Watson’s belief in God and his desire to be baptized.

Pam recalled a recent car ride during which Watson became agitated in the backseat, rocking violently and making noises. She previously had no way of deciphering his behavior. Now she can pull over and get the iPad.

“What’s wrong?” she typed on this particular occasion.

“I want to go to Wal-Mart,” Watson replied. “You just passed it.”

Pam laughed at the memory before turning pensive. How many temper tantrums could have been avoided, she wondered, if they’d been able to communicate all along.

All the misunderstandings, all the guessing games, all the grief.

“He’s had a history of having a lot of behavioral problems,” Pam explained.

They got him into frequent trouble at school and landed him at Millcreek, a center for emotionally disturbed children.

Watson attended the psychiatric day program there for four years as an adolescent.

“It was the typical teenage rebellion,” Pam said, “but he couldn’t talk back, so he used his behavior.”

Watson’s breakthrough has raised a flurry of what-ifs, but it also has validated his parents’ decision to educate him despite his outward limitations. Years of schooling taught him how to both read and spell — two skills now vital to his communication.

If the Dollars have learned anything from this experience, Pam and Donald say, it’s to never limit someone’s potential.

“Presume competence,” Pam said. “Presume they’re absorbing everything. Expose them to the world, and never give up. He was 20 years old when his big breakthrough came. It can happen.”

http://www.usatoday.com/story/news/nation/2013/07/14/autistic-man-breaks-through-the-silence/2516527/

“Cloud Atlas” Author Learns About Autism From A Young Autistic Author

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DAVID MITCHELL: LEARNING TO LIVE WITH MY SON’S AUTISM

Looking back at the heartache – 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.’

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?)’

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’s, Down’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.’

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.

http://www.guardian.co.uk/society/2013/jun/29/david-mitchell-my-sons-autism

Combating The Stigma Of Autism

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WORKING TO COMBAT THE STIGMA OF AUTISM by Al Baker, via NYTimes.com

Parents of autistic children, like Jaewoo Kwak, 8, can face stereotypes and misconceptions in the Korean-American community.

Autism, or the fear of it, chased one Korean mother from her Queens church. “I very carefully told the mom: ‘I think your child is a little different. Why don’t you take the test for autism?’ ” said the Rev. Joy Lee of the Korean Presbyterian Church in Flushing. “She told me, ‘Oh no, my child will be O.K.’ So then she quit. After that, she did not pick up the phone.”

Ms. Ko said her own mother refused to discuss Jaewoo with relatives and friends after he was given his diagnosis.

It crushed another Korean mother — twice. First, she said, when her son received the diagnosis, and again when friends saw it as a sign that she herself was sick. To cure him, they said, she needed psychotherapy.

Sun Young Ko, of Forest Hills, whose 8-year-old son, Jaewoo Kwak, was given a diagnosis of autism 18 months ago, said her own mother refused to discuss her grandson with relatives or friends. “She’s kind of hiding,” Ms. Ko said.

Raising an autistic child is hard enough, let alone raising one in a culture in which the stigma surrounding autism still runs high. Now, inspired by a 2011 study of a South Korean city that found relatively high rates of autism, a leading advocacy group is teaming with churches, doctors, schools and news organizations in Flushing, trying gingerly to bring Korean parents around to the idea that if there is something unusual about their child, concealing it and avoiding help are absolutely the wrong things to do.

“More so than other populations, Korean-Americans really measure their own self-worth, and the worth of the family, in terms of what the child is able to achieve and what the child means to the family,” said Roy Richard Grinker, a professor of anthropology at George Washington University and the senior author of the South Korea study.

“If I have a child with autism, there is no effect on our house value, on the ability to make friends and on an ability to get promoted at work,” said Dr. Grinker, who wrote the bookUnstrange Minds: Remapping the World of Autism” about life with his autistic daughter, Isabel, now 21. “A lot of Korean families fear that.”

It is a crucial moment for autism across the United States. The number of children who receive a diagnosis of autism has been rising for years, without any consensus about why, other than increased awareness of the condition. At the same time, autism itself is being redefined: the newest edition of the country’s manual for mental disorders, released weeks ago, collapsed some categories of autism, including Asperger syndrome, under the umbrella of “autism spectrum disorder.” Some experts have predicted the change will lead to fewer diagnoses, and hence cuts in public spending on therapy and special education.

In New York City, the number of public school students classified as having autism this year, 10,199, or roughly 1 percent of enrolled students, is up 50 percent from four years ago, according to the city’s Education Department. Diagnoses among Asian students have also jumped. But while they make up 16 percent of the school system, they account for only 8 percent of those with autism diagnoses.

The South Korea study, which was financed by Autism Speaks, the same advocacy group behind the Queens effort, screened 55,000 students in the Ilsan district of the city of Goyang. Researchers found that 2 percent of them were autistic, but that two-thirds of those students had not previously received a diagnosis or any psychological or special education services. The prevalence was surprising, because it was nearly twice the ratereported in the United States, according to the Centers for Disease Control and Prevention. A similar study is under way in South Carolina.

The Korea study attributed the large number of undiagnosed cases to the stigma of autism. In recent interviews, sometimes through translators, Korean mothers of autistic children in the New York area opened up about their experiences. Several said the diagnosis strained their marriages. One, Mee Hee Kim, said it contributed to her divorce. The mothers also described the subtle ways that they and their children were shut out of normal social or familial encounters, a problem parents from many cultures report, or how they isolated themselves, retreating from invitations to dinner parties or play dates.

Some also worried that their autistic children’s siblings would struggle to find spouses in the Korean community. Ms. Ko, 42, the mother of Jaewoo, said the sadness led her to contemplate suicide, though she never attempted it.

Often, a diagnosis leads to guilt.

“In my experience, so many people ask me: ‘Did you do something wrong? Do you guys fight each other in front of the kids?’ ” said Anna Im, the mother of a 14-year-old autistic boy. “Koreans believe these little things affect the child and they become autistic.”

The outreach effort in the Flushing area, where the bulk of the city’s 90,000 Korean residents live, began with a round of interviews in the community and an adaptation of autism literature for Korean readers. In late April, the local Korean news media were briefed on the project. Then the translated autism materials were spread to 60 pediatricians, preschools and early childhood centers.

In a year or so, researchers will measure whether several early childhood agencies that contract with the city are seeing spikes in requests for help from Koreans grappling with autism. The hope is that whatever is learned about the disparities can be used to assist other ethnic groups and immigrant populations.

Jaewoo played with his sister, Goune, 5.

“We are trying to build a model, for outreach and facilitation, that would support immigrant families, minority families, to access services available from school systems and from cities and states,” said Andy Shih, an official at Autism Speaks who is managing the initiative.

As diagnoses of autism have become more common, some early intervention providers have taken advantage of the growth in public spending, and lax oversight, by billing for services that were not needed or never provided. Dr. Shih acknowledged that some businesses might “exploit parents scared and confused about how to best support their children.”

That is why, he said, Autism Speaks took care in translating and disseminating the literature on autism, and engaged only with providers recommended by the city’s Bureau of Early Intervention. “We want to get it right and make it useful,” Dr. Shih said.

Unscrupulous providers are not the only potential pitfall. Young Seh Bae, 48, who leads a committee of the Korean American Behavioral Health Association and is the mother of a 16-year-old boy with autism, said she worried that a focus on Koreans, in both the South Korea study and the Flushing effort, could exacerbate stereotypes.

“When you look at the different cultures, and compare the disabilities issues, why do you have to just look at Korea?” she said. “Why don’t you look at certain parts of the United States? What about Oregon? Or Oklahoma?”

And though the study in South Korea was “rigorous,” Dr. Winston Chung, an assistant professor of psychiatry at the Geisel School of Medicine at Dartmouth, said it should be viewed carefully because the researchers used tools designed by a Western culture to measure children in an Eastern one. Typical behaviors in a “Confucian society,” where the norms for eye contact, gesturing social reciprocity and expressing oneself are “profoundly different,” and where the skill of nunchi — measuring someone’s mood and desires without speaking — is valued, could be misconstrued as autistic in some cases, he said.

“In Korean culture, harmony is prioritized, and some kids growing up with this social pressure might be better off keeping their heads down and mouths shut, and these tendencies could be mistaken for autistic traits from a Western perspective,” said Dr. Chung, whose parents were born and live in Korea.

Still, community leaders acknowledge that resistance to autism diagnoses “is a continuous problem,” said Assemblyman Ron Kim, a Korean-American who grew up in the Flushing area.

But it is better than a generation ago, he said, when families thought autistic children were possessed, “where they were literally demonized.”

http://www.nytimes.com/2013/07/01/nyregion/in-queens-an-effort-to-combat-autisms-stigma-among-korean-americans.html?pagewanted=1&_r=0