First Published Wednesday, 27 May 2009

Charlotte Moore

Why do women make up only one in four of those diagnosed as autistic? Could it be that they are simply better at pretending not to be? Charlotte Moore meets a group of women for whom ‘normal’ is an alien language that they battle to learn

I am in Godalming, Surrey, sitting with a group of pleasant, personable women who have come together, as they do each month for an all-women’s night, to share news, views and experiences. You’d imagine that the room would be alive with a babble of voices, but it’s not. The gossipy, reciprocal flow of normal female conversation is absent, and so far not one of them has asked me, a stranger, a single question about myself or what I am doing here. The stilted atmosphere would strike outsiders as disconcertingly weird, but these women are oblivious to the awkwardness. They are autistic, and for them this is normality.

‘We are not real women according to any of the known guidebooks… [But] we are not from another planet. We tricked you… We are from right here, Planet Earth.’ So writes Judy Singer, one of 19 contributors to Women from Another Planet? (2003), an anthology written by a group of women on the autistic spectrum who met on the internet. While Singer, her co-authors, and the women gathered around me in Surrey, may not be from another planet, they do constitute a distinct minority. According to current statistics one in 100 British people has autism (I am myself the mother of two autistic boys), and one in four of those is female.

Ever since autism was first identified in the 1940s it has been accepted that autistic males heavily outnumber females. In Autism: Explaining the Enigma (2003), Uta Frith, a leading developmental psychologist at University College London, says that among those with the most severe autistic symptoms the ratio of men to women is four to one, rising to 15 to one among those with Asperger’s syndrome (a variant in which autistic behaviours are less extreme and verbal ability is higher). But she goes on to speculate, ‘It is worth considering whether girls are less likely to be detected… Girls are often considered to be more verbal and more compliant than boys in educational settings, and therefore might show better compensatory learning.’

She raises a vital question. Are women less likely to have autism, or are they under-diagnosed and slipping through the net because they are better than their male counterparts at adapting to social situations? The contributors to Women from Another Planet? believe the latter. Most of them were not formally diagnosed until adulthood, if at all. Most lead apparently ‘normal’ lives in that they study and have jobs and sometimes husbands and children. But all feel profoundly ‘different’; they write of the terrible, damaging strain of attempting to conform to social expectations.

The two psychologists who first investigated the condition (independently of each other) were Leo Kanner and Hans Asperger. The work they did more than 60 years ago set the pattern for the way we still see autism, and it happened that Kanner studied few female patients and Asperger none at all. Could it be that this led to a false assumption that autism was overwhelmingly a male disorder? And do autistic women, as Frith suggests, often fly beneath the radar because of their ability to mask their difficulties?

Certainly, social stereotyping can lead to autistic behaviour going unnoticed. A woman who depends heavily on a dominant husband and has little life outside the home may well escape scrutiny. In school, while autistic boys are typically loud, disruptive and destructive, girls can be quiet, passive and compliant, but mentally absent; and students who give no trouble are less likely to be flagged up by a busy teacher. It has also been suggested that autism could be one possible cause of traditionally ‘female’ problems such as anorexia. Christopher Gillberg of the National Centre for Autism Studies at the University of Strathclyde explains, ‘A girl may be withdrawn and uncommunicative without attracting attention, but when she develops a calorie fixation it becomes a serious problem. Counting calories may be a manifestation of autism. Some women could be going undiagnosed.’

Simon Baron-Cohen, the director of the Autism Research Centre at Cambridge, has pioneered the theory that autism is caused by a testosterone surge in pregnancy, affecting the child’s brain development, leading it to be born with an ‘extreme’ male brain – strong on systemising, weak on empathy. This, he believes, can affect both males and females. Autistic girls, he has said, often have ‘tomboy’ traits, and feel ‘more compatibility with typical [not autistic] males simply because typical males may be more willing to adhere to the linear, step-by-step form of thinking and conversation. This is echoed by the internet group: ‘We may have more in common with [non-autistic] men than we do with [non-autistic] women, for it is women who are more often the social gatekeepers, who scrutinise our manners, care more for them than for our minds, and want to keep us out of the club.’

The need, then, is growing for ‘clubs’ of a different kind, spaces where autistic women can communicate with others who share and appreciate their differences. The Godalming club which I have visited is a pioneering experiment by the careworker Bettina Stott. She had run a mixed-sex social-skills group for people with autism for some years, but two years ago, at the request of some of the female members, she started an all-women group, which meets once a month. ‘Our ladies are very vulnerable,’ she tells me shortly before the meeting starts. ‘They tend to fall in with what men suggest. In their own group they can discuss topics in a different way. It gives them a chance to talk honestly about their autism, and to learn about the way society works; they may adhere to social structures, but often they don’t understand what they’re for.’ Group meetings begin with informal socialising, then move on to a structured discussion of a topic – anxiety, empathy, bullying – guided by careworkers. Stott feels that autistic women are more able to see things from another’s point of view than autistic men, and are more emotionally responsive. Many of them have been misdiagnosed in the past with psychiatric illnesses or learning difficulties. ‘Autistic tendencies are often overlooked,’ she says.

Stott introduces me to four of the women who regularly attend the group – Lauren, Selina, Cara and Kelly. Lauren, 32, was not diagnosed until she was 23. She now lives in a supported flat, and accepts that she needs help with most practicalities, but loves it when her support workers are on holiday. ‘It’s bliss. I need time to chill out on my own,’ she says. For autistic people, prolonged social contact is exhausting, and as I talk to the girls it emerges that the group is popular because it provides contact with other women, but within a definite time limit.

Selina, 27, also speaks of valuing her own space. She lives alone, works in Sainsbury’s and keeps in touch with friends from previous jobs and from the special school she attended. She seems quite comfortable with one foot in the mainstream world, the other in that of special needs. She plays the clarinet, goes on theatre trips and watches television. But her autism has caused her trouble in romantic relationships, and when a recent boyfriend became over-controlling the careworkers from the women’s group had to step in to help. She’s now single, but hasn’t ruled out ‘meeting Mr Right’. But, I ask, wouldn’t Mr Right invade the privacy she enjoys? She smiles. ‘I don’t know. Maybe.’

On the subject of marriage Lauren says, ‘I know I’ll never be a mum,’ but 20-year-old Cara, who works part-time with pre-school children (a job she loves), is not so sure. A good-looking girl who likes parties, music and Manchester United – especially Ronaldo – Cara has also had boyfriend problems. Most autistic people find physical contact acceptable only on their own terms, if at all, and the careworkers helped Cara to understand that she could choose to say no to unwelcome advances.

Kelly, 25, well-presented with careful make-up and a cherry-red jacket, is doing a course in travel and tourism. The others seem reluctant or unable to think beyond the present, but Kelly says she has ambitions; she doesn’t like the English climate and wants to work in Spain, in the tourist industry. She has a pleasant, earnest manner, has done a particularly good job of mimicking non-autistic behaviour. However, like all the others she has experienced bullying in mainstream settings and relishes the fact that at the women’s group differences are fully accepted. ‘People pick on people who are different because they’re scared. They’re like sheep,’ she says. ‘Society wants to put you in a box.’

All four women agree it is harder for a woman with autism than for a man, though they can’t explain exactly why. This is one of the difficulties of talking to autistic people: they find it easier to talk about concrete realities – bus routes, football, a broken clothes-horse – than about issues or theories. When I ask Cara whether there are any advantages to being autistic, she says it got her to the front of the queue at Thorpe Park. I try to find out more about Lauren’s relationship with her family; she says her father is going to fix her clothes-horse, so they have ‘a bond’.

The women have few conventionally feminine interests. Selina stacks shelves in the health and beauty aisles at Sainsbury’s, but she has no particular interest in those products. All seem to lack that instinctive understanding of social behaviour that to most women comes as naturally as breathing. Nevertheless, they have found ways to operate in society, difficult though these accommodations may have been. The Godalming women’s group is an immensely useful response to a newly perceived need: to support women who, however high their academic intelligence, struggle with the social skills that most of us take for granted. More and more women like Lauren, Selina, Cara and Kelly are now seeking diagnosis, relieved to have found an explanation for a set of characteristics that in the past would have been dismissed as ‘weird’, and relieved to understand why they have had to struggle so hard to conform to normal social expectations of female behaviour.

When the first of my two autistic sons was diagnosed in 1994, someone told me that autism was more prevalent among Jews (my sons’ father is partly Jewish). This notion probably arose because many mid-century psychiatrists and psychoanalysts were Jewish, so interest in and awareness of unusual mental states was higher among Jewish families, who were therefore more likely to seek consultations for their children. Similarly, Asperger believed autism to be more prevalent amongst the professional classes, failing to see that it was simply more likely that such a parent would seek his advice. We now know that autism is not related to ethnicity, income or social class. Are we about to find that it is not as strongly linked to gender as has been supposed, that there are more autistic women out there than we imagine?

The women in the internet group certainly support a reassessment of diagnostic criteria. They want to reject the pressure to conform to a limited and limiting range of acceptable female behaviours. ‘Bear witness,’ writes Judy Singer, ‘to the violations of human rights we have suffered: the torment in the playground; the discrimination by employers on social grounds in jobs where social skills should not be part of the criteria; the pressure from families to act normal, to be more feminine, to have children.’

Understanding of autism in males has increased dramatically over the past couple of decades. Now, it seems, it is time to take a fresh look at the way autism manifests itself in women.

• *The National Autistic Society’s helpline is 0845 070 4004. For more information, visit www.autism.org.uk

http://www.telegraph.co.uk/health/women_shealth/3356496/Autistic-women-a-life-more-ordinary.htm

Why Girls with Asperger’s Might Not Be Diagnosed

More Than Just ‘Quirky’

Because they may have different symptoms than boys do, some girls with Asperger’s syndrome don’t get diagnosed.

By Jeneen Interlandi | Newsweek Web Exclusive

Nov 13, 2008

Liane Willey watched from behind a two-way mirror as doctors at the University of Kansas performed a series of psychological tests on her 5-year-old daughter. From the day the girl was born, Liane had worried about the child’s behavior: as an infant, she would not suckle. As a toddler, she bit other children and refused to let anyone hug her. Doctors had continually assured the young mother that her daughter was normal, if a bit quirky. But with each passing year, ‘quirky’ had become less apt a description. By the age of 5, she had no friends and a profound obsession with monkeys. “If another kid came to school with a toy monkey or something with a monkey picture on it, she would freak out,” Liane says. “She would try to take it away from the other kid, because she didn’t get that not everything ‘monkey’ was hers.” Liane had been a quirky child herself, and knew the difficult path that lay ahead for her daughter. “Growing up, I tried everything—psychotherapy, group therapy, antidepressants—none of them gave me a better sense of the world or my place in it,” she recalls. “For her, I wanted something that would actually work, and I wanted them to put a name to the angst once and for all.” Doctors were hoping the psychological tests would yield-up some clues.

The “Sally-Anne” test involved a simple skit: ‘Sally’ put a marble in the basket and then walked away. Once she was gone, ‘Anne’ took the marble out of the basket and put it in a box. When ‘Sally’ returned, the doctors asked where she would look for her marble. Anyone over the age of 5 is expected to know that Sally would look in the basket first, because she doesn’t know that her marble has been moved. Expecting Sally to look in the box first suggests that the test-taker doesn’t understand that other people don’t know everything they know, and vice versa. Psychologists refer to this as a “theory of mind,” and people who fail the Sally-Anne test are said to lack one, meaning they can’t anticipate other people’s thoughts and feelings. Liane’s daughter failed the Sally-Anne test, along with every other assessment meant to screen for Asperger’s syndrome, a high-functioning autism spectrum disorder, which the doctors promptly diagnosed her with. The good news was that they had caught it early.

It’s not uncommon for girls with Asperger’s to go undiagnosed well into adulthood. Like heart disease, this high-functioning autism spectrum disorder is 10 times more prevalent in males, so doctors often don’t think to look for it in females. But some experts have begun to suspect that unlike heart disease, Asperger’s manifests differently, less obviously in girls, and that factor is also causing them to slip through the diagnostic cracks. This gender gap may have implications for the health and well-being of girls on the spectrum, and some specialists predict that as we diagnose more girls, our profile of the disorder as a whole will change. Anecdotally, they report that girls with Asperger’s seem to have less motor impairment, a broader range of obsessive interests, and a stronger desire to connect with others, despite their social impairment.

But much more research is needed before those anecdotes can be marshaled into a coherent picture. “Ultimately, we might want to look for different symptoms in girls,” says Katherine Loveland, a psychiatry professor and autism researcher at the University of Texas in Houston. “But we have a lot more questions than answers at this point.” Answering those questions has proven a tricky proposition: to draw any real conclusions, many more girls will have to be studied. And that means more of them will have to be diagnosed in the first place.

Anyone who knows a boy with Asperger’s syndrome might tell you that the disorder (characterized by obsessive interests and an inability to connect with others) is impossible to miss. For starters, the things most boys get obsessed with are difficult to shrug off as quirky. Imagine, for example, a 7-year-old boy with encyclopedic knowledge of vacuum cleaners or oscillating fans but almost no friends or playmates.

Now, replace oscillating fans with something more conventional – say horses or books – and imagine a girl instead of a boy. A horse obsession, even one of frightening intensity, might fly under the radar. “Girls tend to get obsessed with things that are a little less strange,” says Elizabeth Roberts, a neuropsychologist at the Asperger Institute at the New York University Child Study Center. “That makes it harder to distinguish normal from abnormal.” That observation is consistent with a 2007 study of 700 children on the spectrum, which found that girls’ obsessive interests reflected the interests of girls in the general population; the same was not true for boys.

In addition to more socially acceptable obsessions, Roberts says, the Aspie girls she sees are more adept at copying the behaviors, mannerisms and dress codes of those around them, than Aspie boys tend to be. “From my personal experience, they seem to have a greater drive to fit in than boys with Asperger’s do,” she says. “So they spend a lot of time studying other girls and trying to copy them.” When social settings change, this can spell disaster. “As you move from high school to college, or from one group of friends to another, you have a whole new set of rules to learn,” said one Aspie woman who asked not to be named. “Not only do you lose your own identity, but if you end up surrounded by the wrong people—mimicking their behavior without understanding the motivations behind it can lead to big trouble.”

Of course, it’s not just different symptoms that stymie diagnosis—cultural conditioning may also play a role. What looks like pathological social awkwardness in a little boy can seem like mere bashfulness or just good old-fashioned manners in a little girl. “We tend to notice shyness in boys as ‘off,'” says Loveland. “In girls, we can almost see it as a good trait.” And while boys are often diagnosed when they begin expressing their frustration as aggression and find themselves in trouble at school, girls —even Aspie girls—learn to internalize their feelings, not to act out, which can make them more anxious and less noticeable at the same time.

But even as they effectively mask Asperger’s in girls, social mores might also make the disorder more harrowing for them. As they approach adolescence, girls face greater pressure to be sympathetic and empathetic than boys do. “By the time girls reach junior high, their social networks have become extraordinarily complex, and Aspie girls can’t keep up with all the nuances,” says Janet Lainhart, a doctor at the University of Utah’s Brain Institute. “Boys struggle socially as well, but their peers mature much slower so their inability to empathize is seen as more forgivable.”

Not everyone is persuaded that the symptoms of Asperger’s differ between boys and girls. Ami Klin, director of Yale’s autism research group cautions that no Asperger’s trait can be defined as gender-specific quite yet. “It’s a possibility,” he says. “But I don’t know anyone who has tested it and I can think of many exceptions to any rule you come up with about what narrow interests or other traits each gender has.”

What everyone does seem to agree on is that without diagnosis, girls are unlikely to get the support—including special education and behavioral therapy—that has proven so helpful to boys with Asperger’s. Even worse, their desperation for human interaction—combined with their inability to gauge the intentions of those around them—can make girls with Asperger’s easy prey for sexual predators. “That is a real distinction and my real concern for girls on the spectrum,” says Klin. “That they will be more susceptible to rape, abuse and drug addiction because of their social deficiencies and because they aren’t getting the right guidance.”

Despite the urgent need for more research, Klin says that scientists who study ASDs have effectively orphaned this population. Because there are so few of them, girls are often yanked from studies altogether so that they don’t muddy up the data. As a result, only a very small body of work addresses the Asperger’s gender gap, even though such studies could lead to better diagnosis of both autism and Asperger’s.

Preliminary genetic analyses suggest that autism may be caused by different genes in each gender; and at least one MRI study has found differences in the brain anatomy of boys and girls on the spectrum. Simon Baron-Cohen, a renowned autism researcher, has shown that high levels of fetal testosterone may also play a role. But that work has yet to be replicated, mainly, say Loveland and others, due to a lack of funding or interest. “A lot of people see Baron-Cohen’s work as ‘politically incorrect,'” says Loveland. “Any time you start talking about a biological basis of sex differences, you are looking at controversy.”

Meanwhile, many schools and clinics that work with children on the spectrum have begun forming girls-only clubs in an effort to build better support systems for girls with Asperger’s. Lainhart has created a group at her Utah practice. The first things her girls, who range in age from early teens to late 20s, wanted to know: how to plan a dinner party and how to hold a dance. “They really want to understand how to do these very-female things, they just need the guidance to get there,” she says.

Of course, getting that guidance depends on getting the right diagnosis early on. And it turned out that Liane’s daughter wasn’t the only one to fail the Sally-Anne test that afternoon. Liane herself had not been able to distinguish between what she knew and what Sally knew. Doctors diagnosed her right alongside her daughter. Liane says that diagnosis changed everything for her. “It was like a light bulb went off,” she says. “I was able to seek out the right kind of treatment, and after a lifetime of mimicking others, finally find my own identity.” And early diagnosis has helped her daughter (now a healthy teenager) avoid many of the pitfalls that Liane herself fell prey to. “Her experience has been totally different from mine,” she says. “She’s had special education and behavioral therapy from the time she was a young girl, and if I introduced you to my three daughters today, you wouldn’t be able to tell which one has Asperger’s.”

Source:   http://www.newsweek.com/id/168868

The Pattern of Abilities and Development of Girls with Asperger’s Syndrome

The following is an excellent article and highly enjoyable read. Though published in September, 1999, remains highly regarded and circulated.

Asperger Syndrome and Girls

The Pattern of Abilities and Development of Girls with Asperger’s Syndrome

Dr. Tony Attwood

September 1999

The overwhelming majority of referrals for a diagnostic assessment for Asperger’s Syndrome are boys. The ratio of males to females is around 10:1, yet the epidemiological research for Autistic Spectrum Disorders suggests that the ratio should be 4:1. Why are girls less likely to be identified as having the characteristics indicative of Asperger’s Syndrome? The following are some tentative suggestions that have yet to be validated by academic research, but they provide some plausible explanations based on preliminary clinical experience. It appears that many girls with Asperger’s Syndrome have the same profile of abilities as boys but a subtler or less severe expression of the characteristics. Parents may be reluctant to seek a diagnostic assessment if the child appears to be coping reasonably well and clinicians may be hesitant to commit themselves to a diagnosis unless the signs are conspicuously different to the normal range of behaviour and abilities.

The most popular special interests of boys with Asperger’s Syndrome are types of transport, specialist areas of science and electronics, particularly computers. It has now become a more common reaction of clinicians to consider whether a boy with an encyclopaedic knowledge in these areas has Asperger’s Syndrome. Girls with Asperger’s Syndrome can be interested in the same topics but clinical experience suggests their special interest can be animals and classic literature. These interests are not typically associated with boys with Asperger’s Syndrome. The interest in animals can be focussed on horses or native animals and this characteristic dismissed as simply typical of young girls. However, the intensity and qualitative aspects of the interest are unusual. Teenage girls with Asperger’s Syndrome can also develop a fascination with classic literature such as the plays of Shakespeare and poetry. Both have an intrinsic rhythm that they find entrancing and some develop their writing skills and fascination with words to become a successful author, poet or academic in English literature. Some adults with Asperger’s Syndrome are now examining the works of famous authors for indications of the unusual perception and reasoning associated with Asperger’s Syndrome. One example is the short story, “Cold” in `Elementals: Stories of Fire and Ice’ by A.S. Byatt.

Finally, the author has noted that some ladies with Asperger’s Syndrome can be unusual in their tone of voice. Their tone resembles a much younger person, having an almost child like quality. Many are concerned about the physiological changes during puberty and prefer to maintain the characteristics of childhood. As with boys with Asperger’s Syndrome, they may see no value in being fashionable, preferring practical clothing and not using cosmetics or deodorants. This latter characteristic can be quite conspicuous.

These tentative explanations for the apparent under representation of girls with Asperger’s Syndrome have yet to be examined by objective research studies. It is clear that we need more epidemiological studies to establish the true incidence in girls and for research on the clinical signs, cognitive abilities and adaptive behaviour to include an examination of any quantitative and qualitative differences between male and female subjects. In the meantime, girls with Asperger’s Syndrome are likely to continue to be overlooked and not to receive the degree of understanding and resources they need.

Reference:

Holliday-Willey, L. (1999) Pretending to be Normal: Living with Asperger’s Syndrome. London. Jessica Kingsley Publications

Women From Another Planet?: Our Lives in the Universe of Autism

Jean Kearns Miller, Editor

Mention the word autism and the room suddenly turns silent. It’s the dreaded A word.

 

People’s attention turns to late night TV public service ads declaring that autistic children are “imprisoned” by autism and need curing at all cost. Recent autobiographies have helped dispel this dire description by suggesting that autism is not a prison and that the door is unlocked and you’re free to come in. Women from Another Planet? moves beyond these autistic life stories in important ways. It’s a collection of stories and conversations, all of them by women on the autism spectrum who speak candidly, insightfully, and often engagingly about both their gender in terms of their autism and their autism in terms of their gender. It is written not just for parents and professionals, like the other works, but also to those women still searching for ways to understand the unnamed difference they live with, as well as the wider audience of discerning readers. If you enter the unlocked door of these Women from Another Planet? you may end up with a question mark or two about your planet. Is normalcy really all it’s cracked up to be?
http://www.authorhouse.com/BookStore/ItemDetail.aspx?bookid=16210

Girls Growing Up on the Autism Spectrum

Shana Nichols

With Gina Marie Moravcik and Samara Pulver Tetenbaum

http://www.jkp.com/catalogue/book.php/isbn/9781843108559

Aspergirls: Empowering Females with Asperger Syndrome

Rudy Simone

Foreword by Liane Holliday Willey

http://www.jkp.com/catalogue/book/9781849058261

Related Articles

“The Independent: Why Autism Is Different For Girls”

http://aspie-editorial.blog-city.com/the_independent_why_autism_is_different_for_girls.htm

“Autism Underdiagnosed in Women, Say Brit Boffins”:

http://aspie-editorial.blog-city.com/autism_underdiagnosed_in_women_say_brit_boffins.htm

“Asperger’s Syndrome In Women: A Different Set Of Challenges”:

http://aspie-editorial.blog-city.com/aspergers_syndrome_in_women_a_different_set_of_challenges.htm

“It’s Different For Girls(Includes Video “Aspies Don’t Have Emotions????”:

http://aspie-editorial.blog-city.com/its_different_for_girls.htm

“Girls and Asperger’s Syndrome”(1 Comment):

http://aspie-editorial.blog-city.com/girls_and_aspergers_syndrome.htm

“Girls With Autism Spectrum Or ADHD Symptoms Not Taken Seriously”:

http://aspie-editorial.blog-city.com/girls_with_autism_spectrum_or_adhd_symptoms_not_taken_seriou.htm

“List of Asperger Traits”:

http://help4aspergers.com/pb/wp_4a3112c8/wp_4a3112c8.html

“List of Female AS Traits”:

http://help4aspergers.com/pb/wp_a58d4f6a/wp_a58d4f6a.html

“Rudy Simone: I’m Right Here: Life As An “Aspergirl”:

http://aspie-editorial.blog-city.com/rudy_simone_im_right_here_life_as_an_aspergirl.htm

1. J left…

The better question is why so many people are being labeled autistic. Maybe some people don’t want to be pathologized and treated as impaired just because some people don’t understand them. You may notice that many of the greats society now tries to pathologize don’t proclaim themselves to be “aspies” and go around going, “Oh, Asperger’s awareness, Asperger’s awareness!” They’re out doing their thing and not telling sob stories about sitting alone at the lunch table and enduring some rude remarks. I’m not saying that there aren’t some legitimate “Asperger’s” cases, but going on a witch hunt is inappropriate and destructive. Except in extreme cases, let people live their lives.

First Published Thursday, 28 May 2009

By Josh Clark

It speaks for him: JW Clark, 7, who has autism, uses an iPhone application called Proloquo2go as a communication tool. By Greg Toppo, USA TODAY Leslie Clark and her husband have been trying to communicate with their autistic 7-year-old son, JW, for years, but until last month, the closest they got was rudimentary sign language. He’s “a little bit of a mini-genius,” Clark says, but like many autistic children, JW doesn’t speak at all. Desperate to communicate with him, she considered buying a specialized device like the ones at his elementary school in Lincoln, Neb. But the text-to-speech machines are huge, heavy and expensive; a few go for $8,000 to $10,000. Then a teacher told her about a new application that a researcher had developed for, of all things, the iPhone and iPod Touch. Clark drove to the local Best Buy and picked up a Touch, then downloaded the “app” from iTunes. Total cost: about $500. A month later, JW goes everywhere with the slick touch-screen mp3 player strapped to his arm. It lets him touch icons that voice basic comments or questions, such as, “I want Grandma’s cookies” or “I’m angry — here’s why.” He uses his “talker” to communicate with everyone — including his service dog, Roscoe, who listens to voice commands through the tiny speakers. It’s a largely untold story of Apple’s popular audio devices. It is not known how many specialized apps are out there, but Apple touts a handful on iTunes, among them ones that help users do American Sign Language and others like Proloquo2Go, which helps JW speak. The app also aids children and adults with Down syndrome, cerebral palsy and Lou Gehrig’s Disease, or ALS — even stroke patients who have lost the ability to speak, says its co-developer, Penn State doctoral student Samuel Sennott. Using the iPhone and Touch allows developers to democratize a system that has relied on devices that were too expensive or difficult to customize, Sennott says. “I love people being able to get it at Best Buy,” he says. “That’s just a dream.” He also says that for an autistic child, the ability to whip out an iPhone and talk to friends brings “this very hard-to-quantify cool factor.” Sennott won’t give out sales figures for the $149.99 app but says they’re “extremely brisk.” Ronald Leaf, director of Autism Partnership, a private California-based agency, says he prefers to help autistic children such as JW learn how to navigate their world without gadgets. “If we could get children to talk without using technology, that would be our preference,” he says. Clark says the app has changed her son’s life. “He’s actually communicating,” she says. “It’s nice to see what’s going on in his head.” Among the revelations of the past month: She now knows JW’s favorite restaurant. “I get to spend at least every other day at the Chinese buffet.” Source:  http://www.usatoday.com/news/health/2009-05-27-iphone-autism_N.htm

First Published Thursday, 28 May 2009

Source/Video (View Derek Performing): http://news.bbc.co.uk/today/hi/today/newsid_8069000/8069741.stm

Derek Paravicini was born premature – autistic and blind. He can barely count, can’t read Braille and yet has an extraordinary musical talent.

After hearing a piece of music once, he can play it on the piano, improvising as he goes.

He has been performing since he was about eight years old and now, at the age of 30, is preparing for his most ambitious performances so far.

Next month he will play entire concerts accompanied by a full orchestra, where he will take requests from the audience and even invite people to dictate the style in which the piece should be played. Today reporter Sanchia Berg interviewed Mr Paravicini and asked for a song request.

Derek Paravacini’s Blog:

http://derekparavicinisblog.blogspot.com/

GETTY IMAGES

The human iPod: Meet the musical savant

Derek Paravicini was born blind and with serious learning difficulties. But he only needs to hear a tune once to play it. Soon he will make his debut at the Southbank Centre, reports Chris Green

Almost 25 years ago, Adam Ockelford was giving a piano lesson to a young girl at Linden Lodge School for the blind in Wandsworth, south-west London, when a couple and their five-year-old son who were touring the school opened the door to his room.

Moments later, the little blond boy was free of his parents’ grip and had sprinted over to the piano. There he pushed Ockelford’s unfortunate pupil roughly off her stool, depositing her on the floor. “He was obviously manically determined to play, and began karate-chopping the keys, bashing them with his fists and his elbows,” he recalls. “At first I thought he was completely bonkers, but suddenly I realised that not only was he playing “Don’t Cry For Me Argentina”, he was rampaging up and down the keyboard to fit in extra chords and scales. Then I knew he was a genius, not a madman at all.”

That was in 1985. Now, Derek Paravicini is about to give his first full concert accompanied by an orchestra at a series of appearances in Bristol and the Queen Elizabeth Hall in London’s Southbank Centre.

Paravicini, now 30, is a musical savant nicknamed the “human iPod”. He was born 25 weeks premature, and although oxygen therapy saved his life he incurred brain damage and now suffers from severe learning difficulties and autism. He is blind, unable to read Braille and can barely count, let alone read music, but he possesses an extraordinary gift: he can play anything after hearing it only once. For Ockelford, now a professor of music at Roehampton University, the concerts will mark the next stage in a remarkable relationship that began when Paravicini first burst into his classroom. Since then, he has acted as Paravicini’s teacher and mentor, and has even written his biography, In The Key Of Genius.

When the pair met, Paravicini had only played on a toy organ. Ockelford had to place his pupil’s hands on top of his own, so he could feel the movements. However, before this could happen he had to solve the basic problem of getting to the keyboard.

“It took quite a few months before he would let me play his piano at all,” he says. “It was his territory, and if I tried to play a note on it, he’d hit me and push me out of the way with his head. The only way to teach him was to pick him up, shove him on the other side of the room and quickly play something before he could get back to the piano. It was a good game, because that way he could copy what I played. He didn’t talk very much, but music became a sort of proxy language. He realised he could communicate with people through his music.”

It took Ockelford 10 painstaking years to teach his pupil how to play correctly, a process he describes as “fascinating”. The pair met every day for an hour’s lesson, and like any good musician, practice made Paravicini perfect.

His blindness and other disadvantages might have slowed his progress, but Ockelford believes that his pupil’s extraordinary memory sets him apart from other classical musicians, who are constrained by the necessity of sticking rigidly to their sheet music.

“A lot of classical soloists who play from memory say it makes them feel freer, and I think that’s true for Derek all the time,” he says.

The carefree quality of Paravicini’s playing – and his talent for improvisation – makes him ideally suited to jazz and blues, and audiences across Europe and the US have been amazed by his ability.

Roger Huckle, director of Bristol’s Emerald Ensemble, the orchestra that will accompany Paravicini on his tour next month, says the pianist’s unpredictability might be nerve-wracking for the other players, but it is also undoubtedly his greatest strength. “He has no fear. Most musicians will be very aware if they play a wrong note, but that critical side of it isn’t really in Derek’s make up. If he does play something wrong he can cover it up within half a second. But having said that, I don’t think he really perceives it as making a mistake.”

Some aspects of rehearsals have nevertheless proved difficult. As he does not read music and cannot see the conductor’s baton, Paravicini has to wait for the orchestra to begin before he knows which section of the piece they are practising.

According to Huckle, the pianist’s short-term memory is so poor that he often forgets which pieces of music he is due to play at the concerts, and even with whom he is playing. “I’d like to play that at the Southbank!” he once exclaimed of a piece the ensemble had rehearsed countless times. “He once asked me: ‘Roger! Are you coming to hear the concert?’ to which I replied ‘Yes, I’m playing with you!'”, says Huckle. “It’s a curious thing that he has this massive memory for music, yet he can’t remember what he’s going to be playing next week.”

This gives the music Paravicini plays a unique freshness, as at every performance audiences will effectively be hearing a totally new improvisation. Indeed, merely listening to the pianist converse is enough to persuade most people of his musicality. Although he often repeats questions – a habit Ockelford says reflects his talent for remembering musical phrases – his voice is always upbeat and lilting. Paravicini’s lineage is also notable: he is the great-grandson of the writer William Somerset Maugham, the great-great-grandson of Dr Thomas Barnardo, founder of the children’s charity, and also the nephew by marriage of Camilla, the Duchess of Cornwall.

The concerts are likely to raise his profile, but Ockelford is convinced he will not have a problem coping: “He’s been in the media for most of his life and has always enjoyed the attention, because he likes interacting with people.”

Lost in life: Found in music

David Helfgott Australian pianist who suffers from schizoaffective disorder, his life story inspired the film Shine which turned him into the world’s most famous pianist overnight.

John Ogdon In 1973 the English pianist had the first of a series of breakdowns, thought to be caused by mild schizophrenia or manic depression. He died in 1989.

Nick van Bloss The pianist has suffered from Tourette’s Syndrome since he was seven, which causes his body to experience 38,000 tics daily. He retired in 1994 aged 26 after the convulsions got worse, but made a triumphant return to the stage at London’s Cadogan Hall last month.

Source:   http://www.independent.co.uk/arts-entertainment/music/news/the-human-ipod-meet-the-musical-savant-1691818.html

First Published Thursday, 28 May 2009

Published Date: 28 May 2009

A PUPIL from Anthony Gell School in Wirksworth has received his County Sailing Colours after becoming the Derbyshire Youth Sailing Champion.

Ben Crossdale, 16, has been sailing for five years, has sailed Topper dinghies at national and regional events and been part of the RYH North Zone squad and national JDP squad.

Those events have seen him sail on the North Sea as well as off the Welsh and south coasts and at reservoirs across the UK.

SUCCESS: Ben is pictured with his parents, headteacher David Baker and teaching assistants Carol Harrison and Cheryl Gaskin.

He said: “When I was 13, I was diagnosed with autism and because sailing helps me to relax, I have found that I can cope with other aspects of my life.”

“Sailing makes me feel free and gives me confidence. I have made lots of friends at the sailing club and have become stronger both physically and mentally. I am now sailing a Laser Rooster 8.1 which has a sail three times the size of the Topper.”

Ben has been an active member of Derbyshire Youth Sailing for several years and in 2008, in his Laser Dinghy, he became the Derbyshire Youth Sailing County Champion by gaining the best overall result in the ten event series around all of the Derbyshire sailing clubs.

This year his aim is to defend the championship and to become a qualified dinghy instructor and to help teams from Ogston Sailing Club to support the charity Sail 4 Cancer by competing in the Southport youth 12-hour race in June and the senior 24-hour race in September.

His headteacher, David Baker, was thrilled with Ben’s success:

He said: “Ben is a charming young man who has shown great determination and perseverance to do so well in such a tough sport.We are very proud of what he has achieved.”

Source:   http://www.matlockmercury.co.uk/sport/Champion-sailor-Ben-gets-County.5306980.jp

First Published Friday, 29 May 2009

1. Lisa Webster left…

Hi Dean, My friend attended the NAS conference in York on Friday & said you were amazing & very inspirational. Could i ask your advice? My son is 7 years old and has Aspergers syndrome. He has high anxierty & lots of worries. He loves life & we love him to bits. I just worry that he always has so much on his mind and worries terribly about, it seems, everything. We do worry time every night, he has a worry box in his head so he can lock them away in the day. We make up funny rhymes & use his obsessions to try & distract him. We use calming sequences too. I’m trying to get him a sensory assessment & looking to start doing some social skills training with him at home because their just isn’t anything available to help. Is their anything else I could do? Many thanks & kind regards. Lisa.

First Published Sunday, 31 May 2009

Anders Birch

‘We know we all have that twist’: Thomas Jacobsen, 27, says that working at Specialisterne has helped him learn how to deal with social situations

A pioneering company in Denmark is giving people with autism the chance to apply their skills to jobs from IT to product testing. The result is a huge success that’s about to be rolled out across Europe. Founder Thorkil Sonne tells Michael Booth how his workforce’s superhuman recall and unflinching focus could teach the rest of us a thing or two.

Thorkil Sonne and his wife already had two sons when their third, Lars, arrived in 1997, so they had plenty of experience of the behavioural quirks of growing youngsters. But as Lars entered kindergarten aged two-and-a-half, the couple began to notice a more troubling change. Lars wouldn’t play with the other children, preferring to sit alone for hours on end. He began to talk less and less, until he was virtually unable to engage in any kind of dialogue at all. Something was clearly very wrong.

“We were patient,” says Sonne. “Our older boys had taught us that each child has their pace at which they climb the ladder, but Lars seemed to be stuck on a step.” The Sonnes are Danes and, fortunately, the Danish education system is good at diagnosing childhood developmental problems. Unfortunately in Lars’s case, the diagnosis was childhood autism.

“It was scary. The first phase was denial: ‘I’ve known my child for three years, you’ve only met him for two months. Don’t come and tell me he has an incurable, life-long disability!’ Then you have a bad conscience; you remember the situations where you’ve tried to use traditional means of raising kids and they didn’t work. But it didn’t take long, reading the literature, to realise it was describing Lars to the letter and, after time, we realised that Lars was still our happy, caring boy; we just had to get to learn about his world.”

Most parents, upon learning their child has a condition like this, will read up on it, learn about the treatments, therapies and consequences and start planning for the future. Sonne went somewhat further. He became involved with his local autistic society, ending up as vice-chairman of a housing facility for people with Asperger’s syndrome, a type of autism that affects social imagination, interaction and communication. Through the housing association, he got to know an 18-year-old Asperger’s sufferer who was especially gifted with computers. “He had retired on a state pension,” says Sonne. “But I thought that was so unfair as he had valuable IT skills that I could see would be useful for software- testing, support monitoring, programming and so on.”

So, in 2004, Sonne left his job of 15 years at the Danish communications company TDC, remortgaged his house, and founded a company, Specialisterne (The Specialists), to find employment for adults with autism and Asperger’s as software and systems testers. The 18-year-old Sonne had met through the housing association was his first employee.

Five years on, Specialisterne employs 60 people, has a turnover of almost £2m, and works with Microsoft (it tested Windows XP Media Center) and CSC, among other major international companies, helping them to check information systems, databases and other highly demanding, often repetitive, number-crunching tasks. Specialisterne has won numerous business and industry awards, and now has two offices in Denmark. If current plans pan out, a new branch will open in Glasgow later this year. It is a shining model of how to turn a highly skilled yet misunderstood and underexploited element of the population – around one per cent have a diagnosis of autism, but other related “invisible disabilities”, such as ADHD (attention-deficit/hyperactivity disorder) for instance, may account for as much as 3.5 per cent of the population – into productive and integrated members of the workforce.

I am sitting with Sonne, a quietly spoken, rather studious man in his late forties, in his well-ordered office in a hi-tech industrial park on the outskirts of Copenhagen. As we talk about his son’s condition, he plucks a piece of paper from a filing cabinet. It’s a drawing his son made following a family holiday in southern Europe. I peer at the curious pyramidal temple of squares and numbers, trying to make sense of it. “It’s Europe!” I realise after a few moments. “But what are the numbers?” Sonne produces a photocopy of the schematic contents page from his European road atlas, the atlas they used on the journey south. His son had reproduced it entirely from memory. “I’ve tried to find a single mistake, but I can’t,” Sonne says, still amazed by his son’s memory.

It’s a powerful illustration of the incredible, verging on superhuman, attention to detail, recall and unflinching ‘ focus many autistic people have, whether expressed in architectural terms (as in Stephen Wiltshire’s work – he can draw a landscape after seeing it once); linguistic (autistic author Daniel Tammet is said to have learnt Icelandic in a week); or, as is the case with many of Sonne’s employees, numerical.

“There are so many different types of phones and services to be tested,” Sonne explains. “And the work is very repetitive but requires full attention all the time. Most companies use students or outsource to India or wherever. The first couple of tests they’ll do will be fine, but by the sixth, their attention wanes and it will always be the last test that’s the most important.” Aspergerians, on the other hand, relish the repetition, their focus doesn’t waver and their numerical skills are superlative. “My staff are motivated all the time. Our fault rate was 0.5 per cent, compared with five per cent from other testers. That’s an improvement by a factor of 10, which is why we can charge market rates. This is not cheap labour and it’s not occupational therapy. We simply do a better job.”

From the start, Sonne was clear that the company would operate under market conditions, and turn a profit, which made it virtually impossible to apply for government or EU support (“They just want people who will spend their money”). But, oblivious to the economic downturn, Specialisterne continues to pick up new clients largely by word of mouth. Organisations in more than 50 countries have approached Sonne to explore the idea of starting similar projects, with Norway and Switzerland likely to follow soon.

“I knew that the autistic people I met had dreams and ambitions, personalities and motivation,” he continues. “The trick was to create an environment that supported them. If you think of a high wire, suspended between two buildings, you aren’t going to take a chance and walk across it, even with a net. But if the wire was just a metre off the ground, you might try. It’s the same with our company. We created stable ground for autistic people to walk on and I see them develop self confidence and open up to new things as a result.”

Leading UK software-testing consultant Stephen Allott of ElectroMind has been acting as an unpaid adviser to Specialisterne as the company prepares to enter the UK market where, currently, only about six per cent of people with autism are in full-time employment. He is very clear on the advantages of using them: “Simply, they are better, faster and do higher-quality work than the people we can currently get from the labour market in the UK or India,” he says. “One of their guys can read a technical document the size of a book and spot inconsistencies between something on page three and page 37, which is incredibly useful. I already have clients in the UK who are interested in what they have to offer. The only thing we need to be careful about is their working environment. I know lots of companies with noisy, chaotic, open-plan offices, where the work is like fire-fighting most of the time, and people from Specialisterne wouldn’t be able to work there. That said, the environment they need is the kind of environment we should all be working in anyway.”

Remarkably, about 70 per cent of Specialisterne’s employees are stationed in client premises. I asked Sonne how easy it is for them to fit in with other working environments. “We create virtual Specialisterne environments in our clients’ offices. Everyone who will be in contact with our consultants is briefed about the conditions they require. They have to be nice to our people, avoid stressing them. In Denmark, we use a lot of irony and sarcasm, but people with autism can’t decode that. We make sure that the clients know how important it is to be direct, to outline tasks precisely and to stick to routines, particularly if any queries arise.”

“That’s how you avoid an ‘I only fly with Qantas’ freak-out?” I blurt. “Yes,” says Sonne. “We’ve never had a ‘freak-out’. In fact, saying what you mean, meaning what you say, being nice, avoiding stress are all good things in general for companies to take on board. Many have said to us that having one of our consultants has softened the atmosphere.”

It must actually be a relief to work with colleagues for whom office politics, backbiting and bitchiness are anathema. “Yes, they are a happy and loyal group, no one ever talks badly about anyone else. It’s nice to work with people who are honest, without filters. In fact I am working on a new management technique based on our experience with working conditions that are more open and direct.”

This doesn’t mean there aren’t misunderstandings from time to time. “One of our consultants was working in an office where they introduced a free fruit basket. He went straight up and took a whole bunch of bananas back to his desk. Someone had to explain that it was expected to take perhaps one or two pieces of fruit a day, and then he got it.”

It also doesn’t mean that Specialisterne’s workforce – 90 per cent of whom are male – are somehow robotic and unfeeling. “Oh no, in fact we have two employees who met at the company and are now engaged. Many socialise at the weekends and go out in Copenhagen together.”

Sonne introduced me to one of his colleagues, Thomas Jacobsen, 27. Jacobsen’s autism wasn’t diagnosed until he was in his twenties and, meeting him, you can understand why. There is a slight social awkwardness (though probably little more than you would experience with anyone confronted by an inquisitive journalist), and nothing to alert you to the fact he has endured lengthy periods of depression in his life.

“I wouldn’t say it was a relief, but it was nice to have a name for it, for my problem,” he told me of his diagnosis. “Actually, I don’t call it a problem, I call it a twist. Before, I felt I was different because I wasn’t very social, I preferred being on my own and had lots of special interests: earthquakes, tsunamis, geography, GNPs…” GNPs? “Yes, you know, the gross national product of different countries. Since I started work here, I have learnt to cope better with social interaction,

I haven’t had a depression in two-and-a-half years. I am getting more involved in bringing new ideas to the company and am part of shaping the Specialisterne Foundation [responsible for rolling out the concept to other countries]. You do have to have the right environment for people with Asperger’s to function – there needs to be an acceptance that I am special, that I might not work regular hours, that I might have down periods – but if you have that in place, we can do any job.”

Most Specialisterne employees tend to work 20- to 25-hour weeks, but Jacobsen has brought his hours up to 35. “You really blossom here. I see it with so many Aspergerians who join the company and get proper training. I have a lot of friends at the company now, and we socialise and go out together in town. We know we all have that twist.”

I begin to wonder about all those other, less number-oriented skills that about 30 per cent of higher-achieving Asperger’s sufferers display (to the extent that I rather wince to use the word “sufferer”). With a little lateral thinking, where else might fulfilling, productive roles be found for them in society? “Well, I would be very confident to know there were autistic people running air-traffic control towers,” says Sonne. “In any company, at least one to five per cent of all tasks would fit well with the skills of people with autism. This could apply to recognition patterns in the medical industry, to accounting, to banks? Of course, some experts have identified autistic traits in people such as Mozart, Da Vinci, Newton, Einstein. If they were alive today, perhaps they would be recognised as having Asperger’s, and look at what they achieved. Unfortunately, there is such an emphasis on being a team player and social skills in the workplace that there is still this resistance. But why do we all have to be like that? There should be room for other kinds of behaviour.

“My company is a showcase, but my end game is to get one million specialist people into meaningful work by providing a management model for large corporations to become attractive to people with special needs, so they know that they will be understood and supported. You know, in the UK you spend £12bn a year on the half-a-million Brits with autism. Why not get them earning that for the economy instead?”

Sonne’s hopes for his son must have changed radically from that first diagnosis, nine years ago. “Well, he can work here, but only if he wants to. He’s approaching some interesting times now as a teenager, but he is the nicest, most gentle and caring child you could imagine. It’s a pity to think he might be bullied in society because of his way of being.”

Source:   http://www.independent.co.uk/life-style/health-and-families/features/better-faster-and-no-office-politics-the-company-with-the-autistic-specialists-1693057.html

First Published Wednesday, 1 April 2009

A SUPPORT services organisation is calling on anyone interested in a career in support work to attend a recruitment open day in Swindon.

The open day is being organised by REACH Supported Living, a member of the south Wales-based Seren Group, which aims to support people to live independent, fulfilled lives.

REACH will be providing new support services for people who are labelled as challenging or on the autistic spectrum in the Swindon area and is looking to employ up to 60 people on both a full and part-time basis.

Seren Group’s head of human resources, Maxine Wiseman, said: “Despite the current economic climate, there is still a real need for good support workers.

“What’s more, we give excellent training so the positions may be suitable for people who are out of work as a result of the recession and looking for a career change.

“The benefit of attending an open day like this is that potential candidates will have the opportunity to ask any questions they have about the work in an informal environment.

“We are also hoping to conduct mini-interviews so people will know if they have been shortlisted by the time they leave.”

The event will take place on April 2 with presentations at 10am, noon, 1.30pm and 3pm at the Pilgrim Centre, Regent Circus. Visit www.seren-group.co.uk for details

Source:   http://www.swindonadvertiser.co.uk/news/4247571.Chance_to_train_as_a_support_worker/

First Published Wednesday, 1 April 2009

By Lorraine Connolly, Community Newswire

ARTS Autism Bristol, 31 Mar 2009 – 11:57

The National Autistic Society (NAS) is holding a free exhibition of artwork by adults with autism at Explore-At-Bristol’s cafe until April 24.

The exhibition, which marks World Autism Awareness Day on Thursday, uses art and photography to explore how the developmental disability affects the way people communicate with and relate to the world around them.

The artwork is displayed alongside comments from the artists and photographers, who are all affected by autism in different ways, and highlights the wide range of experiences of people with the condition.

Chris Peach, NAS regional director, said: “There are more than half a million people with autism in the UK – that’s one in 100 – and many adults with autism tell us how important art and creativity are in their lives. The variety and quality of the work on show is just incredible and I’d like to thank Explore-At-Bristol for helping us bring this exhibition to the city. We hope it will show just some of the realities faced by people with autism today.”

Selina Postgate, from Bristol, is 54 and has Asperger syndrome, a form of autism. She said: “Knowing I have Asperger syndrome has changed everything in my world, it’s made me realise who I really am and why I think differently.

“Because I’m articulate, people don’t think I need any help, but my inability to cope with day to day tasks has had a huge impact on my mental health. It took the support of an advocate to finally get me the help I need. I have personal assistants now and that has made a huge difference to my life.”

Danny Beath, 48, from Shrewsbury, who also has Asperger syndrome, is exhibiting a photograph called Children In The Mist, which was taken against the setting sun inside a mist tent at the Missouri Botanical Gardens in St Louis, United States.

He said: “When I took the photograph I felt like the outsider looking in, rather like the third misted out one in the picture.

“It’s really important to me to be able to demonstrate to the public what living with autism can feel like sometimes.

“My difficulties with social interaction and communication often make me feel like I live on the edge of things – like I’m always looking in at groups of other people.”

Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways.

Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support.

Chris added: “The services and support available to people with autism and their carers are woefully inadequate. While some people with autism may need a lifetime of specialist support, others, given the opportunity, would be able to live relatively independent lives. That’s why it’s so important that we all stand up and speak out in order to gain the right level of help, support and understanding for all people affected by autism.”

NAS, along with 20 other autism charities, is using World Autism Awareness Day to call on people across the UK to Stand Up for Autism – a theme chosen to highlight how many people are personally affected by the condition.

Celebrities including Jane Asher, Eamonn Holmes, Ruth Langsford, Michelle Collins, DJ Judge Jules and Brit award-winning band Elbow, are among those who have already pledged their support.

The NAS relies on the support of its members and donors to continue its vital work for people with autism. To become a member, make a donation or to find out more about the work of the NAS, visit the NAS website www.autism.org.uk

For more information about World Autism Awareness Day 2009 visit www.waad.org.uk.

Source:   http://www.communitynewswire.press.net/article.jsp?id=5632962

First Published Wednesday, 1 April 2009

5-Year-Old Kicked Out Of Class

PORT ST. LUCIE, Fla. — A teacher who held a vote to kick a 5-year-old autistic student out of her kindergarten classroom lost an appeal for reinstatement. An administrative law judge Tuesday upheld the St. Lucie School Board’s decision to suspend Wendy Portillo for a year without pay and remove her tenure. The school district determined that Portillo violated the state’s code of ethics for teachers and school board rules in May 2008 when she allegedly asked the class to vote whether the boy should stay in the classroom. The student, who was in the process of being diagnosed with Asperger’s Syndrome, had been referred twice to the principal for discipline problems. She lost the vote 14-to-2.

Source:   http://www.clickorlando.com/education/19062342/detail.html#-

First Published Thursday, 2 April 2009

Some of the most vulnerable people in society will be better protected against abuse and poor care as a result of new legislation coming into force today.  People who lack capacity in hospitals and care homes will now be protected by a new law known as the ‘Mental Capacity Act Deprivation of Liberty Safeguards’.

The new law introduces new safeguards, so that, if a care home or hospital needs to deprive someone of their liberty for their own safety or wellbeing, they must now apply for permission. The law only applies to people in care home and hospital settings who are unable to make decisions on their own care or treatment and who need to be deprived of their liberty in their own best interests to protect them from harm.

The new safeguards only make it lawful for a person to be deprived of their liberty, based on a rigorous, standardised assessment and authorisation process. It gives people the right to challenge any decision to deprive them of liberty, a representative to act for them and protect their interests and the right to have their status reviewed and monitored on a regular basis.

Care Services Minister Phil Hope said:

“Vulnerable people will now have rights where previously they had none. Before this law came in, care homes or hospitals were able to lock someone up or sedate them without their consent, without that person having any kind of right to appeal or protest.

“This will improve care. The safeguards will flush out poor care and prevent people from being deprived of liberty in a care home or hospital unless it is absolutely necessary for their own safety. It is absolutely right to provide an independent legal framework so that vulnerable people are protected from potential abuse.

“This law will only be used as a last resort where it is necessary to keep a person safe and all other options have been exhausted. Protective care must be the exception and not the rule.”

These safeguards mean that, if a hospital or care home wants to deprive someone of their liberty to keep them safe from harm, they must apply to the local health trust or council for permission. This triggers a series of six assessments carried out by trained assessors. These are:

* The deprivation of liberty is in the person’s best interests to protect them from harm and is a reasonable response to the likelihood of the person suffering harm and the likely seriousness of that harm.

* The person must be over 18.

* The person must have a mental disorder.

* The person must not be subject to a requirement of the Mental Health Act. * The person must lack the capacity to consent to their own care or treatment.

* The authorisation must not conflict with an advance decision made by the person; or valid decision made on the person’s behalf by a donee of a lasting power of attorney or a deputy appointed for the person by the court.

Only if all these criteria are met will an authorisation be granted. At any stage, the person or their representative will be able to appeal against their deprivation of liberty to the Court of Protection. In an emergency, the hospital or care home can issue an urgent authorisation, for seven days, which speeds up the normal process of authorisation.

It is expected that there may be around 21,000 applications in the first year with around 25 per cent being authorised. So twenty one thousand people are expected to benefit from the new safeguards – both those whose applications are authorised and those where there will be no authorisation. The overall benefit is more safeguards for all with enhanced scrutiny of the care people receive in care homes and hospitals.

The legislation was welcomed by the National Autistic Society, the British Institute of Learning Disabilities (BILD) and Action on Elder Abuse.

Mark Lever, National Autistic Society (NAS) Chief Executive said:

“Since a man with autism was deprived of his liberty against his will in 1997, we have been campaigning, along with his carers, to stop this kind of injustice from ever happening again. Autism affects over half a million people in the UK and many are prevented from enjoying the same rights and freedoms as the rest of society due to a lack of awareness and understanding. These new safeguards are a much needed step forward in protecting people with autism from discrimination and ensuring those affected by this complex disability have control over their own lives.”

Keith Smith, Chief Executive of the British Institute of Learning Disabilities said:

“The Deprivation of Liberty Safeguards are the way to give people who lack capacity the special protection they need. The British Institute of Learning Disabilities have been working with the Department of Health on this project and welcome the launch of the Safeguards as part of valuing and protecting the rights of people with learning disabilities”

Gary Fitzgerald, Chief Executive of Action on Elder Abuse said:

“Action on Elder Abuse warmly welcomes the introduction of the new safeguards. We believe that they will provide an essential protection for many of the most vulnerable members of our society. We have worked closely with a number of stakeholders in the run up to this launch and look forward to continuing this work as the impact of the safeguards becomes clearer”

“We hope that the new safeguards will herald a fresh debate about the care we offer to adults with so called challenging behaviour. The new safeguards and the principles of the Mental Capacity Act should provide the basis by which services are commissioned, purchased and provided.”

Notes

The Mental Capacity Act Deprivation of Liberty Safeguards (MCA DOLS) came into force on 1 April 2009.

They amend a breach of the European Convention on Human Rights and provide for the lawful deprivation of liberty of those people who lack capacity to consent to arrangements made for their care or treatment in either hospitals or care homes, but who need to be deprived of liberty in their own best interests, to protect them from harm.

Primary Care Trusts (PCTs) and local authorities (designated as ‘supervisory bodies’ under the legislation) will have statutory responsibility for operating and overseeing the MCA DOLS whilst hospitals and care homes (‘managing authorities’) will have responsibility for applying to the relevant PCT or local authority for a Deprivation of Liberty authorisation.

Source
Department of Health (UK)

Source:   http://www.medicalnewstoday.com/articles/144581.php