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Archive for January 19th, 2011

First Published on AE Monday, 6 April 2009


By Laura Collins
Last updated at 1:02 AM on 05th April 2009


An NHS trust has been told to apologise to Channel 4 newsreader Alex Thomson and his family after admitting that it changed his son’s diagnosis under pressure from council officials.


An official inquiry has already found that the trust overturned its expert assessment that the boy was autistic – at the behest of the council, which was reluctant to meet the full cost of caring for him.


Alex Thomson

Victory: Alex Thomson with partner Sarah Spiller and twins Henry, right, and George in 2007


Now, following a three-year battle, Mr Thomson and his partner Sarah Spiller are complaining to Education Secretary Ed Balls about the way eight-year-old Henry was treated. They are also considering legal action against the trust.


The case will strike a chord with thousands of parents who fear that councils are saving money at the expense of disabled children.


Mr Thomson, 48, and Ms Spiller secured the backing of the Healthcare Commission – the official ‘watchdog’ for the health system – which criticised the Princess Alexandra Hospital NHS Trust in Essex and said that it should apologise. Ms Spiller told The Mail on Sunday that she is yet to receive the full apology.


Henry and twin George were born in 2000 and Henry’s problems became apparent shortly before his third birthday. Ms Spiller, also 48, said: ‘He was diagnosed with an aggressive epilepsy. We were told then that Henry might have severe learning difficulties and would need a great deal of help at school.


‘When he was diagnosed as being on “the autistic spectrum”, we were not surprised, even though the news was shattering.’


After an assessment by an educational psychologist at Essex Local Education Authority, the LEA offered limited one-to-one help for Henry, so the couple started paying for a special programme at school.


But they returned to Essex LEA hoping that, in light of the ‘autistic spectrum’ diagnosis, they would reassess his needs. Ms Spiller said: ‘Instead of them re-examining Henry, we were told that our paediatrician had decided that he did not have autism after all.’


It took a bruising 14-month legal fight to have their son’s disabilities fully recognised. Eventually, the LEA settled at a special needs tribunal in March 2007, agreeing to fund a full autism programme for Henry.


But six months later, his consultant paediatrician discharged him from her care, claiming the parents had made it impossible for her to continue.


The couple took their case to the Healthcare Commission – now part of the new Care Quality Commission.


In its finding, the commission said the trust should apologise to the couple, adding that they did not consider the explanation the trust had given was ‘accurate or adequate’.


Ms Spiller said: ‘It seems that the LEA rings the doctor and the doctor says he’s not autistic at all. A miracle cure! In a letter the chief executive of the trust stated that the paediatrician “admits that she was under some degree of pressure from the education officer to withdraw her diagnosis”.’


A trust spokesman said it has apologised to the couple and that it has reviewed its procedures.


A spokesman for the education authority said: ‘We have not been given access to the report and are therefore unable to comment.’


Source:   http://www.dailymail.co.uk/health/article-1167554/Autism-specialist-changed-diagnosis-newsreader-Alex-Thomsons-son-pressure-schools-chiefs.html?ITO=1490


NHS trust apologises to newsreader after changing son’s autism diagnosis


An NHS trust has admitted it changed the diagnosis of a Channel 4 newsreader’s autistic son under pressure from council officials.


NHS trust apologises to newsreader after changing son's autism diagnosis: Alex Thompson
Alex Thompson Photo: CHANNEL 4

The Princess Alexandra Hospital NHS Trust in Essex has been told to apologise to Alex Thomson and his family after it wrongly overturned its assessment that the boy was autistic.


An official inquiry found that it had done so at the request of the council, which was reluctant to meet the full cost of caring for him.


After a three-year battle Mr Thomson and his partner Sarah Spiller are complaining to Education Secretary Ed Balls about eight-year-old Henry’s treatment. They are also considering legal action against the trust.


The Healthcare Commission, the official NHS watchdog, has criticised the trust and demanded an apology.


Henry and his twin brother George were born in 2000. Henry was diagnosed with an aggressive epilepsy by the trust after his family noticed behavioural problems shortly before his third birthday.


Henry was also given an assessment by an educational psychologist at Essex Local Education Authority. The LEA then offered only limited one-to-one help for Henry, so the couple started paying for a special programme at school.


But after receiving the “aggressive epilepsy” diagnosis they returned to Essex LEA hoping that Henry’s care would be reassessed.


Ms Spiller told the Mail on Sunday: “Instead of them re-examining Henry, we were told that our paediatrician had decided that he did not have autism after all.”


It took a 14-month legal battle to have their son’s disabilities fully recognised after the LEA agreed, at a special needs tribunal in March 2007, to fund a full autism programme for Henry.


But six months later, his consultant paediatrician discharged him from her care, claiming the parents had made it impossible for her to continue.


The couple took their case to the Healthcare Commission, now part of the new Care Quality Commission, which found that the explanation the trust had given was not “accurate or adequate”.


Ms Spiller said: “In a letter the chief executive of the trust stated that the paediatrician “admits that she was under some degree of pressure from the education officer to withdraw her diagnosis”.”


Mr Thomson said: “The whole process has been extremely stressful for our family. Looking after a child with special needs is difficult enough as it is without having to fight a legal battle with the NHS and the local authority to get the care he deserves.


“We are certainly not the only family to have gone through this. It is happening up and down the country and it has got to be stopped.”


A spokesman for the trust said: “The trust has been in recent communication with the family and we have apologised. We can confirm that we have reviewed our procedures in the light of national guidelines and the need to continue to develop the best possible local practices.”


A spokesman for the education authority said: “We have not been given access to the report and are therefore unable to comment.”


Source:   http://www.telegraph.co.uk/health/healthnews/5109442/NHS-trust-apologises-to-newsreader-after-changing-sons-autism-diagnosis.html



First Published Monday, 6 April 2009


Published: April 6, 2009

When my husband and I were told that our son Jonah’s autism was “untreatable,” we made up our minds to prove the experts wrong.


That was 22 years ago.


We were young and energetic, and the developmental gap between 3-year-old Jonah and his peers, while obvious, was not glaring.

With no other children to care for at the time, we made helping Jonah the focus of our lives. Every exchange would become a lesson, every experience a tutorial.


Jonah cared most about food (and still does), so I’d go to the grocery store with a list and an agenda, hoping to use that passion to teach him essential concepts. I would follow his gaze and point out colors (red apple) and shapes (round cookie).


When he turned away from such lessons, despite our most animated efforts, we tried everything else we could think of. Nothing was too difficult or too expensive. We gave him vitamins and restricted his diet. We introduced communication boards and arranged sensory integration therapy. We had him wear headphones to normalize his hearing and tried other snake-oil treatments no thinking person would consider.


But each hope was followed by disappointment. We might as well have been chasing butterflies with a torn net.


By the time Jonah reached his teens, we were worn out and frustrated, not very far from where we’d started. We faced the specter of hopelessness and a plethora of unanswerable questions.


How different was Jonah from other children with autism? Would he have been better off had we not tried all that we did? Or would getting off the interventional roller coaster mean that we had given up?


Though we had been desperately trying to teach him, we had to concede that Jonah was no student. What we wanted him to do had little to do with what he did. If he didn’t want to do something, he would drop to the ground and refuse to budge.


So we decided to back off and began taking cues from him.


We did the same activities as in the past, but without a checklist of goals. Until then, he had never been able to enjoy the sensory pleasures of his beloved food magazines without our subjecting him to a monologue about what he was looking at. Now he was finally free to enjoy things for their own sake.


Not long ago, I came across a basement copy of “Cinderella.” It reminded me of a time when he was 5, when I last tried to read it to him. Well, not read, exactly; Jonah has always had a low tolerance for traditional reading, and stories must be sung or recited rhythmically.


As I sang “Cinderella,” he rolled on the floor, seemingly oblivious to the story. Still, I clung to the idea that I might be able to engage him, so I left a sentence for him to complete.


“The clock struck 12,” I sang off key, “and Cinderella ran down the palace steps, leaving behind a glass … .”


He continued rolling while I waited to hear him say “slipper.”


At last he finished the sentence for me. “Of milk,” he said.


I smiled, and I’m smiling still. For Jonah had made a student of his teacher. I would never again be able to read or think of “Cinderella” without seeing a tumbler of milk on the palace steps.


Jonah turned 25 last fall, and when I look at him I can’t help wondering if the past years weren’t some heaven-directed scheme meant to humble us and teach us the value of acceptance. Understanding that we couldn’t change him had changed us.


His future, for the most part, is set — in a nearby home with a caring staff — and I am grateful that he has some of the same things I want for my other two children: love, safety, physical comfort and access to favorite activities.


He remains a man of very few words. But though it took us years, we have finally learned that there was something to hear in his silence.


Annie Lubliner Lehmann, a writer in Michigan, is the author of “The Accidental Teacher: Life Lessons From My Silent Son.”


Source:   http://www.nytimes.com/2009/04/07/health/07case.html?_r=1&ref=health



First Published Tuesday, 7 April 2009


Tuesday 07 April 2009


University of Otago researchers have discovered a new mechanism which contributes to subtle differences between male and female brains and behaviours.


Neurobiologists Associate Professor Ian McLennan and Dr Kyoko Koishi’s findings are published today in the prestigious US-based scientific journal, the Proceeding of the National Academy of Science (PNAS).


They found that male mice lacking a hormone called Müllerian Inhibiting Substance (MIS) show subtle changes in their brain anatomy, and their behaviour is more akin to female mouse behaviour.


In both appearance and sexual behaviour these mice are typically male, but their non-reproductive behaviours are more feminine. For example, male mice are known to explore a new environment more extensively than female mice. Yet, male mice with no MIS showed significantly less inclination to explore.


Associate Professor McLennan says people tend to think of the obvious differences in sexual anatomy when thinking of “males” and “females”.


“However, sex differences occur throughout the entire body. Outside of the primary reproductive organs, the range of male and female characteristics overlap, creating what we call ‘sex biases’ that actually only exist as a generalisation, at the level of the population, such as men being taller than women. This is not always the case, but is an accepted difference between men and women.


“The sex-biases in the body do not define a person’s sex or sexuality. The brain is one of the organs with the greatest sex biases, giving rise to many subtle differences in the behaviour of the sexes. Empathy, for example, has a female bias, but some of the greatest men are empathetic. Likewise, girls engage in less rough and tumble play than boys, but a boy who shuns rough and tumble play is still a boy.”


“While our research is still very new and has only involved mice to date, it indicates that MIS plays a much broader role in shaping the non-reproductive behaviours of males – such as, the male tendency to explore and spatial processing. But further work is needed to determine which human traits are regulated by MIS.”


Associate Professor McLennan says the discovery of the mechanisms underlying gender-linked characteristics edges science towards a greater understanding of human diversity.


“The challenge is not just to understand how we develop as women or men, but to also comprehend why the male population encompasses the warrior, the poet, the scientist and wonderful blends of these extremes.”


The findings also have implications for research into brain disorders, many of which are more common or more severe in one or other of the sexes.


“Females are more prone to developing anorexia and Alzheimer’s disease, whereas ADHD [Attention Deficit Hyperactivity Disorder], anti-social personality and motor neurone disease have a male bias.”


Associate Professor McLennan says the presence of sex-biases in brain disorders suggests that the subtle differences between the brains of males and females alter the course and/or presentation of brain diseases.


“This provides a route to explore the mechanisms that underlie brain disorders and options for the development of new therapies, some of which may be male- or female-specific.”


Scientists have been aware of MIS, which only occurs in men, for about 100 years. But it was always thought to have a single function in male development – to prevent the formation of a uterus. However, the Otago research indicates that MIS has a wider influence than previous thought.


“The role of MIS does not however diminish the importance of societal influences. While MIS may determine some male characteristics, the totality of a given man is a result of complex interplay between MIS, other biological factors and the social world in which he lives,” Associate Professor McLennan says.


The research was supported through a $750,000 Marsden Fund grant and an Otago Research Grant.


Postdoctoral fellow Dr Andrew Clarkson (Neurological Foundation), doctoral students Pei-Yu Wang and Floriane Imhoff, undergraduate student Anna Protheroe and technician Nicola Batchelor were key contributors to the research.


For more information, contact


Associate Professor Ian McLennan
Department of Anatomy & Structural Biology
University of Otago
Tel 64 3 479 7346
Email ian.mclennan@stonebow.otago.ac.nz


Human Brain

Background notes:


Many behavioral traits, while not the exclusive providence of females or males, are more strongly associated with one sex. The Otago researchers’ new work in mice reveals that the cause of these sex-linked behavioral traits goes beyond testosterone, bringing to light a new role for the hormone Müllerian Inhibiting Substance (MIS).


Testosterone imparts the dimorphic nature of the neurons that control sexual function differently in males and females, but testosterone is not present during the most extensive period of foetal brain development.


To determine what else might be contributing to sex-linked behavioral traits, the researchers investigated the potential role of MIS. MIS is responsible for regression of the Müllerian ducts, or uterine precursors, in male fetuses. While its level in males remains high until puberty, its further function is unknown. The researchers found that most neurons in mice have an MIS receptor.


They then charted the behaviors of male and female mice missing the gene for MIS or its receptor. Male mice missing either of these, while still undoubtedly male, showed a feminisation of some behavioral traits implicating a role for MIS well beyond gestation.


A list of Otago experts available for media comment is available elsewhere on this website.


Source:   http://www.otago.ac.nz/news/news/2009/07-04-09_press_release.html



First Published Tuesday, 7 April 2009


Bondi Beach Sunrise

Links to the latest A4 Update are on the webpage http://a4.org.au/a4/updates/2009.


The links to download the files are:


MS Word
http://a4.org.au/a4/webfm_send/107
PDF
http://a4.org.au/a4/webfm_send/108


Previous A4 Updates are available for downloading from the A4 website (see http://a4.org.au/a4/publications).

A4 has a new website. Please check it out … and if you have not done so already, it would be great if you re-register with A4 on the new website.


First Published Wednesday, 8 April 2009


Japanese Wine

By Kyung Lah

CNN


ASHIKAGA, Japan (CNN) — When Bruce Gutlove holds up his vineyard’s finest bottle of chardonnay, he sees the clarity, senses the anticipated crisp taste, and savors the hard summer of tending to his grapes.


“Delicious,” he said proudly, as the managing director of Coco Farm & Winery. “Hopefully people will buy it and think it is a good bottle of wine, but there is a lot going on behind the bottle itself that we think about when we measure what we have done.”


Critics in Japan call Coco’s wines some of the finest made in Japan, a country known for overly-sweet, unremarkable vintages.


It is a compliment that means more to Gutlove than the obvious, for the staff of this unique winery is made up of developmentally disabled and autistic people. More than 100 developmentally disabled people work to create Coco Farm and Vineyard’s wines.


Most of them live full-time at the vineyard, which is also a school for the developmentally disabled. The philosophy is that hard work and diligence will help improve their lives. Video Watch a tour of the winery »


Gutlove expects nothing less. A winemaker from California, he arrived at Coco Winery as a consultant, planning on a stay of three months. He had no experience with the autistic or developmentally disabled. At the end of the three months, he decided to stay and keep working on the wine.


That was 20 years ago.


What made him stay, he said, were the students. “Seeing the passion and their desire to create something of worth for other people is very, very impressive.”


As far as the pairing of autism with winemaking, it is a natural fit.


“Autistic people are very detail-oriented. They like the repetitive work and so some of this works very, very well with their personalities.”


There are no government statistics on the number of people who are autistic in Japan, but the Japan Autism Society believes that number may be more than 1 million.


About 67 million people worldwide are affected by autism, according to the World Autism Awareness Day Web site. April 2 of each year has been declared World Autism Awareness Day by the United Nations General Assembly.


There are many schools and work programs for autistic persons in Japan, in addition to non-profit organizations that help.


Coco Farm & Winery is different not only in the products it produces for commercial sale in Japan, but also in that it operates with a mix of income from sales of the wine, grants from the government, donations, and tuition from the families of its students.


The students are paid a “wage” which is then returned to the vineyard as “rent” for their lodging.


Machiko Ochi, the daughter of the creator of Coco Farm & Winery, said the success of the vineyard and the students has been in part Gutlove’s lack of formal training with the disabled.


“Bruce considers all of the residents colleagues,” she said. “This is a big distinction. Treated as equals, the residents meet his expectations on the job.”


Creating the chardonnay Gutlove is so proud of was not easy, especially in Japan’s harsh climates.


Too cold in the winter and too hot in the summer, the grapes used to rot on the vine. The terrain of the vineyard itself is too steep for machinery, so the students have to tend to the vines by hand.


But Gutlove said the students did not let the setbacks stop them from meeting his expectations. Even when Gutlove would get discouraged, the students kept pushing forward.


Hiromitsu Watanabe, 28, is one of those students. When he first arrived at Coco Farms & Winery several years ago, his counselors said he could not communicate with anyone. Today, he is thriving in his new environment and talking non-stop. He told CNN his favorite job was putting on the labels and that he makes red wine.


Seeing Watanabe’s turnaround, in addition to the success of his wine, has been what has kept Gutlove firmly rooted in his adopted land.


“I think everyone is being helped here,” said Gutlove, “including myself.”


Source:   http://www.cnn.com/2009/WORLD/asiapcf/04/01/japan.autism/index.html?eref=rss_latest



First Published Wednesday, 8 April 2009


A MOTHER from Millom has accused the education system of not giving her autistic son the support he needs.


0476599
LOVING SUPPORT: Mikaila Munroe reading with her autistic son Dearan Crawford HOWARD SHIMMIN REF: 0476599

The five-year-old son of Mikaila Munroe, a prison officer at Haverigg, is currently a pupil at Millom Infants School.


Dearon Crawford has autism and suspected ADHD (Attention-Deficit Hyperactivity Disorder) and Mrs Munroe claimed the resources in Millom are insufficient to support him. Mrs Munroe, 28, said: “It’s not the school itself I have a problem with, it’s the system. The school said they don’t have the resources to support him.”


She said the education system had failed to help her and her son, adding: “Where is the help for him? All they do is ring me up at work, when there’s a problem, and I’ve got to come out of work is pick him up. The government are trying to encourage single parents to go back to work, but how can they when they’re being phoned up all the time?


“They keep ringing me up when I’m at work to come and get him, because they can’t control him. They should have the resources they need. I try to work while looking after him and they are always ringing me saying come and pick him up.”


Mrs Munroe, of Market Street, said she was lucky her employer was so understanding. She said: “I’m sure other people wouldn’t be as lucky as me. Some employers just wouldn’t put up with it. I’ve just had enough, and he’s never going to live a normal life unless something is done.”


Cumbria County Council says it will be reviewing the situation.


A spokesman for the council said: “We recognise it is challenging for very young children with additional needs to adjust in school settings. The school, like all other schools, has the active support of psychology, specialist teachers and behaviour specialists. This school also has additional funding to the maximum degree possible to provide on-site support to compliment the approaches the school are developing.


“The family have continuing support of a ‘team around the child’ type approach that is made available to many families and children so that there is support for home and school at times of difficulty.


“The local authority recognises the difficulties in this situation and is working closely with school and the family to address a developing changing position.”


Source:   http://www.nwemail.co.uk/news/millom_mum_hits_out_over_lack_of_support_for_autistic_son_1_538208?referrerPath=ten_year_prison_term_for_cumbrian_pervert_who_sexually_abused_boy_1_535616