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Archive for January 5th, 2011

First Published Wednesday, 22 October 2008

ASAN Logo

Fwd:



Today, in response to an often-expressed need, I have produced a simple
online database. It will consist of therapists qualified to diagnose on
the autism spectrum.


If you have had positive experiences with your own therapist
(psychiatrist, clinical or counseling psychologist, etc.), you are
encouraged to add her or his name and contact information to the
database. The process is entirely anonymous. You are not required to
identify yourself.


The brief form is on this page:


http://input. neurelitism. com


Please help to spread the word. The larger the database, the more useful
it will be.


To access the database itself, you can go to this page (though there
isn’t much there yet):


http://output. neurelitism. com


Best wishes,


Mark A. Foster, Ph.D.
ASAN-Kansas City



First Published Wednesday, 22 October 2008

Suzanne Gillies, husband Mark and Freddie

Education for all ‘Freddies’


By Chine Mbubaegbu
21/10/2008

A mother’s battle to get her special needs son a decent education has resulted in her starting a school for other children with extreme learning difficulties.


Eight-year-old Freddie Gillies Buckner, from Three Mile Cross, suffers from severe learning challenges including autism spectrum disorder, and has been excluded from school for punching teachers, attacking other children and causing havoc in the classroom.


The youngster – who has a conceptual IQ in the top four per cent of the country for his age – was excluded from Crosfields and Grazeley Church of England Primary as teacher-upon-teacher has found his behaviour too hard to manage.


Freddie’s mum Suzanne Buckner, 41, who works under her maiden name, Gillies, was offered places by Wokingham Borough Council at various schools she felt were unsuitable for her son’s complex needs in both the public and private sector.


She said: “The headteachers have tried their best but can’t cope with children like this. They have got to think of the safety of other children and their staff.


“But I had to get an education for Freddie and on my journey I have met all these young people who also need an education.”


Ms Gillies – a resourceful businesswoman – has been given the go-ahead to open a unique school for up to 10 children facing similar challenges to Freddie’s.


Freddies Reading, based in South Street, is the first of a planned nationwide chain of Special Educational Needs (SEN) schools being set up by Ms Gillies.


It will provide education for students aged between five and 11 who have been excluded or expelled from mainstream schools.


The children will have been defined as having complex issues including behavioural, social and emotional difficulties, autism, ADHD, dyslexia and dyspraxia.


Doctors and psychologists have tried to give a label to Freddie’s special needs, but Ms Gillies said he has a “dolly mixture” of different problems.


She said: “His labels are convenient for the medical profession but do nothing to help him or help us to help him.”


It is estimated that there are some 58,100 children in England and Wales like this who have violent tendencies that cannot be handled in mainstream education.


After moving her media consultancy firm Suzanne Gillies Associates from South Street, Ms Gillies has spent the past few months building the school and getting the best staff to cater to the pupils’ unique educational needs.


Ms Gillies said: “We don’t refer to this place as a school. We never refer to it as that because for most of our children school equates with very horrible experiences.


“It’s far more like a home environment, but it is also about being firm.”


As well as psychologists and special needs teachers, Ms Gillies has also sought advice from an ex-SAS officer who is an expert in safe restraint techniques when faced with an extreme situation.


She added: “Freddies will have a community-based ethos. It’s about changing these children’s opinions of themselves because their self-esteem has been destroyed.


“Traditional education in schools is about the children having to follow a certain curriculum in a certain way.


“But education is not about doing 15 minutes of maths then 15 minutes of English, but more about helping children as human beings and bringing them into an environment where they can learn and have fun.”


Ms Gillies explained the torments she has faced with Freddie’s behaviour at home, particularly the violence, and said both she and her husband face daily criticism from parents who do not understand her son’s problems.


She added: “This is not a mum setting up a school for her child. It started as a journey of thinking it was unjust that Freddie was getting excluded.


“I have a right as a mother to send my children to a school within half an hour from where I live so I will encourage parents with ‘Freddies’ children to send them here.”


http://www.freddiesfuture.co.uk

Source:  http://www.getreading.co.uk/news/education/s/2037702_education_for_all_freddies



First Published Wednesday, 22 October 2008

Should we want to cure autism?

Last Updated: 12.01 BST 22/10/2008

Have your say Read comments

Two American grandparents are raising the global profile of the condition starting with a controversial debate in London tonight. Cassandra Jardine reports.


Autism might have kept a low profile in the United States, if it hadn’t affected Bob Wright’s grandson, Christian. The chief executive of NBC Universal – the American television and film company – is not the kind of alpha male to take a problem in the family lying down. He’s used to shaking trees, kicking ass, making things happen – and that is exactly what he has done in the five years following his grandson’s regression into autism.




Christian was doing just fine, he and his wife, Suzanne, tell me in between meetings at Downing Street and the House of Commons. “He was talking, he had met all his milestones and he was becoming potty trained. Then, shortly after his second birthday, he started to regress.” Soon they no longer had a grandchild whom they could imagine becoming a world-beater like Wright himself, but a crisis. “The doctor told us it was normal to regress when a new sibling arrives,” he says, evidently still furious. “We lost nine months.”

Once Christian was finally diagnosed, they were horrified to discover that they didn’t know what to do next. “I had nowhere to go for advice,” says Suzanne, “and Bob was running NBC so we thought we were well informed.” When they discovered that one child in 100 is autistic they were even more enraged. “If a cancer struck one in 100,” he continues, “that wouldn’t be allowed.”


Wright set about raising awareness. Boy has he done so. In the three and a half years since he started the charity, Autism Speaks (whose British sister charity is chaired by Dame Stephanie Shirley), he has not just spoken but yelled. The contacts he acquired during 20 years as vice-chairman of General Electric, one of the world’s biggest corporations and parent company of NBC, have been pressed into service. “We don’t just know people,” says his wife. “We don’t take ‘No’ for an answer.”


So far Wright has persuaded advertisers to give $150 million of free air time to a campaign with the slogan: “It’s more prevalent than you think.” American newspapers have provided blanket coverage; $110 million has gone into research; a Combating Autism Bill has been passed through Congress; both Barack Obama and John McCain have publicly pledged to do more. The US Academy of Pediatricians has come “on side”, too. “It is now mandatory to screen for autism, not once but twice at 18 months and 24 months,” says Wright. “Christian was having tantrums and losing speech. These warning signs should have been picked up.”


While Christian, seven, receives treatment for his gastro-intestinal and auto-immune problems, Wright – now 65 and retired – has taken his campaign global. On April 2 the UN held the first annual World Autism Awareness Day; only Aids and diabetes have a similarly high profile. Three weeks ago at a UN General Assembly meeting more than 100 of the leaders’ wives met to hear their battle cry, among them Sarah Brown and Cherie Blair. “We want the best minds in the world to focus on this,” says Wright. “And we want the UK to be a big player in the global movement.”


“Until now it seems to have passed under your radar,” adds Suzanne – a statement that could anger all the British activists who have been working in the field for decades.

As part of that push, tonight Wright is delivering the first TreeHouse annual lecture, kick-starting a debate entitled: “Are we ambitious enough about autism?”


But anyone who imagines this will be a show of unity leading to a standing ovation for Wright could find their confidence misplaced. His abrasive, individualistic style is not universally popular. “Autism Speaks likes to work on its own,” says Polly Tommey who runs the British magazine Autism File. “Many charities and autism organisations won’t have anything to do with Autism Speaks for this reason.”


She is angry that Wright has not spoken publicly about whether vaccines could be implicated in the increase in cases of autism in recent years. Some say it is merely to do with better, earlier diagnosis. Today he isn’t ducking that issue. “There is no question but that autism is partly genetic and partly environmental, but we don’t know whether environmental factors account for 30, 50 or 60 per cent of cases,” he says. “Unlike cancers which can develop at any age, autism shows fully by the age of three so we ought to be able to zero in on some of the environmental factors in early childhood.


“Vaccines are one of the variables. The last vaccine Christian had before he regressed was MMR – that’s why my daughter concentrates on that. I don’t know whether his autism is linked: it was certainly coincidental, what we don’t know is if it was causal. Nor do we know whether the thimerosal (the mercury-based preservative used in vaccines) is a factor, although mercury is clearly poisonous. Governments want to run from that issue but they should become more aggressively involved. They have to follow children through to see if there are any effects. When we spend so much money on vaccines, we should be spending money tracking each year group.”


The other major source of concern is Wright’s focus on prevention and cure. This upsets Virginia Bovill, founder of TreeHouse, the charity hosting the lecture, who is currently studying for a DPhil on whether the quest to prevent and cure autism is morally justified. “Where would prevention lead – to ante-natal testing and abortion?” she asks. “The thought of a world without all the people I have met with autism is not a world I would want to live in. I would rather people said: ‘They are here, autism is here – how can we help these children fulfil their potential; how can we support their parents?”


Bovill and her ex-husband, writer Nick Hornby, have a 15-year-old son, Danny, who was born autistic. Currently 68 children (including Danny) are receiving intensive specialist teaching at TreeHouse in north London which is transforming them from reclusive, anxiety-racked small children into happy and potentially useful members of society. “I have been able to enjoy my son because we have means and I get breaks – he goes to Nick three nights a week. I want others to have the same. It need not work out more expensive as proper care from an early age improves the children’s prospects and enables parents to work.”


Danny cannot speak but Anya Ustaszewski, a 28-year-old with Asperger’s Syndrome (a variety of autism which does not affect speech), can and will be making her views heard at today’s debate. She works as a disability access officer at the Royal Academy and dislikes Wright’s attitude to autism as a problem to be solved. “I can’t understand facial expressions and body language,” she says. “I find eye contact painful and in stressful situations, like public transport, I use repetitive behaviours to distract myself. But I think autism is a personality type, not a disorder. My ability to hyperfocus has helped me with my studies and my music: I can hear sounds that others can’t. If you take away my autism, you take away me.”


The evening could turn out to be heated, but Bovill believes that getting everyone together in one room to argue is better than “slugging it out on the internet”. On one point, at least, they should agree. The more autism is talked about, and the earlier it is diagnosed, the sooner autistic people and their families may be able to get help.


Source:  http://www.telegraph.co.uk/core/Content/displayPrintable.jhtml;jsessionid=LQYZ0OEF4IO1ZQFIQMGSFFOAVCBQWIV0?xml=/health/2008/10/22/ftautism122.xml&site=13&page=0#form


Highlights of the debate will be shown this week on www.treehouse.org.uk



First Published Tuesday, 21 October 2008

London

Missing Asperger’s boy found safe


Gerwyn Morgan

Gerwyn Morgan was found in apparent good health in London, say police

A teenage boy with Asperger’s syndrome who went missing nearly a month ago has been found safe and well in London.


The search for Gerwyn Morgan, 15, of Merthyr Tydfil, had led South Wales Police to set up a voicemail service for people to pass on information.


There was particular concern because Gerwyn, who disappeared on 24 September, needs to take medication.


Police thanked media support during the search, which included reports of sightings at a Bristol railway station.


Police said their inquiries in to the teenager’s disappearance were continuing.


South Wales Police Chief Inspector Ian Bellshaw said: “We are very relieved that Gerwyn has been found this afternoon in the London area and appears to be in good health.


“I want to thank the public and the media for their help and co-operation in trying to find him over the last four weeks.


“We believe the media appeals in the south of England over the last few days have been instrumental in finding him.”


A poster campaign was launched in the Merthyr area as part of the search, and a youth worker said Gerwyn’s classmates at Pen Y Dre school had become concerned for him.


The last confirmed sighting of Gerwyn was the day after he went missing, when he was caught on CCTV in Merthyr town centre.


Asperger’s syndrome is a form of autism.


Source:  http://news.bbc.co.uk/1/hi/wales/7682794.stm

Missing teenager Gerwyn is found safe

MISSING Valleys teenager Gerwyn Morgan has been found safe and well today.


Gerwyn, 15, who disappeared from his home in Merthyr Tydfil four weeks ago, has been located by police in the London area.


Merthyr Chief Inspector Ian Bellshaw, who has been involved in the search for Gerwyn, said: “We are very relieved that Gerwyn has been found this afternoon in the London area and appears to be in good health.


“I want to thank the public and the media for their help and co-operation in trying to find him over the last four weeks.


“We believe the media appeals in the south of England over the last few days have been instrumental in finding him.”


Gerwyn’s step-father Mike Curtis, 57, said: “It’s been four weeks so obviously we’re very happy and relieved he’s been found.


“With his disability, and the fact he’s not street wise at all, I did start to think the worst.


“We had confirmation from the police in England at about 2pm that he’s been found in Basildon, in Essex.


“They had a tip off this afternoon that he was going to meet someone, and they turned up and saw it was him.


“We don’t know if he’s going to be brought home today or if the police are going to keep him there for a de-brief and bring him home tomorrow.


“They probably will keep him there to find out what it is he’s been doing for the last month.”


Source:  http://www.walesonline.co.uk/news/south-wales-news/merthyr/2008/10/21/missing-teenager-gerwyn-is-found-safe-91466-22085366/

Essex, UK

Missing teen Gerwyn Morgan found in Essex

THE relieved family of teenager Gerwyn Morgan, who has been found safe and well, are waiting to be reunited with him after a month of despair.


News was broken to mum Carole Curtis on Tuesday afternoon that a teenager had been found by police in Basildon, Essex.


“It was the longest two-and-a-half hours of my life waiting for them to confirm it was Gerwyn,” said Mrs Curtis, who faced the agonising wait at Merthyr Tydfil Police Station.


“When I see him I’m going to give him a big cwtch and I know I’ll break down crying.”


Gerwyn, who has Asperger’s Syndrome and needs to take daily medication, disappeared on September 24 from his family home in Merthyr Tydfil and sparked an extensive police and family search.


It is understood Gerwyn was found in Essex following a tip-off to police that he was meeting someone.


Mrs Curtis said yesterday: “I’m so relieved but despondent because I haven’t been able to speak to Gerwyn.


“I was told they were waiting for a police doctor to see if he was well enough to travel and social services would be involved. At the moment I’m still in limbo. I’m worst now than when he was missing. I’m at my wits’ end, I haven’t got a clue what’s happening.”


She said Gerwyn was back in Wales but didn’t know where.


“I know he is safe but I need to see him for myself to know in my own heart he is well,” she said.


“I just want my son home. I’ve been told social services have to be involved and other agencies. I’ve been waiting for other agencies to be involved and help for the past eight years.


“It has taken something like this to get anywhere. I’ve been told he’s with some foster family somewhere.”


Merthyr-based Chief Inspector Ian Bellshaw, who was involved in the search for Gerwyn, said: “We are very relieved that Gerwyn has been found in the London area and appears to be in good health.


“I want to thank the public and the media for their help and co-operation in trying to find him over the past four weeks.”


During that time members of his family searched the streets and put up missing posters. Police and his tutor at Penydre High School also made appeals through the media.


A sighting of Gerwyn at Bristol Temple Meads railway station, two days after he went missing and confirmed on CCTV footage, provided a breakthrough.


Mrs Curtis travelled to Bristol last Friday with police officers to make a TV appeal and this week, a month since Gerwyn went missing, police had planned a major leaflet drop in Merthyr, Cardiff and Bristol to enlist the help of milkmen, bus and taxi drivers.


Source:  http://www.walesonline.co.uk/news/south-wales-news/merthyr/2008/10/23/missing-teen-gerwyn-morgan-found-in-essex-91466-22094638/



First Published Saturday, 18 October 2008

Bristol Railway Station

Missing teenager spotted at railway station

TEENAGER Gerwyn Morgan was spotted at a Bristol railway station two days after he went missing three weeks ago, it emerged today.


CCTV footage has confirmed a sighting of Merthyr Tydfil schoolboy Gerwyn by a police community support officer (PCSO) at Bristol Temple Meads railway station at 9.45am on September 26 – two days after his family last saw him.


It is not clear if 15-year-old Gerwyn, who has Asperger’s syndrome, had just arrived there or was trying to catch a train to somewhere else.


Today his mother Carole Curtis is travelling to Bristol by car with police officers to make TV and radio appeals.


During the journey, she spoke to Media Wales and said: “I’m on my way to Bristol in case he’s still there. The nearer I’m getting the worse I’m feeling.”


“I’m in a worst state now than ever. Bristol’s such a big place.”


Extensive investigations to trace Gerwyn’s movements are continuing and the police want to hear from anyone who may have seen Gerwyn, or knows where he is to get in touch.


“You won’t be in trouble, please come home” is the message Chief Inspector Ian Bellshaw wants the schoolboy to hear.


“I want Gerwyn to understand that he is not in any trouble – we just need to know that he is safe.


“If he’s worried about getting in trouble for running away then I want him to know that he hasn’t done anything wrong, we just need him to get in touch”.


“Though it is encouraging that we have another sighting of him in Bristol.This was more than 10 days ago and we do not know what has happened to him since.


“There is every possibility that he has now returned to South Wales as there have been further possible sightings of him in the area.”


Source:  http://www.walesonline.co.uk/news/south-wales-news/merthyr/2008/10/17/missing-teenager-spotted-at-railway-station-91466-22058186/