Adult Autism Reality in the UK

The joy of autism advocates on the inter-net should read this report from from the BBC on adult autism realities in the UK. It provides some sobering perspective that the neurodiversity movement and the rose colored glasses brigade should consider before they continue to try and persuade the world that autism is wonderful. Hopefully the research necessary to find ever more effective ways to help autistic children, youths and adults will continue. And hopefully governments from Canada to the UK to China and all points in between and around the globe will step up and provide the supports necessary for autistic people to live a decent, happy, life.



Effects of autism 'long-lasting'

The NAS says autistic teenagers need more support

Almost half of adults with autism in England live with their parents, a National Autistic Society report says.

And just 15% of them are in full-time employment, says the society's "Moving on Up?" report.

But the society says this could improve if the right planning and support were offered to young people with autism.

England's Children's Commissioner, Sir Al Aynsley-Green, said the government had made progress but work was still needed to help young autistic people.

It's very scary because I know that when he reaches a certain age he will no longer be entitled to the support he's entitled to as a child Deborah Packenham

The NAS is calling for better support and services for young people with autism during the critical "transition stages" between school, higher education and employment.

Change can be difficult for young people with autism to cope with, and the transition from childhood to adult life can be especially problematic.

Support needed

The government's Special Educational Needs Code of Practice says all children with a statement of special educational needs should have transition planning from the age of 14.

Yet the NAS found that only about half, 53%, of young people receive such plans during their education, and only one third of those in mainstream schools do so.

Rosemarie Mason has five children, three of whom have been diagnosed with childhood autism - twins Sean and Eoin who are now 19, and 17-year old Mehal.

Rosemarie Mason has three teenagers with autism

She said: "Like any parent I want them to do what they want to do, to support themselves and to make decisions for themselves.

"I'm realistic enough to know they're going to need support - they're going to need a network of support."

"But that isn't what's designed for adults with disabilities."

And Deborah Packenham, whose son Ieuan also has autism, said: "It's very scary because I know that when he reaches a certain age he will no longer be entitled to the support he's entitled to as a child.

"He'll be an adult, and support is very patchy."

Transition benefits

NAS head of policy Amanda Batten said many young people with autism were failing to fulfil their potential due to a lack of appropriate support at the vital transitional stage in their lives.

She said: "It is imperative that there is early and effective transition planning for every young person with autism.

"Many have a great deal to offer and should have access to appropriate support.

"If transition fails, young people can find themselves embedded more firmly than ever in the family home, increasing stress on the family and resulting in more isolated lives."

Sir Al Aynsley-Green, Children's Commissioner for England, said: "This research shows clearly why we must be extra vigilant to the needs of young people with autism so that they receive the right financial and emotional support to cope with adult life.

"Recent government initiatives for families with disabled children are welcome, but I continue to be told that poorly co-ordinated services and a lack of adequate resources to help them navigate their way through are adding to their difficulties - this must be addressed as a matter of utmost urgency."

A spokesman for the Department of Children, Schools and Families said it was spending £19m on a transition support programme to give disabled young people more "choice and control" as they move into adulthood.

"We are developing an autism pack for schools, which will include information on good transition planning," he added.

http://news.bbc.co.uk/1/hi/health/6897908.stm

Autism Surge & Vaccines - It Ain't Over Til It's Over

"It ain't over til it's over"" - Yogi Berra

Even as the mercury autism proceedings unfold in the US and long after I had thought the issue of vaccines and autism was no longer a serious issue comes word of another big surge in autism cases and more expressions of belief by health care professionals that the surge is linked to vaccines. The UK autism figures are surprising. The 1 in 150 figure from the CDC in the US has given way in the UK to 1 in 100, with some sources reporting 1 in 86, and now one report indicating 1 in 58. Why is the UK rate so much different from that reported by the CDC? IF there is a real difference between the American and UK figures, and not just differences in reporting or diagnosis, what could explain the differences other than environmental factors? Some medical professionals in the UK are again pointing to vaccines. The scientific and professional debate might be refueled by this news but will pale in comparison to the inter-net wars between the mercury causes autism believers and the Neurodiversity camp. Fasten your seat belts folks we will soon be experiencing more autism turbulence.

Whatever the explanation for the UK surge in autism figures it is clear that the world still has much to learn about autism, rates of autism and the big question what causes, or what group of factors, cause autism? As the great sage Yogi Berra said "it ain't over til its over".


New health fears over big surge in autism

· Experts 'concerned' by dramatic rise
· Questions over triple jab for children

Denis Campbell, health correspondent
Sunday July 8, 2007
The Observer

The number of children in Britain with autism is far higher than previously thought, according to dramatic new evidence by the country's leading experts in the field.

A study, as yet unpublished, shows that as many as one in 58 children may have some form of the condition, a lifelong disability that leads to many sufferers becoming isolated because they have trouble making friends and often display obsessional behaviour.

Seven academics at Cambridge University, six of them from its renowned Autism Research Centre, undertook the research by studying children at local primary schools. Two of the academics, leaders in their field, privately believe that the surprisingly high figure may be linked to the use of the controversial MMR vaccine. That view is rejected by the rest of the team, including its leader, the renowned autism expert, Professor Simon Baron-Cohen.

The team found that one in 58 children has either autism or a related autistic spectrum disorder. Nationwide, that could be as many as 210,000 children under 16. The research is significant because that figure is well above the existing estimate of one in 100, which specialist bodies such as the National Autistic Society have until now accepted as correct. It is also significantly more than the previous highest estimate of one in 86, which was reported in research published last year in the Lancet.

Some experts who previously explained the rise in autism as the result of better diagnosis and a broader definition of the condition now believe the upward trend revealed by studies such as this indicates that there has been a real rise in the numbers of children who are affected by it. Although the new research is purely statistical and does not examine possible explanations for the rise, two of the authors believe that the MMR jab, which babies receive at 12 to 15 months, might be partly to blame. Dr Fiona Scott and Dr Carol Stott both say it could be a factor in small numbers of children.

Professor Baron-Cohen, director of the centre and the country's foremost authority on the condition, said he did not believe there was any link between the three-in-one vaccination and autism. Genetics, better recognition of the condition, environmental factors such as chemicals and children's exposure to hormones in the womb, especially testosterone, were more likely to be the cause, he commented. 'As for MMR, at this point one can conclude that evidence does not support the idea that the MMR causes autism.'

Baron-Cohen and his team studied the incidence of autism and autistic spectrum disorders among some 12,000 children at primary school in Cambridgeshire between 2001 and 2004. He was so concerned by the one in 58 figure that last year he proposed informing public health officials in the county.

Controversy over the MMR jab erupted in 1998 after Dr Andrew Wakefield, a gastroenterologist at the Royal Free Hospital in north London, said he no longer believed it was safe and might cause autism and inflammatory bowel disease in children. Many parents panicked and MMR take-up fell dramatically. More families opted to have their child immunised privately through three separate injections to avoid the possibility of their immune system being overloaded by the MMR jab, thus leaving them at greater risk of infections.

The medical and scientific establishment denied Wakefield's claim, described research he had co-authored as 'bad science', and sought to reassure the public, with limited success. Wakefield and two former Royal Free colleagues are due to appear before the General Medical Council next week to answer charges relating to the 1998 research. The trio could be struck off.

The doctors' disciplinary body claims that Wakefield acted 'dishonestly and 'irresponsibly' in dealings with the Lancet, was 'misleading' in the way he sought research funding from the Legal Aid Board, and 'acted unethically and abused his position of trust as a medical practitioner' by taking blood from children after offering them money.

A book to be published this month by Dr Richard Halvorsen, a London GP who provides single vaccines privately to babies of parents concerned about MMR, will fuel the controversy. It will present new evidence of children allegedly being damaged by vaccinations and linking increased autism to MMR.

But Dr David Salisbury, national director for vaccines and immunisation at the Department of Health, said last night: 'The evidence is absolutely clear. No published study has ever shown a link between autism and the MMR vaccine. It is absolute nonsense to suggest otherwise.

Autism Awareness Campaign UK Calls for Autism Action

Our friends in the UK are also fighting for a national autism strategy. Soon to be Prime Minister Gordon Brown is being urged by the Autism Awareness Campaign UK to take decisive action in providing autism services in health, education and respite care. It is refreshing to see the call to maintain special schools and to build specialist autism schools included in the campaign. Here in New Brunswick Canada the inclusion philosophy has become a sacred cow which has hindered serious examination of evidence based approaches to educating autistic students. Hopefully, when Mr. Brown becomes Prime Minister of the UK he will take real action and do more than his Canadian counterpart Stephen Harper whose national autism strategy consists of a one page web site of general autism information.

Press Release from:
Autism News UK
(London, UK)The Prime Minister-in-waiting Gordon Brown who takes over on 27th June and moves into No 10 Downing Street has been urged by autism campaigners to act decisively on autism and Asperger's Syndrome. Ivan Corea of the Autism Awareness Campaign UK who recently met Gordon Brown and his wife Sarah, urged the Chancellor of the Exchequer to launch a national strategy on autism and a 10 year plan of action. Autism is a neuro-developmental disorder, according to estimates over 500,000 people in the UK are on the autism spectrum.According to UK researchers 1 in 100 children may have autism. It is now one of the most serious education and health issues facing the nation. Many suffer without proper public services in education, health, specialist speech therapy and respite care - a postcode lottery to public services exists across the UK. There are serious concerns about the witholding of statements from autistic children.

The Autism Awareness Campaign UK is calling on Gordon Brown to take firm and decisive action in order to help parents, carers and people with autism and Asperger's Syndrome. Campaigners are also calling for a halt to the closure of special schools and are urging the Government to launch a building program of specialist autism schools and autism units in mainstream primary and secondary schools. Campaigners are urging Gordon Brown to act on the Autism Report submitted to Her Majesty's Government detailing concerns and recommendations. The Autism Report is backed by several leading charities, voluntary organisations and people from faith communities are are supporting the call for a national strategy on autism. There is huge momementum in parliament in Westminster with parliamentarians of all parties signing an early day motion on autism - EDM 1359. Lee Scott MP launched a landmark debate on autism in Westminster Hall early this year. He too is pressing Gordon Brown to act on autism.

Autism in the UK - Will PM Tony Blair Take Action?

In Canada our Prime Minister Stephen Harper is oblivious to, if not outright hostile to, the needs and interests of autistic children and adults. In the UK though, there is an air of optimism that British Prime Minister Tony Blair intends to act to help the cause of 587,900 people with autism and Asperger's Syndrome in that nation. Autism is an international health crisis. It will be great to see the UK's autistic population received better health, education and residential care. Hopefully, if more national leaders take decisive action, Canadian Prime Minister Stephen Harper might also be shamed into action.

http://www.medicalnewstoday.com/medicalnews.php?newsid=69245


UK Autism On Prime Minister Tony Blair's Legacy Agenda

Main Category: Autism News

Article Date: 27 Apr 2007 - 14:00 PDT

The needs of the 587,900 people with autism and Asperger's Syndrome went straight up the political agenda when Prime Minister Tony Blair met with autism campaigner Ivan Corea and Lee Scott MP for Ilford North in the Prime Minister's Office in the House of Commons on Wednesday 25th April.

Autism is on the legacy agenda of Tony Blair who leaves office in the summer. Ivan Corea of the Autism Awareness Campaign UK presented the Prime Minister with The Autism Report calling for an urgent review of autism services for parents, carers and people with autism - the report highlighted the crying needs of people with autism in education, health,specialist speech therapy and respite care across the United Kingdom.

The Autism Awareness Campaign UK was set up in 2000 by parents and carers Ivan and Charika Corea who have a 11 year old son, Charin who has autism spectrum disorder. Since then they have been campaigning for better public services for all people with autism and Asperger's Syndrome. The Autism Awareness Campaign UK has called on the Prime Minister to launch a 10 year program of action and a national strategy on autism.

The call for an urgent review of autism services was backed by three leading figures of the charity world in the United Kingdom: Dame Stephanie Shirley Chair of Autism Speaks and The Shirley Foundation, Colin Headley, Chief Executive of the Disabilities Trust and Julie Spencer-Cingoz Chief Executive of the British Institute of Brain Injured Children. Several community organisations and organisations from faith communities also supported the need for a review.

A copy of the National Autistic Society's Make School Make Sense Campaign was also presented to the Prime Minister by Lee Scott MP.

Lee Scott, the leading parliamentarian, is championing the cause of autism in the House of Commons.Scott launched a landmark debate on autism in Westminster Hall on 7th March this year. It is now regarded as one of the most important debates on autism in parliament - he also quizzed Tony Blair on autism in Prime Minister's Questions (PMQs) on 21st March. Scott has given real impetus to the autism debate in Westminster.

Ivan Corea discussed the need for a 10 year program of action with the Prime Minister - The Autism Awareness Campaign UK are calling on the on the British Government to undertake a 10 year program of building specialist autism schools, building autism units in mainstream primary and secondary schools, tackle the failure of some secondary schools in bringing in educational strategies to deal with autistic children in a mainstream setting, access to further education and higher education, labour market opportunities for people with autism and to tackle the whole question of bullying and autistic children, the provision of recreational activities for autistic children. There is an urgent need for ring fenced funding for autism services in the UK.

Autism Campaigners are also calling on the Government to launch data a collection program across the UK to determine the exact number of people with autism. Campaigners are unsure if there is proper data collection across the UK to determine exact numbers of adults and children with autism and Asperger's Syndrome.

Downing Street featured autism on the Prime Minister's website, immediately after the high level meeting with Tony Blair in the House of Commons:

http://www.number-10.gov.uk/output/Page11529.asp

PM praised for speaking out on autism

25 April 2007

Ivan, Charika and Charin Corea A campaigner who represents the rights of people with autism met with Tony Blair in Parliament today.

Ivan Corea, Chair of the Autism Awareness Campaign UK, wanted to thank the Prime Minister for helping to bring the disorder into the public eye.

Autistic spectrum disorders are estimated to touch the lives of over 500,000 families throughout the UK.

After meeting with the PM and presenting him with a report requesting an urgent review of autism services for parents and carers, Mr Corea said:

"Tony Blair is the first sitting Prime Minister in living history ever to talk about autism in the House of Commons and outside parliament.

"I would like to commend the Prime Minister for having the courage of his convictions for speaking out on autism."

The Autism Awareness Campaign UK was set up in 2000 to lobby for better public services for parents, carers and all people with autism and Asperger's Syndrome.

Ivan and his wife Charika paid tribute to the inspiration behind their tireless campaign - their 11-year-old son Charin who has the disorder.

"Charin has been such a blessing, we marvel at the way that he has become an overcomer, rising above the barriers and the label."