Autism, Asperger's Syndrome and Children

Most Welsh schools are failing to support children with autism & Asperger's Syndrome.

2009-06-22T13:18:00.000+01:00

Education in Wales is not meeting the needs of young people with autism and Asperger's Syndrome, according to a Welsh Assembly Government (WAG) report. Unfortunately, I was unable to locate this report on their website, which I find totally ridiculous! However, if you read this excellent article by the Western Mail the main points of the report will be revealed; very well worth an investment of your time.

Asperger's Syndrome is still being overlooked in girls.

2009-05-31T10:59:00.002+01:00

Asperger's Syndrome is not being effectively diagnosed in girls, which is causing them serious difficulties. Actually, I first reported on this issue on 9th November 2008, “Autism 'may be missed in girls.'” If you would like to read the most recent article concerning this problem, please click here: "Doctors are 'failing to spot Asperger's in girls.'"

"One child in 60 'suffers from a form of autism.'"

2009-03-22T15:00:00.001Z

Here's some depressing news. Sorry! (I really do try my best to find optimistic stories.) To be honest, people certainly do need to be aware of this latest research, especially people who have the power to do something positive about this terrible state of affairs i.e. politicians.

I implore you to read this article, "One child in 60 'suffers from a form of autism'" to find out more.

Until next time.

How do doctors diagnose autism & Asperger's syndrome?

2009-02-26T16:54:00.000Z

"It may be hard to work out the diagnosis of autism. Your doctor will look for signs of autism in the way your child behaves and how they have developed."

Although this Guardian article only discusses autism, I presume it applies to Asperger's Syndrome too; I just find it somewhat odd that AS isn't specifically mentioned. Anyway, if you click on the following link you will be instantly transported to the relevant webpage. (Isn't the Internet a wonderful invention? I just love it!)

Click me and I shall appear!

Autism Sunday - sufferers remembered globally.

2009-02-04T17:11:00.002Z

"Key Leaders Back Autism Sunday 2009."

"Autism Sunday, the International Day of Prayer for Autism and Asperger's Syndrome falls on Sunday 8th February 2009. Cathedrals, churches and religious organisations around the world are to mark the international day and pray for over 60 million people with autism and Asperger's Syndrome across many nations."

Please click here for the full story.

Children with mild autistic traits also need help.

2009-01-31T19:54:00.001Z

"Many children have mild autistic "symptoms" without ever having enough problems to attract specialist attention, say UK researchers."

For the full story, please click here.

Support groups in Rhondda & Taff.

2008-12-30T15:42:00.001Z

Hi everyone,

I trust you all had a very enjoyable Christmas; brace yourselves, New Year is nearly upon us!

My wife and I received a letter from the Disabled Children's Team this month, giving details concerning ASD support groups in Rhondda and Taff, so presumably the information is right up-to-date.

Here's the letter:

The Autistic Support Group meets the first Monday of the month at the Ivor Hael pub, Llwynypia at 7:30pm. Contact Sarah Morgan (01443 684581) or Mandy Dickinson (01443 440811) for further information.

The Asperger's Support Group meets the third Monday of the month at 7:30pm, Dewi Sant Hospital - contact Christine Griffiths on 01685 886389 for further information.

Further to this, the National Autistic Society can offer advice on their helpline, the number is: 0845 070 4004.

Advice and support with Disability Living Allowance can be sought from benefits advice on 01443 432942.

Yours sincerely,

Nichola Holland
Social Worker
Disabled Children's Team.

(letter ends)

As per usual, if you have any comments or constructive criticism, please feel free to express them. You can contact me via this blog or email.

All the best for now.

"Autism "may be missed in girls.""

2008-11-09T20:06:00.001Z

"Girls with mild autism are less likely to be identified and diagnosed than boys, a study suggests."

Please click here for the BBC news article.

"Special intelligence" (The Guardian).

2008-09-29T13:10:00.002+01:00

I found this story and wrote the introduction for it nearly two years' ago! Never mind, better late than never, I suppose. The article explains what young people with Asperger's Syndrome can expect to experience when looking for employment when they eventually finish full-time education. The article provides a fascinating insight into the positive and negative aspects of employment. Consequently, steps can now be taken to develop and improve existing strengths and also to work towards tackling the weaknesses for children with an ASD. Of course, this is the situation now; the future should provide greater opportunities. Here's the Guardian's excellent article:

Special intelligence

"If you have Asperger's syndrome, getting and keeping a job might seem impossible, but it's not. Sabina Dosani talks to employers about why they value their 'incredible' workers."

Please click here for the full story.

Autism/Asperger's Syndrome parents 'infection risk.'

2008-08-12T17:15:00.001+01:00

Caring for children with developmental problems such as autism or Down's syndrome can weaken parents' immune systems, research suggests.

Please read the full story here.

"Battle of sex in genes and the brain."

2008-07-31T19:00:00.007+01:00

"Sex is good for a lot of things. One of the most important is the way in which sex leads to a shuffling of the genetic cards in every individual. Scientists in Cardiff are beginning to build up a picture of what certain genes are doing in the brain and how they affect behaviour. The results, delegates were told in Geneva today, could help researchers find the causes for conditions such as autism."

This is an enlightening read, if you are interested in genes and their possible link to autism and Asperger's Syndrome. Please click on the above title for the full story.

Please leave a comment!

2008-06-30T22:56:00.003+01:00

If there is anyone reading this blog who would like to leave feedback, please feel free to do so. I presume that my blog is indeed being read but, without any comments, I cannot be sure. The point is that if feedback was received it would instil greater motivation, which would result in me producing more frequent "posts" of better quality. So, come on, don't be shy!

Looking forward to hearing from you.

Chemicals may be linked to autistic spectrum disorders (ASDs).

2008-05-17T22:08:00.003+01:00

Here's something that you may find interesting. It's about certain chemicals and their possible link to child autism when they are used by pregnant women, including before conception and after birth. I couldn't possibly comment on these findings; I shall leave that to those whom are more knowledgeable in this area. However, when at university I was particularly interested in indoor air pollution. There are countless chemicals drifting about in the home e.g. from paints, varnishes and glues, not forgetting the ones used in various materials for furniture manufacture. Fact: did you know that cigarette smoke contains over 4000 different chemicals? Many, as we are now aware, carcinogenic in nature.

Anyway, if you would like to learn more about ASDs and chemicals, then please read this Telegraph article: "Child autism link to pet shampoo."

Are children who suffer from autism and Asperger's Syndrome receiving appropriate help at school?

2008-04-29T18:26:00.005+01:00

This question, unfortunately, has been troubling my conscience for many years, but to a much greater degree over the past few months, and I can no longer refrain from making my feelings public. I apologise in advance for the inevitable annoyance this will cause to some people – hopefully only a small minority – in writing this piece but, I honestly feel that I am betraying my principles and subsequently the many children whom have been diagnosed with an Autistic Spectrum Disorder (ASD) if I do not.

I am speaking from personal experience when I say that the situation at school for these children is unacceptable. I refer to our own son, Owain whom has been diagnosed with Asperger's Syndrome. Furthermore, I have many reasons to suspect that numerous other children, whom have also been diagnosed with an ASD, are in a similar situation; our own son cannot be unique in this respect.

Owain frequently returns from school complaining about the lack of understanding and help he receives e.g. pupils suffering from other, non-ASDs, disabilities receiving a greater proportion of assistance, and unsympathetic teaching staff; a small proportion, it must be said. All this unpleasantness is gradually having a detrimental effect on his health and well-being, not to mention his important school work. Furthermore, Owain frequently has problems completing his homework, simply because he has difficulty remembering verbal instructions. Previously, most teachers would kindly assist by writing brief comments in his “red book” (which would inform us as much as Owain) but, unfortunately, even this help has almost disappeared. He does try his best to write notes in his Personal Planner, but with only limited success.

An ASD, in my eyes, still seems to be treated as an “unseen disability,” regardless of the fact that awareness of ASDs has risen considerably over the last few years. Please don't misunderstand, I am not blaming schools per se; however, in our particular case, I am concerned with the lack of professionalism shown by one or two individuals at Owain's school. There are, as we all know, competent teaching staff in our schools but, how many are suitably qualified to help these unfortunate children? If the answer is not many, as I suspect, why not? It's plainly obvious that teaching staff need more relevant training in the area of ASDs. Teaching staff are a vital part in ensuring our children receive the best education and deserve our full support, from all quarters.

On a more positive note, the Welsh Assembly Government is financing a three year plan to support families affected by ASDs. I am pinning my hopes on this important endeavour; it must deliver what it proposes, we all need to scrutinize it to ensure its success.

People affected by autism & Asperger's Syndrome will benefit from 3 years' funding.

2008-04-22T15:00:00.001+01:00

Today, the Welsh Assembly Government announced plans to improve the lives of children, adults and their families whom have been affected by autism and Asperger's Syndrome. The Autistic Spectrum Disorder (ASD) Strategic Action Plan will be launched today at the 3rd Wales International Autism Conference organised by Autism Cymru in Cardiff. Funding of £1.8m has been allocated for the first year (2008/9), with more to follow in 2009/10 and 2010/11.

Obviously, this is excellent and exciting news; let's all keep a watchful eye on the Assembly to make sure our money is wisely used. The full story can be read here,"'World first' to improve autism services in Wales." The NAS's response can be found here,"NAS Cymru welcomes Assembly Government Action Plan."

United Nation's World Autism Awareness Day.

2008-03-30T20:00:00.000+01:00

Wednesday, 2nd April, will be the United Nation's World Autism Awareness Day and events have been organised globally to mark this momentous occasion. Too many people are still ignorant about autism and Asperger's Syndrome; these global events will undoubtedly pave the way to a fuller understanding of Autism Spectrum Disorders (ASDs).

Please click on "post" title for more information.

"MMR: Moment of truth for man behind the scare." (The Independent)

2008-03-27T12:59:00.006Z

The doctor who linked the vaccine with autism will today be called to account

By Jeremy Laurance
Thursday, 27 March 2008

The doctor who triggered an international health scare over the safety of the measles, mumps and rubella (MMR) vaccine will take the stand at the General Medical Council today in an attempt to save his professional reputation.

Ten years after Andrew Wakefield's paper linking the MMR vaccine with bowel disease and autism appeared in The Lancet, he will defend the research, which is said to have done more damage than anything published in a scientific journal in living memory. Scores of parents who are convinced that the vaccine caused autism in their children will demonstrate in support of Dr Wakefield outside the GMC's headquarters in London, where the case is being heard, as they did when the hearing opened last July. They claim he is the victim of a witch-hunt by the Government and the pharmaceutical industry, who have conspired to cover up the harm the MMR jab has caused.

Along with two of his former colleagues, Professors Simon Murch and John Walker-Smith, Dr Wakefield, 51, is accused of abusing his position as a doctor and of failing to obtain the necessary ethical approval for his research on children, or of going beyond it or of not being qualified to carry out the procedures he undertook. If found guilty of serious professional misconduct, all three doctors face being struck off the medical register. They deny the accusations.

The charges, though narrowly focused on the ethics of the research rather than the disputed link between MMR and autism, have revived the decade-old row which has pitched parents against the medical establishment and led to a collapse in immunisation levels nationwide.

Vaccination rates with MMR stood at 91 per cent in 1997-98, before The Lancet published Dr Wakefield's findings. In the ensuing scare, vaccination rates slipped to 80 per cent in 2003-4 and lower still, to 60 per cent, in parts of London.

Although the rates have since recovered to 85 per cent, hundreds of thousands of children remain unprotected from the diseases and cases of measles have soared.

Almost 1,000 people were infected with the illness last year – the highest figure since records began in 1995. The illness causes fever which can lead to serious complications. Cases of mumps have also risen sharply.

The five-member GMC panel, who are each being paid £310 a day, have spent three months listening to the prosecution case. Today, they begin hearing the case for the defence. A further three months of hearings are scheduled, involving scores of lawyers, medical experts and witnesses in what is likely to be one of the most expensive misconduct cases ever heard by the GMC, which is responsible for regulating doctors and ensuring good medical practice. There is speculation that a judgment could be delayed until 2009.

The 92-page list of allegations took more than an hour to read out. A key charge is that when Dr Wakefield submitted his research paper to The Lancet, he failed to declare he was a paid adviser to solicitors acting for parents who believed their children were harmed by MMR and had accepted £55,000 from the Legal Aid Board for research to support their legal action.

It was this disclosure that led The Lancet to announce a partial retraction of the paper in 2004 in what the editor, Richard Horton, declared was a "fatal conflict of interest". Dr Horton said the had he known about it at the time, he would never have published the paper.

Yet Dr Wakefield had admitted receiving the legal aid payments in a letter published in The Lancet in May 1998, three months after his research appeared, and he is expected to argue that the journal knew this before publication. He had also patented a single measles vaccine in 1997.

Other medical editors have pointed out that most authors of research papers have some conflict of interest. While normal practice is to declare it at the end of the paper, the degree of conflict that would render a paper unpublishable is undefined. But it is the damage done to public confidence in vaccination that is the most serious legacy of Dr Wakefield's work.

Since The Lancet printed his paper in February 1998, a series of epidemiological studies has failed to find any evidence of a link between MMR and autism. This has failed to satisfy parents, predominantly middle-class and well-educated, who have refused to allow their children to be immunised or demanded single vaccines, as Dr Wakefield recommended.

One of the greatest puzzles of the saga is what has sustained this level of mistrust in the medical authorities. Unlike most scientific controversies which flare up and die away, this one has simmered for a decade – and is now to be fired up again by the GMC case.

Dr Wakefield is said to be unrepentant about his research and remains convinced that some children are vulnerable to damage by the MMR vaccine. His supporters claim that independent studies from different countries have confirmed his findings – but clinical investigation of individual cases which could provide the proof has been blocked in the UK.

Dr Wakefield's career in Britain ended in 2001, when he lost his job at the Royal Free Hospital in London, where he carried out his research. Ostracised by the medical community, he moved to America with his wife and four children and now works at Thoughtful House, a centre for children with developmental problems in Austin, Texas.

The risk is that the GMC case against Dr Wakefield will reinforce the view that there is a conspiracy by the Government, drugs companies and the medical establishment to promote the MMR vaccine and discredit a doctor whose only sin was to raise questions about its safety. If found guilty, he will become a martyr to the cause – a lone voice struggling to defend the interests of desperate parents and their damaged children. If he is exonerated, it will add fuel to the anti-MMR campaign. Either way, it looks as if parents and children will be the losers.

"Campaign to raise autism awareness launches."

2008-03-20T10:54:00.003Z

A new campaign has been launched to raise awareness of autism among criminal justice professionals.
The new UK wide initiative was launched by The National Autistic Society (NAS) and the Co-Operative bank in Nottingham yesterday. Entitled 'Keeping Safe' the campaign aims to equip young people affected by Asperger syndrome, a form of Autism, the skills to learn about the risks of crime, recognise dangerous situations and keep themselves safe. 'Keeping Safe' also offers guidance on how to recognise autistic behaviours and the best ways in which to deal with a suspected autism sufferer. Alan Bicknell, NAS head of support programmes, said in a statement: "Autism affects one in a hundred people so it is likely that criminal justice professionals will meet people with the condition fairly regularly during their career."There is a resource pack which will be distributed to police officers, and a more comprehensive guide to autism for criminal justice professionals it has been claimed.PC Joe Scarth, a Merseyside policeman who has a seven-year-old autistic son and was speaking at the launch, told the Liverpool Echo, "As a police officer I became aware that if my colleagues came into contact with someone with the disorder, they may well not realise that someone has autism."

(Source: Craegmoor Healthcare.)

"Court links MMR to autism."

2008-03-10T17:05:00.005Z

9th March 2008

by Phil Doherty, Sunday Sun

FAMILIES who blamed the MMR jab for their children’s autism may be vindicated by a landmark court case.

The Government has denied a link between the immunisation and autism, but a US court ruled that a girl did dev- elop the condition after a series of jabs.

The vaccines reacted with a DNA defect in her body . . . a defect found in 38 per cent of those with autism.

The ruling was made last November but “sealed” — or not made public — until a compensation figure was agreed.

However, details of it have been leaked to the Sunday Sun, and we understand there are a further 4900 similar cases to be heard in the US.

It’s thought the disorder in the girl was triggered by the existence of mercury, used to make the vaccines more efficient.

Mercury has now been removed from child vaccines in the UK but many parents whose child developed autism when it was in use will feel the case backs up their suspicions.

The developments are being watched closely by experts in the UK.

They include Paul Shattock, head of Sunderland University’s Autism Research Unit. He said: “No one has ever claimed vaccines caused all autism, which can have many different routes, but around seven per cent of parents say their child was developing normally until they were immunised.

“There is now a link to vindicate their view and this has been proven in court.”

It was in 1998 that Dr Andrew Wakefield, then working at London’s Royal Free Hospital, first suggested a link between the triple jab for measles, mumps and rubella and an increased risk of autism and bowel disorders.

He is currently before the General Medical Council facing allegations of misconduct.

The British Government has always denied such a link, pointing to a series of studies backing its claims, the latest published last month by a team led by London’s Guy’s and St Thomas’s Hospital.

The US Court ruling concerned Hannah Poling, nine, from Georgia. She received five vaccinations, including MMR, diphtheria, whooping cough and polio, two of which contained thiomerosal, a mercury-based preservative.

Thiomerosal was phased out from all UK vaccines from 2004 but was used in vaccines before this date.

After the ruling, the US Government said it wasn’t the vaccines which caused her autism, but a DNA defect in those who were inoculated which was triggered by the jab.

According to research, just 0.2 per cent of the general population have the defect, compared to at least 38pc of autism patients.

Jackie Fletcher, founder of Jabs, a support group for vaccine-damaged children, said: “This is significant precedent and it’s vital the Department of Health put in a screening programme for this defect before children are given jabs.

“We know a number of autistic children in the UK had more than one vaccine on the same day . . . exactly the same as the America girl.

A Department of Health spokesperson said: “The evidence is clear. There is no link between vaccines and autism.

“MMR is the safest and most effective way of protecting children from measles, mumps and rubella.

“This issue relates to one child with an extremely rare metabolic genetic condition. In the US, rates of autism have continued to rise since mercury was removed from its vaccines.

“This case has no relevance therefore for vaccination in the UK.”

(Source: http://icnewcastle.icnetwork.co.uk/).

"MMR and Autism: US court says there’s a link, and awards compensation."

2008-03-09T16:20:00.003Z

06 March 2008

The MMR (measles, mumps, rubella) vaccine can cause autism, a US court has concluded.

In a secret ruling that has only just come to light, the US Court of Federal Claims has conceded that the mercury-based preservative thimerosal, which was in vaccines until 2002, caused autism in the case of one child.

The ruling is one of 4,900 cases currently being considered for compensation payments, and it is feared by health officials that it could open the floodgates for even more claims. It also appears to support the controversial findings of Dr Andrew Wakefield, who, in 1998, suggested a link between the vaccine and autism.

The ruling, made by US Assistant Attorney General Peter Keisler, was made last November, and was one of three test cases into the MMR-autism link that was being considered by a three-member panel, which Keisler chaired.

In his conclusion, Keisler said that “compensation is appropriate”.

The case involved a child who, when she was 18 months old, received nine vaccinations in July 2000, two of which included thimerosal. Within days, the girl, who had previously been healthy, suddenly exhibited no response to verbal direction, loss of language skills, no eye contact, insomnia, incessant screaming, and arching.

A diagnosis of autism was confirmed seven months later.

In its defence, the US government said the girl had a pre-existing mitochondrial disorder that was aggravated by the vaccine.

(Source: The Huffington Post, February 25, 2008).

(Source: http://www.wddty.com/).

"Autism: What are the ethics of treating disability?"

2008-02-09T20:36:00.000Z

A row about the correct response to the condition – acceptance or treatment – is dividing campaigners and carers. Jeremy Laurance reports on a bitter ideological war

Published: 16 November 2007

Battle has been joined between leading organisations in the autism field and Lara Hawkings is in the thick of it. She is the mother of a four-year-old, Edward, who has been diagnosed with autism – and she is cross. What has sparked her ire is a campaign by the National Autistic Society (NAS), backed by a bevy of celebrities, to encourage greater understanding of the condition that affects her son. It is not understanding that she needs, she says. It is help.

"The attitude in Britain is 'Oh dear, nothing can be done.' Hundreds of thousands of people are affected and the response to that is, it doesn't really matter, we have to put up with it.

"In America it is completely different. There they have massive conferences on the subject, lots of research and lots of children being treated. It is widely accepted that a lot can be done for these children."

Mrs Hawkings, 37, is not alone. She was one of 25 signatories to a letter published in The Independent last week attacking the 18,000-member NAS and demanding withdrawal of its latest leaflet, "Think Differently About Autism", which aims to increase public awareness of the lifelong disability.

The NAS's view is that the problem lies not with autism but with the public response to it. People with autism are stigmatised and discriminated against and the NAS's aim is to prevent the damage that can cause by raising awareness of the condition.

Its approach is summarised by Jane Asher, president of the society, and 20 celebrities who have put their names to the campaign, including the actresses Helena Bonham Carter, Sheila Hancock and Prunella Scales and the chef Antony Worrall Thompson.

Ms Asher said: "The lack of understanding about autism among we so-called 'normal' people is one of the major causes of the unhappiness and isolation of those affected by this potentially devastating condition. It would be wonderful to think the NAS's campaign could change attitudes."

That is not good enough for Mrs Hawkings. Her son Edward's autism has improved, not from "greater public understanding" but thanks to medical advice which led her to cut out gluten, wheat and dairy foods from his diet, she said. Like many autistic children, Edward suffered severe gastrointestinal problems which have now been largely resolved.

"He had massive distended tummies, constipation, diarrhoea. He had private tests which you can't get on the NHS which showed he had a 'leaky' gut. A lot of doctors say it's rubbish, but it has helped Edward," said Mrs Hawkings.

She and her colleagues, members of the rival organisation Treating Autism, organised last week's letter to The Independent. Treating Autism is a charity that promotes therapy for children with autism and insists it works. "Hope for people with autism does not lie in celebrity endorsement and a pretence that autism is normal but in the torrent of medical research that is pouring out of the United States," its letter said. It accused the NAS of being "on another planet".

It was the first salvo in the latest round of hostilities in the autism movement. Similar disputes have been seen in other areas of disability between those who believe it is best to accept the condition and adapt to it, and those who insist on fighting for research funding and treatments.

But autism is different. It exerts a grip on the public imagination because it disturbs something that is core to being human. That is why it fascinates. In the social world in which we live, the capacity to read social situations and respond appropriately can mean the difference between popularity and loneliness and smooth the route to professional and social success. Autistic people lack this capacity – the uniquely human skill of forging relationships – and can face a lifetime of loneliness and isolation as a result.

Sally Eva, chief author of the Treating Autism letter and mother of a 15-year-old daughter, Edith, diagnosed with autism, said: "People with autism range from those at the severe end who can't tell a person from a post to those at the mild end who may be madly over-communicative. The NAS employs people with autism so it is over-influenced by those at the mildly affected, employable end of the spectrum. The real argument is between people who believe in "neurodiversity" – that autism is on the normal spectrum and we should work for more public acceptance of it – and those who believe it is a medical condition that needs treating."

Others have since joined the battle in The Independent's letter columns. On Wednesday, Paul Wady, 43, who was diagnosed as on the autistic spectrum two years ago, and is employed by the NAS, described the demand from Treating Autism as "sheer lunacy".

Later Mr Wady said: "Of course if you can treat someone with autism so that they are more functional and they can progress to adulthood, that is great. But denying someone their nature – that is wrong and stigmatising. It is the idea of eliminating faulty genes that cause the condition that is so objectionable. We are what we are."

In the 64 years since Leo Kanner, who first described autism in 1943, said it was a developmental disorder characterised by "extreme autistic loneliness" and an "obsessional desire for the maintenance of sameness", debate about what it is, what causes it and how (or whether) it can be treated has continued to rage.

One of the most basic, yet still unanswered questions is how common it is. A disorder characterised by "an inability to read social situations" is not easy to diagnose. In some people autism is disguised by high intelligence and may go unrecognised throughout their lives. They are the brilliant but eccentric professors who, when not investigating Etruscan archaeological remains or complex mathematical formulae, are playing quietly with their train sets in the attic.

Classic autism, the severest kind, is thought to affect 30,000 people in the UK. This figure has remained largely unchanged over several decades. However, more than 500,000 are said to have autistic spectrum disorders, including Asperger's syndrome, a mild version of autism, sometimes described as "mind blindness". This more elastic definition has expanded over the years and most experts say this accounts for the supposed rise in autism, because there are no clear boundaries to it.

Uncertainty about the definition of autism and disagreement about the number of people affected lies at the heart of the dispute. Members of Treating Autism, mainly parents of affected children, are desperate for assistance with offspring who may be destroying their homes and any semblance of family life.

The NAS insists it supports everyone with autism and that different individuals have different needs. Benet Middleton, director of communications, said: "The fact that it is a disability doesn't mean that there are not interventions that can help. Treating Autism seems to imply that we shouldn't talk about raising awareness of the problems people face because by doing so we imply nothing can be done."

He said the key question was what worked. "There is an issue about evidence. There are interventions to support people live their lives but there is very little peer-reviewed evidence for those interventions. What works for one person doesn't necessarily work for somebody else."

Famous faces backing the National Autistic Society campaign

Helena Bonham Carter, actress

"Lots of people don't realise that autism is a life-long condition. I strongly believe that with improved understanding, a great deal more could be done to help people with autism to fulfil their potential in life, work and happiness."

Sheila Hancock, actress

"Very few people understand the profound impact autism can have on whole families, affecting every area in their lives. I hope the NAS campaign can achieve greater tolerance, understanding and support for those affected."

Antony Worrall Thompson, chef and broadcaster

"If you consider the number of people with autism and their families, that makes more than two million people affected by the condition. They need access to support and services to help them in their everyday lives. We must do everything we can to help."

(Source: http://news.independent.co.uk/health/article3166420.ece).

"Support for autism taskforce."

2008-01-20T17:38:00.000Z

Published by Michelle Blackwell for 24dash.com Thursday 17th January 2008 - 12:28pm

Baroness Uddin, speaking to a packed chamber in the House of Lords urged Her Majesty's Government to support the formation of an Autism Task Force to look at the serious issues connected with autism. Peers in the House of Lords spoke about autism after Baroness Uddin had tabled a question asking the Government to support the Autism Awareness Campaign's call for a national strategy on autism and a 10 year plan of action on autism and Asperger's Syndrome.

Support for the Day of Autism called for by the Autism Awareness Campaign UK came from many Peers and MPS. Harroy Cohen MP tabled an early day motion in the House of Commons - EDM 705 signed by MPs said: 'That this House supports the call of Ivan Corea of the Autism Awareness Campaign UK for a national strategy on autism and a 10 year plan of action on autism and Asperger's syndrome; notes that the Prime Minister recently met Mr Corea and discussed autism; and calls on Her Majesty's Government to support the idea of an Autism Taskforce in order for Government departments, the voluntary sector, charities, community groups and parents groups to work together to address the serious education and health issues facing parents, carers and people with autism and Asperger's syndrome.'

Parliamentarians also raised a series of questions on autism in support of the 'Day for Autism' in Westminster.
Lee Scott MP for Ilford North and member of the House of Commons Select Committee on Health launched his 10 minute rule bill on Autism which has now reached the next reading and was not opposed by Her Majesty's Government. Children's Secretary Ed Balls addressed parliamentarians, charities and parents at the All Party Parliamentary Group on Autism chaired by Tim Loughton MP.

Ivan Corea, head of the Autism Awareness Campaign UK said: 'We are grateful to peers and MPs for supporting what we called a 'Day for Autism in Parliament.' Certainly the focus was on autism and Asperger's Syndrome. We urge parliamentarians of all parties to continue to raise the profile of parents, carers and all people with autism and Asperger's Syndrome. There is still so much suffering and parents from all over the UK and indeed people with autism and Asperger's Syndrome voiced their concerns to Children's Secretary Ed Balls, including a moving plea from a young boy with Aspergers. We all need more support as autism is a 24 hour job. I just hope and pray that Prime Minister Gordon Brown, Children's Secretary Ed Balls and Her Majesty's Government listens to the voices of parents, carers and people with autism and Asperger's Syndrome,' he said. The Autism Awareness Campaign commended the Government for including children with disabilities in the Children's Plan announced by Children's Secretary Ed Balls.

(Source: http://www.24dash.com/).

"The view from in here ..." (Observer, Guardian).

2008-01-15T12:31:00.000Z

Autism affects one in every 100 children in Britain, so why are families still struggling for the support they need? Jo Revill meets some of the parents battling the system

Sunday October 28, 2007
The Observer

Alex is not a disturbed child, although he could easily be mistaken for one. Sitting in his classroom, he often looks out of the window, and then his restlessness becomes infectious and begins to distract the other kids. Asked to read a sentence, Alex becomes recalcitrant, unwilling to try.

In the past year his autism has become more visible, more worrying. Last summer he began trying to harm himself. And then one day his mother Tracey found him on a window ledge at home, threatening to throw himself off. He was eight years old.

'The pressure of school was too much, I think,' says Tracey. 'Quite often, he was punished by being sent to the naughty room. Alex would get anxious, as he couldn't understand the lesson, and then he would distract the others. I felt he was such a sad little boy.'

Finally, Alex's family moved him to a school closer to his home in Philadelphia, near Sunderland. The new school has been more supportive, yet still cannot meet all his needs.

There are 90,000 children in Britain who have what is known as an autistic spectrum disorder (ASD). This lifelong disability, the result of a complex and thus far baffling interaction between the environment and genes, occurs in varying degrees of severity, and includes Asperger's syndrome. With one in every 100 children now affected by ASD, the challenge for the education system is to see how it can give them the tools they need to be able to prepare for life at 18.

But in many respects, sufferers lack the very skills our society increasingly takes for granted. At the heart of ASD lies what doctors call a 'triad of impairments' - difficulties forming social relationships, problems with both verbal and non-verbal communication, and the development of strong, narrow and often obsessional interests. For most families, the biggest impairment of all lies in the inability of others to accept their children, and to accept that they have particular educational needs that don't slot neatly into any easy category.

Some parents spot the symptoms immediately in their toddlers - a lack of eye contact, difficult behaviour, screaming, or an obsession with lining up rows of toy cars, followed by tantrums if one of them is even slightly moved.Tracey didn't realise that Alex had problems until he was around six years old, when she went to a parents' evening and the teacher began to talk about her son's problems with learning, and his withdrawn behaviour.

Right now Tracey and her family are going through the ordeal of trying to have both their sons, Alex, now nine, and Aaron, four, statemented. This is a statutory assessment, leading to a statement of special educational need (SEN), which has to be carried out by a qualifiededucational psychologist. It enables parents to find out exactly what their autistic child is entitled to in terms of extra support. That might encompass speech therapy, a classroom assistant, or different books.

But if 'statementing' is a straightforward word, for thousands of parents around the UK it masks a world of uncertainties, delays, incredible bureaucracy and ultimately, for some, rejection. 'I know that we have to ask for a statement,' Tracey says, 'but the school has done everything possible to put us off. They tell me Alex doesn't need one. But I've come to realise he is not getting the help he needs. I think he could grasp things if they were explained to him in a different way, but there isn't any one-to-one support. I'm really worried that if he doesn't get that help soon, it will be too late.'

Tracey's younger son Aaron has already been diagnosed with autism. 'His condition is worse,' she says, 'and he'll be much further behind. I feel that time is against us. I know it can take years to go through this procedure.'

The catch is that a statement, which has legal force, can only be processed if the local authority agrees to it. And if it does agree, and the statement shows that the child needs a lot of support, the authority will have to allocate many thousands of pounds of extra funding from its limited budget into care for that child.

An untold number of applications for statements, probably running into many thousands (no official statistics are kept), are being turned down each year in the hope that people won't appeal against the decision. What is on record is that there are around 90,000 children with autism in Britain. Around 229,100 children - 2.8 per cent of all pupils - have received SEN statements, most of whom will not be on the autistic spectrum. Pupils and their families have to wait years to get the assessment - it mostly happens around the age of 13, long after their teachers (usually) have realised that the pupil has particular learning difficulties.

Three years ago the government, being well aware of how legally fraught and expensive the statementing system was becoming, decided to try to reduce the numbers going through the process by making money available directly to the schools. Theoretically, more children should have received the help they needed because the schools now hold these budgets, under what is known as delegated funding. Primary and secondary schools run schemes known as School Action and School Action Plus to provide extra support for children. They also have an SEN co-ordinator who can assess whether the children need special learning materials, equipment or therapy.

And yet it doesn't seem to be working. Much of the money has gone into mainstream schools, but there is a suspicion that because the sums are not ring-fenced, it drifts into other areas of education. Parents become desperate as they see their children languishing on the bottom table in class, and realise that unless they go down the statement route they may never persuade the school to find the extra help for them.

Beth Reid, policy officer with the National Autistic Society (NAS), says: 'We do know that the number of tribunals being held against the refusal of a statement has risen by 60 per cent since 1997. And we also know that last year, 23 per cent of all these tribunals were for children with autism as their primary need. But many more children with statements could have ASD along with other conditions.'

The NAS's advocacy service takes 1,800 calls a year from parents having problems with their child's education. As Reid's colleague Caroline Hattersley puts it: 'Parents are very confused by the whole system, and no one is out there making it deliberately easier for them. It can take many months to sort out, and if the school is not backing you in your claim, then that makes it pretty tough.'

One mother has even trained herself as a lawyer simply to deal with her son's case. Julie Maynard spent years fighting to get a proper assessment for her son Joshua. When she began to think about how a family on a low income could afford it, she realised they couldn't. Now she acts in a voluntary capacity, helping parents to fight what she describes as the 'bean counters'.

In her sitting room sits Jack, a 12-year-old boy who has run away from his school in Hertfordshire. 'He just walked out of school, through a park that is full of drug dealers, and broke into his own home. Then he rang his mum to say he was hungry,' says Julie. 'The school has now said that she will have to take him home at lunch time - every lunch time - because they can't cope. So she's had to give up her job.'

Julie, who works as a lay representative for families at special educational needs tribunals, is now trying to find Jack's mum some free specialist help, so that she can take on the system and get Jack back into school.

Research suggests that 21 per cent of all children with ASD will end up excluded from school at some point in their lives - either for a fixed period or permanently. Many of the specialist units attached to state schools have closed over recent years, as the money has gone elsewhere - although once again, no figures are available. Julie's son Joshua was in such a unit until it closed down. After going to a tribunal herself, Joshua is now at a specialist school in Godalming where he is being helped to follow a GCSE curriculum.

'What really upsets me,' Julie says, 'is that vulnerable children are being systemically failed by bean counters and ideologists, and the pupils it affects the most are those like Jack, whose parents cannot afford to pay vast legal fees to exercise their children's entitlements.' She shakes her head with incomprehension. 'When you need a heart operation you see a cardiologist, you don't go to your GP. Why can't we adopt that simple premise in education?'

One ray of hope, however, is that the issue is moving up the political agenda. This summer the Conservative leader David Cameron promised to increase the number of places at special schools and reverse the closure of such institutions. He also challenged the ideology of 'inclusion' - the assumption that special-needs children should be taught in mainstream schools wherever possible.

Cameron's son, Ivan, was born severely disabled and needs round-the-clock care. Ever since he entered the Commons, Cameron has made a point of defending specialist education, but is also careful not to talk much about his son's disability. In 2005 he set up a commission to look at the issue of special needs education, headed by the eminent education expert Sir Robert Balchin. In an interim report, Balchin and his team made it clear that they favour a fairer and more independent assessment process, so that the decision to award a statement would not be made by a local authority, the body that holds the purse strings.

'The current system is hugely painful for families, particularly if at the end of it nothing happens,' says Balchin, a former education adviser to the Conservative government in the early Nineties. 'A lot of lawyers and experts are taken on by both sides, but with little chance of succeeding at the end of it. And I think that if you are not an articulate parent who has time to spend fighting your case, it's that much harder. My view,' he adds, 'is that an independent assessment would greatly improve the system, and make sure that the money is allocated far more accurately.'

Balchin points out that Britain has 16 per cent of all pupils marked down as having an SEN, while in other countries it is just 3-5 per cent. 'That clearly can't be right. We are convinced that the vast majority of those have not been taught to read and write properly, and have general behavioural problems. A new system which dealt with those problems properly in the classroom would save an enormous sum, and the money could actually be spent where it's most needed.'

In a statement, Lord Adonis, the government minister responsible for special educational needs, said that improving the life chances of children with special educational needs and disabilities was 'an absolute priority for us. A key part of that is equipping teachers with the skills and confidence to help children with a range of special educational needs. Overall,' he said, 'funding for special educational needs provision has risen by more than £1bn and now stands at £4.5bn.'

The NAS believes that the government has done much to try to help children, and it feels that pupils with ASD can cope well with mainstream school if they are given the right level of support. Lord Adonis's new programme for training teachers will include providing materials aimed at increasing their understanding of autism. But their own surveys suggest that for far too many sufferers, secondary schools are a very stressful environment.

One mother who ended up at an educational tribunal fighting for her son is Nusrat Mirza. Twelve-year-old Ayman has severe autism, while his twin sister, Antara, does not. He now attends a residential school in Kent where Nusrat and her husband Erfan are pleased with the education, although reaching this point has been a long, hard struggle.

'By the time he was seven, things were becoming very difficult,' Nusrat admits with some reluctance, as she sits in her kitchen in Putney, southwest London. 'Ayman was becoming challenging. He wouldn't sleep at night and he would have terrible tantrums. Also, he was becoming physically stronger, which was becoming hard, too.'

For a while, Nusrat kept him at home using an educational programme known as applied behavioural analysis (ABA), a system of intensive training from a young age aimed at helping improve the memory and behaviour of the child. 'That worked, and did improve his functioning, but I began to feel he needed to be with his peers. It wasn't enough.'

The family took out a loan of £10,000 to pay for lawyers and experts so that they could take their local authority, Wandsworth, to a tribunal to challenge their decision not to allow him to go to a residential school in Dorset, which they felt was appropriate. 'They wanted him instead to go to a local day school which was for children of mixed needs. They could not possibly have met the needs of Ayman, who has no verbal communication. We also needed to have some kind of family life at home for my daughter,' Nusrat adds. 'I don't think they really understood what it was like.'

Their tribunal failed, but eventually Ayman was able to go to Bradstow School in Kent, a residential school maintained by Wandsworth council for children with severe autism. He goes home during holidays and the family takes him out every three weeks. 'He has a future, and we have a future now,' said Nusrat. 'I just wish our journey getting to this point had been a little less fraught.'

How we see people with ASD, a complex disability which is never the same in any two people, probably says more about the people without it than those with it. Much of the problem in educating children with the condition has been that the public finds it hard to engage with people whose world is so different.

The photographs we have published on these pages are taken from an exhibition beginning this week in London, and then touring the UK, exploring how people with autism see life. The exhibition is part of the NAS 'Think Differently About Autism' campaign, which is trying to overcome the gulf between the public's understanding of the condition and the reality of a diagnosis. It's a big gap, and probably one that will never be fully bridged.

One of the photos is of Ayman Mirza cradling his toy guitar. A poem written by Antara to her brother is on his school's website, and gives you an indication of how she misses him and his unconventional musicality:

'The world he finds hard to understand,
Words mean nothing to him,
Music is his life,
In his own way he can sing.'

· The As I See It exhibition features photographs taken of and by people of different ages and gender with varying levels of autism. The exhibition runs from tomorrow until 4 November at The Gallery on Charing Cross Road, London. It will then travel throughout the UK as part of the Think Differently About Autism campaign (www.think-differently.org.uk)

(Source: http://observer.guardian.co.uk).

"Freedom of expression" - The Times.

2007-12-18T11:15:00.000Z

From The Times

December 15, 2007

Professor Simon Baron-Cohen reports on advances in helping children with autism to understand feelings

Autism comes by degrees. People with the milder form, Asperger’s syndrome, display communication difficulties and “obsessional” interests. In severe cases, however, it can be as if your child is locked in a glass bubble, staring vacantly past you as you desperately try to make eye-contact.

The thought of never being able to fully communicate with your child, or to know what is going on inside his or her mind, can be heartbreaking. And this is not helped by the fact that autism is still the focus of many wild claims and misconceptions. However, with a recent report stating that autism costs the UK economy £28 billion a year, a better public understanding of this condition is desperately needed.

Fortunately, in my 26 years of working with people with autism and their families, and now as director of the Autism Research Centre at Cambridge University, I have seen vast improvements in the understanding of autism by the medical, psychological and educational professions, and among the public. I have also seen the growth of educational and clinical provision, and specialist techniques improve, so now we have the capability to provide excellent support for people with autism and their families. Here are the latest scientific theories on what causes autism, beneficial interventions and some commonly held myths.

WHAT ARE THE CAUSES?

According to a study in The Lancet last year, an estimated 1 per cent of the population lie somewhere on the autistic spectrum. This figure represents an increase over earlier ones but this rise is likely to be due to better diagnosis and awareness of the condition. Autism spectrum conditions result from alterations in brain development, affecting how an individual perceives, learns and communicates. The two main subgroups are autism and Asperger’s syndrome (see box).

Using the latest brain scanning methods such as fMRI (functional magnetic resonance imaging), studies from labs in Cambridge and London, and confirmed in labs around the world, have revealed that certain brain areas are underactive in people with autism. The amygdala (sometimes thought of as the emotion centre) and the medial prefrontal cortex (involved in social behaviour) are underactive in people with autism spectrum conditions when they are trying to decode another person’s facial expression.

Studies from San Diego suggest that the autistic brain is also growing too fast in early childhood, and researchers in Carnegie Mellon University have found that different regions of the brain are not connected in the usual way. New work from Cambridge suggests that elevated testosterone levels in the foetus, in the second trimester of pregnancy, is associated with a greater number of autistic traits. This finding may help to explain why many more boys than girls develop an autism spectrum condition. In New York, researchers are experimenting with boosting levels of a different hormone, oxytocin. This is sometimes called the “love hormone”, as levels increase in intimate relationships. Elevated levels of the hormone are associated with being more trusting and better able to read emotional expressions. It may be relevant that women produce twice as much oxytocin as men.

Autism and Asperger’s syndrome run in families. If there is one child who has a diagnosis on the autistic spectrum, the likelihood of another child also having a diagnosis is about 5-10 per cent, which is higher than the general population rate. Molecular genetic studies are focused on identifying the key genes that might play a role in increasing the risk of a diagnosis. Studies of twins have established that it is not 100 per cent genetic, since even among identical twins, when one has autism, the likelihood of both twins having autism is only about 60 per cent. This means there must also be an environmental component, but what it is remains unknown.

WHAT HELPS?

People with autism or Asperger’s syndrome need family and individual support, delivered by social services, special education, sheltered employment and sheltered living (where necessary). Schools such as TreeHouse in North London are excellent examples of what can be provided: small class sizes, at times even one-to-one teacher-child ratios, where teaching is aimed at building simple skills and rewarding the child for every small step they make. Specialist teachers shape such skills into more complex ones, giving the child the experience of success and thus self-confidence. Such schools have to be highly organised because such children have problems in coping with unexpected change.

Recent work has shown that tailor-made children’s animation may benefit children with autism. Among the more unusual nominations at this year’s Bafta Children’s Awards was The Transporters, a children’s animation DVD, with tram, train, tractor and cable car characters, in which human faces have been grafted on to the vehicles. It was created with government funding to help children with autism improve their emotion recognition. The idea behind it was that the child with autism is drawn to watch the predictable, mechanical movement of the vehicles. Putting faces on to vehicles means that the child is exposed to human faces showing emotions. This year the Government gave 40,000 free copies of the DVD (see www.transporters.tv ) to families with a child on the autistic spectrum under the age of 8. This animation builds on other specialist educational software (for parents and teachers to use), such as Mind Reading, a DVD that shows actors expressing every human emotion in the face and the voice, to teach people with autism the skill of emotion recognition (www.jkp.com/mindreading ).

The message is that a diagnosis of autism does not mean there is no hope for learning and development. Parents, therapists and teachers wanting to know which methods to try should visit a wonderful new website (www.researchautism.net ) that provides impartial summaries of the evidence for or against a different method.

MYTHS ABOUT AUTISM

The MMR vaccination causes autism

There is no strong evidence for this claim. In Japan, for example, although the rates of autism were rising (as they have been worldwide), they continued to rise even after the withdrawal of the MMR public health programme.

Autism is caused by poor parenting

This idea has been disproved. Autism is found in families where other children have been raised successfully, and the fact that autism involves atypical neurological development from the earliest stage shows that it is not a reaction to parental behaviour.

For more information, The National Autistic Society, www.nas.org; the Autism Research Centre at Cambridge University, www.autismresearchcentre.com. Professor Baron-Cohen is the author of Autism: The Facts (OUP, £15)

What’s the difference between autism and Asperger’s syndrome?

Differences in IQ

In autism the person may have additional learning difficulties (below average IQ), while in Asperger’s the person has average or above average IQ.

Language development

In autism there is language delay (a child not using words by the age of 2) whereas in Asperger’s syndrome a child’s speech develops normally.

Social difficulties

Autism is easier to recognise than Asperger’s: the child with autism may be so avoidant of others that it is plain to see his or her social difficulties. A child with Asperger’s, in contrast, has more subtle social difficulties. He or she may question people intrusively; or talk about their favourite topic (for instance, the names of all lizards in Africa) long after their listener has lost interest in the conversation.

(Source: http://women.timesonline.co.uk/).