By Steve Connor, Science Editor

Thursday, 10 June 2010

Scientists have discovered the first significant link between autism and DNA, in a study that could revolutionise understanding of this disturbing behavioural disorder which affects more than half-a-million Britons.

The researchers believe the changes they have found to the genetic make-up of autistic children play a significant role in causing the developmental illness. Their findings could eventually lead to early diagnostic tests for autism and new forms of treatment, based on counteracting the fundamental errors in a patient’s genetic code.

However, the researchers have cautioned that their discovery, which emerged from the biggest international study of its kind into autism, is still preliminary and it will take many more years of intensive investigation to understand and treat the genetic alterations that increase an individual’s susceptibility to the disorder.
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The results emerged by analysing the genomes of nearly 1,000 autistic individuals and comparing their DNA against that of more than 1,200 unaffected people. Scientists found a series of important differences between the DNA of the two groups that they believe could account for why autism has a strong genetic component that may trigger the condition under certain circumstances.

“Our results substantiate the importance of genes as susceptibility factors in autism. Our results will lead to a paradigm shift when it comes to understanding the root causes of autism,” said Stephen Scherer, of the Hospital for Sick Children in Toronto one of the lead authors of the study published in Nature. “We find that the genetic variations we discovered are actually rare in their frequency, meaning that most individuals with autism are actually probably genetically quite unique, each having their own genetic form of autism.”

Autism is a complex neurological disorder that is normally diagnosed in the first few years of infancy, but can go unrecognised for years. It inhibits a child’s ability to communicate and to develop normal social relationships.

Autism spectrum disorder – which can range from mild to severe – affects nearly 1 per cent of children and the incidence has increased dramatically in recent years, partly as a result of wider diagnostic criteria and improved recognition of the problem. Autism tends to run in families and is known to have strong genetic and environmental components.

The Autism Genome Project, involving more than 1,500 families from across the US, Canada, Britain and the rest of Europe, attempted to identify the genetic side to the disorder through genome-wide scans of the DNA of patients. The researchers concentrated on a type of genetic difference that distinguishes one person from another, called copy number variations (CNVs), where the same stretch of DNA containing up to 20 genes is replicated several times.

They found that autistic children were likely to carry about 20 per cent more CNVs than ordinary children. They also found that many of the CNVs found in autistic children were not carried by their parents, but were newly arisen, probably prior to conception during the formation of the egg or sperm – like the chromosome changes leading to Down’s syndrome.

Some of the CNVs also involved genes already known to affect brain development. Three of the disrupted genes, for instance, are involved in communication between nerve cells, and one of them had already been associated with autism and some other mental disabilities.

“Our research strongly suggests that this type of rare genetic variation is important and accounts for a significant portion of the genetic basis of autism,” said Professor Tony Monaco of the Wellcome Trust Centre for Human Genetics at the University of Oxford, who led the British arm of the international project.

“By identifying the genetic causes of autism, we hope in the future to be able to improve the diagnosis and treatment of this condition which can affect children and their families so severely. Just knowing about these genetic changes can help the families involved come to terms with why their child has autism, but it can also be important where there are siblings too in determining their future risk.”

Some of the genes involved in the genetic changes have been linked with aspects of brain development such as the growth of nerve cells or the proper functioning of the nerve junctions (synapses) that allow one set of brains cells to communicate with another set.

“This is good evidence that this type of genetic variation is important to understanding the causes of this condition,” said Alistair Pagnamenta of the University of Oxford, one of the lead authors of the study.

The scientists hope that by understanding the metabolic pathways in the developing nervous system that the genes control, they will be able to identify promising new targets for the development of drugs to treat autism.

Dr Scherer said: “We’re able to tie these genes together in the same biological pathways, they seem to be involved in how the brain functions. Hopefully we can design therapies to target these pathways.”

They believe that eventually it may be possible to devise genetic tests to determine a child’s predisposition to autism so they can be diagnosed before more obvious symptoms become apparent. Such tests are unlikely to be able to provide an unequivocal result – just a probability for the chances of developing autism.

Case study: ‘We couldn’t go to the cinema, or even on family holidays’

Polly Tommey, 43, Middlesex

My son was diagnosed with autism when he was two and a half. For a mother to hear that her child is autistic is utterly heartbreaking. I remember going to the library and looking up a definition of autism as “the most severe form of mental illness. Most patients, if not all, end up institutionalised”. It took us a year to get over the diagnosis.

Billy started off “low-functioning” and couldn’t speak. He had no idea that we were his parents and would constantly bang his head against the floor. We couldn’t take Billy outside the house because he would run off. He had no understanding of danger. The only safe place we could leave him was in the car with all the doors locked. There were no possibilities of cinema outings, and even family holidays were a non-starter.

Autism makes it very hard to live like a normal family does. There is very little treatment available on the NHS, and with multiple trips to America for treatment we have incurred thousands of pounds of debt.

The most prominent steps we have made towards helping Billy have come by addressing health issues. Autism sufferers are picky eaters, and for years all he would eat was Weetabix and milk. Once we addressed diet issues, things improved. He later got into an excellent school, which helped build confidence.

Now, at 14, Billy is classed as a “high-functioning” child. He can speak, read and write and he’s doing things again. He has a level of awareness of things going on around him. And he’s number three in the world on Mario Kart Wii.

Most concerning is the fact that there is very little support for adults with autism and this country is not properly equipped to handle the hundreds of children who are going to grow up with autism. It has to be more carefully looked at and planned for in the future.

I know a pub owner who bought a house and is letting it out to autism sufferers a

15 October 2009

The Children’s Secretary, Ed Balls today announced the appointment of Jean Gross as England’s first Communication Champion.

The appointment of a Communication Champion was a recommendation in the 2008 Bercow Report on services for children with speech, language and communication needs, and forms part of the government’s Better Communication Action Plan developed in response to the Bercow review.

The Communication Champion, funded jointly by the DCSF and Department of Health, will be responsible for working across Government, delivery partners and other stakeholders to co-ordinate and build on initiatives to improve services for children and young people with speech, language and communication needs. The champion will also plan, organise and lead a National Year in 2011 focusing on the importance of developing children’s communication skills.

Speaking about the appointment Ed Balls said:

“Speech, language and communication are crucial to every child’s ability to access and get the most out of education and life. The Champion role is very important and I am delighted to announce Jean Gross’ appointment.

“Her background and wide experience makes her uniquely qualified for the role. In her current role as Director of the Every Child a Chance charity, she successfully championed effective literacy and numeracy intervention for our lowest achieving, disadvantaged children through the Every Child a Reader and Every Child Counts programmes; we look forward to seeing the same impact in her new role.

“Jean Gross’s appointment as Communication Champion reflects my determination to improve the lives of children with speech, communication and language needs. Jean will help us to ensure that we continue to give priority to the needs to children with these difficulties.”

Care Services Minister Phil Hope said:

“I am delighted with this appointment. Jean will have a key role to play in helping us to raise awareness of children with Speech, Language and Communication needs and to build on the good practice we have in many services already.”

Jean Gross said:

“Good communication skills are vital. Without them children have little chance of getting good GCSEs or getting a decent job. These skills are what employers want, and they are what we need to make good lifelong relationships and resolve conflicts. But one in ten children don’t have these skills, and in disadvantaged areas research has shown that this rises to as much as one in two.

“Speech and language difficulties are now the most common form of special educational need for younger children, sometimes arising from specific impairments, sometimes from social disadvantage and sometimes from both. Without help, a third of children with speech, language and communication difficulties could go on to have mental health problems. In one study, two thirds of young offenders had language problems.

“My role will be to make information like this available to parents and all those who work with children or commission services for them, so that we all give a greater priority to this area. I’m delighted to have the chance to build on the great work done by all those involved in the Bercow Review and I hope that together we can make a big difference to the future of every child who is currently denied the fundamental human right of skilled communication.”

Anita Kerwin-Nye, Director of The Communication Trust, said:

“As the third sector representative on the Communication Council, we welcome the appointment of Jean Gross as the Communication Champion. The role of Champion, and the associated National Year of Speech, Language and Communication, were key campaign asks for the voluntary sector.

“This is the final piece of the Better Communication Action Plan programme. The Communication Trust looks forward to working with Jean, and other members of The Communication Council, to truly capitalise on opportunities presented by the Action Plan. Members of the Trust have already mobilised their resources to support the 2011/12 National Year of Speech, Language and Communication. Together, we will make a real and sustainable change for children and their families.”
Editor’s Notes
This press notice relates to ‘England’

1. John Bercow MP highlighted the importance of speech, language and communication in the

July 2008 Bercow Report. It identified the areas where services need to improve to help

children and young people with speech, language and communication needs to get the best out of life.

Following the Bercow Report, the Government published Better Communication, the December 2008 speech, language and communication needs action plan. The action plan makes commitments to carry out a range of initiatives across Government, culminating in the National Year focusing on the importance of Communication in 2011. The action plan committed to meet the Bercow Report recommendation to appoint a Communication Champion. The Bercow Review Of Services For Children And Young People (0-19) With Speech, Language And Communication Needs, is available at http://www.dcsf.gov.uk/slcnaction/bercow-review.shtml .

2. The Government made its formal response to the Bercow Report with the Publication of Better Communication, the SLCN action plan, on 17 December 2008. The action plan is available at http://www.dcsf.gov.uk/slcnaction/actionplan.shtml , the Written Ministerial Statement made at the time is available at http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm081217/wmstext/81217m0001.htm#08121773000002 and the press notice published alongside the action plan is available at http://nds.coi.gov.uk/clientmicrosite/Content/Detail.aspx?ClientId=46&NewsAreaId=2&ReleaseID=387816&SubjectId=36 .

3. The Communication Champion will be independent of Government and will play a key role in promoting the importance of communication skills to children and in helping us to make a success of the action plan commitments. The Champion will work to inspire commissioners and service providers to develop services that improve outcomes for children with communication needs and spread good practice to support the development of effective communication skills. They will provide a strong independent voice for children with communication needs, driving improvements in services by working across England with the full range of national, regional and local partners in the voluntary, public and commercial sectors.

4. The purpose of The Communication Trust is to raise awareness of the importance of speech, language and communication across the children’s workforce and to enable practitioners to access the best training and expertise to support the communication needs of all children, more details are available at http://www.thecommunicationtrust.org.uk . The Royal College of Speech and Language Therapists is the professional body for speech and language therapists and support workers, more details are available at http://www.rcslt.org .

5. Jean Gross is currently Director of the Every Child A Chance Trust. One of the programmes the charity supports is Every Child Counts - a national initiative to tackle children’s mathematical difficulties. Another is Every Child a Reader, which provides Reading Recovery and other early interventions to children with literacy difficulties.

Jean was until 2005 Senior Director within the government’s Primary National Strategy, responsible for its work on overcoming barriers to achievement. A former teacher, lecturer, educational psychologist and Head of Children’s Services in a large urban local authority, Jean is a national expert on inclusion issues. Her work has focused on improving outcomes for children with significant difficulties in language, literacy and mathematics, promoting practitioners skills in inclusive teaching, and developing children’s social, emotional and behavioural skills through the SEAL (Social and Emotional Aspects of Learning) whole-curriculum approach. She is a Visiting Fellow at London University’s Institute of Education. She frequently acts in an advisory capacity to government, most recently in writing its guidance on the application of school behaviour policies to vulnerable young people, and writing new national special needs materials for trainee teachers. She is the author of numerous articles and best-selling books on special educational needs, including Special educational needs in the primary school: a practical guide (2002), Special educational needs and school improvement (2004), and the recent Beating Bureaucracy in SEN (2009).

Contact Details

Public Enquiries 0870 000 2288, info@dcsf.gsi.gov.uk

Press Notice 2009/0190

If you can show you have a disability, you may travel at half the adult or child fare. A carer with you may also travel at half fare. For more information on fares from stations please see fares pages on WSR website.

http://www.west-somerset-railway.co.uk/Fares_info.html

We recognise the child with a disability as a child first and foremost and try to work for them as children rather than for their disability. We want to improve their lives and help them be comfortable with their world, giving them the chances for experiences and enjoyment that all children should have.

We aim to spread understanding and tolerance of all neurological conditions, leading to a culture of inclusion. In which children can make a choice about their life’s direction and participate fully in society.

Cerebra services add value to the child by taking a holistic approach. Fun, happiness and letting children (and their families) enjoy their childhood are very important to us.

http://www.cerebra.org.uk

The topics for Spring 2010 are as follows:

Mike Turner, SEN Strategic Manager in the Local Authority will be co-ordinating responses to the forum posts from parents and carers.
“There are four key objectives, which the Local Authority expect to achieve through this project. It will enable parents to:

* celebrate effective SEN practice in schools/early years settings provision;
* ensure that this effective practice is more widely shared;
* identify areas where we need to work together to improve practice; and
* provide an opportunity to contribute to policy development by the Local Authority.”
Mike Turner, SEN Strategic Manager.

Topic 1 - Support for literacy difficulties (including dyslexia)

Tell us what your school is doing to identify and support children with literacy difficulties (including dyslexia).
What has been suggested as a way of working with your child at home to support what is happening in school?

Topic 2 - Transition (the process of moving from one school to another)
Responses on 14+ transition to adulthood (up to 25) would be encouraged.

Tell us what makes the transition process successful for children with SEN?
What would help to make it even better for transferring pupils and for you, as their parents or carers?

The forum can be found at www.somersetparentpartnership.org.uk/channel/index/id/1270

January and February meetings will be in the Upstairs Coffee Shop in County Stores. We usually sit on the comfy chairs on the left or on the opposite side by the entrance.

Diary dates and plans are as follows:-

Wednesday, January 27th, 10am to 12 noon - Upstairs Coffee Shop, County Hall
Wednesday, February 24th, 10am to 12 noon - Upstairs Coffee Shop, County Hall
Wednesday, March 31st, 10am to 12 noon - Parmin Hall, Parmin Way,off Normandy Drive. Speaker Amy Phipps, Regional Officer National Autistic Society.
Wednesday, April 28th, Spring Lunch, Venue TBA
Wednesday, May 26th, Speaker and Venue TBA
Wednesday, June 30th, Summer Lunch

All Welcome. Any questions contact Angela via this website or on 01823 352488.

We are also very proud that Lazarus Holidays has been appointed as a Premier Agent of the UK’s leading operator specialising in holidays for people with disabilities and this recognition is all the more pleasing as this status is not ordinarily granted to new agents. We are able to provide a complete holiday package: flights, accommodation, which has been rated by qualified assessors in respect of facilities to ease disability, and assisted private transfers. We will also be able to provide any mobility aids you may require to assist making your holiday that much more comfortable.

In addition we will also be providing cruise packages sailing out of the UK, mainland Europe, the Caribbean and Worldwide. Further, through a specialist Indian Ocean operator, not only will we provide truly unforgettable paradise style holidays but also tailor made Wedding and Honeymoon packages on the beautiful island of Mauritius, which for people with disabilities, we believe is unique to Lazarus Holidays in the UK!

We are very excited about this new venture and believe we are providing a unique and invaluable service to disabled people. One of the cornerstones of the success of Lazarus Group Companies is the unrivalled level of personal and individual service. As you are aware our ethos is to treat everyone as an individual and treat all with equal respect. You have my personal guarantee that when you book your overseas holiday with Lazarus Holidays you are guaranteed to enjoy the same high level of service upon which we have built the business.

We have a team of specially trained travel consultants eagerly awaiting to unlock your dream holiday. It’s only a phone call away and easier than you may think to arrange for you so pick up the phone today and ring on 01484 421440 or complete the form below and mail us with your requirements.

Visit our web site at www.lazarusholidays.co.uk

I’m writing to tell you about a significant victory in the campaign to save Disability Living Allowance and Attendance Allowance.

Secretary of State for Health, Andy Burnham MP, announced yesterday that Disability Living Allowance will not be scrapped and the money used to fund the proposed national care service.

Many thanks to all those who showed their support for this campaign by signing the online petition that we told you about in our last campaign newsletter. You should be very proud of your involvement as you have made a real difference to the lives of disabled people who depend on Disability Living Allowance to live their lives in the way they want.

But we cannot hang out the victory bunting just yet as the future of Attendance Allowance still hangs in the balance. Please continue to show your support of this campaign and help us to ensure that Attendance Allowance stays.

If you haven’t already, please sign the petition!

And write to your local MP asking them to convey your concerns to the secretary of State for Health. Read the Disability Charities Consortium (DCC) statement.

Don’t let the campaign stop here - please pass this on to any of your friends or contacts that may wish to know.

Thanks again for making a difference.

Yours sincerely,

Jamie Robertson
Local Campaigns Officer
Scope
6 Market Road
London
N7 9PW

Telephone: 020 7619 7370
Email: jamie.robertson@scope.org.uk

Matthew Downie
Campaigns Manager

The National Autistic Society, registered office: 393 City Road, London, EC1V 1NG, UK
Tel: +44(0)20 7833 2299, Fax: +44 (0)20 7833 9666, Email: nas@nas.org.uk
VAT registration number: 653370050; a charity registered in England and Wales (269425) and in Scotland (SC039427)
Copyright The National Autistic Society 2009

The following is a list of activities currently offered.

REGULAR ACTIVITIES

Hillside Children’s Centre - Children’s Activities

1st and 3rd Saturdays of the Month
10.30 to 4pm for under 9s with parent/carer

Sydenham Children’s Centre Bridgwater

Various Activities
2nd Saturday of the month.
10 to 3pm for under 9s with parent/carer.

The Levels, Children’s Centre, Langport

Last Saturday of the month
Activities for under 6s with parent/carer

Jungle Jungle - Soft Play, Yeovil

1st Tuesday of the month
Under 13s and siblings
£6.50
5pm to 6.30pm

Willow Village - Soft Play- Bridwater (Blue slide Club)

3rd Tuesday and 4th Monday of the month.
Under 13s and siblings
£4.50
5pm to 7pm

Over 9s Club

1st and 3rd Sunday of the month.
Activities out and about such as a picnic on the beach, walks, cinema, bowling etc.

If you would like to know more about The Children’s Autism Outreach Team or to enquire about or book any of the activities mentioned then telephone Pauline or Barbara on 01458 252232.