Isolation and dependency are the stark and desperate reality for countless people with autism in this country.
Almost two thirds of those affected by the condition are not getting the help and support they need, according to research carried out by the National Autistic Society.
I want to see the right services and support in place so people with autism can reach their true potential – the right help at the right time can have a profound effect.
Diane Hirst, whose child has autism.
And at least one in three adults with the condition is experiencing serious mental health difficulties as a result, according to the charity's survey.
Now the society hopes real progress is about to be made with the second reading of the Autism Bill – the first ever autism-specific piece of legislation in England and Wales.
Burley-in-Wharfedale MP Philip Davies is among those backing the Bill being put forward by the MP Cheryl Gillan, which aims to end the postcode lottery of autism services across the UK and help people with the condition to meet their full potential.
Mr Davies said the Bill had the power to transform lives.
He added: "I am very pleased to be supporting the Bill. The reason I think this Bill is so important is because it proposes the provision and promotion of services for both adults and children with autism (including Asperger's) whereas currently many adults in particular with autism get no service at all. This Bill could well make a real difference to very many people with autism who too often at the moment are neglected."
He said the Bill would also address the problem that some people do not get the services they need simply because of where they live and would give all local authorities a duty to provide the appropriate help.
Margaret Marshall, the chairman of Leeds Asperger Adults – a group which stretches out to Otley and Ilkley – pointed to some of the problems faced by people who have the condition.
"Lack of awareness and lack of support seem to be universal barriers faced by adults with an autistic spectrum condition," she said.
"Currently, individuals on the autistic spectrum fall between mental health and learning disability services which are often inappropriate as it is in fact a developmental disability. The Autism Bill seeks to address this issue by ensuring access to appropriate support and services for people with autism in adult life."
The Bill, which is backed by the National Autism Society (NAS) and 13 other autism charities, needs 100 MPs to vote in its favour on February 27 – and people all over the country are being urged to lobby their MPs to ensure it gets enough support.
Miss Gillan, the MP for Chesham and Amersham, announced last month that she would take the bill forward, amid claims by the NAS that many local authorities were completely failing to meet the needs of the over half a million children and adults with autism in the UK.
She said: "It strikes me as wholly unfair how hard people affected by autism have to fight to get the help they so desperately need. The continuing postcode lottery of autism services across the UK is simply unacceptable and incredibly damaging. Creating the first ever autism law is crucial to helping local authorities take the necessary action and recognise their responsibilities towards this severely excluded group. Many MPs, from across the political divide, have already offered their support and I hope many more will back this vitally important bill – it has the potential to radically transform thousands of lives in every constituency and community."
The announcement comes after the NAS 'I Exist' campaign revealed many people with autism don't receive the kind of support that would help them achieve their potential in adulthood and at least one in three adults with the condition are experiencing serious mental health difficulties as a result.
After the report was published last year people all over the country spoke out about the difficulties their families were facing.
One of them, Diane Hirst, from Hawthorn Avenue, Yeadon, who has a child with autism, wrote to Wharfedale Newspapers expressing her concern.
She said: "Autism is a lifelong condition, yet as 'I Exist' the new report from the National Autistic Society has found, many adults with the disability struggle to get the help they so desperately need.
"I want to see the right services and support in place so people with autism in Leeds can reach their true potential – the right help at the right time can have a profound effect."
"That is why I'm supporting the NAS 'think differently about autism' campaign. I urge people in your area to visit www.thinkdifferently.org.uk and help put pressure on local and national government to do more to transform the lives of adults with autism."
Despite the I Exist campaign, the charity says local authorities have been surprisingly slow to react. They say around two thirds of local authorities in England do not know how many children with autism there are in their area and just two are aware of the number of adults with the condition.
Mark Lever, chief executive of the NAS, said; "Very little current policy or guidance specifically applies to people with autism so Cheryl Gillan's Autism Bill is great news for the thousands of people with autism who tell us they feel isolated and ignored. Without the right help autism can have a profound and sometimes devastating effect and we will keep campaigning until we see real change at ground level."
The Autism Bill aims to place a duty on local authorities to recognise and fulfil their responsibilities towards people with autism. Measures proposed include improving local information on the number of children and adults with autism, providing effective support from child to adult services and tackling the chronic lack of help for adults with the condition.
The NAS is urging people to email their MP to back the Bill at autism.org.uk/autismbill
Case Study 1
As the mother of a young son who suffers from autism, Kirsty McGowan knows only too well the fears and challenges the condition brings. Her son Charlie, 5, pictured, was locked in a world of his own which left him confused and terrified and unable to relate to other people But he is making impressive progress thanks to the pioneering home-based Son-Rise programme and a comprehensive nutritional programme. Kirsty, who lives in Horsforth, welcomed the autism Bill but argued that it did not go far enough. She said: "I am very heartened by the fact that there is going to be a Bill. Hopefully it might pave the way for the future." She says the Bill will address important issues, but she believes it should be seen as a starting point. Kirsty argued that the Bill did not address issues which were pertinent to young children with autism. She said: "There is nothing about education of children. There is nothing about early diagnosis. There is nothing about bio-medical intervention, which a lot of us are campaigning about." Kirsty said her son had nutritional deficiencies, in common with more than 90 per cent of people on the autistic spectrum. And she said whereas that nutritional programmes were commonly used in America that was not the case in this country. "It has already made a huge difference to Charlie," she said. She said education was another area where more provision needed to be made. But she argued this was not addressed by the Bill, which looks at the problems facing young people moving from education into adulthood. She said: "At least there is going to be a Bill that has recognised that things need to be addressed. I do welcome it – and if it paves the way for future legislation that will be a good thing."
Case Study 2
Susie Grigalashvili, who has an 11-year-old son with autism, says she would be happy to see any measures to offer extra help to special needs children. Susie, of Menston, said: "Max is a lovely, sweet child, but very difficult to motivate. As regards his potential in life and long-term future he hasn't really got the ability to progress. "It sounds awful – but that is the reality of it." "We love him, and I would not change him for the world – but we just fear for his future. "In a sense he is very much cosseted here. We look after him and he is at school every day. He gets taken in a taxi and dropped back in a taxi. "My six-year-old goes to parties, football and rugby. But basically the big things in Max's life are myself and my husband. As you see them grow up, in a sense they move even further away from their peers. "You are supported up to 16 or 18 if you are lucky and then everything fades away, and there is no help." She said any extra support for people with autism would be welcomed.
Case Study 3
The Bill was also welcomed by Menston man John Riley, whose 15-year-old son, Christopher, is on the autistic spectrum, but is high-functioning. The family moved out to Australia when Christopher was one, but they moved back to this country in 2006 because they felt services were better here. "The facilities offered over there were limited – that is the reason we moved back to England because we felt they were a little better," said Mr Riley. And he is pleased with the level of support offered to his son by Ilkley Grammar School. "The school is very good, and if there are any issues they are onto it like a ton of bricks – but we talk to other parents who don't have such a good experience and they have problems with schools. "Whilst we have found that the support at school is good it is more after school when they become young adults that can be quite difficult. "I think anything that can be done will help – very definitely."
To find out more about Autism and The Son-Rise Program and the Autism Treatment Center of America, please go here: http://www.autismtreatmentcenter.org
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