Published Monday, 26 January, 2009 - 22:17
As soon as I won the political lottery and was drawn first out of the private members’ ballot in December, I was inundated with numerous causes and issues, all worthy of support.
However, believing that a Private Members’ Bill should cover an area that could be overlooked by mainstream legislation, it was the Autism Bill that really captured my attention with devastating personal accounts such as this:
“She has quite calmly said that when we die, she plans to kill herself because she knows she will be completely alone and unable to care for herself. She weeps on a daily basis because she is so scared of the future. There is nobody to help her manage her daily life, and more importantly, who will love her when we're gone?” Parent of an adult with autism
The Autism Bill builds on the sterling work of my colleague Angela Browning and MPs across the House, such as Janet Dean and Liz Blackman. This is not a matter for party politics, but a critically important issue that is far too often overlooked and which affects people in every constituency. It is simply unacceptable how hard people affected by autism have to fight for the support that should be theirs by right. There are over 500,000 people with autism in the UK, yet despite the scale of the need, autism receives nowhere near the attention it deserves and there is a woeful lack of understanding, support and services for people affected by this serious, lifelong and disabling condition. The continuing postcode lottery of autism services across the UK is incredibly damaging. The National Autistic Society’s I Exist campaign revealed a stark daily reality for thousands of adults with autism who are isolated and ignored, unable to access support and often dependent on ageing families. Shockingly, it also revealed that at least 1 in 3 adults with the condition are experiencing serious mental health difficulties as a result.
It is the failure of the majority of local authorities to fulfil their responsibilities towards people with the condition, which has made the Autism Bill absolutely necessary. Very little current policy or guidance specifically applies to children or adults with autism and what is available isn’t being followed. One study found two thirds of local authorities have no idea how many children with autism there are in their area and, another, that just two are aware of the number of adults. Many local authorities are also failing to pass on vital information from child to adult services. Young people with the condition are thus being prevented from reaching their full potential, with the result that 40% of adults with autism live at home with their parents and over 60% are dependent on them for financial assistance. Many parents perform their role as carers without any assistance whatsoever, which can leave families isolated and often at breaking point.
Many professionals fail to understand the complexities of autism and there continues to be a widespread lack of training in the condition within local authorities - over three quarters do not have an autism training strategy - which often means that adults with the condition receive inadequate support or fail to qualify for any support at all. As support tends to be delivered locally either via a learning disability or mental health team, people with autism frequently fall between the two, demonstrated by the experiences of this adult with autism:
“Because of high IQ, I am not eligible and do not fit into any category for support. They do not recognize my disability and send me away. Even if I was eligible, there is no autism support here for people like me.”
In particular, there is a huge deficit in the kind of low level, cost-effective and relatively easily provided support, such as social groups and social skills training, that can help adults with the condition to be more independent.
Some of the simplest things, though, can make the biggest difference.
Local authorities need to know how many people with autism there are in their area and share information with relevant bodies; without this the needs of people with autism will continue to be excluded from the commissioning and planning of services. So the Autism Bill aims to: improve information on the number of children and adults with autism; ensure effective transition from child to adult services; and to ensure access to appropriate support and services for people with autism in adult life – all things that local authorities should already be doing.
With an estimated cost to the UK economy of around £28 billion, it is not just families who are bearing the social and financial cost of autism. When the right support is in place at the right time, however, it could prevent people’s needs from escalating, not only vastly improving their quality of life and that of their families, but also removing the need for more costly intervention – reducing the burden on the taxpayer.
The Autism Bill is backed by The National Autistic Society along with 13 other autism charities. Many MPs, cross-party, have already offered their support to help create the first ever autism law and I hope many more will back this important bill at its second reading on the 27th February – it has the potential to radically transform thousands of lives in every constituency and community.I hope that together we can pass a measure that will make a real difference.
The public can ask their MP to back the Autism Bill at www.autism.org.uk/autismbill.