Autism in the UK today
Published Monday, September 14, 2009 - 19:47
Autism is a serious, lifelong and disabling condition which affects how individuals communicate with and relate to other people and the world around them. It is a spectrum condition which means it affects each person in a different way.
Some may be able to live relatively ‘everyday’ lives whilst others may need a lifetime of specialist support. Crucially though, the right support at the right time can make an enormous difference to peoples’ lives.
I was a newcomer to the autism world when I joined the National Autistic Society (NAS) almost two years ago, and I was immediately struck by the passion and energy of the autism community. I soon learned that very often this passion is borne of having had to fight - sometimes for years - for basic services and support. All this, while learning to live with a condition which is greatly misunderstood and much more common than most people realise.
Along with our supporters we have been campaigning hard on these issues. Over the last year it may seem as if autism has never been far from the media, and children and adults with the condition are receiving more political attention than ever before. In England we stand on the precipice of achieving the first ever autism law and are only months away from a national adult autism strategy. In Wales and Northern Ireland similar action plans are in development. However, there is still some way to go before people with autism will be able to enjoy the same rights and freedoms as everyone else. There remains a widespread lack of understanding of what it means to be one of the over half a million people living with autism in the UK today. Whether it is in education, at work or in the community, they are frequently misunderstood and discriminated against with profound consequences for individuals, families and wider society. Children still wait around three years for a clear diagnosis and are disproportionately excluded from school and the majority of adults say they have been bullied and harassed in adult life and struggle to find work. This is simply unacceptable.
With autism costing the UK economy an estimated £28 billion a year it is abundantly clear that neither the Government, people with autism nor the taxpayer are getting value for money from existing autism services and support, leaving those affected by the condition feeling isolated, ignored and often at breaking point. It is, therefore, vital that all the UK’s Governments make the most of the opportunities they have to deliver real and lasting change.
Earlier this year a comprehensive report on adults with autism in England from the National Audit office (NAO) looked at a number of Government departments who have responsibilities towards people with autism and found significant failings across public services. A lack of awareness of the numbers of people with autism, too few diagnostic services and a poor understanding of the condition amongst health, social care and employment-support professionals were cited as just some of the issues which prevent the Government from being able to plan and deliver the services people with autism really need. All too often it is families who are left to pick up the pieces with the majority of parents and carers saying that many of the difficulties they face are symptomatic of the dearth of support for those that they care for. Many young people with the condition simply do not receive the kind of help they need to fulfil their potential and prepare them for adult life. Consequently, over 40% of adults with autism live at home with their parents and are heavily dependent on them for emotional, practical and financial support.
A lack of help can have wide-reaching implications particularly in terms of lost employment for both parties. Many adults with autism want to work but experience great difficulty in finding and staying in employment. This is often due to misunderstandings related to their condition and inadequate support meaning only 15% are currently in full-time paid employment. Sadly almost 70% of parents and carers of people with autism said they had to give up work to fulfil their caring responsibilities and a shocking 68% spend over 70 hours a week caring. It is of deep concern to the NAS, therefore, that many people with autism and their families say the benefits system is often heavily geared towards those with physical conditions. They report that it does not recognise the challenges they face in everyday life nor cover the additional cost of living with a disability. More worrying still, at least 1 in 3 adults with autism say they are experiencing serious mental health difficulties due to a lack of help, often meanng they require more intensive and expensive support at a later stage.
In their critically important report the NAO has evidence, for the first time, that providing this severely excluded group with appropriate health, social care and employment support could prevent their needs from escalating and result in cost savings in their millions. In the long term identifying and supporting just 8% more of the population of adults with autism could save up to £67 million per year in England. Aside from the moral argument, in the current economic climate the huge potential cost savings and benefits of providing people with autism with the right help at the right time cannot possibly be ignored. It is absolutely crucial that this is reflected in all nations’ plans to improve support for both children and adults with the condition.
These are complex issues and over the next few weeks we will explore them in a series of in-depth articles on autism in the UK.
