Page last updated at 19:46 GMT, Wednesday, 2 April 2008 20:46 UK

Living with autism in the UK

By Yannick Guerry
BBC News

Depressed man
Two thirds of adults with autism do not receive support

Increasingly common, yet often misunderstood, autism is now being discussed in the international corridors of power with the first UN-sponsored World Autism Awareness Day - but what issues face those with the condition in the UK?

Estimates suggest there could be more than half a million adults in Britain with an autistic spectrum disorder (ASD), which includes Asperger syndrome, a condition that makes it hard for people to make sense of the world around them, often leading to anxiety, social exclusion and economic deprivation.

The condition is characterised by difficulties in forming social relationships, problems with verbal and non-verbal communication and the development of narrow obsessional interests. Autism has no cure.

Experiences of autistic adults can vary dramatically, depending on the support they receive, which part of the country they live in and their symptoms.

Range of skills

Christopher, 50, was diagnosed with ASD late in life. He worked in the same office for more than 25 years before retiring because of long-term depression and ill health.

He says: I've been very depressed for quite some years. The main thing is I need the support, whether it's here or somewhere else. Since about a month ago I have a psychiatrist and a mental health nurse.

"The mental health nurse has found a support assistant who will also have one hour a week.

"I have to be a disabled person and I have to be a self-carer, my own parent, my own resource investigator, my own researcher and my own advocate.

The effort of trying to appear normal is stressful for him
Mother of an autistic adult

I need a very wide range of support on a very wide range of everyday practical issues.

"A person with an autism spectrum condition often comes over with an uneven range of skills. If a person is seemingly clever with words, as I seem to be, it's assumed they can do stuff for themselves.

Anne has two sons with autism. Peter, 28 and Stephen, 17. Peter, despite having completed a master's degree in astrophysics, is only able to work part-time in a supermarket because of his condition.

Anne says: "He would like to have friends, he would like to have a girlfriend, but the effort of trying to appear normal is stressful for him.

"Instead, when he's not working he spends his time playing computer games or watching TV in his room.

"He depends on us financially, emotionally and practically."

Valuable skills

In February, The National Autistic Society (NAS) launched a report suggesting nearly two thirds of adults with autism in England do not have enough support to meet their needs.

Only 15% of adults in England are in full-time paid employment
Boys are four times more likely to have autism than girls
The estimated number of children with an autism spectrum disorder is 133,500
The prevalence rate for autism among children is one in 100.
The figure for adults is unknown

Anne adds: "Peter has learnt the strategies he needs to deal with [going to work] once or twice a week and of course now most staff there know him quite well even if they don't understand Asperger syndrome."

"Sticking with what he knows at the supermarket is relatively safe for him.

"But I believe Peter is capable of much more. With the correct support, people like Peter can achieve in the workplace."

Amanda Batten, NAS head of policy and campaigns, says: "We know that whilst many people with autism have valuable skills to offer prospective employers, they have great difficulty in finding and keeping work.

"Only 15% of people with autism are in full-time paid employment and those that are employed frequently report that their experiences at work are marred by misunderstandings, inadequate support and sometimes bullying, often leading to loss of employment."

According to the NAS, lack of support for autistic adults can lead to serious depression and even suicidal feelings.

Devastating impact

Ms Batten adds: "For too long adults with autism have found themselves isolated and ignored; they struggle to access support and are often dependent on their families.

The right help at the right time can have a profound effect
Amanda Batten,
NAS Head of Policy

"It does not have to be like this. The right help at the right time can have a profound effect - we are calling on the government to think, act, and transform lives".

The problems that adults with autism face are compounded by a lack of awareness of the condition in society.

Despite an increasing number of people being diagnosed with some form of ASD in recent years, there remains a wide-scale lack of awareness of the condition among the public.

Last year, a survey indicated that many people are confused or misinformed about autism. More than a quarter of the 2,024 people surveyed believed that autism only affected children, 39% believed it autism could be cured.

NAS chief executive Mark Lever says: "A UN awareness day is a powerful tool in terms of getting attention - but we want to see real change.

"Autism is a serious, lifelong and disabling condition which has a profound and sometimes devastating impact on individuals and their families."

Most autistic adults 'isolated'
26 Feb 08 |  Scotland
Campaign tackles autism ignorance
29 Oct 07 |  Scotland
03 Mar 05 |  Medical notes
New guidance given on autism care
02 Apr 08 |  Scotland
Autistic pupils 'underachieving'
31 Oct 06 |  Scotland
Call for wider autism awareness
21 May 05 |  Scotland

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