People with autism: the struggle to gain benefits and find work

Lack of understanding among job centre staff is limiting work opportunities for people with autism

This year’s recession has left many people coming to terms with redundancy, searching for work, or grappling with benefit applications. But for autistic adults this is business as usual.

According to a report out this week from the National Autistic Society (NAS), there are about 350,000 autistic adults of working age, but only 15% are in full-time paid work. More than half of some 300 adults with autism surveyed by the NAS have spent time with no job or access to benefits – some for at least 10 years – and 79% of those on incapacity benefit wanted to work.

There’s no arguing that over the past year the government has recognised the difficulties associated with autism. It has published a consultation on England’s first national autism strategy – due by April 2010 – including training and employment among its five key themes; and it amended a private member’s bill on autism, creating a government bill to enshrine the strategy in law. The Autism Bill, which goes to the House of Lords this week, is the first single issue bill on any disability and is designed to give the strategy teeth.

Prevalence of autism

However, the NAS wants the government to go further, especially given what we now know about the high prevalence of autism. A 2007 study, published last month by the NHS Information Centre, found that one in every 100 adults in England has autism.

In its response to the strategy, the NAS urged the government to place autism co-ordinators in every job centre, to provide autism information and advice to other staff.

In a report on autism this year, the National Audit Office found that a lack of understanding of autism among job centre staff was a significant barrier to work for autistic adults.

Although the government has included autism training for all new disability employment advisers at job centres, only half have received it.

In the NAS survey, more than a quarter of autistic adults were on incapacity benefit, which has now been replaced by employment and support allowance for new claimants.

However, ESA is not working for autistic adults, according to NAS chief executive Mark Lever. For instance, all applicants for the benefit must produce a sick note from their GP. This is a “crazy” notion for autistic adults, says Lever, given that autism is a lifelong condition that cannot be cured.

“They should scrap sick notes and just have the assessment,” he says.

However, the medical assessment itself leaves a lot to be desired, he adds. “The people we spoke to said the details of their disability should have been brought up at the start of the assessment so the doctor could adapt how they communicate with them.

“For example, the doctor will ask ‘can you use a bus to get to work?’ and they will say ‘yes’, but they won’t go on to say ‘that’s if I have a supporter or if it’s out of rush hour’. If they were trained they could ask questions in a better way.”

Paula Wharmby, who has Asperger’s syndrome, is a case in point. She succeeded in getting a job twice but on each occasion left because she couldn’t cope with the noise and dealing with people.

“I went on to jobseeker’s allowance (JSA) for a few months but that didn’t work out,” she says. “They would send me to interviews and I would say nothing except ‘hello’.”

Her mother found out about ESA, which involves more support than JSA and is worth £25 more a week. She had a work-focused interview with a job centre personal adviser to discuss options for moving into work, and her adviser was helpful and understood Asperger’s.

“Then I had my medical,” she said. “I gave the doctor a psychiatric report but he just asked me a lot of questions off the computer and then challenged my answers.”

Application rejected

The assessment took 15 minutes, although Wharmby had been told to allow for 70 minutes. The doctor found nothing wrong with her and her ESA application was rejected.

“I was on disability living allowance at the time but they wouldn’t accept I had problems. It didn’t make sense,” she says.

She appealed and was refused but, with the support of her mother and the local Citizens Advice Bureau, she took the case to tribunal. She was asked direct questions about her, “not questions off a computer spreadsheet”, and she felt they understood her. They did, and she was awarded ESA.

Wharmby is now on a course to become self-employed after deciding it was the only way she could work. “If the medical examiner had just read the report I handed him it would have solved a lot of problems,” she says. “With Asperger’s I’m not good at explaining things verbally to people so they need to accept written information too.”

Wharmby’s case illustrates the “tickbox exercise” of the ESA process, says Lever, adding: “People with autism may answer yes or no, but there will be a story behind it that needs to be drawn out. Paula’s experience that the assessment is based on one interview rather than any supporting evidence seems to be the case for a number of people.”

The government says it has introduced ESA because no one should be written off, but without significant changes this will continue to happen to autistic adults.

Expert guide to ESA

Case study

PETER GRIFFIN: Astrophysicist and supermarket worker

‘When you get ESA, they throw roadblocks at you”

eter Griffin, 29, has an IQ of 159 and a degree in astrophysics. He also has Asperger’s syndrome and works in a supermarket one day a week. He cannot cope with more. “I can barely manage it because presenting as normal for a long time is draining, but having nothing at all in my week would be worse,” he says.

His ideal job is to teach maths to A-level students and those in further education. “I think it’s achievable if he’s given the right amount of support,” says his mother, Ann.

Meanwhile, Griffin is on ESA, but found the process of applying “problematic”.

Ann helped him with the form, but couldn’t attend the medical assessment to rule on his suitability for work. His social worker went instead – just as well, as it turned out.

“The social worker found the meeting difficult,” says Ann. “Peter was asked ‘can you travel independently?’ and he said ‘yes’ and she had to say ‘yes you can, but look at the planning it takes for you just to get one bus’. If she hadn’t been there they would have had a different story.

“I was hugely disappointed with the [subsequent] report. It said he had had autism for the past 10 years – basically since his diagnosis – which shows they don’t understand the condition as you are born with it.”

Griffin does receive ESA but if he doesn’t attend a work-focused interview that is arranged for him he loses some benefit. “The sanctions that are threatened feel like bullying,” says Ann.

Because autism is a communication disorder, people may not understand the sanctions so the NAS wants to see a written warning instead of a benefit cut the first time someone misses an appointment.

“It’s so hard to get ESA and then, when you get it, they keep throwing roadblocks at you,” says Griffin.

This article is published in the 15 October 2009 edition of Community Care magazine under the headline People with autism: the struggle to gain benefits and find work