Putting the spotlight on the ‘invisible’ condition

John Kay at Sheffield Hallam University
John Kay at Sheffield Hallam University
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John Kay is a university lecturer who has Asperger’s syndrome. He talks to Chris Bond about his plans to help increase support for people with autism.

IN recent years our understanding of autism has increased dramatically.

As well as scientific research shedding fresh light on the condition, books like Mark Haddon’s best-selling novel The Curious Incident Of The Dog In The Night, about a 15- year-old boy with a form of autism, and Graeme Simsion’s highly-praised debut, The Rosie Project, which has an autistic professor as its hero, have helped bring awareness of it to a wider audience.

So, too, has Susan Boyle. Last month the singer, who shot to fame in 2009 after appearing on Britain’s Got Talent, revealed she has been diagnosed with Asperger’s Syndrome. She spoke of her relief at finally getting a “clearer understanding” of her condition after spending years believing she had suffered slight brain damage at birth.

According to the National Autistic Society (NAS) around 700,000 people in the UK have autism, which equates to more than one in 100. But what is autism and how does it affect people? Both autism and Asperger’s syndrome are part of a range of conditions known as autistic spectrum conditions (ASC), that affect the way the brain processes information. The disorder varies from mild to so severe that a person may be virtually unable to communicate and need round-the-clock care.

Until a generation ago these conditions were often misunderstood and misdiagnosed. Those affected either found ways of coping with a condition they didn’t fully understand, or found themselves on a downward spiral that perhaps started when they were bullied as a child and could, in some instances, see them locked up in a secure mental hospital.

Now we have an Autism Act and a national strategy aimed at improving the lives of adults with the condition. Even so there are still concerns that many people affected by autism in the UK don’t get the level of help and support they need.

It’s a situation that John Kay, a senior lecturer in health and social care at Sheffield Hallam University, is hoping to help change. He was diagnosed with Asperger’s syndrome in 2009 but had to travel to Chesterfield in order to get a diagnosis.

He felt people weren’t getting the same level of care and is now spearheading plans which could provide a blueprint for NHS Trusts nationwide.

Kay, who is the lead governor of the Sheffield Health and Social Care NHS Foundation Trust (SHSC), helped the Trust get £500,000 of funding from Sheffield City Council and the local clinical commissioning group, to provide support services to thousands of adults with autism in the city.

“I was made aware of many cases in Sheffield where access to the service had been denied and that prompted me to do something about it. Autism is a disability that can have a long-term and severe impact on an individual to be able to function in society, but it is not an acute mental health problem as long as support services are put in place,” he says.

“I found patients would often find themselves on a carousel of referral programmes with social workers, charities and other, non-clinical networks and would only receive treatment and support once their condition became critical or there was a threat to life.”

Now, though, there’s a team of clinical specialists to help provide a service that can assess, diagnose, treat and support adults with autism. Kay’s aim is to pinpoint a system that gives everyone, whether they’re in Sheffield or Scarborough, access to the same level of support.

He says this kind of service didn’t really exist just a decade ago. “Until recently 61 per cent of people who were seeking a diagnosis have to do it privately, through charity groups or private psychiatric consultants.”

So how good is autism support in the UK? “It’s better than some countries but we’re not up there with America, the world leader. We’re getting there but like everything else within the Health Service it takes a very long time to implement changes. So is it what we need? Possibly not, but it’s a step in the right direction.”

In the past, autism was linked to learning difficulties and low IQs which is why Kay says giving people the right diagnosis is crucial.

He says sudden changes in the workplace can cause someone with autism who hasn’t had problems before to start developing mental health issues.

“One of the things related to autism is people have a different way of processing information, they may get overload from noise. So if you have someone who’s used to working in their own office and suddenly they’re moved into an open plan office, because of their inability to filter out noise and conversations they would have severe difficulty working in that environment.

“But if you could identify that was down to a neurological condition then you can work around that, you can let that person work from home and liaise for meetings, and if you can get those things in place the problem goes away.”

He describes what it can be like for some people with autism. “If you got dropped into the middle of a war zone and you don’t know what’s going on, that’s the kind of situation that somebody with autism would be in 90 per cent of the time and they develop different coping mechanisms.”

There are, he says, advantages and disadvantages to having the condition. “It gives you the ability to do things that you don’t realise most other people can’t do. But on the other hand because you’re doing things much more intensely you get worn out.”

He has a mild form of Asperger’s and says it hasn’t had an adverse impact on his life, although he feels the word “autism” still has a stigma attached to it, which he puts down to a lack of awareness. “There’ll even be some GPs who don’t believe that lower level autism spectrum conditions exist.”

Which is why he says it’s not only important that people get the correct diagnosis but also the right treatment. “We need to make sure a treatment package is in place for people right along the spectrum and that’s why it’s important to have the autism strategy implemented at regional level, because we don’t want to have this postcode lottery situation and that is effectively what is happening at the moment.”

The aim is to create a level playing field and Kay says that getting an early diagnosis can make a big difference. “For a child at a primary school it can help explain what’s happening in the playground because they might not understand it. If a child is bullied early on in life it can lead to psychological problems later on, so early intervention is key,” he says.

“It’s still misrepresented and the fear is people with these kind of conditions get negative labels, so if a person is misdiagnosed it’s assumed that they just aren’t trying or they’re disruptive. But if they’d had an early diagnosis there would be an understanding of what’s going on.”

He says having teaching assistants in schools to help children with autism would have a positive impact and although this costs extra money he believes it would make financial sense in the long run.

“If you don’t intervene before they become acute then you’re usually making somebody unemployed and reliant on services and social care and in the worst case scenarios people can end up in secure mental health units. This costs around £150,000 a year per person, so if you want to save that amount of money then it’s beneficial to have a teaching assistant in a primary school to guide somebody.”

However, he’s keen to point out that autism can benefit people, too. “If you look back at historic developments there are people you can clearly identify as having some kind of autism, because of the way their brain has grabbed hold of a problem. For instance there’s a school of thought that Albert Einstein had Asperger tendencies.”

Kay says this group of people are often overlooked because employers don’t understand the condition and are fearful of employing someone with autism.

However, he points out that there are some firms that prize their specific skills. “There are companies in Norway that specifically recruit people with Asperger’s conditions because of the dedication they bring.

“I know people who have gone to work in the City and analysed stocks and shares who had Asperger’s, so there is a real benefit.”

People who have autism often gravitate towards academia, particularly mathematics and science, and he doesn’t view the condition as a hindrance.

“If anything it’s beneficial because it gives you the ability to focus,” he says.

“If you employ somebody with an Asperger’s condition they will focus on particular tasks and they will carry them through. They look at something in minute detail, disassemble it and put it back together and it’s that systematic approach in many jobs that is worth its weight in gold.

“You can turn someone into a massively effective member of society, you can give them opportunities in the workplace and they will excel.”

Autism affects one in 100 people in UK

According to the National Autistic Society (NAS) around 700,000 people in the UK have autism (more than one in 100). Together with their families, over 2.7 million people are touched by autism every single day.

Four times as many boys as girls are diagnosed with autism.

Autism is a lifelong developmental condition that affects how a person communicates with, and relates to, other people and the world around them.

It is a spectrum condition, which means that, while all people with autism share certain areas of difficulty, their condition will affect them in different ways. So while some people with autism are able to live relatively ‘everyday’ lives, others require a lifetime of specialist support.

For more information visit www.autism.org.uk