Around one in every 100 people is on the autistic spectrum, yet the condition is still poorly understood. People with the disorder can seem unfriendly, tied to a routine or uncommunicative - but their behaviour is not intentional.
On Wednesday, World Autism Awareness Day is taking place, which hopes to improve people’s attitudes towards the condition, as well as highlighting the fact that it isn’t restricted to childhood.
In Sheffield, university lecturer John Kay has been working hard to increase support for people coping with autism’s symptoms.
John, a senior lecturer in health and social care at Sheffield Hallam University, was told he had Asperger’s syndrome five years ago, but had to travel to Chesterfield in order to get a diagnosis.
He felt people were not getting the same level of care, so helped Sheffield Health and Social Care NHS Foundation Trust to get £500,000 of funding from the council and the city’s clinical commissioning group, to provide support services to thousands of adults with autism locally.
“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,” said John, who is the lead governor for the health trust.
“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.
“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.”
Autism is described as a ‘spectrum disorder’ because, while everybody with it shares three main areas of difficulty - with social communication, social interaction and social imagination - the condition affects them in different ways and to varying degrees.
Some are able to live relatively normal lives, often trying to hide their difficulties, while others will need lifelong specialist help.
For instance, people with Asperger’s - a form of autism - are often of average, or above average, intelligence and tend to have fewer problems with speaking than people with other forms.
John has a mild form of Asperger’s, which hasn’t affected him adversely - although he still feels the word ‘autism’ has a stigma attached, 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,” he said, adding that milder forms of autism can even have advantages in many circumstances.
“If anything it’s beneficial because it gives you the ability to focus.
“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.”
Carol Povey, director of the National Autistic Society’s Centre for Autism, says: “Children with autism grow into adults with autism - it’s a lifelong condition.
“If people haven’t got someone in their family with autism, there will be a neighbour, someone in their child’s class, or one of their colleagues.”
World Autism Awareness Day coincides with the publication of a revised adult autism strategy by the Government, which is expected to recommend an awareness programme and improvements in training about autism across all public services.
“More understanding would make an enormous difference to the lives of people with autism, so they wouldn’t have to always be fighting to get themselves understood,” added Carol.