Autistic savant Daniel Tammet
David has always been quiet. He has had to work harder than most to do everyday tasks and be accepted but he put this down to the fact that he grew up in a remote area in the countryside away from others.
He describes a lifetime of disappointment and being let down by friends, and he has problems with relationships and socialising. He admits that he gets overwhelmed by crowds. “The main problem for me has always been socialising. I’m OK with a few people but get overwhelmed with five or six in a room.”
He was diagnosed with Aspergers Syndrome last year.
What do you know about Autism Spectrum Disorders (ASDS)? Chances are that unless you know someone with an ASD, not a lot.
Though ASDs can take many forms and it is difficult to generalise, people with an IQ of 70 or more are described as high functioning and those with an IQ of below 70 are said to be low functioning. Autism is a spectrum disorder, which means that it varies in severity. Some sufferers are able to lead a fully independent life, others may need specialist care. It is a lifelong disability for which there is no cure, but it can be controlled with drugs or therapies.
Autism is a developmental disorder. The characteristics of autism vary from person to person, but people with autism tend to have difficulty with socail communication, social interaction and social imagination.
They may develop obsessive behaviour or routines, or become resistant to change. They may have problems in communication and understanding social situations, repeat words or phrases,have problems with movement and coordination, display a lack of imagination, body language or eye contact and may prefer to spend time alone. They may be reluctant to spend time with others as they find it hard to ‘read’ social situations and know how to respond appropriately. They might find it hard to understand body language. Often people with autism have additional problems such as learning difficulties or epilepsy.
Aspergers Syndrome is slightly different. Sufferers tend to be more mildly affected than those with autism, though they may share similar symptoms, particularly with regard to forming relationships with others and communication.
“Getting diagnosed was extremely difficult and a very long story. I saw my GP and he said I had anxiety and social phobia,” says David, 44, who was diagnosed after a breakdown while signing on. “I told him I thought I had Asperger Syndrome, having seen several documentaries and reading some articles. Eventually after a year or so I got to see a specialist on the NHS and was diagnosed with Aspergers Syndrome.”
But for people like David with ASDs, there is often little help available and they are finding themselves excluded from society.
Education is one area where people with ASDs are being sidelined. Emma Thompson also has Aspergers Syndrome and believes schools are failing to provide enough support. “There’s support available but it’s hard to access. The child normally needs a special needs statement to access any support. I don’t think that there is enough support overall for the average child affected by autism. It’s not accessed without a lot of hassle.”
This does seem to be the case. In a recent survey by the National Autistic Society, 64% of respondents said that they only received satisfactory provision for their child by fighting hard for it. Recent findings also show that a third of high-functioning children do not receive a statement of special educational needs. These children often do not get the support they need in school because their needs are not recognised.
Even for those who do have access to support, it is not always sufficient. Teachers and schools struggle to deal with the pressures of teaching students with ASDs. One in five children with an ASD has been excluded form school at some point because the school cannot cope.
Greg Pasco, a research associate at the Autism Research Centre at the University of Cambridge, sees this as a problem. “Whilst the principle of meeting every student’s needs, regardless of disability, is laudable, mainstream education cannot possibly provide for all children with autism. In some cases ‘inclusion’ means that a child is physically present in the school.”
Eileen Hopkins, Director of International Development at Autism Speaks, believes that teachers need to be better educated about autism. “Certainly, teachers are better informed but they are still not routinely trained. In some cases we see teachers funding their own training. It should be readily available and accessible.”
Not all institutions are failing their pupils. Lucy Childs is a disability coordinator for students with Aspergers Syndrome and related conditions at the University of Leeds. Students can approach her or their designated mentors for help with personal issues, form filling and advice on a range of issues. “For students with Aspergers, we have a Transitions Learning Contract which is handed to their department with guidelines as to what the student will need to support them,” says Lucy. “We can also assist in getting special arrangements for exams.”
What about employment? Most find entering work daunting. Currently only 14% of people with ASDs are in employment, of which just 6% are in full time paid work.
“Employment is difficult because they do not have the confidence to apply for jobs. Employers need to have an understanding of autism and how it will affect the individual person,” says Machita Denny, who runs the Jigsaw support group in Staffordshire for those affected by autism. “They are often very dedicated, committed employees, as whatever they do has to be precise and completed properly. Many have difficulty getting interviews because if they declare their disability, prospective employers will not consider them suitable for the job, even if they have all the qualifications.”
So what can be done? “HR and diversity departments need to be more inclusive of disability issues. Because AS is such a complex condition and everyone is so different, it’s hard to have a ‘one size fits all’ approach.”
The cost of autism is calculated to be around £28 billion a year, with the largest expenditure being health and social care, followed by lost productivity. But Judith Kerem, project manager of the Autism Education Trust, decided to set up the Transitions project to help those with autism get into employment.
“I felt this was an important transitional period for students and there was little to ‘bridge the gap’ from education to employment. These students and graduates can contribute to the workforce and economy and it’s a wasted opportunity to educate them and then not support them to develop their knowledge and skills further.”
Statistics state that 59% of parents of an autistic child feel that their son or daughter is excluded from society. Bullying is also a big problem. As Greg Pasco explains, “They find it difficult to understand the unwritten codes of behaviour that enable other children to fit in. Typically children with autism may be socially isolated and have few friends, which are factors that make them vulnerable to bullying.”
Despite this seemingly gloomy picture, things are improving. Teachers are more aware of students’ needs and increased media coverage has raised awareness and tolerance, along with prominent sufferers such as autistic savant Daniel Tammet backing support groups and raising the profile of the condition.
The sufferers themselves remain optimistic. As Emma Thompson says, “Society has punished me so much because of things they don’t understand. It make take time for society to come to terms with ASDs but I’m sure that one day, maybe in 30 years’ time, it will happen.”
Kay Weston
