Autism can now be diagnosed when a child is only a few months old, say scientists, but previously people could grow up undiagnosed. Sheena Hastings reports.
PETER CLARKE likes history, and he can tell you in minute detail about the various events which contributed to the outbreak of the First World War. He knows the exact dates, too. He also has a great store of knowledge about the ill-fated Titanic and encyclopedic recall of facts, figures and dates to do with the Royal Family.
“The most important events this year are the anniversary of the Titanic, the Queen’s Jubilee, Jenny’s birthday and then the Olympics,” he says. Jenny is a supporter worker Peter particularly loves.
He carries with him in a small canvas bag his iPod loaded up with pop and classical music, a wad of newspaper and magazine cuttings that have taken his fancy, colourful covers from history books he has enjoyed and bits and pieces of doodled pictures, neatly and artfully executed.
He also has his lunch money in a little pouch. He says he was rubbish at maths at school, but he calculates everything he spends at the supermarket as he shops, and knows exactly how much he can spend each day if he is to save enough for a particular treat at the weekend. He’s clearly not comfortable putting his little bag down for long or not having it within sight.
On Mondays, Peter does his shopping, and on Tuesdays he does a few hours’ work at Sheffield’s General Cemetery, keeping the graveyard tidy and scrubbing memorial stones. It appeals to his thirst for stories from the past. On Wednesdays, he meets up with other people who are supported by the charity Autism Plus and they’ll have lunch. He has computer lessons at AP on Thursdays, and Friday is taken up by his art class at the charity’s centre near Tinsley. He prepares his own evening meal each night in his own flat, and looks forward to outings organised by AP to places of historical interest. The next one is to Norwich.
He doesn’t like the colour blue, so he chooses a red chair. When Peter looks back on the 52 years of his life so far, he recalls the years his family spent in London then Staffordshire, which years he went to what school, and the date on which he was diagnosed as being a person with autism. What he doesn’t seem to want to talk about is how he felt about being teased or bullied at school, first Lichfield Cathedral prep school and later at a comprehensive, where he liked history, music, cookery and woodwork. “It was so-so. Doesn’t everyone get teased and bullied a bit? I wasn’t a good singer, but I liked all the music around me at Lichfield... I remember starting to throw things about a bit as I got older.”
Peter was the fifth of five children born to a rector and his wife. He was a troubled toddler who became a withdrawn and solitary adolescent, says his eldest sister Anne, who’s a teacher.
“Despite being bright, and having particular passions like history, he never had any special teaching and failed Common Entrance, then went to a comprehensive where he passed a couple of exams and left school to gain work experience in building. It didn’t last very long, and he wasn’t able to work after that.
“Our parents were very worried about him, but at 24 he left home to go and live in Sheffield with support from our brother who lived there. They took him to the Tavistock Clinic in London, where he was diagnosed with mixed cerebral dominance. He then developed obsessive compulsive disorder, which meant he sometimes took 24 hours to get ready to leave the house.
“At that point, he couldn’t really live independently, but sharing supported housing didn’t work either, as Peter’s behaviour could sometimes be difficult for others. For instance he couldn’t go to the bathroom without leaving the door open.”
At 38, Peter had a nervous breakdown and was admitted to Nether Edge, a psychiatric hospital, where he was diagnosed with bipolar disorder and spent more than three years as an in-patient. Towards the end of that time a newly qualified psychologist suggested that Peter was actually on the autism spectrum and this was confirmed.
Peter says he doesn’t really remember how he felt about this, but he does recall the hospital. “Most of the time it was peaceful, but when there was chaos going on around me, I just got on with my paperwork.”
After the diagnosis, Peter left hospital and a plan was made to help him to live in the community with daily support from the Doncaster-based Autism Plus, a plan that is led by his choices and needs, having regard for his unique way of seeing the world and operating within it, including the difficulties he experiences in social situations. AP takes referrals from all over the country, with funding from local health authorities following service users.
The recent news of diagnosis of autism (which most experts believe is largely genetically caused) becoming possible as young as six-months-old, more children in the future will have the chance of help, support and opportunities to live as full and happy a life as possible. Around half of the 50-odd people Autism Plus sees each week at its centre in Tinsley, Sheffield, were diagnosed as adults. Late diagnosis can mean the condition has been overlooked or the wrong kind of help given for many years. Before diagnosis, when Peter went into a downward spiral (or “lost his oomph” as he puts it) he would spend days in bed. With more structure to his life now, that doesn’t happen.
Around 540,000 people in the UK are thought to have autism, and 40 per cent of children with autism have no friends. A quarter of children with autism are excluded from school, only six per cent of adults with autism are in employment and 60 per cent of adults with the condition also have a mental condition. Autism is estimated to cost the UK £28bn each year.
It was as recently as the late 80s and early 90s that autism as a separate range of behaviours to any other was fully recognised.
“When Peter was at school very little would have been known about it,“ says consultant clinical psychologist Linda Buchan. “In recent decades how society views people who are ‘different’ has changed, as well as accumulated knowledge in this field. But we are still not as good as we might be in helping families with working class backgrounds and black and minority ethnic families who may have a child with autism. Some parents can be less articulate about describing what’s happening, and children can also behave differently at home to how they are at school.”
Peter says he has been much happier since he started to receive the support of AP. Tim Scofield, one of the support workers who helps Peter says: “It’s a real privilege working with Peter. He’s so interesting, especially about history.”
Peter’s sister Anne says she’s delighted with the care and support Peter has received, but she does look back with regret.
“If he could have been supported properly when he was being educated, he could probably have gone to university. He is so intelligent; I feel he could have done something else with his life.” Peter says he’d have liked to work at the National Archives.