Young people with autism are ‘lost in transition’

Embargoed until 23 June 2010

Young people with autism are often “lost in transition” and not diagnosed or treated effectively as teenagers, an eminent neuropsychiatrist has said. They end up being excluded from school, or never going to school, and rarely come to the attention of psychiatrists.

Professor David Skuse, professor of behavioural and brain sciences at the Institute of Child Health and honorary consultant developmental neuropsychiatrist at Great Ormond Street Hospital, was addressing the 2010 International Congress of the Royal College of Psychiatrists in Edinburgh. He told delegates that nearly half of children with autism and autism spectrum disorder (ASD) – which includes with Asperger’s syndrome – were being treated by paediatricians. Only a third were diagnosed and treated by psychiatrists.

There are no figures for the number of children with autism in the UK, but Professor Skuse said it was likely to be greater than 0.26 per cent, a figure drawn from a 1999 national survey. As many as 2 per cent of children, a figure widely accepted in the United States, could have autism.

Professor Skuse said that ASD was a life-long condition and that such a piecemeal approach to treatment was putting an unnecessary burden on health and social services: “These people are less likely to be in gainful employment, they will probably have secondary mental health problems which will require treatment, and they are less likely to be happy individuals and form meaningful relationships with other people.”

Professor Skuse told delegates his team took several days to diagnose a child with high functioning autism, which put pressure on mental health services. “In cases that are going to take a long time to evaluate and where treatment is not straightforward [services] would prefer not to handle them because it’s clogging up the system. They would prefer to hand these children over to the paediatricians.”

However, Professor Skuse said he was not confident that paediatric services, which focused on pre-school children, would follow their patients through adolescence – and among adult psychiatrists awareness of autism was low.

 “I think this is a recipe for disaster,” he said.  “Many of these children are not being managed adequately through adolescence, and in our own follow-up study those children we had seen when they were 10 or 11 were no longer in touch with any services by the time they were 14. There’s no way they were going to be transferred to adult mental health services.”

Professor Skuse concluded that young adults who were approaching 18 and were being supported by local mental health services should, along with their parents or carers, know well at least six months in advance what the arrangements would be for transfer to adult services. He added that there should be a lead person who makes sure that the transition between services goes smoothly.

References:

International Congress of the Royal College of Psychiatrists, Edinburgh, 21-24 June 2010.