The first ever major study into adults living with autism was published 22nd September by the NHS Information Centre. The report, entitled 'Autism Spectrum Disorders in adults living in households throughout England 2007' was written by Professor Terry Brugha, a Consultant Psychiatrist with Leicestershire Partnership NHS Trust and Professor of Psychiatry at the University of Leicester with a team of UK researchers
This ground-breaking study shows for the first time an estimate of how many adults are living with autism spectrum disorders (ASDs) in England. The study into the prevalence of autism spectrum disorders among adults shows that one in every hundred adults living in households has the condition - broadly the same rate as that cited for children.
While studies have been carried out into the prevalence of autism spectrum disorders among children, the report is the first attempt to find and count adults and older people in the community with an autism spectrum disorder, including Asperger syndrome.
Professor Brugha, a specialist in the assessment of adults who may have ASDs including Aspergers syndrome, runs an NHS diagnostic clinic at the Brandon Mental Health Unit. He worked collaboratively with a team of academics and researchers, including his colleagues from the University of Leicester to develop a research programme and survey tool. The team surveyed thousands of people across England to determine how many adults in the general population are likely to be affected by ASD's.
Months of analysis, much of which was undertaken at the University of Leicester, and hundreds of face to face interviews and diagnostic assessments have for first time ever, captured the typical characteristics of someone with an ASD, including gender, age range, employment status, type of housing and use of health services.
Up until now, little was known about how autism affected people over the course of a lifetime. For example, autism rates could have been lower among older age groups because people had gradually recovered from the condition or died prematurely.
However, the study suggests that this is not the case and that prevalence of autism spectrum disorder remains broadly level across all age bands.
Autism spectrum disorders are developmental disorders characterised by impaired social interaction and communications, severely restricted interests and repetitive behaviours.
The study of its prevalence among adults was a specific objective of the Adult Psychiatric Morbidity Survey 2007 which was commissioned by The NHS Information Centre, funded by the Department of Health and carried out by the National Centre for Social Research (NatCen) in collaboration with the University of Leicester.
Other key findings showed:
- While 1.0 per cent of the adult population had an autism spectrum disorder, the rate for men was higher (1.8 per cent) than for women (0.2 per cent). This was in line with studies among child populations which show higher rates amongst boys.
- People who were single were more likely to be assessed with an autism spectrum disorder than other marital statuses.
- Among men, prevalence of an autism spectrum disorder was lower among those with a degree level qualification than among those with no qualifications.
- Men renting their home from a social landlord were more likely than those living in other types of housing to have an autism spectrum disorder.
- Adults with an autism spectrum disorder were no more likely to be using services for those with mental or emotional problems than the rest of the adult general population.
"Accurate diagnosis of the number of adults with ASD is very difficult, as diagnosis is based on behaviours. It's much easier to diagnose children, as parents are able to describe their children's behaviour in detail. Because of the very nature of ASD, undiagnosed adults are far less aware of the way in which their behaviour is different from other adults. So this research is particularly significant.
"The report highlights the number of people living undiagnosed in our communities with ASD and illustrates the kind of lives they lead as a result. There is a real challenge for health commissioners in England to address the inequalities of diagnosis and treatment for people who may have ASDs. We are fortunate in Leicester to have a dedicated NHS facility to help diagnose ASDs in adults, as early detection and treatment can make such a positive impact on people's lives".
While the main survey was published in January the research into autism prevalence required additional work and was therefore published separately.
Autism Spectrum Disorders in adults living in households throughout England, 2007: report from the Adult Psychiatric Morbidity Survey, 2007 is at http://www.ic.nhs.uk/pubs/asdpsychiatricmorbidity07
University of Leicester