UK researchers have discovered that many adults with a severe learning disability fit the definition of autism.
Investigators discovered that the adults are likely to be living in a private household, resulting in an underestimation of autism prevalence.
Dr. Terry Brugha, professor of psychiatry at the University of Leicester, led the research on discovering “invisible” cases of autism with his research published by the NHS Information Centre. The report presents findings from a new study based on a sample of people with learning disabilities living in private households and communal care establishments.
“We were surprised by how many adults with moderate to profound learning disability had autism because previous estimates pointed to lower rates in this group.
“Because they form a very small part of the adult population, when we added these new findings to the rate we had previously found in adults living in private households, and able to take part in our national survey in 2007, the overall percentage of adults in England with autism did not increase significantly over our 2007 estimate of 1 percent.”
“Our finding that about 60 percent of men with profound learning disabilities and 43 percent of women with profound learning disabilities have autism has never been shown previously. It may also seem surprising how many live at home with parents or carers who provide 24 hour care and shoulder a considerable burden: 42 percent of men and 29 percent of women with severe learning disabilities living with family members and in other private households have autism.
“Taken together with the 2007 survey findings this means that most adults with autism live in private households, and before these two surveys they remained largely invisible.”
Brugha added, “This new information will be of particular importance for those who plan and provide services to support those with learning disabilities. In March 2010, the government published a national strategy for autism and guidance for the condition, with the view to improving the quality of services provided to adults with autism in England.
“Such improvements can only be achieved if the number of people with recognised and unrecognised autism is quantified. The strategy gave special emphasis to the need to train staff who have responsibility for identifying people with autism and their care. It will be vital to repeat such studies in future years in order to make sure that the national strategy is working effectively.”
Dr. Sally-Ann Cooper of the University of Glasgow, who also contributed to the latest study, commented: “Until now, routine statistics have not been gathered on the numbers of people with learning disabilities who also have autism, leaving this as a hidden problem. Our study clearly shows that the more severe to profound an adult’s learning disability is, the more likely they will be found to have autism if actually assessed.”
Source: University of Leicester