Evidence of increasing recorded diagnosis of autism spectrum disorders in Wales, UK: An e-cohort study

Abstract

Estimates place the prevalence of autism spectrum disorders (autism) at around 1% in the population. New services for adult diagnosis have been set up in Wales, UK, at a time of rising awareness of the spectrum of autism experiences; however, no studies have examined adult autism prevalence in Wales. In this study, we used an anonymised e-cohort comprised of healthcare record data to produce all-age estimates of prevalence and incidence of recorded autism for the years 2001–2016. We found the overall prevalence rate of autism in healthcare records was 0.51%. The number of new-recorded cases of autism increased from 0.188 per 1000 person-years in 2001 to 0.644 per 1000 person-years in 2016. The estimate of 0.51% prevalence in the population is lower than suggested by population survey and cohort studies study methodologies, but comparable to other administrative record study estimates. Rates of new incident diagnoses of autism saw a >150% increase in the years 2008–2016, with a trend towards more diagnoses in those aged over 35 years and an eightfold increase in diagnoses in women from 2000 to 2016. This study suggests that while the number of people being diagnosed with autism is increasing, many are still unrecognised by healthcare services. Lay abstract Autism spectrum disorders (autism) are thought to be relatively common, with analyses estimating 1% in the population could meet diagnostic criteria. New services for adult diagnosis have been set up in Wales, UK; however, no studies have examined for the proportion of adults with autism in Wales. In this study, we take anonymised healthcare record data from more than 3.6 million people to produce a national estimate of recorded autism diagnoses. We found the overall prevalence rate of autism in healthcare records was 0.51%. The number of new-recorded cases of autism increased from 0.188 per 1000 person-years in 2001 to 0.644 per 1000 person-years in 2016. The estimate of 0.51% prevalence in the population is lower than suggested by population survey and cohort studies, but comparable to other administrative records. From 2001 to 2016, the number of autism services for adults has increased, and autism is more widely known in society, while concurrently in healthcare records, there was a >150% increase autism diagnoses in the years 2008–2016. An increasing number of diagnoses were among women and those aged over 35 years. This study suggests that while the number of people being diagnosed with autism is increasing, many are still unrecognised by healthcare services.