Zmiany w profilu dorosłych zdiagnozowanych z autyzmem od 2010 roku: badania populacyjne w Wielkiej Brytanii i Szwecji

Objective To understand if sociodemographic and neuropsychiatric characteristics of people diagnosed with autism in the United Kingdom (UK) and Sweden have changed since 2010. Design Cross-context population-based cohort studies. Setting UK primary care records from 2010-2023 and Swedish population-wide register linkages from 2010-2021 Participants 24,537,039 individuals age 16 or over, registered with general practices in the UK, including 141,119 with an autism diagnosis. 9,096,874 people age 16 or over in the Swedish Total Population Register, including over 100,817 with an autism diagnosis. Main outcome measures Annual age-standardised incidence and prevalence of adult autism diagnoses within different sociodemographic groups. Annual age-standardised proportion of adults with new autism diagnoses, lifetime autism diagnoses, and no autism diagnoses, with prior records of other neuropsychiatric conditions or medications. Results Incident adult autism diagnoses were consistently higher in Sweden than the UK, however incidence increased rapidly in the UK after 2020. Incident diagnoses increased fastest for 16-20-year-olds and females in both nations, as well as people in White ethnic groups in the UK and people with Swedish-born parents in Sweden. For example, in the UK in 2023 the age-standardised incidence of autism diagnoses among 16-65 years olds was 11 diagnoses per 10,000 person-years (95%CI: 10.7, 11.3) in the White ethnic group and 2.2 diagnoses per 10,000 person-years (95%CI: 1.9, 2.5) in the South Asian ethnic group. Over time there has been a consistent decline in the proportion of autistic adults with a prior diagnosis of epilepsy, psychosis and intellectual disability and an increase in the proportion with a prior diagnosis of ADHD, anxiety, depression and several other mental illnesses. For example, in the UK between 2010 and 2023 the age-standardised proportions of newly diagnosed autistic adults with prior records of epilepsy decreased from 10% (95%CI: 7.6, 13) to 4% (95%CI: 3.6, 4.5), while the proportion with records of anxiety increased from 28.7% (95%CI: 24.4, 33.6) to 58.3% (95%CI: 56.6, 60.1). Mental health conditions were generally more common in females and the reduction over time in intellectual disability was greater in females than males. Conclusions The socio-demographic and neuro-psychiatric characteristics of individuals diagnosed as autistic have changed dramatically since 2010, a phenomenon observed both in the UK and Sweden. The extent to which these changes indicate nuanced recognition of autism or broadening of diagnostic practice needs investigation. Summary box What is already known on this topic? Autism diagnoses have increased internationally, with prevalence in high income countries starting to overtake estimates from population survey-based methods. It is unclear how much this reflects improved understanding of nuanced presentations or broadening of the medical concept of autism beyond coherent boundaries. What this study adds The social and medical backgrounds of people receiving autism diagnoses has changed dramatically over time, particularly for females in the UK. This suggests that: (1) diagnoses are inequitably distributed in society, (2) other mental health conditions are adding complexity to the diagnostic process, and (3) the average health needs of autistic groups are evolving with consequences for public health policy. Further research is required to understand the drivers of these changes and consequences on the provision of support for autistic people.