Background:
Previous research has indicated that autistic children and adolescents could be at risk of experiencing mental health difficulties in later life, with females and minority ethnic groups in particular being more at risk. Suggested reasons behind this revolve around sex and ethnicity-based inequalities in autism identification and diagnosis, resulting in delays and disparities in meeting needs across demographic groups. The aims of the current study were to investigate the relationship between autism and internalising conditions across sex and ethnic groups and then use these findings to help understand the lived experiences of adolescent females pre-diagnosis, during diagnosis and post-diagnosis. Furthermore, the aim was to use the findings from the current study to inform recommendations for reducing structural inequalities in autism diagnosis and support going forward.
Method:
The study adopted a mixed-methods design informed by the Connecting Lived Experiences with Visualisation of Electronic Records (CLEVER) framework. A logistic regression analysis was carried out on linked education and health records of 17,523 individuals aged 20-22 within the Bradford district in the UK. Systematised Nomenclature of Medicine Clinical Terms (SNOMED-CT) codes were used to identify individuals with a diagnosis of autism and/or an internalising condition (anxiety and/or depression). Focus groups were conducted with 15 adolescent females (≤ 18 years) from an autistic residential school to understand lived experiences across different time periods and explore possible underlying factors behind the relationship between autism and internalising conditions. Participants were split between two focus groups which occurred face-to-face and back-to-back.
Results:
Autism was found to be significantly associated with internalising conditions with autistic individuals around three times more likely to have an internalising condition compared to neurotypical individuals. Autistic females were the most likely have an internalising condition when factoring in sex and autistic South Asian individuals were the most likely of all ethnic groups to have an internalising condition. Focus group findings highlighted potential factors behind internalising conditions in autistic females such as difficulties with school pre-diagnosis, lack of understanding and meaningful support from education and healthcare staff and masking to conceal difficulties to try and fit in socially and avoid discrimination.
Conclusion:
Findings around the increased risk of internalising conditions for autistic female and South Asian individuals combined with themes from the lived experiences of adolescent females suggest that autism may well be a predictor of internalising conditions in later life. This aligns with previous research findings around sex and ethnicity-based inequalities in autism understanding, identification, diagnostic procedures and support. This has implications for future research as well as training, healthcare, educational, community and systemic recommendations for improving timely support for autistic children and adolescents going forward.
