Exploring factors related to delayed diagnosis for autistic girls through the Connected Bradford Cohort Database

Background: It is well established that autistic girls are diagnosed and supported later than boys, but a clear and grounded understanding of this problem is lacking. The Connected Bradford Cohort datasets combine health and education data for 600,000 citizens across the Bradford district, and therefore provide an excellent opportunity to document structural inequalities at a population level. Furthermore, using the Connecting Lived Experiences with Visualisation of Electronic Records (CLEVER) framework, the data findings can be combined with lived experiences in order to better our understanding and generate solutions to meet the needs of autistic girls earlier. The Early Years Foundation Stage Profile (EYFP) has been found to be an early predictor of autism diagnosis in children, but the impact of sex has not yet been investigated.

Methods: Linked health and education datasets for 2617 autistic individuals (≤18 years) in the Connected Bradford cohort were used to ascertain the impact of sex on: rates of autism diagnosis, age and likelihood of diagnosis, and the EYFSP as a potential early indicator of autism. Interviews and focus were used to add vital insights into the data findings through the lived experiences of autistic girls/women and parents of autistic girls across the district.

Results: Sex-based prevalence rates of autism were ̴ 4:1. Girls were diagnosed later than boys, and boys were three times more likely to receive an autism diagnosis. Low EYFSP scores were a strong indicator of subsequent autism diagnosis for boys, but comparatively less so for girls. Interview and focus group findings indicated that sex-based disparities were underpinned by factors such as a lack of professional knowledge about the Female Autism Phenotype and inflexible, under-resourced services.

Conclusion: There is a systemic failure to identify and support autistic girls across the Bradford district. Health and education services are currently ill-equipped and require systemic training, service revision, and a focus on needs-led support.