This study aimed to identify determinants of a late autism spectrum disorder diagnosis, including diagnoses made ‘very late’ (i.e., in adolescence), using the Millennium Cohort Study, a nationally representative population-based cohort in the United Kingdom. Children diagnosed with autism spectrum disorder by age 14 (N = 581) were included and grouped by the parent-reported timing of diagnosis: before school (up to age 5), during primary school (age 5–11) and during secondary school (age 11–14). Predictors of diagnostic timing, at the child, family and school levels, were investigated using multinomial logistic regression. Most (79%) children with autism spectrum disorder were diagnosed after school entry, and 28% were not diagnosed until secondary school. Among those not diagnosed until secondary school, 75% had been identified at age 5 years by a parent and/or teacher as having socio-behavioural difficulties. Being diagnosed after starting school was predicted by living in poverty (adjusted relative risk ratio: primary = 1.90, 95% confidence interval: 1.03–3.53; secondary = 2.15, 1.05–4.42) and/or having no initial parental concerns (primary = 0.32, 0.15–0.70; secondary = 0.19, 0.09–0.43). Having typical-range intelligence also predicted diagnosis during secondary school. The result indicates that those without cognitive delays and poorer children were at risk of ‘very late’ (i.e. adolescent) diagnosis. Strategies to promote earlier identification, targeting age at primary school entry, could help those more likely to be diagnosed late. Lay abstract Despite policy emphasis on early identification, many children with autism spectrum disorder are diagnosed late, with some being diagnosed as late as in adolescence. However, evidence on what determines the timing of autism spectrum disorder diagnosis including children diagnosed in adolescence is lacking. Understanding these determinants, particularly in those diagnosed later than is ideal, can inform the development of effective strategies to improve earlier identification of autism spectrum disorder. This study used a nationally representative population-based cohort in the United Kingdom to explore child, family and school level predictors of timing of autism spectrum disorder diagnosis. In the United Kingdom, 79% of the children with autism spectrum disorder were diagnosed after entering primary school and 28% during secondary school. Among those not diagnosed until secondary school, 75% had shown social difficulties noticed by parents and/or teachers at age 5 years. The results suggest that healthcare providers should be aware that, even for universal systems of care, those living in poverty and having higher intelligence are most likely to miss out on a timely diagnosis. Strategies to promote earlier identification among school-aged children, including targeting primary school entry age (i.e. around age 5) and that encouraging referrals for a formal assessment at the first report of concerns over the child’s social development may benefit those children who would otherwise be diagnosed later.
Siblings’ experiences of growing up with children with autism in Taiwan and the United Kingdom