When the Government two years ago launched a review to improve the lives of autistic children, it said it was committed to giving them “the same start in life as any other child”. Key to the review was the development of services that would diagnose autism earlier. A year after it was due to be published, the new strategy has yet to appear, prompting criticism from the National Autistic Society over the lack of progress on implementing a new strategy. New research from a team at the ESRC International Centre for Lifecourse Studies at UCL adds weight to calls for more to be done, in order to prevent the development of challenging behaviour, mental health issues, depression and self-harming. Mariko Hosozawa and Noriko Cable say their research highlights that the timing of autism diagnosis is key.
Our first piece of research explored child, family and school level predictors of diagnosis using data from the Millennium Cohort Study. We were able to look at 581 children who were diagnosed by age 14 and grouped by parent-reported timing of diagnosis, including before school (up to age five), during primary school (age five-11) and during secondary school (age 11-14).
To determine timing of diagnosis parents were asked, ‘has a doctor or other health professional ever told you that your child had Autism, Asperger’s Syndrome or other autistic spectrum disorder?’ when the child was approximately five, seven, 11 and 14 years old.
79 percent of children were given a diagnosis after school entry, with 28 percent of children not receiving a diagnosis until secondary school. Among those not diagnosed until secondary school, 75 percent had been identified at age five by a parent and/or teacher as having socio-behavioural difficulties.
Being diagnosed after school entry was also more likely to be the case for those living in poverty and children from lower income households were at risk of very late diagnosis during adolescence. We think this is largely due to the complex process of receiving a diagnosis, a process that relies heavily on parental navigation and which may create barriers for those who are socially disadvantaged.
We know that cognitive delays in spoken vocabulary, problem-solving abilities and spatial awareness can interfere with a child’s ability to reach developmental milestones and cause them to learn and develop slower than expected. What was interesting in our research was that children in the study with a typical-range of cognitive ability were twice as likely, compared to those with delays, to be diagnosed during secondary school – in other words they seemed to slip through the net because their ASD symptoms were milder or because they were better at compensating for social difficulties.
This points clearly to there being high numbers of children, particularly those without cognitive delays and from poorer families, remaining undiagnosed and therefore miss the opportunity for timely intervention and support for ASD before reaching adolescence.
Given that many of the children with ASD had already been noticed as having socio-behavioural difficulties at age 5, encouraging referrals for a formal assessment at the first report of concern over a child’s social development could help to address this.
Depression and self-harming
Our second paper looked at the links between adolescents suffering from depression or who were self-harming and parents’ reports of the timing of diagnosis for ASD. The research made use of data from more than 11,000 participants in the Millennium Cohort Study, 396 of whom had been diagnosed with autism by the age of 14 and where we had information on depression and self-harm.
Those children diagnosed between the ages of 7 and 11 were twice as likely as children in the wider population to show symptoms of depression. Where diagnosis took place after the age of 11, this rose to more than three times as likely. The findings for self-harming were similar, with children diagnosed after the age of 11 being most likely (three times) to hurt themselves deliberately.
Simply put, the later the diagnosis of ASD, the greater the risk of depression and self-harming behaviour. Our findings suggest that interventions targeting the earlier diagnosis of ASD are essential, particularly among those without cognitive delays and those diagnosed late.
Our findings represent a warning for healthcare and educational practitioners that high numbers of children, particularly those without cognitive delays and from poorer families, are likely to remain undiagnosed and therefore miss the opportunity for timely intervention and support for ASD before reaching adolescence.
Not receiving ASD diagnosis in early years is clearly detrimental to this group of children’s mental well-being. Strategies that promote earlier identification among school-aged children are needed and targeting children at primary school entry age would benefit those who would otherwise be diagnosed later. Further encouragement and support for parents who have young children with difficulties is also essential
The research also adds weight to the National Autistic Society’s campaign for more progress in implementing a new autism strategy. Further delay, as the Society says, means that “people wait too long to receive an autism diagnosis, which can stop an autistic person accessing the support they need”.
- Determinants of an autism spectrum disorder diagnosis in childhood and adolescence: Evidence from the UK Millennium Cohort Study