Early intervention programmes can help children with autism spectrum disorder (ASD) but the older the child, the less impact they tend to have. A number of initiatives have attempted to increase early diagnosis of ASD, including the National Autism Plan for Children published in 2003, and guidelines from the National Institute for Health and Care Excellence published in 2011. Researchers from Newcastle University wanted to find out whether children were in fact being diagnosed earlier.
Authors Denise Brett, Frances Warnell, Helen McConachie, Jeremy Parr
Published by Journal of Autism and Development Disorders, March 2016
The research team analysed data on 2,134 children with ASD from two large family databases, making it the biggest study undertaken in the UK of children with ASD. In all, 83 per cent of the children were male and 17 per cent were female. The median age at which children were diagnosed was 55 months, or four years and seven months. This figure is in line with a 2014 US study but lower than previous smaller-scale UK studies. The researchers tracked data on the age of diagnosis from 2004 to 2014 and found no significant difference in mean or median figures over that time. The full title of their paper is Factors Affecting Age at Autism Spectrum Disorder Diagnosis in UK: No Evidence That Diagnosis Age Has Decreased Between 2004 and 2014.
Children with additional diagnoses were found to have been diagnosed with ASD later than children without other diagnoses. Children with attention deficit hyperactivity disorder (ADHD), dyslexia and dyspraxia were diagnosed with ASD much later than children who did not have these conditions. Children who received a diagnosis of ASD before the age of 60 months tended to come from less deprived areas than those who were diagnosed later on. Boys tended to have an earlier age of diagnosis than girls.
The researchers also looked at whether the type of disorder had an impact on the age of diagnosis and found children with a diagnosis of autism were diagnosed earlier than those with a diagnosis of ASD. Meanwhile those with Apserger's syndrome were diagnosed later. Non-verbal children and children who could only say a few words or echo the words of others, were diagnosed earlier than verbal children. Children whose parents reported needing "very substantial support" received an earlier diagnosis. The researchers expected to find having a sibling with ASD would lead to an earlier age of diagnosis as parents might recognise ASD-like behaviour, but this was not the case. They suggest this may be because ASD can present differently in different children or because health professionals may dismiss concerns thinking the second child is copying the behaviour of the first.
IMPLICATIONS FOR PRACTICE
The researchers say they do not know why the age at ASD diagnosis has not reduced in the last decade. They suggest early detection of symptoms is taking place. However, the complex pathway to getting a diagnosis results in long delays between initial parent concern, referral, assessment and diagnosis. They also suggest parents might delay before seeking a diagnosis, taking a wait-and-see approach. Meanwhile, health visitors and GPs may not have sufficient knowledge about the features of ASD, seeking to reassure parents instead of carrying out a referral.
There is a need to improve awareness of the signs of ASD in very young children. Health visitors and GPs should have training and support to help them identify young children with ASD and make early referrals to child health teams.
- Experiences of Autism Diagnosis: A Survey of Over 1,000 Parents in the United Kingdom, Laura Crane and others, Autism, February 2016. An analysis of a parental survey which found an average delay of around 3.5?years from the point at which parents first approached a health professional with their concerns to the confirmation of an ASD diagnosis.
- Child and Family Characteristics Associated With Age of Diagnosis of an Autism Spectrum Disorder in a Tertiary Care Setting, Julie Bickel and others, Journal of Developmental and Behavioural Paediatrics, January 2015. A US study looking at the impact of child and family characteristics on the age of diagnosis.
- Prevalence and Characteristics of Autistic Spectrum Disorders in the ALSPAC Cohort, Emma Williams and others, Developmental Medicine and Child Neurology, September 2008. A study to determine the prevalence of ASD within the Avon Longitudinal Study of Parents and Children, including findings on age of diagnosis.