Is earlier always better in the diagnosis of autism? Ginny Russell

Background -Autism in context Study question- outcomes, diagnosis Method Results Future work Rosie’s Film (CBBC) Structure of this talk

Background Autism spectrum disorders (Autism spectrum conditions, autism) are considered to be a set of complex neurological developmental disorders which are defined in practise by their diagnosis. Impairments in social interactions and communication, as well as restricted interests and repetitive behaviour (Bailey et al. 1996). Impact criteria considered. There is no cure for ASD. Autism interventions for children generally educational, behavioural. Aetiology unknown in most cases.

Visualising the spectrum More severe symptoms Less severe symptoms Childhood autism atypical Aspergers Broad Autistic Phenotype ‘normal’ ‘ At present there is a tendency to assume that the move from categories of autism to Asperger’s syndrome or to PDD-NOS reflects some aspect of decreasing severity, but this is not a particularly satisfactory approach.’ (Volkmar 2009)

Rising prevalence of autism ‘Autism Counts’ Nature Nov 2011, 479, p.24

Study question Do children with an ASD diagnosis have better outcomes than those without a diagnosis? Classic evaluation problem Do children with an ASD diagnosis have better outcomes than undiagnosed children who display equally severe autistic symptoms? Rationale for diagnosis is often to obtain suitable treatment. To improve the overall functional status of the child by promoting the development of communication, social, adaptive, behavioral, and academic skills. ( The American Academy of Paediatrics Committee on Children with Disabilities, 2001, p.7 ) Bullying, depression, self-harm.

Method Avon Longitudinal Study of Parents and Children 71 Children had a clinical diagnosis of ASD by age 12 At age 3-4, around 30 measures of autistic-type behaviour had been recorded

Age of ASD diagnosis in ALSPAC sample

Behaviours that were most strongly associated with ASD diagnosis Age 3-4 years SDQ prosocial score Repetitive behaviours score Afraid of new things or situations Does not indulge in pretend play Speech difficulty

Composite ASD score 79 children had a composite ASD score in the top 2% but no diagnosis or identified SEN outside school- our comparison group.

Results

The SDQ prosocial score The child …. …is considerate of other people's feelings …shares readily with other children (treats, toys, pencils etc.) …is helpful if someone is hurt, upset or feeling ill …is kind to younger children …often volunteers to help others (parents, teachers, other children) These items were answered by parental report, either not true somewhat true or certainly true at six time points throughout the children’s lives, (at 47, 81, 97, 115, 140 and 157 months)

Developmental trajectories of prosocial behaviours

Russell, G., Golding, J.,Norwich, B., Emond, E., Ford, T., Steer, C. Behavioural and social outcomes in children diagnosed with ASD: A longitudinal population cohort study. Journal of Child Psychology and Psychiatry. Did children with early diagnosis improve more ?

Early or late diagnosis Children with later diagnosis have better scores Younger age of diagnosis- more intervention at earlier ages?

Is there a change in trajectory before and after diagnosis? ASD neurological developmental disorder with strong genetic component. Early identification is an ‘international health priority’ (Green et al. 2010). Guidelines emphasise that diagnosis-treatment. Labelling theory (Becker, 1963, Scheff 1974). Children ‘inhabit the identities they have been ascribed’ (Nadesan, 2005). Evidence for SFPs/ stigmatisation (Rosenthal, Jussim, Harries & Harries, 1990, Sayal et al., 2010) children whose teachers were informed that children had high levels of inattention/hyperactivity were given higher scores at follow up.

Developmental trajectory of prosocial behaviour II N=57. Adjusted for individual variation, and expected improvement. No change in linear trajectory before compared to after diagnosis. Diagnosis is not a discrete event.

Other functions of diagnosis. ‘I think if he’s playing up and we’re not coping with him when we’re out in public somewhere I think if you don’t say anything people think they’re misbehaving, can’t the parents control them, but actually if have a quiet word with someone, say, ‘I’m sorry, he’s got Asperger’s, he’s just finding this situation a bit difficult’, attitude completely changes.’

My Autism and me

Future Work Look at a range of outcomes, larger study samples, break down into sub-categories of ASD. Extend to ADHD. Why is the prevalence of ASD rising?