Agreement between concern about autism spectrum disorder at the time of referral and diagnosis, and factors associated with agreement

Abstract

Aim: This study examined the level of agreement between referral reason and diagnostic outcome for pre-school aged children showing developmental delays and differences. In particular, the level of agreement when there was concern about autism spectrum disorder (ASD) was investigated.

Methods: Clinical records for children (n = 677) assessed for developmental concerns at a multidisciplinary assessment clinic in Sydney, Australia, were examined. Referral reason and diagnostic outcome were compared. Referral sources and factors including age, developmental level and language functioning, were explored for potential association with the consistency between referral reason and diagnosis.

Results: Approximately 30% of children referred for developmental assessment with ASD concern were not diagnosed with ASD. Agreement between referral reason and diagnosis was similar regardless of referral source and child age. Of children where diagnostic outcome was discordant with referral reason, 24% had delayed language. Variability in cognitive or developmental profiles was common (64%), regardless of diagnostic outcome.

Conclusions: Referral for ASD diagnostic assessments in the cases where ASD is not the primary cause for a child's difficulties increases pressure on assessment services, can delay access to ASD-specific intervention services for children who do have ASD, and can contribute to parent anxiety unnecessarily. The current evidence that a substantial minority of children were referred for ASD diagnostic assessments when ASD was not the primary cause for the difficulties emphasises the value of adopting a developmental differences framework, focusing on dimensions of behaviour and functioning, rather than an autism-specific service structure.

Keywords: autism; autism spectrum disorder; developmental concern; diagnosis; referral reason.