Parent concerns prior to an assessment of autism spectrum disorder: A systematic review

Abstract

Some parents experience concerns relating to their child’s development and seek clinical assessments for their child’s behaviour. We sought to understand the concerns that led parents to seek a general clinical assessment where some children were diagnosed with autism spectrum disorder. We conducted a systematic review to identify the types of parent concerns that drives parents to seek professional help for their child’s development. Database searching identified 7587 records, where 10 studies (9 cohorts) met our inclusion criteria. Parent reported concerns were categorised using the coding schemes of included studies described as autism spectrum disorder–specific (i.e. communication, social or stereotyped behaviour concerns) or non-autism spectrum disorder–specific concerns (i.e. behaviour/temperament, developmental, medical, sensory or motor concerns). The most reported parental concerns prior to an assessment were speech and language, social and behavioural. Concerns were also reported relating to parent understandings of an autism spectrum disorder diagnosis and the positive and negative implications surrounding the autism spectrum disorder diagnosis. Data were reported descriptively due to variations in study design and data analyses. Additional rigorous research on parent concerns prior to a diagnostic autism spectrum disorder assessment is required to capture what drives parents to seek professional help to support their child’s development. Prospero registration number: CRD42022307436 Lay abstract: When a parent has concerns about their child’s development, there is a lag between seeking and receiving health information. When waiting, parents may speculate about a possible diagnosis of autism spectrum disorder, but it is unclear what types of concerns might drive this speculation. To determine the types of concerns parents may have before their child is assessed, we conducted a systematic review that explored parent concerns before an autism spectrum disorder assessment. Our aim was to determine the types of concerns that might drive parents to seek medical help for their child’s development. Four online databases were searched and 10 articles reporting on 9 studies matched our inclusion criteria. In these cohorts, parents reported autism spectrum disorder–specific concerns (i.e. communication, social or stereotyped behaviour concerns) or non-autism spectrum disorder–specific concerns (i.e. behaviour/temperament, developmental, medical, sensory or motor concerns). Some parents also reported on their positive and negative thoughts of a potential autism spectrum disorder diagnosis and what the diagnosis would mean to them. The most reported parental concerns before an assessment were speech and language, social and behavioural. To understand the types of concerns parents have once they seek medical help, further research into how families speculated a possible autism spectrum disorder is recommended.