Considerable variations in knowledge of autism spectrum disorders in children exist amongst GPs in different healthcare systems around the world. The variations are revealed in a new study, which explored what GPs – or family doctors as they are known in many countries – know about autism and the factors that influence their ability to identify and manage care for their patients with autism. What remains stubbornly unclear, however, is what sources of information shape GPs’ views about children with autism and whether training is the only answer.

GPs often play a crucial role in detecting autism in children and managing care for children with autism and tend to be viewed as authorities on child development. They are often the first stop for parents who suspect that their child might be developing atypically. Although research in autism has proliferated in recent years, a synthesis of the literature relating to this important hub on the diagnostic pathway was lacking.

The researchers, led by Barry Coughlan, PhD student with the Applied Social Science Group in the Primary Care Unit at the University of Cambridge,  carried out a systematic review and a narrative synthesis on the available literature. The authors searched eight electronic databases for studies that focused on GPs’ knowledge of autism and management of patients with autism and then analysed the 17 studies they found that met their criteria.

In some contexts, GPs demonstrated robust knowledge of autism. Yet, in others, some GPs had not even heard of autism or endorsed retrograde theories about the causes of the condition. Amongst these outmoded theories were claims that changes in caregivers or adversity in early childhood cause autism. Such theories are known to be wrong and are rare even in mainstream media, so it is concerning that they emerged amongst healthcare professionals.

GPs reported widely varying knowledge sources to help them make clinical decisions, ranging from scientific journals to their own experiences as GPs caring for children with autism, to the general media. Some practitioners demonstrated sound knowledge of autism but had limited confidence in their ability to provide care for these patients: the use of medication was a topic that generated particular uncertainty, for example.

“The varied knowledge of autism that GPs demonstrated in our review goes some way to explaining the diversity in experiences that families report in the pre-diagnosis phase when they are seeking support for children,” commented Barry Coughlan. He continued, “We regard it as particularly concerning that some GPs seem to be pulling on lay sources when making clinical decisions about the care of children with autism. Part of the problem with using lay sources, such as media representations of autism, is that they offer a particular frame of discourse about the condition which might not align with the clinical or developmental literature.”

We think it’s important to acknowledge that the ‘lack of training’ theme is a recurrent refrain in primary care literature. Although the knowledge gaps we have identified do suggest a lack of training on autism, we recognise that training needs exist in many topic areas in primary care. Therefore, embedding autism topics within broader training topics, such as child development, might be a more practical approach in many contexts.”

But we are keen that the focus on training does not divert attention away from structural shortcomings which make identification, referral, and other aspects of managing care for these children challenging. Such shortcomings include heavy workloads and limited consultation times for GPs, and the compartmentalisation of expertise between services. Steps to address these issues and to integrate and share healthcare records across primary and secondary care may be even more important in supporting effective services for children with autism and their families.”

– Barry Coughlan, author and PhD student, Applied Social Science Group at the Primary Care Unit

Barry Coughlan’s PhD is supported by funds from the NIHR School for Primary Care Research.

Reference

Coughlan, B., Duschinsky, R., O’Connor, M., & Woolgar, M. (2020). Identifying and managing care for children with autism spectrum disorders in general practice: A systematic review and narrative synthesis. Health & Social Care in the Community. doi:10.1111/hsc.13098

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