Researchers at the Centre for Research in Autism and Education (CRAE) worked with the Royal College of General Practitioners (RCGP) to explore GPs’ knowledge and awareness of autism, and their confidence in caring for autistic patients.  Here, the research team provide a summary of this work and explain how RCGP is supporting GPs to work more effectively with their autistic patients.

In many countries, the general practitioner (GP) or primary care physician plays a key role in identifying and supporting children and adults on the autistic spectrum.  In the UK, they are often the first port of call for those seeking an autism diagnosis (Jones et al., 2014). 

Given the changing definitions of autism, the variable nature of autistic symptoms (both between and within individuals) and the high rates of co-occurring conditions seen in many autistic people, GPs do not have an easy task.  Unfortunately, this often results in autistic people and their families having negative healthcare experiences, particularly in relation to accessing an autism diagnosis (Crane et al., 2016; Jones et al., 2014).

The research

We at CRAE and the RCGP recently worked together to carry out a UK-based study looking at GPs’ knowledge and awareness of autism (see Unigwe et al., 2017).

Using an online survey, we asked GPs about:

• their background, training and experience (both as a GP and in relation to autism)
• their knowledge of autism
• their confidence in identifying and supporting autistic patients.

An open question was also included, to gauge their experiences of working with autistic patients more generally.

The aim of the research was to identify how GPs can be better supported in working with the autistic children and adults under their care.

What we found

A total of 304 GPs completed our survey.  Of these, more than one third of GPs (39.5%) reported that they had never received formal training on autism – either during or after their qualifications.  Although GPs demonstrated quite good knowledge of the key features of autism, they were not very confident in their ability to identify and support their autistic patients.  Confidence was linked to experience of autism – GPs who had personal connections to autism and, to a lesser extent, prior training on autism, were more confident in their ability to work with their autistic patients. 

GPs also highlighted two key barriers to providing effective services for autistic patients and their families – system-level factors and the role of the GP.

System-level factors

GPs mentioned several factors outside their control, which limited their ability to provide a high-quality service to their autistic patients.  These included:

• long delays between referral and diagnosis
• limited support from local services
• a lack of support for both families and autistic adults
• confusion regarding referral pathways and resources.

Role of the GP

GPs felt that there was a lack of clarity over the remit of the GP and what was expected of them in relation to identifying and supporting autistic patients.  They also stressed that consultations for autistic patients were too short (given the complexity of the condition), and called for GPs to have specific training on autism. 

How to support GPs in working with their autistic patients

From 2014 to 2017, autism was identified as one of the RCGP’s Clinical Priorities.  Through the work of their Clinical Champion, Dr Carole Buckley, and Clinical Fellow, Dr Silvana Unigwe, the RCGP aimed to develop and promote models of best practice for working with autistic patients.

This has included:

• An RCGP Position Statement on Autism, presenting recommendations about increasing awareness of autism, ensuring access to healthcare for autistic people, and recognising the clinical skills needed to effectively work with autistic patients.
• An online Autism Toolkit, providing resources and guidelines for practices, including details of organisations that can support autistic patients, resources and guidance for parents/carers, national reports and legislation for practitioners, resources for training, appraisal and research, and background information for commissioners.
• The development of a series of training resources for GPs and other primary care staff to use in their practices.
• Learning resources for GP trainees and input into the GP training curriculum.
• A series of regional GP faculty autism awareness workshops held in 2016.

It is hoped that these initiatives will provide a much-needed foundational step towards improving the healthcare experiences of autistic children, young people and adults.  

We also suggest that local clinical commissioning groups (CCGs) have a role to play in enabling GPs to effectively share best practice and establish robust pathways to care. CCGs and GPs must work together with autistic people and their families to ensure that the care that is commissioned is respectful, accessible and, critically, person centred.