In total, 186 GPs (61.2%) responded to the open question (to elicit each participant’s views and experiences of working with autistic people and their families). The quotes included in the following section represent those from a range of participants. Two main themes were identified:
System-level factors
Participants reported frustration over long delays between referral and diagnosis, largely attributed to a lack of clear referral pathways, long waiting lists, and limited resources. For one responder these delays were ‘completely unacceptable, particularly for adults’.
Others noted the lack of joined-up services, leading to ‘a lot of passing from pillar to post of patients and their families’, with many left unsupported, ‘adding significantly to their distress’.
Responders also reported limited support from local services post-diagnosis. Once diagnosed, one GP commented on having a ‘sense of hopelessness about lack of appropriate help’, with ‘no offer of support, therapy, or follow-up’.
Several commented on the pervasiveness of autism, calling it ‘a lifelong problem that requires lifelong support, which is rarely available’.
Responders stressed that support for autistic adults was virtually non-existent. They highlighted several challenges, including the complexity of diagnosing adults, as opposed to children (particularly in light of co-occurring mental health conditions), and difficulties ‘finding a place for them to be diagnosed’; some reported ‘no specific local service for diagnosis and management for adults with suspected autism’ who are ‘often left to fend for themselves’.
They also underscored problems with patients transitioning from child to adult support services. GPs also highlighted the lack of support for families. They recognised the often profound impact on families, including parents and siblings, emphasising that the strains ‘can be much greater than anticipated or readily recognised’.
Many responders felt the need for clarity regarding referral pathways and resources as these were ‘confusing’ and ‘not at all clear’, leading to a lack of confidence ‘as to what is out there and who/where to refer’. Overall, responders felt that ‘resources for supporting GPs are poor’. One GP remarked on how ‘the relatively few services for children and adults [on the autism spectrum] are in a constant state of flux and impossible to keep up with’.
Organisations working in silos was cited as a key problem. One responder summed up the situation: ‘Diagnostic pathways for children are complex locally, with the hospital paediatricians now rejecting referrals completely. The community paediatricians will not see someone for assessment if they are under CAMHS and vice versa; the community paediatricians will also reject referrals that are not sent with a multidisciplinary referral form, which requests information we do not have access to (for example, school, nursery information). Support for families going through this process is lacking, with delays, buck passing, and frustration all round.’
Role of the GP in identifying and managing autism
Responders described how consultations are too short for such a complex condition. Assessing and managing autism ‘takes more than a 10-minute consultation’ and ‘even with appropriate training, GPs do not have the resources properly to diagnose or look after patients/carers with autism’.
Responders were divided about the remit of the GP. Some felt that undertaking assessments and managing care is ‘well beyond the scope of what a GP can provide in the face of the deepening workload crisis and falling number of GPs’ and that they should not ‘be taking the role of the specialist’. Others, however, felt ‘that our role as GPs is to be aware of local services so that parents/carers/those with autism know where to turn for support’.
However, many also noted that ‘it is very difficult to access resources’ for their autistic patients especially for ‘signposting to community resources’ and that it would be ‘helpful to have more information to assist patients and their families’.
Regardless of these disagreements, responders identified the need for specific training on autism including that ‘in child development and communicating with patients’ because GPs are often ‘the first port of call for these patients’.
Some responders were aware of the special considerations required when engaging with autistic patients concerning sensory sensitivity and co-existing anxiety.
