Recent evidence suggests that autistic people die earlier than non-autistic people. This is across all the categories of death although there is a predominance of deaths through epilepsy and suicide. The engagement of autistic patients with primary care is clearly important given that primary care is the first point of contact in the UK healthcare system. The need for better healthcare for autistic patients has been recognized in the UK. For example, the Royal College of General Practitioners (RCGP) made autism a clinical priority in 2014 and produced a set of online guidelines and resources.
We conducted a secondary analysis of 37 in-depth interviews conducted with autistic adults using an ethnomethodological approach. We found that rather than using a ‘common sense’ and taken for granted help seeking rationality, autistic people draw on ‘uncommon sense’ to negotiate the social world. Intertwined with a tendency to have a deep seated focus on particular topics, people may not recognise that they need help or know where to seek it.
We argue that a focus on biomedically informed, deficit based understandings will not help autistic people seek and engage with healthcare more effectively. The current guidance for primary care patients misses the (autistic) point around help seeking behavior and that the ways in which healthcare is organized and popularly conceptualized may work either to exclude, or generate further anxiety for autistic people. We offer recommendations for improving the healthcare offered to autistic patients.