Trigger films for service improvement

Desperately not seeking health care; autistic patients and primary care

We know from recent research that, on average, autistic people die earlier than non-autistic (or neurotypical) people and one of the biggest causes of death is suicide (Hirvikoski et al 2016). In this NIHR funded study we reanalysed in-depth interviews with 37 autistic people to gain a better understanding of how to improve the healthcare for autistic patients. While the Royal College of General Practitioners have produced a set of resources relating to autistic patients these focus on adjustments within the GP surgery. Our analysis found that people may not always realise they need health (or social) care and the process of seeking health can generate more anxiety. We argue that autistic people draw on an ‘uncommon sense’ to negotiate everyday life. We found that the work of everyday life like holding down a job, paying bills, cooking and cleaning can be overwhelming and an ability to deeply focus on particular topics can lead to people ignoring problems they may be facing. We argue that the link between mundane tasks, ill health and help seeking is not well understood within public health literature.

We conclude that the taken for granted organisation of the NHS (with an over emphasis on autonomy and rational decision-making) may exclude autistic patients who may need a more proactive approach on the part of health (and social care)professionals.

This five minute film summarises these findings with video extracts from the interviews. We are very interested in hearing what primary care practitioners think about our findings. In particular we would like to know whether our findings resonate with your own experiences and what you think are the practical implications of providing a more proactive approach to this group of patients.

Please email any comments or thoughts to or tweet/direct message @sarasiobhan


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