Characteristics and primary care experiences of people who self-report as autistic: a probability sample survey of adults registered with primary care services in England.

OBJECTIVES

Little is known about adults who self-report as autistic. This study aimed to profile the demographic characteristics, long-term health conditions and primary care experiences of adults who self-report as autistic (including those with and without a formal diagnosis).

DESIGN/SETTING: A nationally representative cross-sectional survey of adults registered with National Health Service (NHS) General Practitioner (GP) surgeries in England.

PARTICIPANTS

623 157 survey respondents aged 16 and over, including 4481 who self-report as autistic.

OUTCOMES

Weighted descriptive statistics, with 95% CIs. Logistic regression modelling adjusted for age, gender, ethnicity and area-level deprivation compared those who self-report as autistic with the rest of the population.

RESULTS

A total of 4481 of the 623 157 survey participants included in the analysis self-reported autism, yielding a weighted proportion estimate of 1.41% (95% CI 1.35% to 1.46%). Adults self-reporting as autistic were more likely to be younger, male or non-binary, to identify as a gender different from their sex at birth, have a non-heterosexual sexual identity, be of white or mixed or multiple ethnic groups, non-religious, without caring responsibilities, unemployed, live in more deprived areas and not smoke. All chronic conditions covered were more prevalent among adults self-reporting as autistic, including learning disability, mental health conditions, neurological conditions, dementia, blindness or partial sight and deafness or hearing loss. Adults self-reporting as autistic were also less likely to report a positive experience of making an appointment (adjusted OR (aOR) 0.90, 95% CI 0.82 to 0.98) and navigating GP practice websites (aOR 0.78, 95% CI 0.70 to 0.87) and more likely to report seeking advice from a friend or family member prior to making an appointment (aOR 1.25, 95% CI 1.14 to 1.38) and having a preferred GP (aOR 2.25, 95% CI 2.06 to 2.46). They were less likely to report that their needs were met (aOR 0.73, 95% CI 0.65 to 0.83).

CONCLUSIONS

Adults self-reporting as autistic have a distinctive sociodemographic profile and heightened rates of long-term conditions. They report challenges in both accessing primary care and having their needs met when they do. These findings should inform future care initiatives designed to meet the needs of this group.