Exploring Autistic People’s Experiences of and Attitudes Towards Cervical Screening: A Mixed-Methods Study

Authors

Abstract

Cervical screening can be lifesaving, yet attendance rates are lower than recommended within the general population and even lower within the autistic population. There is currently no published research systematically exploring autistic people’s cervical screening experiences. This research aimed to explore the experience of cervical (“smear”) screening for autistic people in the United Kingdom. Autistic people (N= 97) completed an online mixed-methods questionnaire about their cervical screening experiences. Questions considered experiences of pain, sensory and communication issues, knowledge of cervical cancer, attitudes towards screening, and experience of sexual assault. Findings suggest that an autistic person's intention to attend their screening is important to understand their actual attendance at the screening. Quantitatively, pain, sensory and communication issues, or knowledge of cervical cancer were not associated with screening attendance. However, qualitatively, they were. Two themes emerged: "Communication disconnect across the care journey" and" Echoes of the past: the lasting impact of previous care encounters" were discussed as barriers to screening engagement. This research highlights the need to improve healthcare communication and other accessibility needs for autistic people when attending cervical screening and for further development of appropriate measurement tools. More research is needed to further inform methods of improving cervical screening services for autistic people.Lay AbstractCervical screening ("smear tests") can prevent the development of cervical cancer by spotting the signs early. These screening tests can be lifesaving. A large number of the general population do not attend their cervical screening test when invited, and this is even higher for autistic people. One problem is that there is no research to understand why autistic people might not attend their smear tests. We asked autistic people in the United Kingdom to complete a questionnaire online to see who has attended their smear test when invited and looked at different things that might be important in this decision. Pain, sensory issues, and knowledge of cervical cancer did not seem to be important in explaining who did and did not attend a screening appointment. Communication (before, during, and after the screening tests) and previous negative experiences of healthcare (both in general and previous cervical screening tests) were important. This research further highlights the need for more training for healthcare providers in communication for diverse communities and communication needs. More research is also needed to better understand autistic people's cervical screening and wider healthcare experiences.

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