The experiences of neurodiverse people of accessing and using healthcare

Healthwatch Walsall carried out this research to understand the experiences of autistic and neurodivergent people when accessing health services. Using surveys, focus groups and community engagement, the project found that many participants experienced barriers throughout their healthcare journey, particularly around communication, anxiety, sensory overload and navigating services. Participants reported that while the quality of clinical care was often good, healthcare systems and environments did not always accommodate their needs effectively.

Communication emerged as a major theme. Less than one-third of respondents felt healthcare professionals explained conditions, treatments and follow-up care in a way they could easily understand, while nearly three-quarters said they were not offered alternative formats or materials to support communication. Participants described healthcare professionals using jargon, speaking too quickly and not allowing enough time to process information. Awareness of Hospital Passports was also low, with 75% of respondents not having one and many unaware that they existed. 

The report also highlighted the impact of masking autistic traits in healthcare settings. Nearly two-thirds of respondents said they masked during appointments, often leading professionals to underestimate their difficulties, anxiety or pain. Anxiety, sensory sensitivities and fear of healthcare environments were common barriers, with some people avoiding services altogether. Participants described difficulties with telephone booking systems, busy waiting areas, noise, lighting, unpredictability and a lack of staff understanding of neurodivergence. Parents of autistic young people also expressed concern about how their children would access healthcare independently as adults.

Healthwatch Walsall concluded that many barriers faced by neurodivergent people relate to how services are delivered rather than the clinical treatment itself. Recommendations included improving autism awareness training, routinely recording communication and adjustment needs, providing accessible information, increasing awareness and use of Hospital Passports, offering more flexible communication methods, reducing sensory barriers in healthcare environments, recognising the impact of masking, strengthening transition support for young people and involving neurodivergent people in the design and improvement of health services.