Barriers autistic young people face when accessing primary care services

Healthwatch Cambridgeshire and Peterborough Youthwatch  examines the barriers autistic young people face when accessing GP (primary care) services, drawing on interviews with 16 autistic people aged 16–25 and input from parents, professionals, and workshops with stakeholders. 

The report explains that autistic individuals often experience communication differences, sensory sensitivities, and high rates of co-occurring physical and mental health conditions, which make accessing healthcare more complex. It also highlights that autistic people have poorer health outcomes and may be less likely to seek help, partly due to previous negative experiences and difficulties navigating healthcare systems. 

The research identifies three main categories of barriers. First, communication difficulties are central, with young people reporting that GP staff often use unclear or rushed language, fail to listen, or do not adapt communication methods to individual needs. Second, inflexible systems—such as appointment booking processes that rely on early-morning phone calls or complex online forms—create additional challenges. Third, sensory barriers in GP environments, including noise, lighting, and crowded waiting rooms, can cause anxiety and overwhelm, reducing individuals’ ability or willingness to attend appointments.

Participants also described inconsistent experiences of care. Positive experiences were associated with continuity (seeing the same clinician), longer appointments, clear explanations, and staff who understood autism. Negative experiences included feeling dismissed, misunderstood, or stigmatised, as well as difficulties with referrals, long waiting times, and lack of follow-up support. In some cases, these barriers led individuals to avoid seeking care altogether or delayed accessing services until conditions worsened. 

The report highlights additional challenges during the transition from child to adult services, where support often becomes fragmented and expectations of independence increase. Digital systems, while intended to improve access, can inadvertently exclude autistic individuals due to complexity, time pressure, and cognitive load. The findings emphasise that barriers are often systemic and environmental rather than inherent to autism itself. 

To address these issues, the report sets out practical recommendations co-produced with young people. These include improving communication by using clear, literal language and offering alternative formats such as written or text-based communication; adapting environments by providing quiet waiting areas or allowing patients to wait elsewhere; and increasing flexibility in appointment booking and consultation formats. It also recommends longer or double appointments where needed, greater continuity of care, and easier prescription processes. 

Further recommendations include implementing autism flags or health passports within patient records, allowing patients to bring advocates, improving staff training in autism awareness (e.g. mandatory training), and appointing an autism lead within GP practices. The report also calls for routine annual health checks for autistic individuals and stresses the importance of co-producing services with people who have lived experience. 

In conclusion, the report finds that autistic young people face significant but addressable barriers to accessing primary care. It argues that relatively small, practical changes to communication, environments, and systems could greatly improve accessibility, patient experience, and health outcomes, while reducing inequalities in healthcare access.