Life on hold: Neurodivergent people and healthcare experiences
Download (PDF 753.17 KB)Summary of report content
Healthwatch in West Yorkshire invited feedback from people with experience of neurodivergence to talk about some of the key issues in healthcare. 27 people participated.
People felt their lives were on hold while waiting to access assessments and healthcare. It creates stress and impacts their mental health (including suicide, substance dependence, and vulnerability to abusers).
The process of getting a diagnosis is complex and difficult to navigate. Professionals gave contradictory and confusing advice.
Professionals' expectations of behaviour are still very gendered, disadvantaging women, non-binary people and some men. Masking and the impacts of this are not understood.
People were given contradictory information by professionals, eg being told to get a private diagnosis, but not accepting it and refusing to prescribe medication.
Many people's needs go unmet. Some had good experiences but others needed advocates and care managers to help them manage the system. CBT doesn't work for many people.
People wanted autistic-led services developed and delivered by people who understood neurodivergent people.