Autism and ADHD: The stories that followed

Healthwatch Stoke-on-Trent undertook research on the experiences of people seeking autism and ADHD assessments and support. They gathered personal stories from local residents following earlier work that highlighted concerns about neurodevelopmental services, focusing on the impact of long waiting times, gaps in support and the challenges people face before, during and after assessment.

The report found that many people experienced lengthy waits for assessment and diagnosis, often lasting several years. Respondents described significant effects on their education, employment, relationships and mental health while waiting for support. Many felt they were left without adequate information, guidance or assistance during this period and reported having to advocate repeatedly for themselves or family members to access services.

Participants also highlighted difficulties accessing support after diagnosis. While receiving a diagnosis often brought relief and a better understanding of their experiences, many felt there was little practical support available afterwards. Parents and carers frequently reported frustration at having to navigate complex systems, coordinate support themselves and repeatedly explain their circumstances to different services.

Healthwatch Stoke-on-Trent concluded that improvements were needed across the autism and ADHD pathway, including reducing waiting times, providing support while people await assessment, improving communication, strengthening post-diagnostic support and ensuring services are more joined up. The report emphasised the importance of listening to lived experience and using people's stories to shape future service improvements.