Why diagnosis matters

Healthwatch Rotherham explored the experiences of local residents seeking or living with an ADHD and/or autism diagnosis. The report highlights the significant impact that diagnosis can have on people's lives, while also identifying major challenges in the diagnostic process, including lengthy waiting times, limited support and poor communication.

The survey found that many people experience extremely long waits for assessment. While published figures suggested average waits of just over 104 weeks, evidence gathered by Healthwatch indicated that some people were waiting closer to three years, with survey respondents reporting waits of between two and six years. Many participants also reported that ADHD assessments often took longer than autism assessments. 

Half of respondents had received a formal diagnosis, while a quarter were still waiting. Many diagnoses occurred in adulthood, with relatively few people diagnosed before the age of 17. The report suggests that delayed diagnosis can leave people struggling for many years without appropriate support, understanding or adjustments, affecting education, employment, mental health and self-esteem. 

A key finding was the lack of support available while people wait for assessment. Most respondents said they received little or no help during this period and would have welcomed clearer communication, practical advice, coping strategies, emotional reassurance and signposting to support services. Some felt abandoned by the system while waiting for answers. 

Experiences of the diagnostic process were mixed. Some people reported positive experiences with supportive professionals and alternative routes such as the NHS Right to Choose pathway. However, others described confusing referral processes, a lack of GP understanding of referral options, and the need to advocate repeatedly for themselves in order to be taken seriously. 

More than half of respondents said they did not feel listened to by healthcare professionals when raising concerns about ADHD or autism. Some felt their symptoms were dismissed, attributed to other life circumstances, or not taken seriously, contributing to delays in referral and diagnosis. 

Respondents described substantial impacts on daily life, including difficulties with concentration, time management, organisation, sensory overload and managing growing workloads. Many also spoke about "masking" their symptoms, particularly women, who often felt pressure to hide autistic traits in order to fit in socially. The report highlights growing evidence that autism and ADHD in women are frequently overlooked or misdiagnosed because symptoms can present differently from traditional stereotypes. 

The report includes a detailed case study of a woman who received an autism diagnosis at age 50. She described how the diagnosis helped her make sense of decades of challenges and experiences, providing clarity, self-understanding and validation. The report uses this account to demonstrate how life-changing a diagnosis can be, particularly for women who may have spent years masking symptoms and being misunderstood. 

Healthwatch also highlighted its work supporting a family seeking an autism assessment for a child through the NHS Right to Choose pathway. By investigating inconsistencies in referral processes and raising concerns with NHS leaders, Healthwatch helped bring about changes to local guidance and enabled the family to access their chosen provider. 

Overall, the report concludes that diagnosis can provide validation, self-understanding and access to appropriate support, but that current services are not meeting the needs of many people seeking assessment. Healthwatch recommends reducing waiting times, offering support while people wait, improving communication with patients, increasing professional awareness and training on ADHD and autism, and providing clearer information about diagnostic pathways and available support.