Thinking outside of the box: how those with autism access mental health services in Hull

Healthwatch Hull undertook a project to understand the experiences of people with autism when accessing mental health support. Engagement took place with 79 people with lived experience and 10 stakeholders from organisations supporting autistic people and their families. Participants consistently highlighted the importance of personalised support, improved access to information, support for families and help navigating referral pathways. While some examples of good practice were identified, many felt services were not always designed around the needs of autistic people. 

The most common concerns related to long waiting times, difficulties accessing assessments and a lack of support while waiting for services. Many respondents felt that mental health services often viewed autism and mental health separately, leading to situations where people were told their difficulties were either “too complex” or simply part of their autism. Participants also reported that group-based interventions were not always suitable and that services could feel overly bureaucratic, requiring people to navigate multiple referral processes before receiving support. 

People described significant impacts on their mental wellbeing from delays and barriers to care, including increased anxiety, depression and feelings of being forgotten by services. A recurring theme was the need for better communication, clearer information about waiting times and referral pathways, and a more individualised approach that recognised how autism affects each person differently. Stakeholders also highlighted concerns about workforce understanding of autism and the need for services to adopt trauma-informed approaches. 

Healthwatch concluded that while positive initiatives were already underway, including autism-specific training and the development of trauma-informed care approaches, more work was needed to make services genuinely accessible and person-centred. Recommendations focused on co-producing services with autistic people, improving staff training, strengthening communication about referrals and waiting lists, increasing support during assessment waits, and ensuring services better understand the interaction between autism and mental health needs.