The current wait for an Adult Autism Assessment in West Sussex is approximately 3 years (as reported by people referred to the service and the service itself).
There is limited support for people whilst waiting for an assessment, and the service is not commissioned (or resourced) to provide this. This pre-assessment support gap impacts family life, work and education opportunities, as well as peoples’ mental wellbeing.
Our report highlights the impact of long assessment delays. People currently seeking an assessment, or who have recently had an assessment, told us about their experiences. With this insight, we have identified areas where the NHS service and commissioners must act swiftly to make sure West Sussex adult residents have fair and appropriate access to an autism assessment and the necessary support.
Summary of our findings
- There is concern that the pathway for an adult assessment in West Sussex is not easy to find out about, particularly for women and older adults. Some GPs have little awareness of the pathway, how to refer or about autism in general.
- People seeking assessment can feel disbelieved by some professionals, particularly if they are doing well academically or at work. They’re not always listened to.
- There is a need to ‘justify’ why the person needs an assessment. GPs need a reason to refer for an assessment, but this is not always explained and can lead to people feeling challenged, disbelieved and their experience devalued.
- People are unsure where to go for help, e.g. with work, education or for daily living needs, and need support to research and navigate the options available. The information available can be too overwhelming to be useful.
- People said it was hard to find mental health support. This difficulty sometimes increased once they’d received an autism diagnosis. They were unclear which services they could access, and not all services had an understanding of autism.
- The long wait for assessment negatively impacts people’s quality of life.