Improving adult diagnosis, better support and services are top priorities for autistic adults.

Our funding is helping pioneering researchers at Newcastle University to lead the world in adulthood research.

By understanding each autistic person and their life experience they are

• improving the way autistic adults are diagnosed and supported
• developing personalised therapies that work for each autistic person
• finding ways to improve mental and physical health in autistic people
• improving autistic people’s quality of life through doing the research that matters to them

Explaining the need for this project

Autism is common - 1-3% of the UK population are autistic. But most diagnostic tools and support have been developed for children, and research is needed to adapt these for adults of different ages and abilities.

The research process

The team recruited over 800 autistic adults of all ages and almost 300 family members. They are running a longitudinal study, which means they collect data from each person in the study over many years. Using surveys, interviews and focus groups, they identify health needs patterns in autistic adults and their research preferences.

How this project is making a difference

By understanding each autistic person and their experience, the team in Newcastle hope to ensure that all autistic people get the right support and services following their diagnosis.

The team have already reviewed the national guidelines for diagnosing autism in adults and made recommendations for improvements.

The research tested the suitability of quality of life scales for autistic people. The researchers involved over 300 autistic adults in developing a tailored quality-of-life scale that covers issues that may affect autistic people’s quality of life more than other groups, including autistic identity, sensory overload and problems accessing services.

Findings from interviews with autistic adults suggested it would be worthwhile to improve public understanding of autism and also make sure health and social care services are better equipped to support autistic adults.

Read the most recent published work from this project