This project involved co-designing a health check for autistic adults in collaboration with autistic people, carers and supporters of autistic people and Primary Care staff. It investigated whether this health check was acceptable to autistic people and whether it improved health outcomes.

• To identify the barriers and facilitators to healthcare access for autistic people.
• To create and test an autism-specific health check.
• To co-design a digital pre-appointment questionnaire.
• To design a training package for the autism-specific health check.
• To pilot the autism-specific health check in NHS primary care.

Autistic people experience some health conditions more frequently than non-autistic people, such as diabetes and anxiety. Many autistic people have said that they find accessing healthcare, identifying their health needs, and managing appointments with professionals difficult. These barriers can cause physical and mental health issues to go untreated.

This project set out to trial a co-designed health check, which covered the physical health, mental health, and support needs of autistic people.

It addressed an important gap in research and worked towards reducing healthcare barriers and improving outcomes for autistic people. The project strongly linked with our Moonshot Vision towards a society that works for autistic people, specifically in its ambition to create inclusive health services which have autistic people’s needs recognised and supported appropriately.

There were three parts to this project:

1. Review existing research

First, the researchers reviewed the existing research on what factors affect access to healthcare services. Focus groups of autistic adults and relatives/supporters were formed and conducted to explore their lived experiences of receiving healthcare. Healthcare professionals were also interviewed.

2. Co-design the health check

Next, the researchers ran a national survey to explore autistic people’s health needs, health service use, and views of health checks. A co-design process involving focus groups and interviews was used to develop the health check, a digital pre-appointment questionnaire, and a training package for the health check.

3. Randomised controlled trial

Lastly, a trial investigated whether the health check was an acceptable treatment that can be delivered within NHS settings. Over 200 autistic adults were randomly allocated to either attend a health check or receive their usual care. Comparisons were then made between these two groups to examine the health check’s effects.

• Jeremy Parr (Co-Principal Investigator) is a Professor at Newcastle University. His research focuses on autism and neurodisability.
• Barry Ingham (Co-Principal Investigator) is a Senior Lecturer at Newcastle University and works for the Cumbria Northumberland, Tyne and Wear NHS Foundation Trust.
• The research team is supported by Helen Taylor (Clinical Research Associate), Hannah Merrick (Research Associate), and Colin Wilson (Engagement Coordinator).

The wider project team includes autistic people, carers and supporters, and GPs and involves collaborators from Newcastle University, Royal College of General Practice, University of Glasgow, University of Queensland, Deakin University, Portland State University, and ourselves.

Our charity was part of the project team throughout and supported the dissemination stage.

This project was funded by Autistica and NHS England.

This project took place over six years from January 2019 to May 2025.

Project website: Health Checks for Autistic Adults

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