Some mental and physical health conditions are more common in autistic people. Autistic people often face barriers when trying to access healthcare. This can lead to their health conditions being overlooked or untreated, leading to poor health outcomes and health inequalities. NHS Health checks improve access to healthcare for certain groups of people. A primary care health check designed for autistic adults could help to reduce healthcare barriers and improve autistic people’s health and quality of life. 

Primary care health check for autistic adults

We designed a health check for autistic adults in partnership with autistic people, carers and supporters, and health professionals. The health check offered a holistic review of an individual’s health and wellbeing by looking at their physical and mental health and social functioning. It also provided an opportunity to signpost the individual to other services for support. The health check consisted of:

1.    Primary care staff training – covering autism, the barriers to healthcare access for autistic people and health check delivery
2.    Pre-appointment questionnaire – completed by the autistic person at home before the appointment. This asked about their communication and sensory needs, adjustments required to support healthcare access and engagement and their general health and wellbeing.
3.    Health check appointment – an extended appointment with a clinician using the electronic Clinician Health Check Template, covering physical and mental health, health promotion, screening/immunisations, daily functioning, relationships and sexual health, medication and a physical examination.
4.    Health action plan – summarising the identified needs and associated actions from the health check appointment.

Evaluation of the health check

We evaluated the health check for autistic adults in a randomised controlled trial. The trial involved 224 autistic adults (aged 18 years or over), half of whom received the health check and the other half received usual care. 95 health checks were delivered by GPs, nurses and other health professionals 

We compared the health and social outcomes between the two groups, using Primary Care Health Records and questionnaires completed by the individuals over a nine-month period. We also asked autistic people, carers and supporters, and health professionals about their experience of receiving or delivering the health check through questionnaires and interviews.  

The findings demonstrated that the health check led to significant improvements in health and social outcomes. Compared to usual care, the health check identified and addressed: 

•    69% more health needs, such as mental health conditions and musculoskeletal disorders
•    108% more health promotion needs, such as immunisations and weight management
•    118% more social needs, such as employment support or financial advice.

Autistic people, carers and supporters, and primary care staff reported positive experiences of receiving and delivering the health check.  

Autistic adults identified several benefits of the health check, including feeling listened to, gaining reassurance about their health and addressing health and social issues that were important to them. This is illustrated in the following quotes:

•    “Just being able to ask and talk about things in a way like I didn’t feel I was being judged was really good.”
•    “It was reassuring that everything’s in order, my health’s fine. I’ve got nothing to worry about.”
•    “It’s been really helpful. There are some issues that I’ve been having my entire life that are now being looked into on the back of the health check.”

Primary care staff identified several benefits of the health check, including identifying and addressing previously unmet health needs, gaining a greater understanding of the person and their needs, and the opportunity to build relationships to support future engagement with healthcare. This is illustrated in the following quotes:

•    “I definitely think it’s of value and has allowed us to hopefully build those relationships that so often get lost when things are busy.” 
•    “I think it’s been really valuable in highlighting to the practice how simple adjustments can just make a patient feel so much better.”
•    “It gave the opportunity to unpick some issues that may have not been addressed otherwise and cover some health issues that they or we might not have picked up on.”

Future implementation

Several considerations were identified to support the successful introduction of the health check in primary care practice:
 
•    Clear communication: autistic adults, carers and supporters, and clinicians indicated a need for clearer communication about the purpose and scope of the checks to ensure consistency and manage expectations.
•    Tailored support: reasonable adjustments and involvement of carers and supporters are essential to enable patient engagement and reduce anxiety. 
•    Flexible delivery: services need flexibility in the way they schedule and deliver appointments, taking a patient-centred approach guided by individual needs and concerns to support engagement and ensure sufficient time to deliver the health check.  
•    System-level support: effective integration of the health check into practice would require NHS support, including funding and ensuring adequate staff capacity and training.

Conclusion

The health check for autistic adults was effective at identifying and addressing the health and social needs of autistic people. It helped reduce some of the barriers autistic people face when accessing healthcare. The results of the trial are likely to reflect the wider autistic adult population due to the inclusion of a diverse sample of participants, in terms of varying economic status, support needs, mental and physical health and specific learning disabilities. However, most participants were white, so more research is needed to understand how well the health check works for other ethnic groups.  

The health check incorporates key elements of the NHS 10-year plan, tackling health inequalities through preventative healthcare, service delivery in the local community, and through digital technology. With NHS support, such as funding, adequate resources and training, the health check could be introduced more widely in primary care. 

The results have already been shared at international autism conferences and will be presented at the National Autistic Society Professionals’ Conference. The results will also be submitted to a peer-reviewed journal for publication.

Infographics and a short animation about the health check are available on our website, along with further information about the wider research programme and our open access publications: research.ncl.ac.uk/autismhealthchecks  

Article Sources/References:

Brice, S., Rodgers, J., Ingham, B. et al (2021). The importance and availability of adjustments to improve access for autistic adults who need mental and physical healthcare: findings from UK surveys.  BMJ Open, 11(3), e043336. doi.org/10.1136/bmjopen-2020-043336

Mason, D., Ingham, B., Urbanowicz, A. et al (2019). A systematic review of what barriers and facilitators prevent and enable physical healthcare services access for autistic adults.  Journal of Autism and Developmental Disorders, 49(8), 3387-3400. doi.org/10.1007/s10803-019-04049-2 

Mason, D., Ingham, B. et al (2021). How to improve healthcare for autistic people: a qualitative study of the views of autistic people and clinicians. Autism: the international journal of research and practice, 25(3), 774-785. doi.org/10.1177/1362361321993709 

Mason, D., Taylor, H., Ingham, B. et al (2022). Views about primary care health checks for autistic adults: UK survey findings. BJGP Open, 6(4). doi.org/10.3399/BJGPO.2022.0067    

Parr, J.,R., Taylor, H., Wilson, C. et al (2024). Health checks for autistic adults: study protocol for a cluster randomised controlled trial. Trials, 25:858. doi.org/10.1186/s13063-024-08641-5 

Taylor, H., Ingham, B., Mason, D. et al (2023). Codesign of an NHS primary care health check for autistic adults. Autism, 27(4), 1079-1091. doi.org/10.1177/13623613221132921