Too many autistic people die young from preventable causes. Ground-breaking new research now confirms the true scale of the mortality crisis in autism: autistic people have a mortality rate 51% higher than the general population, dying five years earlier.
By 2030 we want to ensure that every autistic person has access to a holistic health check from healthcare specialists. Our Health Checks Plan sets out how we will do that.
How can we tell what works and what doesn't work? That's where research comes in. My hope is that it then leads to a better offer of services.
Dr Barry Ingham
The need
We want to make it easier for the NHS and for autistic people to pro-actively manage healthcare needs by introducing an annual health check for all autistic people – a yearly review of existing conditions and medications. This will provide an opportunity to identify and address any new or continuing health problems that may need medical attention or referral to secondary care.
About our plan
We have developed a detailed plan that is broken down into the following stages:
Developing tailored health checks
Autistica’s health checks strategy started in response to our 2016 report on high rates of early death in autistic people, which prompted considerable thinking around health inequalities and how these could be addressed.
Autistica funded research to help understand the barriers and health inequalities faced by autistic adults and to establish what the focus of health checks should be and how health checks may best be adapted for use with autistic adults.
Testing the health check
Our clinical research partners at Newcastle University and Cumbria, Northumberland Tyne and Wear NHS Foundation Trust have developed a prototype health check, with a trial of its clinical and cost-effectiveness running until 2024. If successful, the materials will be shared with primary care services via NHS England.
Preparing health checks for implementation
In January 2023, we brought together different stakeholders, including autistic people, their supporters, health service commissioners and policymakers, GPs and researchers, in two interactive online workshops.
Health Checks Workshops ReportImproving the health check and preparing the health service for long-term delivery
Part of the value of a health check is that it gives everyone involved (from doctor, to receptionist, to patient) a focal point, which increases the chances of ‘getting it right’. However, we need to ensure that we remove any remaining barriers for providers and patients. A body of evidence from ongoing research which can demonstrate the best ways to improve uptake and quality of health checks will be essential to supporting the NHS and patients to get the benefits from health checks long-term.
As we make plans to continue our work towards access to tailored health checks for autistic people, we wanted to find out more about Autistica’s pioneering Health Checks project at Newcastle University.
Barry Ingham is a consultant clinical psychologist and an associate psychological services director of Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust. He is one of the team members driving the study. We wanted to find out more about Barry’s work and what the project has achieved so far.
How did you get involved with the project?
I've been working as a clinical psychologist for about 17 years now. I've worked clinically with adults with intellectual disabilities and autistic adults across the ability spectrum. That's led me on to some of the clinical research work that I've done with Newcastle University, which has been part of the adult autism research program being led by Professor Jeremy Parr at Newcastle University.
There’s been a number of projects that have been linked in with that that I’ve worked on looking at development of new healthcare interventions for physical and mental health conditions for autistic adults. One stream of that has been around thinking about physical healthcare and healthcare access for autistic people. As part of an attempt to look at the priorities for research in physical health and wellbeing, there was a summit run by Autistica and, within that, the development of a health check for autistic people was suggested as a priority area.
Why are health checks particularly important for autistic people?
Other studies have taken place internationally and have looked at health conditions experienced by autistic people. We know, broadly speaking, that most health conditions are more likely to be experienced by autistic people compared to other people. There are some conditions within that that you might see autistic people experience more often, such as difficulties with sleep, epilepsy, some mental health conditions, like anxiety and depression. High rates of suicide have been highlighted by Sarah Cassidy and Jacqui Rodgers' work. But we're still learning about what we think might be more likely to be experienced by autistic people. What we’re mindful of is not just focusing on the things that we think are relevant and then missing some really important.
How did you begin to learn more about what was needed to create useful health checks?
The first stage was to think about what the barriers are to healthcare access for autistic people. We've done systematic reviews and surveys with autistic people. We found some consistent findings around what the barriers are and they're probably not hugely surprising to people.
There are three main areas of barriers, the first being difficulties in communication between autistic people who need to access healthcare and healthcare clinicians. That would be probably driven to some extent by difficulties that clinicians have in terms of their own awareness and understanding of autism. And also being able to adapt the way that they're communicating in terms of the autistic person's own communication needs and having an understanding of the person themselves.
A second main barrier, which is probably related to this, is services not being set up in a way that supports autistic people in getting access to healthcare. The complicated nature of the healthcare system means that it is difficult for people to navigate at the best of times. If there are difficulties that autistic people may have in terms of communication or processing of information, then entering into a complex healthcare system, which assumes that you can do all those things is a challenge.
The final barrier found was around sensory differences. They can be a challenge before coming to the actual clinical healthcare setting, through to being in the waiting room – the noise and lights that might be involved. Then into the actual clinical appointment itself and all the potential overloads and differences that some autistic people may experience. And your clinical setting isn't necessarily adapted to manage those very well.
Once you had an understanding of the barriers facing autistic people where did the project need to go next?
The second stage was about thinking, "Well, what would a health check look like for autistic people?" Looking at the potential reasonable adjustments that autistic people may need, such as adaptations to waiting rooms, adaptations to how assessments are conducted, communication style. Also, within the health checks, the hope is to be able to identify potential new health conditions that then need onward referral treatment. Then the third stage of the project is where we are at the moment in terms of the health checks project. It is about undertaking a randomised control trial of the use of health checks.
You’ve been involved in lots of research with autistic people. What is the main purpose of autism research for you?
I've worked clinically all of my adult life. My role has been supporting people with developmental differences and autistic people. I've thought about how we’re offering services to people. What it's then drawn me to is thinking, "Well, how can we tell what works and what doesn't work?” That's where research comes in. My hope is that it then leads to a better offer of services and that we have year-on-year improvements in what we’re offering.
There are lots of ways you can help us create the breakthroughs that will allow autistic people to live happier, healthier, longer lives. Find out how you can help, from donations and fundraising to partnerships and more.