Autistica has developed a new plan alongside NHS England to offer every autistic person in England a tailored annual health check by 2030.
The charity has developed the plan as currently, autistic people face extremely poor health outcomes, and are dying earlier than their peers as a result.
The most recent analysis by NHS England which used data from 2020-21 showed that autistic people in England die, on average, five years earlier than the general population, and have a 51% higher mortality rate.
Autistic people with learning disabilities are at the highest risk of a range of physical health conditions. However, all people on the autistic spectrum face increased risk of illness and early death from a wide range of physical, mental and neurological conditions.
The charity says that while autistic people often face the same preventable health problems that affect the general population, they can experience worse outcomes because they are less likely to approach healthcare services or have successful interactions with them.
This is partly because healthcare providers often report a lack of confidence and training around treating autistic people, and may not have up to date knowledge about the health issues that frequently co-occur in autistic adults.
While the Oliver McGowan mandatory autism training aims to address this gap, there is no formal health check for autistic people like there is for those with learning disabilities.
Autistica says annual health checks for people with learning disabilities have been shown to be acceptable to patients, cost-effective and able to detect multiple health conditions per person, ranging from mild to serious health complaints, and that detection of problems using health checks has led to health gains for people with learning disabilities.
Other gains include receiving treatment for detected conditions, easing of symptoms and less distress related behaviour due to health issues being addressed sooner. Even the detection of milder health conditions can improve overall quality of life and prevent more costly treatment being needed later on.
Autistic people on the learning disability register should already receive a health check, but the most recent estimates suggest at least 60-70% of autistic people do not have a learning disability. This means that many autistic people are missing out on the opportunity to have their health reviewed.
Autistica says they will now consult with a range of autistic adults, supporters, healthcare professionals and commissioners to ensure any future delivery of health checks is accessible for patients.
While the charity has already secured funding which has supported researchers to coproduce and pilot a prototype health check, pre-appointment questionnaire and training package, they now aim to secure further funding fore research to build on the existing evidence base.
James Cusack, Autistica CEO says “change cannot come too soon.”
“When creating the NHS, the government made a promise to provide a healthcare system that “everyone – rich or poor, man, woman or child – can use and be part of. But autistic people are being left behind.”
“If, together, we succeed in delivering [the plan], then we … will have shown that autistic people’s lives do count and that we are willing to go that extra step in ensuring they are able to live them. The NHS’s promise is that “everyone…can use and be a part of” it. To do that, given what we know today, that also means ensuring that every autistic adult is offered a yearly, tailored health check,” he said.
