Approximately one in a hundred people in the UK has autism, a learning disability that affects how a person communicates and relates to the world. Autism exists on a spectrum, meaning the condition affects them in different ways; while many autistic people are able to live full and independent lives, many require specialist support. We look at what practices can do to better engage and support autistic people
Autism awareness is higher than ever, but it’s not translating into better health outcomes. Evidence from Sweden suggests that many autistic people have poorer physical and mental health than the general population, leading to many autistic people dying early. The researchers found that factors affecting this include the way that autistic people are supported in society, as well as how easy or difficult they find it to get help from health professionals.
In its recent report, Personal tragedies, public crisis: the urgent need for a national response to early death in autism research charity Autistica states that adults with a learning disability are 40 times more likely to die prematurely due to a neurological condition, with epilepsy the leading cause. It’s important as those with autism are 20 – 40% more likely than the general public to suffer with epilepsy. Autistic adults are also nine times more likely than the general population to take their own lives. Autistica is pushing for change. ‘We cannot accept a situation where many autistic people will never see their 40th birthday,’ they assert.
The NHS Long Term Plan considers autism – alongside learning disability – as a clinical priority. Specifically, the plan urges the NHS to take action to ‘tackle the causes of morbidity and preventable deaths in people with a learning disability, and for autistic people.’ The Long Term Plan includes proposals for the development of a pilot project creating a specific health check for autistic people. It’s a start, but there is much more that can be done to improve access to services and health outcomes for those with autism.
The National Autistic Society estimates that 11 in every 1,000 people (1.1% of the population) are on the autism spectrum; this means if you are a GP with a list size of 2,000 people, you’re likely to have around 22 people on the autism spectrum on your list. One of the biggest challenges is ensuring that autistic people have fair and equitable access to healthcare, says Tim Nicholls, head of policy at the National Autistic Society who is calling for more tailored services for autistic people.
Autistic children and adults need to be able to see their GP, just like anyone else; but local surgeries can be crowded, noisy, bright and unpredictable and this can leave some autistic people feeling so overwhelmed that they avoid seeing their GP altogether – and end up missing out on the physical and mental health treatment they need.
These barriers can be overcome by making simple changes to the way the surgery is run – things like scheduling an appointment at the start of the day to reduce the chances of unexpected delays, or providing a quiet room for a patient who is feeling overwhelmed to wait in. Adjustments should be tailored to the needs of each patient but, as a rule, it’s good to ask clear, specific questions, give people time to process what you’ve said, and consider if you can adapt the environment for any sensory needs. All of this needs to be underpinned by a good understanding of autism.
GPs, nurses, receptionists and other staff all have a role to place in making their practice more autism-friendly. The Royal College of GPs have developed an autism toolkit which is useful for GPs and practice staff.