Most of us get slightly anxious about going to the GP. What if it turns out that nothing’s wrong? Or perhaps there’s something seriously wrong? Despite these minor concerns, most of us are happy to book an appointment, turn up at the practice and talk to a GP about our health problem. But what if you’re autistic? What if you have trouble communicating verbally and yet the only way to book an appointment is over the phone? What if your experience of pain is different to that of other people, and you can’t work out whether you need to go to the GP in the first place? What if the sounds and smells of the doctor’s waiting room are too overwhelming for you to even enter the building?
Even though autistic people might have many concerns about going to the GP – concerns that are probably different to most people – at least they’ll be talking to someone with knowledge and experience of autism, right?
The Centre for Research in Autism and Education at UCL recently teamed up with the Royal College of General Practitioners to find out how much GPs know about autism, whether they had any autism training and what GPs’ experiences were of working with their autistic patients. Shockingly, the results showed that, of the 304 GPs surveyed, 39% had not received any autism training. What’s more, of the GPs who had received autism training, almost 40% didn’t find it very useful. It is not surprising, then, that GPs also reported having little confidence in caring for their autistic patients. Given that autism affects one in 100 people – over 700,000 people in the UK – these are deeply troubling findings.
To compensate for their lack of training, GPs seem to be relying on their own experiences of autism – through autistic family members, friends or colleagues – as a source of tacit knowledge. Yet autism affects different people in different ways. An over-reliance on personal knowledge of autism might lead to GPs having a narrow, idiosyncratic view of autism. This could result in GPs missing the signs of autism, especially in people who don’t neatly fit the autism stereotype (such as women and girls). Getting an autism diagnosis is difficult enough, with lengthy delays of around two years for adults and three and a half years for children. As GPs tend to be the first port of call for parents or adults seeking help for a suspected autism diagnosis, they play a key role in ensuring that the process of accessing a diagnosis starts smoothly and swiftly.
GPs have a duty of care to their autistic patients, who are a particularly vulnerable group. While the latest figures suggest that two-thirds of people will experience a mental health problem in their lifetime, rates of mental health problems are much higher in both autistic children and adults. Autistic people also have higher rates of medical problems such as epilepsy and are more likely to die prematurely.
Respectful, accessible and tailored
Better services to meet the needs of autistic patients are urgently needed. Encouragingly, the Royal College of GPs have recognised autism as a priority area and have developed tools and training resources to support GPs in their practice. But the need for change extends beyond GPs. Research from the US highlights how autistic people aren’t satisfied with their experiences of healthcare more generally. This is partly due to healthcare providers (including doctors, nurses and other medical staff) not having much knowledge of autism, but also because healthcare providers are often unwilling or unable to make accommodations to overcome some of the specific challenges noted by autistic people.
It’s not clear what the future holds for the British healthcare system. This lack of certainty can be especially challenging for autistic people and their families, who often get a rough deal even at times of relative stability. What is clear, however, is that now – more than ever – autism must be a priority. From the receptionist at the GP surgery, to the doctors and nurses working with autistic patients, to the healthcare commissioners overseeing services, everyone must commit to working with – rather than for – autistic people and their families. Ensuring that healthcare is respectful, accessible and tailored to the specific needs of autistic people are the first steps to achieving this goal.
Laura Crane has received funding from the British Academy.
Liz Pellicano receives funding from the European Commission, the Medical Research Council, the Economic and Social Research Council, the Leverhulme Trust, the Clothworkers’ Foundation, Pears Foundation, Autistica and various autism charities.