Autism Health Passports are not helping Autistic people receive equal healthcare
Dr Aimee Grant
Health passports aim to help patients share their needs with health professionals. They can be paper-based or digital. There is not a single type of health passport used in the UK. Sometimes patients fill them in alone, other times they are completed by health professionals.
Autism-specific health passports were developed because Autistic people have worse physical and mental health than non-Autistic people. They aim to make healthcare more accessible, so that Autistic people receive the same standard of care as non-Autistic people. In the UK, advice for health professionals (NICE guidance) suggests that Autism Health Passports should be used as standard.
Last year, we reviewed the existing research that looked at how Autism Health Passports worked in practice. All these studies involved developing a tool and describing what happened. We found a lot of barriers to them being used, including lack of: staff understanding of Autism, time, and resources. As such, we concluded that Autism Health Passports were unlikely to give Autistic people equal treatment to non-Autistic people because they were operating in a ‘hostile context’.
Our new research, asked 193 Autistic people from the UK who had been pregnant about their experiences of:
· Healthcare generally
· Autism Health Passports
· Maternity care (you can read about infant feeding experiences here; more findings will be shared soon).
Our participants told us that accessing healthcare was very difficult for them. We asked 15 questions, and for 13 of these, over half of our participants said it was difficult. This included:
• Struggling with awareness of pain, injury, or discomfort (67%)
• Feeling anxious about phoning healthcare, e.g.: to book appointments (90%)
• Delaying seeking healthcare when feeling unwell (80%)
• Delaying making phone calls, e.g.: to book appointments (83%)
• Feeling anxious during appointments (83%)
• Masking during appointments (87%)
• Finding it more difficult to communicate in healthcare appointments when distressed (79%)
There were some differences in these healthcare experiences depending on if people were diagnosed as Autistic, undergoing diagnosis, or self-identifying. Overall, those who were diagnosed or undergoing diagnosis reported greater difficulties in accessing healthcare than those who were self-identifying, although we do not know why this is.
Thinking about Autism Health Passports, almost three quarters of our participants had not seen one before our study. Only three participants regularly used a health passport, and 90% said they have never used one.
We then asked the question about how useful they thought an Autism Health Passport could be, we gave people a five-point scale from strongly agree to strongly disagree The consensus was underwhelming; somewhere between the neutral middle category and ‘somewhat agree’, showing that our participants thought the health passports might be a bit useful, but not very useful in making healthcare easier for them to access.
The biggest barrier to using a health passport was that health professionals discriminate against Autistic people, so there was a fear that they would treat Autistic patients worse than non-Autistic patients. For that reason, it wasn’t safe for our participants to share they were Autistic or ask for any accommodations.
Other barriers included thinking staff would ignore a passport if they tried to share it during appointments. For those with a range of Disabilities, or a number of conditions, a passport was viewed as being too simplistic.
To reduce these barriers, our participants thought that staff needed Autism-positive training to better understand Autistic people, an option for longer appointment times, and for Autism support workers to be available in health services.
Our research shows that it’s unlikely that Autism Health Passports are reducing health inequalities for Autistic people who have been pregnant.
I believe that we need to fundamentally change healthcare settings to make them more accessible for Autistic people in general. This has the benefit that it would improve conditions for most people using health services, something known as ‘universal design’.
Guidance has been co-produced with Autistic people to recommend small changes that can help health professionals communicate effectively with Autistic people. Also, Autistic health professionals have created a framework that could be used for service design. Whatever the next steps are, it’s very important that Autistic people are at the heart of developing new ways to make healthcare more accessible.