Understanding and improving autistic adults’ experiences of breast cancer diagnosis and treatment

Breast cancer can happen to anyone. Going through breast cancer diagnosis and treatment is tough. But for autistic people there are additional barriers that make this particularly difficult.

Hospitals are often noisy and overcrowded, with bright lighting. This can cause sensory overload. And a cancer diagnosis will mean multiple visits to hospital for treatment. Other barriers include accessing information in the right amount of detail. And, forming trusting relationships with the medical team to make sure they’re understood, believed and listened to.

Usually, research discusses non-autistic people’s view of what breast cancer diagnosis and treatment is like for autistic people. But to find out what it’s really like for autistic people, we need to ask them directly about their experiences.

Professor Manuela Barreto, Dr Char Goodwin and Professor Ginny Russell of the University of Exeter are studying the experiences of autistic people who have had breast cancer. And what challenges they face through diagnosis and treatment.

They’ll be inviting autistic (diagnosed or self-identified) people who’ve had a breast cancer diagnosis, have finished hospital treatment, to take part in this study.

The research team will be working closely with autistic people to make sure that they’re asking the right questions. They’ll be forming an advisory group of autistic people who have had breast cancer to co-design the questions for each part of the study. Char, who’s leading this project, is autistic and has lived experience of breast cancer.

First, they’ll be reflecting on Char’s experience of breast cancer diagnosis and treatment, including journal pieces written at the time. She’ll also interview autistic people to understand what was helpful and what was challenging throughout their breast cancer diagnosis and treatment.

They’ll then use this insight to design and launch a nation-wide online survey. This survey is for autistic and non-autistic people who’ve gone through breast cancer diagnosis and treatment. The researchers want to understand what experiences are unique to autistic people and what solutions people propose.

Based on the results from this study, the researchers and advisory group will provide a set of guidelines for healthcare professionals to better support their autistic patients. And, to give advice to autistic individuals going through breast cancer diagnosis and treatment.

This project could help us improve the experience of autistic people going through breast cancer diagnosis and treatment. It’ll help us to better understand the barriers they face, amplify their voice and raise awareness for both healthcare professionals and the autistic community.

We don’t know the actual number of autistic people living in the UK as current figures are based on an autism diagnosis. It’s likely that the number is much higher because waiting lists for assessment are very long throughout the UK. And there are many people who self-identify as autistic, or are undiagnosed. What we do know is that autistic people experience barriers to healthcare that impact their prognosis of time-sensitive diagnoses like cancer.