Autistic adults with breast cancer will be invited to share their experiences of diagnosis and treatment as part of a new research project funded by Breast Cancer Now.
The research and support charity has awarded funding of £173,189 to Dr Char Goodwin, Professor Manuela Barreto and Professor Ginny Russell at the University of Exeter. During this three-year study, the researchers will interview autistic adults who have had a breast cancer diagnosis about their experiences from diagnosis to finishing hospital treatment.
Going through breast cancer can be tough for anyone, but for autistic people there are additional challenges that can make navigating the healthcare system particularly difficult.
For example, autistic people might struggle with the often noisy and crowded environment and bright lighting in hospitals which can cause sensory overload. This can be challenging when a cancer diagnosis will require multiple hospital appointments.
Previous studies* indicate some of the greatest barriers for autistic adults in seeking medical care include: not feeling understood (56%), waiting room environment (51%), deciding if symptoms warrant a GP visit (72%) and difficulty making appointments by telephone (61%), and autistic people are less likely than non-autistic people to attend screening appointments.
Dr Char Goodwin and her team will draw on the findings of their research to design and launch a nation-wide online survey for autistic and non-autistic people who have been treated for breast cancer, to help them better understand what experiences are unique to autistic people, what works, what doesn’t and what solutions can be found.
Drawing on the results of this study, they will provide a set of guidelines for healthcare professionals to better support autistic patients, and advice for autistic people going through breast cancer diagnosis and treatment.
The voices of autistic people are central to this research, and an advisory group of autistic people who have had a breast cancer diagnosis will be formed to advise the researchers and help co-produce the interview and survey questions as well as guidelines for health professionals and the autism community.
Dr Char Goodwin is autistic and has lived experience of breast cancer and says: “Often research focuses on other people’s perspectives of what breast cancer diagnosis and treatment is like for autistic people. This research recognises the importance of hearing from autistic people themselves about their experiences.
“We know that the earlier breast cancer is diagnosed, the higher the chances are of successful treatment; but autistic people experience barriers in healthcare that can delay getting their diagnosis and starting treatment. It’s crucial we understand how autistic people experience breast cancer care, from their perspective, so that barriers can be removed or reduced.”
It is unknown how many autistic people are diagnosed with breast cancer in the UK each year. Current figures are based on an autism diagnosis, but in reality, the number is likely to be much higher given the long waiting lists for assessment for autism throughout the UK, and the many people who self-identify as autistic or are undiagnosed. What is known is that autistic people have a worse prognosis and poorer experiences when it comes to cancer**.
Dr Simon Vincent, Breast Cancer Now’s director of research, support and influencing said: “Building an accurate and detailed picture of how autistic adults’ experience a breast cancer diagnosis and treatment is the first critical step towards improving their care. We’re delighted to be funding this research which will reveal key lessons for the healthcare system, and organisations such as Breast Cancer Now, so we can continue to best shape our support to meet the specific needs of autistic adults with breast cancer in the future.”
Breast Cancer Now is here for anyone affected by breast cancer, providing support for today and hope for the future. Find out more at breastcancernow.org
For further information or to participate in the research, please visit https://sites.exeter.ac.uk/aebcstudy/
Notes to editor:
** https://pubmed.ncbi.nlm.nih.gov/26541693/ (see table 4)
This project will benefit from the collaboration of Ms Eleanor Jane Turner, Dr Mary Doherty and Dr Sebastian Shaw who bring breast cancer surgery, neurodiversity-affirmative autism and research methodology expertise.