The research exploring why some autistic women are not going for smears

Autistic women say smear tests can leave them feeling distressed, dismissed and in pain, with some avoiding them altogether out of anxiety.

Research funded by Cancer Research Wales will assess how barriers to cervical screening for autistic women can be removed.

Dr Aimee Grant from Swansea University said evidence suggested fewer autistic women had smear tests or the HPV vaccine.

"Sometimes autistic people can find it hard to explain what's wrong and our pain responses might look muted, so they might then get missed by health professionals," said the associate professor in public health, who is also autistic.

"All of this leads to really bad health outcomes."

Smear tests, also known as cervical screening, check the health of the cervix and help to prevent cervical cancer - though they're not a test for cancer.

Women aged 25-64 are invited for smears every five years and for most they will not be painful, but might be uncomfortable.

However, they can be painful for some people, particularly those with vaginal dryness or conditions like endometriosis.

Willow Holloway said she was over-due a smear because poor experiences had left her with anxieties around the procedure.

The 57-year-old from north Wales, who is autistic, said what would be "dismissed as a bit uncomfortable" to others could be "extremely painful" for her.

But she said "it wasn't even recognised that I was in distress" when she last had a smear.

"Overcoming that anxiety and knowledge that my pain may be dismissed just creates too much of a barrier to me."

Holloway worked with Dr Grant as part of the research project's community council.

"Research that's done about us, should include us and this is fully co-produced with autistic women with a wide demographic or experience and ages," she said.

Dr Grant said: "One thing that's come up in my research is people being concerned that if they need the smear to stop and they say 'stop', will it actually immediately stop? Can they even say 'stop'?

"That worry about being out of control and unable to communicate at that point is a big worry."

She said the research involved Cervical Screening Wales, as NHS staff were keen to get it right for neurodivergent patients.

"We know that 90% of autistic women have been sexually assaulted and we know that makes it harder for people to have a smear test."

Dee Dickens was the victim of sexual violence as a young woman and said smears had previously left her feeling violated when there had been a lack of communication.

"I have a real thing about autonomy and when you're lying there you are vulnerable," said the 55-year-old from Pontypridd, who has both autism and ADHD.

She said in recent years she had become better at advocating for herself, but she had also felt chastised by staff for "making a fuss" during painful smears.

Holloway added: "It's something that happens throughout our lives as autistic people, that our experiences are dismissed.

"But we also need to understand the anxiety that comes along with being autistic or having any type of communication difference - because when you're anxious that just ramps up your sensory sensitivities."

A soft brush is used to take a sample of cells from the cervix, which is at the neck of the womb, at the top of the vagina.

The smear looks for high-risk types of a very common virus called human papillomavirus (HPV).

Almost all cases of cervical cancer are caused by high-risk types of HPV.

Regular screening can reduce the risk of getting cervical cancer by 70%.

Dr Grant said the challenges could affect any type of medical appointment, as an autistic person might struggle with bright lighting in clinical settings or fear that noise-cancelling headphones would mean they miss their name being called.

Arriving at an appointment with a list of symptoms written down has also been misinterpreted as "potential drug-seeking behaviour", she said.

"Sometimes autistic people really over-prepare, they're worried about leaving something out, so they might go in with 10 pages of notes, but the doctor only has 10 minutes.

"There are a lot of small things we could do that would help autistic people but would also really help the health professionals."

Holloway said she would like to see the development of hubs specifically for autistic and neurodivergent people.

Catrin Edwards-Greaves, 35 from Llantrisant, Rhondda Cynon Taf, said going for a smear could be a challenge.

"There's a lot of decision making involved," she said, explaining that even where to register or queue on arrival could be confusing.

"It's noisy and busy which can be difficult for me because a lot of my experience of being autistic is around sensory overload so that can be challenging."

But she said her smear experiences had been positive because the process was broken down into steps, and having lost a friend to cancer at a young age she knows the importance of screening.

"This particular nurse who I was dealing with was great. She explained it all to me, she took her time. I felt very reassured by knowing what was going to happen and taking it one thing at a time.

"She said that if I was uncomfortable or in pain to tell her - it just made the expectations very clear."

Dr Grant said she expected the roll-out of at-home smear tests to be a game-changer for many autistic women, but said her research would also likely result in training resources for staff.

"Simple pointers of you might need to use really clear language or agree a hand signal to stop if people might find it hard to speak. Simple things could make a really big difference," she said.

Dr Lee Campbell, head of research for Cancer Research Wales, said take up of cervical screening across Wales was around 69% among those who are eligible, but among autistic women it is estimated to be closer to around 50%.

"If women are not participating in the cervical screening, then there's a chance that any pre-malignant conditions or early cancers - that are highly treatable when they're caught early - can actually go undetected," he said.

"We could end up with certain women having very aggressive cancers, which means that the treatment will be more aggressive in nature and with an increased likelihood of side effects.

"By stripping away these layers of inequality, one by one, we will hopefully close the gap and ensure that nobody gets left behind."