Why Smear Tests Are Still Failing Neurodivergent and Disabled People

Let’s get something straight: no one with a cervix enjoys a smear test. Cervical screening, as medics call it, is something the NHS now expects (as of 1 July 2025) people aged 25 to 64 to attend every five years. Its purpose is to detect early signs of cervical cancer.

Nobody likes the feel of a cold metal instrument inside them, undressing from the waist down, and lying on a hard bed under harsh lighting. Nobody wants to be ‘open’ with a stranger peering at their private parts. Most people see smears as a necessary evil — over in 10 minutes, then back to their day.

But for many, it’s not that simple. Neurodiversity, trauma, disability, anxiety, sensory issues, learning disability, and lack of trust in medical professionals mean some people cannot be examined without extra support. That need is rarely discussed or understood.

As an autistic woman, and through my work with NHS surgeries on making smear testing more accessible, I know most clinicians have no training in testing people with additional needs. The barriers are significant and often invisible. GP surgeries, which receive payments linked to Quality and Outcomes Framework targets, have both a moral duty and a business reason to investigate why uptake in certain groups is so much lower than the national average.

In November 2024, NHS England urged people to come forward when it calculated that five million women and people with a cervix were not up to date with screening (then every three years for 25–50-year-olds). This matters: the NHS aims to eliminate cervical cancer by 2040. Those avoiding smears are often at greater risk of other cancers too — and less likely to attend any preventative screening. For neurodivergent women, the reasons can be physiological, but research also shows we are more prone to a wide range of conditions. My focus here is on why we struggle with smears specifically, and the dangers that poses.

In January 2024, I asked my GP for a smear under general anaesthetic. I was told this was “categorically” not possible — with no mention of referral. They didn’t understand how autism made it impossible for me to be examined. For me, it is far from a ‘necessary evil’. I have had therapy just to tolerate being near pregnant women. I dissociate at the thought of smears. I lost my virginity in an operation to remove my hymen, then endured months of dilator use, well-meaning but unhelpful advice to “have a glass of wine and a hot bath,” and Friday nights crying in the tub feeling like a failure. I have never had a bad experience with a clinician, nor am I a prude, but sensory overwhelm, object impermanence, feelings of powerlessness, and a strong gag reflex make smears intolerable.

For people with learning disabilities, myths and assumptions add further barriers. In our research for smear test accessibility projects in 2020 and more recently, some parents told us their daughters had never been tested because “obviously they aren’t sexually active” — a stereotype that infantilises women and keeps them from proper medical advice.

It took my GP a year to refer me for a smear and colposcopy under general anaesthetic. I’ve now been on the gynaecology waitlist for nine months, with no idea whether my turn is weeks or months away. The NHS is slow to adopt untested or unfamiliar approaches, but it was encouraging to hear a specialist mention self-testing. While not a smear, HPV self-tests can identify cases needing further investigation. Daye.com and the NHS are working to make this a viable option for those who can’t face a clinician-led test.

Self-testing won’t suit everyone. Some lack the dexterity. For others, even opening the kit is an obstacle (my Daye.com kit expired after a year untouched). It’s not for me to say everyone should request general anaesthetic either.

What we can do — and what the evidence supports — includes:

• Make spaces more welcoming.
• Offer double appointments.
• Provide visual guides.
• Hold open evenings explaining the process.
• Simplify booking.
• Remove people from reminder lists if the letters cause distress.
• Record reasonable adjustments.
• Train staff in neurodiversity, disability and gender diversity.
• Encourage feedback and act on it.
• Understand the difference between discomfort and trauma.
• Train support workers to act as advocates.

Having someone present who understands neurodiversity can be the difference between managing a test and avoiding it entirely — it’s how I managed my only two smears in 47 years.

Mostly, we must accept that for some people, as currently practised, smear tests are out of the question.

​Sara-Louise Ackrill is a neurodivergent therapist, entrepreneur, and workplace consultant. Founding CEO of Wired Differently and co-founder of Start Differently, a non-profit, Sara-Louise supports neurodivergent individuals personally in employment and as entrepreneurs. Recognised as a ‘Top UK Neurodiversity Evangelist’ and one of Small Business Britain’s #IAlso100 2024 entrepreneurs, Sara specialises in workplace inclusion, neurodiversity awareness, and domestic abuse awareness in the workplace advocacy. She is currently developing wNDerful, an app for neurodivergent people, and strives to create inclusive spaces through psychoeducation and compassion.

Story by Sara-Louise Ackrill for Belters News/The Double Agents London