Carly Jones and her BFF Brad

Sex, screenings and inclusion

10th September 2019

How is everyone’s September going? Kids’ back to school, college or home ed duties ramping up again? I hear you.

I am writing to you after taking a break from a dot-to-dot quiz type book on a Friday evening from the comfort of my sofa, 24 hours after having a LLETZ procedure. For those amongst you who have had this procedure before, or those following my now slightly regrettable choice to LIVE TWEET my smear journey, you’ll know it’s a loop procedure to remove abnormal cervical cells caught on a smear test.

In my case, that was an overdue smear test which I put off for almost a year with anything and everything coming before my own health.

I am a single parent of three, two of my daughters are autistic, I am self-employed, have a massive mortgage and I home educate my kids. All of this, plus my cat’s vet appointment to prevent him getting ticks came BEFORE ME on the list of priorities.

Parents and carers – we NEED TO PUT OURSELVES FIRST SOMETIMES!

Staying safe with screenings

This rather stark wake-up call of ‘High Grade, Severe Dyskaryosis’ got me thinking, not sleeping and doing better research than the FBI on cervical screening, abnormal cells and early cervical cancer data. What I learned from this, among many other things, was a higher risk of abnormal cervical cell treatment for:

  • A woman who had sexual intercourse at an early ageCarly waiting to get her smear test
  • Women who had given birth before the age of 17
  • Women who had had multiple partners
  • Women who had HPV

Now, being autistic (as with many autistic adults), my brain is visual. As a child this made me particularly skilled at dot-to-dot books, where completion took seconds, regardless of the fact I also have dyscalculia and struggle to read numbers. As a young adult, this quality helped me recall events and discussions due to an almost photogenic precision with customers at work; as an older adult is a vital part of my work, meaning I can almost dig out what was then considered a useless fact or statistic and realise it was perhaps the missing number or dot to see the bigger picture. This is a skill that’s imperative when working with strategy, policies and loophole finding!

Now all this sounds rather grand, but as the wise autism consultant Sarah Hendrix says in her Autism and Girls talks ‘your intelligence won’t keep you safe.’

And sadly, she’s right. In 2016 I ran an informal survey online with 88 autistic adults. 91% reported experiencing abuse prior to diagnosis. Now I know for everyone, and most of all parents, reading this it is a worrying statistic, but the silver lining is that 73% said after diagnosis and/or subsequent support they either experienced no abuse or felt able to report the abuse.

Inclusive sex and relationships education

In that the same year, I attended the United Nations and pleaded for better Sex Education for home educated girls who often miss out on not only everyday learnings but also Sex Ed, safeguarding and immunisations, including HPV.

September 16th-20th is Sexual Health Awareness Week 16th. The theme of the awareness week this year is inclusivity; relationships, sex and disability.

It gives me great joy that disability is a core part of this year’s theme. And that My Family, Our Needs is giving it the attention it deserves with some must-read articles lined up for the awareness week. Make sure you don’t miss them.

The theme of the United Nations Sustainable Developmental Goals ‘No one left behind’ must be in the mindset of all policies. This doesn’t need to be disability focused or specific, it just needs to find the hardest to reach and work from that position outwards.

When we reach the hardest to reach, we reach everyone else along the way.

Have a look at these statistics:

  • 19-31% of disabled women access smear tests as opposed to the 73% of general population.
  • Autistic adults have an average life expectancy of 37-53 years.

Disabled people are being left behind and things must be done to ensure they are included in every aspect of life. We must not assume that children with disabilities do not grow up to be adults with sex lives.

(We do!)

The bigger picture is how to make that a consenting, positive, safe and healthy experience for them?

Feet back up for tea and a custard cream and I look forward to catching up again in October.

Carly x



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