Improving sexual health services for neurodivergent young people

In this month’s Sexual Health, Reproductive Health and HIV Policy eBulletin eFeature, Dr Helen Dring-Turner, Interim Designated Neurodivergence Lead at Brook, explains the organisation’s commitment to making its sexual health and wellbeing services work for neurodivergent young people.

Brook’s new 2023-26 strategy sets out our ambitious plans for the next three years, highlighting an increased focus on fighting stigma, and a continued commitment to increasing accessibility, challenging inequality, and driving innovation.

We are determined to increase accessibility to our range of sexual health and wellbeing services for those facing additional barriers, such as neurodivergent young people.

We know that participation and service user voices are key to ensuring that we meet the needs of the communities we support, and so over recent months we have been working directly with neurodivergent young people to better understand their experiences.

The term neurodivergence refers to anyone whose brain works neurologically differently to what is considered typical. It’s an umbrella term developed by Kassiane Asasumasu which includes, but isn't limited to, conditions such as autism, ADHD, learning disabilities, and OCD.

The evidence

We know through our own work, and supporting evidence, that neurodivergent and neurodiverse young people often lack access to the same Relationships and Sex Education (RSE) or sexual health services as their peers. This can include less RSE at school, or finding it harder to visit a sexual health service.

Research shows that people with learning disabilities often receive less RSE than their peers, and when they do receive RSE, it is sometimes delivered in a way that isn’t appropriate or accessible for people with a learning disability

This means that people with a learning disability often don’t have a complete understanding of what relationships and sex means, and lack access to all the information they need to keep themselves safe and live healthy, happy lives. They can also be more likely to experience unwanted pregnancies or, conversely, to be given contraception without fully understanding what it is for, or what effects it may have on their body.

A 2009 study of 23 people with learning disabilities, all using some form of hormonal contraception, showed 14 of the women had no knowledge of how their contraception worked and only 5 people said they had made the decision to use contraception themselves.

Brook’s work so far

Our new strategy outlines our commitment to working directly with communities experiencing inequitable health outcomes, and undertaking research to better understand and respond to the root causes of these inequalities.

As part of our Annual Participation Consultation, our participation team interviewed groups of neurodivergent and neurodiverse young people aged 16-25 across England, discussing their previous experience with sexual health services and general health services, to identify how they can be improved.

During these focus groups, we learned a lot about making sure that research environments are inclusive for neurodivergent people. This is something we will listen to and learn from as we deliver our new strategy and carry out future research.

We’ll be releasing the findings of our Annual Participation Consultation later this year, including a toolkit to help clinicians make spaces more accessible for neurodivergent people.

 There are some clear themes emerging from our interviews so far, including the idea that neurodivergent people experience anxiety attending unknown clinics and healthcare settings – not just because of worries around their sexual health, but also due to the lack of spatial familiarity, and sensory demands they experience. 

Young people who already feel familiar and comfortable with health settings spoke about the difficulty in suddenly being seen as an adult. One young person talked about always being given a leaflet with pictures to explain what was happening, but “when you grow up you have to read the words and I don’t get a picture one anymore, I think it’s a doctor rule”.

We’ve established our internal terms of reference and consistently ensure that staff are familiar with the key terms around neurodivergence and neurodiversity. Our aim is to create a culture where neurodivergent and neurodiverse people are celebrated and welcomed, rather than simply accommodated.

As part of Neurodiversity Celebration Week in March, we asked members of our Participation Forums to talk about what neurodiversity means to them, and you can see some of their valuable contributions on Instagram.

Brook’s plans for improving access and representation for neurodivergent people aren’t limited to the people we work with in our clinical, education, and wellbeing services. We’re also looking at how we improve things for our staff. This includes improving our training around neurodivergence, providing a social space for staff who are neurodivergent to talk about their experience, and providing lots of opportunity for reflection on our training and management practices.

How can people get involved?

We are excited to be launching a neurodivergent participation forum over the next few months to allow for greater neurodivergent voice in all aspects of our work. If you’d like to be involved in this, please email participation@brook.org.uk

To find out more about our exciting plans over the next three years, you can explore our strategy online, and for more current updates please follow us on social media including our blog.

Published in April 2023 edition of the Sexual Health, Reproductive Health and HIV Policy eBulletin.  The content of all eFeatures represents the views and opinions of the authors. FSRH and coalition partners do not necessarily share or endorse the views expressed within them.