By Dr Claire Bates, Choice Support , Supported Loving Leader
There are an estimated 700,000 autistic adults and children in the UK , which accounts for approximately one per cent of the UK's population. Many autistic adults view intimate relationships as pivotal for their well-being, underscoring the importance of addressing their unique support needs. Yet, many autistic people will not have received the appropriate sex education to meet their needs, which can increase vulnerability to abuse and exploitation.
And, although research indicates the need for relationship and sex education for autistic individuals, current provisions often overlook social aspects and diverse sexual orientations, neglecting both LGBTQ+ and heterosexual autistic individuals.
Neurodiversity Celebration Week (18-24 March), is a welcome reminder of just how important it is to celebrate the diverse perspectives and contributions autistic individuals make. That, despite facing challenges in forming and sustaining relationships, autistic individuals possess unique strengths and perspectives that deserve recognition and celebration. It is crucial that we shift away from the view that it is the autistic person who must conform to neurotypical norms and instead embrace neurodiversity as a valuable aspect of human experience.
As the founder of the national Supported Loving Network, I have dedicated my career to advocating for best practices in sexuality and intimate relationship support. My focus has been on understanding and addressing the diverse support needs of individuals with learning disabilities.
However, it's crucial to recognise the unique experiences and needs of autistic individuals, whose voices are often unheard, leading to a lack of recognition of their specific needs in this area. I was able to conduct my own research thanks to an award from the National Institute for Health and Care Research (NIHR) Applied Research Collaboration Kent, Surrey and Sussex (ARC KSS) to listen to the voices of autistic adults accessing social care and providing a platform for them to express their preferences surrounding relationships and sexuality.
The findings highlight the crucial role that social care staff play in providing informal support to individuals. Many autistic people we talked to expressed a strong desire to have honest and direct conversations with staff regarding sex and relationships, emphasising the importance of staff being open, non-judgemental, and knowledgeable about their needs. They stressed the importance of staff being trained in understanding autism and providing information in diverse formats for accessibility, and emphasised the importance of staff working in a personalised, person-centred manner to meet their relationship, gender, or sexuality needs.
Concerns around safety are also a significant issue for autistic people and a need for more proactive, preventative support to avoid entering unhealthy or abusive relationships, including recognising early warning signs. However, this is not always the case, as funded social care support is typically arranged only after abuse had occurred.
Many of people we talked to underscored the necessity of tailoring support for relationships and sexuality to reflect autistic perspectives, experiences, and preferences. They insisted that any education in this area should be led by autistic individuals or those deeply familiar with autism to avoid imposing neurotypical norms.
I continue to share my research findings, with those that can make a difference to autistic adults' lives. That's why, as part of this year's Neurodiversity Celebration Week, I am holding an accessible research conference in London dedicated to bringing together researchers, academics, autistic individuals and practitioners who work with them together. It’s only through listening to the voices of autistic people that we can really begin to understand their needs and help address inequalities.
Further reading:
The findings of the Autistic Loving study were developed with autistic advisory group into an online training pack, an introduction to social care staff supporting autistic people in this area based on what autistic people wanted them to know, which is freely available to download and use here. There is also an online webinar (freely available) and a resources list.
The National Institute for Health and Care Research (NIHR) Applied Research Collaborations (ARCs) are holding a series of webinars, that explore how health inequity cuts across life stages and places: NIHR ARCs national webinars: Health inequalities.
