Just 37% of local councils have up-to-date autism strategies, and almost half overlook autistic adults’ intimate lives, study finds
A study of local authorities’ autism strategies has revealed that 63% were out of date or did not exist, and almost half failed to mention sex and relationships – an aspect of life that autistic people face social barriers to in our majority neurotypical society.
The study by Manchester Met researchers found that while support for many aspects of autistic people’s life was included, such as work, intimate lives were mostly ignored. Where sex and relationships were mentioned, discussions often focussed on risk management, not support.
Published in the journal Autism in Adulthood, the study analysed all publicly available local autism strategies in England to find out how many mentioned and/or prioritised support for intimate lives.
According to the Autism Act (2009) all 153 councils in England should have an up-to-date local autism strategy – an action plan that outlines how local authorities will support autistic people in their region, enabling them to feel included and live a fulfilling life.
The researchers found that only 106 local authorities had such strategies. They identified and analysed 89 strategies (15 strategies were jointly produced by more than one local authority).
They are urging local policy-makers to recognise and prioritise intimate lives and have used their findings to provide tips for those writing and updating their local autism strategies.
These include recognising and representing intimate lives as part of ordinary life - including it in home, housing and independent living planning - and incorporating it into discussions around transition to adulthood.
Part of the researchers’ study involved interviewing autistic adults about their experiences, with one participant stating: “The predicament around loneliness and intimacy was in retrospect probably about half of my mental health crisis at university.”
Another said: “Certainly no professional ever started a conversation with me about practical support, training etc around intimacy. There seems to be no one available to speak on the subject (of intimacy) in a knowledgeable and practical or non-patronising way.”
Dr Monique Huysamen, Principle Investigator on Manchester Met’s Supporting Autistic Adults’ Intimate Lives (SAAIL), said: “Many autistic people experience greater anxiety and more challenges around intimate relationships because of the social barriers they face in a neuro-normative society that is generally not responsive to autistic people’s needs.
“Health and social care policies and publications must recognise these inequalities and help service systems to reduce them. The fact that most local strategies do not adequately and proportionately recognise autistic people’s intimate lives compared with other aspects of social life feeds into tired stereotypes about autism and sexuality which marginalise and exclude autistic people.”
Manchester Met’s research project Supporting Autistic Adults’ Intimate Lives (SAAIL) provides free online toolkits for autistic adults and the providers who support them, on navigating issues around intimacy and relationships. It includes useful guidance and a tool to help social workers to incorporate conversations about intimate lives into Care Act needs assessments.
Co-researcher on the SAAIL project Bethany Jay added: “We want to see autism-specific intimacy needs addressed and prioritised, and to see a more balanced representation between managing the risks associated with sex and relationships, and the positive responsibility that social care staff have to support people to have an ordinary live, including their intimate life.”
This latest analysis follows a study of national health and social care policies, including the Government’s five-year Autism Strategy to improve all aspects of life for autistic people by 2026. The study found that important issues surrounding sex and relationships were omitted.
With the next National Autism Strategy due to be published in 2026, SAAIL researchers will begin discussions with policy-makers in the hope that intimate lives will be recognised in future national and local autism strategies.
Find out more about the work of Manchester Met’s research group Supporting Autistic Adults’ Intimate Lives (SAAIL) here: Autism Relationships | SAAIL: Supporting Autistic Adults’ Intimate Lives (autlives.com)
The study represents independent research funded by the National Institute for Health and Care Research (NIHR) School for Social Care Research (NIHR SSCR). The views expressed are those of the authors and not necessarily those of the NIHR SSCR, NIHR or Department of Health and Social Care.
