A critical overview of how English health and social care publications represent autistic adults’ intimate lives

Abstract

Autistic people face more social barriers to, and experience greater anxiety around, intimate relationships than the general population in our majority neurotypical society, leading to increased loneliness and social isolation. National health and social care policies and publications should recognise these inequalities and guide service systems in reducing them. In this paper, we employ a document analysis design to analyse a cross-section of English national health and social care publications to investigate how autistic adults’ intimate lives are represented and prioritised in these publications. Most publications do not adequately and proportionally recognise or prioritise autistic people's intimate lives. They focus on the risks associated with sex and relationships and overlook autism-specific intimacy needs. They prioritise participation in the workforce while renouncing government responsibility for supporting intimate relationships which can reduce loneliness and alienation. We offer recommendations to ensure that health and social care publication processes better recognise intimate lives.

No “cookie cutter rules”: best practice for social care staff in supporting autistic adults with relationships and sexuality

“…A limited number of organisations, mainly within the social care or charitable sector, currently provide education and support with relationships and sexuality for autistic individuals, with hardly any statutory sector provision. Social care staff in England who support autistic adults with sexuality and relationships generally lack sufficient training (Bates et al, 2020), confirmed by a subsequent study (Huysamen et al, 2022). Our participants expressed a strong need for relationships and sexuality support and proposed its inclusion in UK social care assessments, even if immediate assistance is not required.…”

“…Participants emphasised the distinctiveness of their needs as autistic people without co-existing learning disabilities and resented being described as "people with learning disabilities and/or autism" which commonly happens in the social care literature (Huysamen et al, 2022). The support participants wanted mirrored the CCF guidance, co-developed with autistic people (Skills for Health, 2019), which is seldom integrated into social care commissioning.…”

“…In the Care and Support (Eligibility Criteria) Regulations (2014) for England's Care Act (2014), "developing and maintaining personal relationships" is an eligible support need in social care assessments, alongside assistance with daily tasks, personal care and independent living. However, HM Government (2021) overlooks relationships and sexuality, despite autistic people raising these in consultations (Huysamen et al, 2022). A systematic review (Huysamen et al, 2022) reveals that almost all health and social care publications ignore autistic adults' relationship and sexuality needs.…”

“…However, HM Government (2021) overlooks relationships and sexuality, despite autistic people raising these in consultations (Huysamen et al, 2022). A systematic review (Huysamen et al, 2022) reveals that almost all health and social care publications ignore autistic adults' relationship and sexuality needs. The Core Capabilities Framework (CCF) (Skills for Health, 2019), co-produced with autistic people, is the sole exception, but this is underused, perhaps because it is not embedded in mandatory staff social care training in England.…”

“…, 2022). A systematic review (Huysamen et al. , 2022) reveals that almost all health and social care publications ignore autistic adults’ relationship and sexuality needs.…”