Literature on Older Autistic Adults

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families.  The struggles of autistic adults have not received enough scholarly attention.

Nicholas, D.B., Nelson, H., Shafai, F. et al. Examining the Lived Experiences of Older Autistic Adults: A Synthesis Review of Qualitative Literature. J Autism Dev Disord (2026). https://doi.org/10.1007/s10803-026-07343-y

This review reflects literature published from 2013 to 2024, with a focus on aging, older adulthood and autism. Themes in this literature addressed ways of being and sense of self (Hickey et al., 2018; Hwang et al., 2017; Moseley et al., 2020), relationship with others (Hickey et al., 2018; Mason et al., 2019; Hwang et al., 2017, 2023), pathways to meaning and enjoyment (Hickey et al., 2018; Hwang et al., 2017, 2023; Mason et al., 2019; Moseley et al., 2020; Waldron et al., 2022), and daily life at home or in the community (Hickey et al., 2018; Hwang et al., 2017, 2023; Mason et al., 2019; Moseley et al., 2020; Waldron et al., 2022). Notably, positive experiences and outcomes generally related to personal experience and meaning-making, whereas negative outcomes consistently were associated with healthcare challenges and service gaps.

The literature highlighted gaps in services and service provider knowledge about aging with autism (Barber, 2015; Heijnen-Kohl et al., 2022; Mansour et al., 2024; Moseley et al., 2020). Stigma and bias were noted to result in negative experiences with healthcare professionals (Mansour et al., 2024; Moseley et al., 2020), barriers to accessing supports (Moseley et al., 2020) and reduced individualized service provision (Hwang et al., 2023). Inaccurate diagnoses negatively impacted treatment plans and eligibility for needed services (Mansour et al., 2024), resulting in an overall dearth of systemic support (Barber, 2015; Hwang et al., 2017; Mansour et al., 2024; Moseley et al., 2020).

Reflecting on such gaps, improved support across the lifespan was strongly recommended, including the need to cultivate greater trust among autistic people in their healthcare providers, based on findings that earlier experiences influence later engagement and trust (Moseley et al., 2020). Training for service and healthcare providers was advocated (Trollor et al., 2022), with attention to processes of aging, autism and the experiences of older autistic adults (Barber, 2015; Heijnen-Kohl et al., 2022; Moseley et al., 2020).