A qualitative interview study on quality of life and ageing experiences of autistic adults

The study addresses how autistic adults define and experience quality of life (QoL) as they age, responding to gaps in research that has historically focused on children and young adults and employed deficit-based models and generic QoL measures. Grounded in the neurodiversity paradigm and the social model of disability, the work reframes 'successful' adult development beyond neurotypical norms and objective outcomes (e.g., independent living, employment) to subjective QoL. Prior research indicates autistic adults often report lower QoL than non-autistic groups and face elevated risks (e.g., premature mortality, suicidality). Few studies have centered older adults or considered lifespan changes in priorities, despite gerontological evidence that goals and social networks shift with age. The authors therefore seek autistic adults’ own conceptualizations of QoL in later life without constraining discussions to generic QoL instruments.

The paper reviews QoL research showing lower QoL among autistic adults relative to neurotypical peers and other neurodivergent groups, with mental health (anxiety, depression) negatively associated and social support positively associated with QoL. Prior work frequently relies on generic measures (e.g., WHOQOL-BREF) that may omit autism-relevant domains. Collaborative efforts (e.g., McConachie et al.) have added autism-specific items (ASQoL) addressing identity, sensory issues, friendships, and service access, yet gaps remain; qualitative work has identified additional autism-specific themes still missing from standard tools. Many studies combine late adolescents with older adults, obscuring potential age-related shifts in QoL priorities. Gerontological theories (e.g., socioemotional selectivity, selective optimization and compensation) suggest goals and capacities change with age, motivating age-sensitive, autism-informed QoL conceptualizations.

Design: Qualitative study using semi-structured, open-ended interviews exploring ageing and QoL (e.g., enjoyable and challenging aspects of ageing, contributors/detractors to QoL, changes over time and expectations for the future). The interview guide was pre-shared with participants and is available online. Sample and recruitment: Autistic adults aged 40+ with self-reported clinical diagnosis, residing in the UK or Luxembourg. Recruitment via social media, diagnostic service, personal contacts (UK) and an autism organization (Luxembourg). N=16 (UK n=9; Luxembourg n=7). Three additional individuals consented but did not complete (ineligible n=1; too busy n=1; no response n=1). Demographics (self-reported): UK mean age 51.22 (SD 7.89; range 42–63), Luxembourg mean age 54 (SD 6.35; range 48–67); gender across sites included men, women, and non-binary participants; varied employment and household compositions. Procedures: Autism-friendly research practices were followed (advance materials, interviewer bios, multiple modalities, accessible settings, option for breaks). Interviews conducted Aug 2023–Jan 2024 by video (n=11), phone (n=2), or in-person (n=3). Duration: 40 to 108 minutes (M ≈ 66 minutes). Languages: UK interviews in English; Luxembourg interviews in Luxembourgish (n=3), English (n=3), French (n=1); German offered but not chosen. A bilingual assistant conducted French/Luxembourgish interviews; interviewers coordinated to ensure consistency. Analysis: Audio transcribed verbatim (NVivo 14). Reflexive thematic analysis with a critical realist lens: inductive, largely semantic coding, iterative clustering of codes into themes, and team review/refinement. The authors provide a positionality statement (alignment with neurodiversity paradigm; mix of non-autistic and autistic-informed researchers). Five final themes were generated.

Participants described both positive (accumulated knowledge, wisdom, self-knowledge) and negative (physical and cognitive decline) aspects of ageing. Five themes contributing to QoL emerged:

1. Diagnosis is pivotal: Late diagnosis (all after 40; latest at 64) was often transformational, facilitating self-understanding, self-advocacy, reduced masking, and alleviation of shame. Some experienced a challenging integration process, grief for 'missed years', and persistent ambivalence or internalized stigma.
2. Connection with others: managing the social battery: Social connection is important but socially taxing; recovery time is essential. Partners often serve as key, stabilizing relationships; children bring joy and demands; friendships are limited for many; valued connections also occur via acquaintances with shared interests and the workplace. Retirement may reduce workplace-based social contact. Fear of isolation, especially after partner loss, is salient.
3. Autonomy over space and time: creating optimal environments: Control over sensory environments (home and work), time alone for interests/special passions, and predictability/routine are central to QoL. Work aligned with interests and autonomy enhances QoL; poor person–environment fit harms QoL. Ageing-related concerns include losing autonomy in care homes (perceived as sensory overload, forced socializing, loss of control).
4. 'Paperwork of life': systemic barriers to QoL: Administrative demands (forms, insurance, contractors) are overwhelming, leading to avoidance and downstream impacts (e.g., delayed home repairs, healthcare). Reliance on partners/family for admin support raises worries about future independence. UK participants highlighted healthcare barriers (sensory overload, difficulty recognizing illness, traumatic experiences), potentially leading to under- or delayed care.
5. Vulnerability: discrimination, harassment, and bullying: Participants encounter stereotypes and stigma (e.g., misconceptions about marriage/parenting, 'Rain Man' tropes), discouraging disclosure and sometimes leading to overt discrimination at work and in daily life. Many reported victimization (verbal/sexual harassment) and heightened vulnerability when alone. Societal change is needed to move from awareness to acceptance.

Findings show autistic adults’ QoL in later life is shaped by diagnosis-related identity processes, nuanced forms of social connection, autonomy over environments and time, systemic administrative and healthcare barriers, and experiences of stigma and victimization. These address the research question by articulating autism-specific, age-relevant determinants of QoL beyond intra-individual deficits, aligning with the neurodiversity paradigm. Implications include the importance of adult and late-life diagnosis and post-diagnostic support to foster self-acceptance (linked to better mental health), need for measures capturing varied social ties beyond close relationships, and supports to prevent isolation after key life events (e.g., partner loss). Workplace findings underscore person–environment fit, disclosure risks/benefits, and the necessity of employer-level education and accommodations. Administrative burden and healthcare barriers highlight how executive demands, sensory environments, and system design can erode QoL, with cross-system comparisons (e.g., differences noted between UK and Luxembourg experiences) warranted. Applying minority stress and intersectional frameworks can elucidate cumulative impacts of stigma, ageism, and autism-related stressors on mental health.

This study identifies autism-specific factors underlying QoL in middle and later adulthood and shows how ageing and autism intersect to affect QoL positively (e.g., self-knowledge, reduced masking) and negatively (e.g., healthcare barriers, administrative burden, discrimination). The work argues for QoL measures co-developed with autistic adults that capture nuanced social connection, autonomy over environments/time, administrative challenges, and experiences of stigma. Future directions include longitudinal lifespan research to chart changing QoL determinants, cross-cultural studies of healthcare and late-life services (e.g., residential care), and co-designed interventions and systemic reforms that reduce administrative burden, enhance accessibility and acceptance, and support sustained social connection and autonomy.

Potential sampling bias due to differing recruitment strategies (UK social media/diagnostic service/personal networks; Luxembourg autism organization). Lack of data on ethnicity and socio-economic status limits characterization of the sample. Exclusion of self-diagnosed adults narrows perspectives; no participants with a learning disability were included. Small qualitative sample (N=16) limited subgroup analyses by age, gender, or occupation; lower age cutoff was 40 (not 50), and the oldest participant was 67, so findings may not generalize to older-old adults. Two interviewers and multiple languages/modalities may have introduced subtle procedural differences. Researcher positionality and theoretical stances may have influenced interpretation; greater involvement of autistic researchers in instrument design and analysis is recommended.