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

Quality of life (QoL) across the lifespan is a key research priority for the autism community. However, relatively little is known about the QoL and ageing experiences of older autistic adults. Most existing research uses generic QoL measures, potentially failing to capture the unique experiences of autistic individuals. This research gap is significant given the increasing number of adults receiving late-life diagnoses of autism—the 'lost generation'. Understanding how autistic adults experience and define QoL as they age is crucial for improving support and interventions. Historically, the medical model of disability dominated autism research, framing autism as a series of deficits. This perspective often focused on comparing autistic adults against neurotypical benchmarks, frequently deeming autistic individuals to have achieved 'poor outcomes' in areas like independent living and employment. The neurodiversity paradigm provides a contrasting strengths-based approach, recognizing autism as a natural form of human diversity and emphasizing the disabling nature of societal structures. This shift in perspective has led to a greater focus on subjective QoL measures, which acknowledge the individual's perception of their position in life. While research now emphasizes subjective QoL, findings remain concerning, with studies reporting lower QoL in autistic individuals compared to neurotypical groups and those with other neurodivergent conditions. Moreover, the existing literature lacks studies focusing specifically on older autistic adults or longitudinal changes across the lifespan. This study addresses these gaps by employing open-ended interviews to understand the perspectives of older autistic adults on QoL in the context of ageing.

Existing research on quality of life (QoL) in autistic adults has largely relied on generic measures, such as the WHOQOL-BREF and its disability module, which may not adequately capture autism-specific experiences. Although studies have reported lower QoL scores in autistic adults compared to neurotypical peers and individuals with other neurodivergent conditions, these findings often lack a specific focus on older adults or changes across the lifespan. Recent efforts have aimed to address this limitation by developing autism-specific QoL measures, incorporating items related to autistic identity, sensory overload, and access to services. However, the use of generic measures as a starting point may have limited the scope of these studies. Furthermore, most QoL studies group participants across a wide age range, overlooking the potential for changes in priorities and definitions of QoL with age. Gerontology literature reveals demonstrable shifts in priorities as people age, influenced by perceptions of remaining lifespan and changes in external circumstances. Therefore, a dedicated study focusing on older autistic adults' experiences and perspectives on QoL is crucial for a comprehensive understanding.

This qualitative study recruited 16 autistic adults aged 40+ from the UK and Luxembourg, utilizing a combination of social media, diagnostic services, personal contacts, and an autism organization to reach participants. The inclusion criteria were a self-reported clinical diagnosis of autism and residence in the UK or Luxembourg. Participants provided informed consent and took part in semi-structured interviews, conducted between August 2023 and January 2024. Interviews were conducted via video conferencing, phone, and in-person, with a duration ranging from 40 minutes to 1 hour and 48 minutes. The interviews were conducted in English, French, and Luxembourgish, with all English interviews conducted by the first author and the other languages conducted by a bilingual research assistant. To ensure consistency across languages, the interviewers practiced questions together. All interviews were transcribed verbatim and analyzed using reflexive thematic analysis, which acknowledges the researcher's subjectivity and role in interpreting the data. The researchers adhered to the 'Autismus-Forschungs-Kooperation' autism-friendly research guidelines, providing participants with detailed information, advanced interview questions, and considering potential accessibility needs. The study incorporated a positionality statement to explicitly acknowledge the researchers' backgrounds and potential biases, aligning with a neurodiversity paradigm and employing identity-first language ('autistic'). The analysis involved familiarization with the data, line-by-line coding using an inductive approach, and iterative grouping of codes into themes. The finalized five themes were determined through a collaborative review process among all authors.

The study identified five key themes that contribute to the quality of life (QoL) of autistic adults as they age: 1. **Diagnosis is pivotal:** Receiving an autism diagnosis, often later in life, proved transformative for participants. It led to increased self-understanding, self-acceptance, and the ability to advocate for their needs. While the diagnosis brought about a positive reframing of past experiences and reduced masking, some participants experienced a sense of loss and regret for missed opportunities. The integration of a new autistic identity was a process that sometimes required additional support and self-reflection. 2. **Connection with others:** Maintaining social connections was vital to QoL, though its manifestation varied widely. While immediate family members, particularly partners, were crucial sources of support and understanding, other connections were found through work, friendships (which proved challenging to make and maintain for many), and regular interactions with acquaintances through shared interests. The finite nature of social energy was consistently acknowledged, emphasizing the need for recovery time after social interactions. The fear of isolation, especially after the loss of a partner, was a prominent concern among the participants. 3. **Autonomy over space and time:** Autonomy and control over physical environments were crucial for QoL. This encompassed the ability to regulate sensory input, create personalized spaces, and manage time effectively through routine and predictability. The importance of time for personal interests, alongside the difficulties associated with unpredictable situations and the negative impact of unfulfilling work, were highlighted. The prospect of losing autonomy in a care home was deeply concerning. 4. **'Paperwork of life':** The burden of administrative tasks, such as filling out forms and navigating bureaucratic systems, significantly detracted from QoL. Many participants relied on informal support for such tasks and expressed concerns about their ability to cope with these challenges in the future without the assistance of family or partners. In the UK sample, particularly, this extended to significant difficulties accessing healthcare services, including the challenges of self-identifying illness and sensory overload in healthcare settings. 5. **Vulnerability:** Participants frequently experienced stigma, stereotypes, and discrimination related to autism, often resulting in a reluctance to disclose their diagnosis. Experiences of bullying and harassment were also common. Many participants had internalized negative stereotypes, which delayed their diagnosis. This vulnerability was further exacerbated by a lack of societal understanding and acceptance of autistic people.

This study confirms previous findings on the importance of diagnosis in enhancing self-understanding and acceptance among autistic adults, highlighting the long-term impact of late diagnosis and the need for comprehensive post-diagnostic support. The multifaceted nature of social connections revealed in this research underscores the need for a more nuanced approach to measuring social QoL, going beyond the typical focus on close relationships and considering a wider spectrum of social interactions. The study emphasizes the importance of autonomy and control over physical environments, particularly within the workplace, as well as the significant challenges presented by administrative tasks and systemic barriers to accessing healthcare services. The pervasive nature of stigma, stereotypes, and discrimination necessitates further intervention and education to create more inclusive environments for autistic individuals. The findings emphasize the importance of considering both individual and systemic factors in addressing the challenges faced by autistic adults in maintaining a high QoL as they age.

This study provides valuable insights into the autism-specific aspects of QoL among older autistic adults, revealing the interplay between ageing and autism's impact on well-being. It emphasizes the urgent need for more inclusive QoL measures, longitudinal research on lifespan changes in QoL, and concerted efforts to address systemic barriers and societal attitudes that negatively affect the QoL of autistic individuals. Future research should focus on designing interventions that support autistic adults throughout their lives in achieving and maintaining a high QoL, defined by their own terms.

Several limitations should be acknowledged. The differing recruitment strategies in the UK and Luxembourg may have introduced sampling bias, and the sample size was relatively small, limiting further differentiation based on age, gender, or occupation. The lower age limit of 40 years and the absence of participants older than 67 may not fully capture the experiences of older autistic adults. Further, differences in interviewer style and potential researcher bias, as acknowledged in the positionality statement, could have influenced the data interpretation. The exclusion of autistic adults with learning disabilities and the lack of data on ethnicity and socioeconomic status are additional limitations.