Experiences of Performing Daily Activities in Middle-Aged and Older Autistic Adults: A Qualitative Study

Hwang, Ye In; Foley, Kitty‐Rose; Elley, Kieran; Brown, Scott Andrew; Joy-Leong, Dawn; Li, Xue; Grove, Rachel; Trollor, Julian N.; Pellicano, Elizabeth; Zheng, Lidan

doi:10.1007/s10803-022-05473-7

Cited by 6 publications

(5 citation statements)

References 36 publications

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“…[62][63][64] Yet, support during this period may be particularly pertinent for autistic retirees given autistic people's preference for predictability and routine. 38 Indeed, some participants in this study suggested the vastness of change during retirement was in direct conflict with their preference for predictability. As such, tailored support for autistic retirees may be warranted.…”

Section: Discussionmentioning

confidence: 78%

“…Such disruption is in direct conflict with the preference for predictability and routine that many autistic people report. 38 Second, autistic people can experience difficulties with executive function, including planning and organizing, 39 which may make planning for retirement especially challenging. 40 Third, half of autistic people are considered as having 'poor' outcomes when using traditional markers of success, defined by non-autistic people, such as having competitive employment, having friends and romantic relationships and living independently.…”

Section: "Retirement Is One Hell Of a Change": Autistic People's Expe...mentioning

confidence: 99%

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“Retirement Is One Hell of a Change”: Autistic People's Experiences of Retiring

Davies,

Matthews,

Romualdez

et al. 2024

Autism in Adulthood

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Background: Limited research has examined autistic people's experiences of aging.While the significance of retirement in the context of aging has been highlighted by autistic people themselves, there is a dearth of research in this regard, with only one study focusing on the retirement experiences of one autistic man. Methods:In this study, we conducted semi-structured interviews with eight older autistic people (mean age = 63 years, range = 56 -70 years) who had retired or semi-retired in the last 10 years, and four who were planning to retire in the next five years. We aimed to generate some of the first insights regarding autistic people's retirement experiences. We analyzed the data using reflexive thematic analysis.Results: Experiences were diverse. Challenges in retirement planning and adjustment were reported by some, while others viewed retirement as a positive respite from challenging work environments. The availability of more leisure time was appreciated by some, while others encountered ongoing responsibilities and obstacles hindering desired activities. A common theme was the inadequate support available for autistic people during retirement. Concerns about the aging process, including concerns about health decline and the possibility of entering residential care, were also common. Conclusion:Future research should examine the suitability of residential care for older autistic adults, consider alternative autistic-led group living arrangements, and explore avenues for improved support during and after the retirement transition.

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Section: Discussionmentioning

confidence: 78%

Section: "Retirement Is One Hell Of a Change": Autistic People's Expe...mentioning

confidence: 99%

“Retirement Is One Hell of a Change”: Autistic People's Experiences of Retiring

Davies,

Matthews,

Romualdez

et al. 2024

Autism in Adulthood

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“…42 The previous literature on ADLs and IADLs has focused on teaching skills to young autistic people, or the experiences of older autistic adults. 44 However, our research highlighted that these challenges are important to consider for autistic women and gender diverse people across the lifespan. Interestingly, the difficulties reported by our sample were not necessarily related to the capability of completing these tasks, but instead to the overwhelming nature of all the competing tasks that needed to be completed, and the associated stress and anxiety related to this.…”

Section: Discussionmentioning

confidence: 92%

“…43 A recent study asked older autistic adults about their IADLs, highlighting that these were impacted not only by individual factors, such as sensory sensitivity and executive function, but also influenced by environmental and cultural factors. 44 There is no research to date that seeks to understand the impact of managing these daily living skills on health and wellbeing. This is particularly important for autistic women and gender diverse people, as gender roles and expectations result in additional pressure to take responsibility for, and engage in these tasks.…”

Section: Introductionmentioning

confidence: 99%

‘Living in a world that’s not about us’: The impact of everyday life on the health and wellbeing of autistic women and gender diverse people

Grove,

Clapham,

Moodie

et al. 2023

Womens Health (Lond Engl)

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Background: Autistic women and gender diverse people have specific needs related to their physical and mental health. They also experience more barriers to accessing services. While there are autobiographical accounts of the ‘invisible’ challenges that autistic women and gender diverse people face day-to-day, there has been limited research that explores how these experiences impact health and wellbeing. Objectives: This study aimed to understand the everyday experiences of autistic women and gender diverse people, and their impact on health and wellbeing. Design: Qualitative methods were used to elicit rich information about the unique experiences of autistic women and gender diverse people. Methods: We conducted semi-structured interviews with 31 autistic adults. The data were analysed using reflexive thematic analysis. Results: We identified 3 themes and 10 subthemes. Our first theme described ‘all the stuff that you have to do to get through life’, including managing domestic tasks, parenting, unique health needs and co-occurring physical conditions. The second theme outlined the impact of ‘living in a world that’s not about us’, describing how navigating the neurotypical world, managing gender role expectations and trying to fit impacts on mental health. Our third theme outlined the positive impacts of ‘shedding all the layers and being myself’, including the importance of formal identification, exploring autistic identity and community, and including autistic people in research to support them to ‘have a good life on their own terms’. Conclusion: This study emphasized the importance of shifting the responsibility of health and wellbeing from the individual, and the importance of interpersonal, community, cultural, policy and societal factors in ensuring positive health outcomes for autistic women and gender diverse people. It also highlighted areas that enable autistic women and gender diverse people to flourish, including autistic community connectedness, positive relationships and autistic-affirming support from health professionals.

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“…If falls risk is indeed higher in autistic people, this could be addressed with appropriate strength and balance exercise therapy [90]. Finally, as noted by our participants, activities of daily living are likely to require assessment and support across all ages but particularly in older adults [91].…”

Section: Plos Onementioning

confidence: 92%

From “one big clumsy mess” to “a fundamental part of my character.” Autistic adults’ experiences of motor coordination

et al. 2023

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Altered motor coordination is common in autistic individuals affecting a range of movements such as manual dexterity, eye-hand coordination, balance and gait. However, motor coordination is not routinely assessed leading to undiagnosed and untreated motor coordination difficulties, particularly in adults. Few studies have investigated motor coordination difficulties and their impact from the viewpoint of autistic people. Therefore, the current study used FGs and thematic analysis to document the experience of motor coordination difficulties from the viewpoint of 17 autistic adults. Four main themes were identified. First, motor coordination difficulties were pervasive and variable, being present life-long and within multiple movements and affecting many aspects of life. Furthermore, the nature of the difficulties was variable within and between participants along with differing awareness of coordination ability. Second, participants described motor coordination as an active process, requiring concentration for most actions and at a level seemingly greater than other people. Third, motor coordination difficulties impacted upon social and emotional wellbeing by placing strain on relationships, prompting bullying and exclusion, putting safety at risk and causing a range of negative emotions. Fourth, in the absence of any support, participants described multiple learning and coping strategies. Findings highlight how it is essential to address the current lack of support for motor coordination considering the significant social and emotional consequences described by our participants. Further investigation of motor learning and interactions between sensory and motor performance in autistic adults is also warranted.

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Experiences of Performing Daily Activities in Middle-Aged and Older Autistic Adults: A Qualitative Study

Cited by 6 publications

References 36 publications

“Retirement Is One Hell of a Change”: Autistic People's Experiences of Retiring

“Retirement Is One Hell of a Change”: Autistic People's Experiences of Retiring

‘Living in a world that’s not about us’: The impact of everyday life on the health and wellbeing of autistic women and gender diverse people

From “one big clumsy mess” to “a fundamental part of my character.” Autistic adults’ experiences of motor coordination

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