The Foundations of Autistic Flourishing

Pellicano, Liz; Heyworth, Melanie

doi:10.1007/s11920-023-01441-9

Cited by 21 publications

(9 citation statements)

References 90 publications

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“…In line with this perspective, the World Health Organization's International Classification of Functioning, Disability, and Health (ICF) offers a holistic framework, considering social and environmental factors alongside health conditions 11 . This approach supports autistic individuals' participation in society, respecting their neurological differences and supports their voices in guiding the development of policy and services 7,8,12 .…”

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confidence: 90%

“…Calls for a "mind shift" in services for autistic individuals and changes in language or "awareness" have emerged 6 . The needed shift is from focusing on "physical and mental health" to embracing "well-being" and quality of life as the central aspect of Autistic flourishing 7,8,10 . In line with this perspective, the World Health Organization's International Classification of Functioning, Disability, and Health (ICF) offers a holistic framework, considering social and environmental factors alongside health conditions 11 .…”

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confidence: 99%

“…Participants also reported very little preparation for the logistical and functional skills needed to succeed and flourish in their new university setting, leading to feelings of anxiety regarding the unpredictable and unfamiliar environment at the outset of their university experiences 8 . This complexity is further understood through the neurodiversity paradigm, which emphasises an appreciation of differences in neurology 3,4 , preferences 32 , and experience 33 .…”

Section: Research Question 1: Experience Of Transition To Higher Educ...mentioning

confidence: 99%

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A Co-Produced Qualitative Exploration of Autistic Experiences at an Irish Higher Education Institution

Neilson,

O'Kelly,

Doyle

et al. 2024

Preprint

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Background: This co-produced study explores the experiences of autistic students regarding their transition to and enrolment at an Irish Higher Education Institution (HEI). Autistic student's experiences of belonging, acceptance and support were explored, and the study was collaboratively conducted by autistic and non-autistic researchers at all stages of the research. Methods: A sample of autistic student participants (n=14) took part in flexible semi-structured interviews. Results: The findings of this study reveal diverse experiences across the participants in higher education, emphasising the need for inclusive approaches recognising autistic neurology and differences to support belonging and acceptance in university. The transition experiences for some participants were challenging with a lack of personalised and flexible support leading to anxiety and a lack of predictability. Participants also identified a range of challenges and barriers they experienced while navigating college life. These included learning environments they experienced as hostile due to sensory challenges on campus, a lack of understanding regarding autistic neurology among university staff and peers, inconsistency and inflexible pedagogical approaches used by academic staff, and stringent requirements to access disability support services. These barriers often led to students being unable to access support or choosing not to disclose their autistic status. Participants also found socialising and developing relationships with non-autistic peers challenging but reported that autistic student community groups, such as the neurodivergent society, were a very positive factor in supporting well-being, social acceptance and a sense of belonging. Other supports were specialist support staff, such as the Autism-Friendly coordinator and occupational therapist at student services. Discussion: The study highlights the importance of early guidance, systemic integration, and increased awareness among university staff. It underscores the role of structural support systems like DARE and Autism University Support Coordinators in easing transitions and supporting predictability and acceptance.

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confidence: 90%

Section: Insert Figure 1 Herementioning

confidence: 99%

Section: Research Question 1: Experience Of Transition To Higher Educ...mentioning

confidence: 99%

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A Co-Produced Qualitative Exploration of Autistic Experiences at an Irish Higher Education Institution

Neilson,

O'Kelly,

Doyle

et al. 2024

Preprint

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“…Following these concerns, the validity of self-report measures has been questioned, which has led to recommending the use of proxy reports from caregivers or teachers (Mazefsky et al, 2011). These practices have contributed in making the voices of autistic people less important, which have recently been discussed critically (Pellicano & Heyworth, 2023). It is essential to understand how autistic people perceive a good life themselves, rather than what is constructed by others (Lam et al, 2021).…”

Section: Introductionmentioning

confidence: 99%

“I have to charge my social battery”: Perspectives from autistic young adults on Quality of Life

Øverland,

Hauge,

Orm

et al. 2024

Autism

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Several studies report on lower quality of life for autistic people when compared to non-autistic people. However, there are ongoing discussions about the conceptualization of quality of life for the autistic population. This qualitative study investigated self-perceived quality of life in the context of autistic young adults’ everyday lives. Participants (age range 21–29 years) were recruited from a 10-year follow-up study, Lillehammer Neurodevelopmental Follow-up Study, all diagnosed in childhood and adolescence. Fourteen individual in-depth interviews were conducted. When asked about what was important for having a good quality of life, our autistic participants described relationships to people and pets as important, as well as having meaningful activities. Specific interests had guided many to their choice of both academic and work career. Many also described obstacles in their environment that had influenced their quality of life negatively, such as being misunderstood by teachers and other professionals, being bullied, and sensory and emotional overload. Our findings indicate that those in supportive roles should provide help with establishing connections to activities and people/animals, as this seems to be essential for creating a good quality of life. Taking advantage of passions and interests can create opportunities for autistic people. Findings suggest that future research should address the communication barriers between autistic people and professionals that can lead to misunderstandings. Lay abstract In this study we have asked a group of autistic young adults to describe what is important for their quality of life. The 14 participants (aged 21–29 years) were recruited from a 10-year follow-up study of autistic people. During interviews, our participants described the importance of having relationships with family, friends and pets. Having meaningful activities and being able to immerse themselves in particular interests was also reported to be important for a good quality of life. Interests had also guided their choice of what to study and what to do for work. They also spoke of how communication problems with professionals, bullying and sensory and emotional overload could have a negative impact on quality of life. Future interventions should focus on how professionals can help autistic people to connect to people/animals and meaningful activities, as the participants described this as important for having a good quality of life. These findings may be helpful in enhancing how passions and interests can be seen as opportunities for both academic and work careers for autistic people. Future research and interventions should also look at the communication barriers between autistic people and professionals, and how two-way understanding can be improved.

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“… 2. Autism can be understood as ‘a lifelong neurodevelopmental condition’ ( Moseley et al, 2021 , p. 710) as well as a social identity category ( Pellicano & Heyworth, 2023 ). …”

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confidence: 99%

“A perfect storm”: Autistic experiences of menopause and midlife

Brady,

Jenkins,

Gamble-Turner

et al. 2024

Autism

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Previous research indicates that menopause can be an extremely difficult transition for some autistic people. This study asks how autistic people experience menopause and how they can better access services, support and information; autistic Community Research Associates played an important role in each stage of the research. Online focus groups and interviews were conducted with 24 autistic participants who lived in Canada ( n = 13) or the United Kingdom ( n = 11) and had experience with the menopausal transition. Transcripts were coded and analysed by four team members using reflexive thematic analysis. Four themes and eight subthemes were identified: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). Limitations include a potential sample bias towards difficult experiences of menopause. The majority of our sample had a late diagnosis or discovery of autism, and their experiences might not generalize to wider autistic populations. This research may help autistic people prepare for menopause and recognize symptoms earlier. Hearing about the experiences of others may let autistic people who struggle with menopause know they are not alone. Lay abstract Previous studies report that menopause can be a very difficult transition for some autistic people. This study focuses on how autistic people experience menopause and what support and information might help them. Autistic Community Research Associates played an important role in the research and co-authored this article. We held four focus groups and eight interviews online with 24 autistic participants who lived in either Canada ( n = 13) or the United Kingdom ( n = 11). We analysed participant conversations using a method called reflexive thematic analysis. Participants described many intense challenges during menopause. Four themes and eight subthemes were identified across participant groups: (1) Complexity, multiplicity and intensity of symptoms (0 subthemes); (2) Life experience and adversity converging at midlife (three subthemes); (3) The importance of knowledge and connection (two subthemes); and (4) Barriers to support and care (three subthemes). The experiences of our participants may not be the same as other autistic people, and the study could have been more inclusive of diverse autistic groups. However, hearing about the experiences of others may provide reassurance to autistic people who struggle with menopause and let them know they are not alone.

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The Foundations of Autistic Flourishing

Cited by 21 publications

References 90 publications

A Co-Produced Qualitative Exploration of Autistic Experiences at an Irish Higher Education Institution

A Co-Produced Qualitative Exploration of Autistic Experiences at an Irish Higher Education Institution

“I have to charge my social battery”: Perspectives from autistic young adults on Quality of Life

“A perfect storm”: Autistic experiences of menopause and midlife

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