Loneliness in Adults on the Autism Spectrum

EeDawn,; Hwang, Ye In; ReppermundSimone,; SrasuebkulPreeyaporn,; TrollorJulian, N; Foley, Kitty‐Rose; Arnold, Samuel R. C.

doi:10.1089/aut.2018.0038

Cited by 68 publications

(81 citation statements)

References 35 publications

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“…Advisors frequently assist in furthering the promotion of the study and outputs via social media. Our recent study on loneliness,60 included in the latest study newsletter, was a topic originally identified by advisors in time 1 data gathering, and demonstrates the inclusive approach used in the ALSAA. Advisors have been approached to assist with autism-related media enquiries and will continue to do so when opportunities arise.…”

Section: Cohort Descriptionsmentioning

confidence: 99%

“…There were high numbers of recruitment responses across the four time 1 survey populations (autistic and control adult self-report, informant report on autistic adults, carer self-report). The ALSAA time 1 data have been used in several studies of psychotropic medication use,75 leisure participation,76 ageing well, 77 loneliness60 and employment 78. ALSAA and SASLA pooled data have been used to explore cognitive reappraisal,79 suicidal ideation,80 psychometric scale validation,64 and anxiety and depression 81.…”

Section: Findings To Datementioning

confidence: 99%

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Cohort profile: the Australian Longitudinal Study of Adults with Autism (ALSAA)

et al. 2019

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PurposeThere is a significant knowledge gap regarding the lives of adults on the autism spectrum. Some literature suggests significant health and mental health inequalities for autistic adults, yet there is a lack of comprehensive longitudinal studies exploring risk factors. Further, most research does not include the perspective of autistic adults in its conduct or design. Here, we describe the baseline characteristics and inclusive research approach of a nationwide longitudinal study.ParticipantsThe Autism Cooperative Research Centre for Living with Autism’s Australian Longitudinal Study of Adults with Autism (ALSAA) is a questionnaire-based longitudinal study of autistic adults (25+ years old) with follow-up at 2-year intervals. Autistic advisors were involved in each stage of research apart from data analysis. Three questionnaires were developed: self-report, informant report (ie, proxy report) and carers (ie, carer experiences and characteristics).Findings to dateAn inclusive research protocol was developed and agreed with autistic advisors. Baseline data were collected from 295 autistic adults (M=41.8 years, SD=12.0) including 42 informant responses, 146 comparison participants and 102 carers. The majority of autistic participants (90%) had been diagnosed in adulthood (M=35.3 years, SD=15.1). When compared with controls, autistic adults scored higher on self-report measures of current depression and anxiety. Participant comments informed ongoing data gathering. Participants commented on questionnaire length, difficulty with literal interpretation of forced response items and expressed gratitude for research in this area.Future plansA large comprehensive dataset relating to autistic adults and their carers has been gathered, creating a good platform for longitudinal follow-up repeat surveys and collaborative research. Several outputs are in development, with focus on health service barriers and usage, caregivers, impact of diagnosis in adulthood, further scale validations, longitudinal analyses of loneliness, suicidal ideation, mental illness risk factors and other areas. Baseline data confirm poorer mental health of autistic adults. The ALSAA demonstrates a working approach to inclusive research.

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Section: Cohort Descriptionsmentioning

confidence: 99%

Section: Findings To Datementioning

confidence: 99%

Cohort profile: the Australian Longitudinal Study of Adults with Autism (ALSAA)

et al. 2019

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“…Third, some autistic people say they do not feel a need to socialize, or have negative perceptions of socializing based on past experiences (such as having been bullied), or may socialize in ways that others do not recognize or understand; therefore, frequency of socialization may not identify what is important and infrequent social engagement may not necessarily be experienced as lower QoL. 13,14 Finally, in terms of experiences, autistic adults are often unemployed or underemployed for their abilities and qualifications 15,16 ; those in employment have benefits from an income and status, but nevertheless the cost may be high in terms of coping with external demands, social anxiety, and other stressors. 17 Such complexities are not explored in traditional QoL measures.…”

Section: Introductionmentioning

confidence: 99%

What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries

McConachie

Wilson²,

Mason

et al. 2020

Autism in Adulthood

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Relevant and valid measurement is crucial in determining whether interventions and supports have improved the quality of life (QoL) of autistic people. However, it is possible that researchers' and services' use of general population QoL tools may overlook issues of specific importance. To advance methodology, we conducted a preliminary exploration of the need and basis for cross-cultural development of additional autism-specific QoL questions. Nine consultation groups with autistic adults (n = 38) were held in Argentina, Australia, Singapore, and the United Kingdom to examine the items of the World Health Organization QoL questionnaire (WHOQOL-BREF) and the WHOQOL Disabilities add-on module. Each group discussion was transcribed and analyzed thematically to identify missing issues and nuances of particular significance to autistic people. Themes seen as important and particularly relevant to QoL of autistic people included a positive autistic identity, other people's lack of understanding of autism, sensory issues, and autistic people's contributions to society. There were notable similarities across sites indicating that creation of cross-cultural autism-specific items is likely to be possible; the themes identified could inform the focus of items for measurement of QoL. This project represents an initial step toward fuller international consultation, and subsequent development of an autism-specific module for addition to the core WHOQOL model.

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“…However, a closer investigation highlights a number of factors that may underpin anthropomorphism in autistic individuals. For example, increased levels of loneliness QUALITATIVE INVESTIGATION OF ANTHROPOMORPHISM have been reported by individuals on the autistic spectrum compared with nonautistic individuals, [14][15][16] and intolerance of uncertainty has been suggested as a significant construct in autism. [17][18][19] Both these issues have been linked to the attribution of human characteristics to nonhuman agents: research by Epley et al 12 suggested that in nonautistic adults there is an increased tendency to anthropomorphize among those who feel socially isolated or experience a desire for control and predictability.…”

Section: Introductionmentioning

confidence: 99%

A Friendly Article: The Qualitative Investigation of Anthropomorphism in Autistic and Nonautistic Adults

Negri¹,

White

Remington³

2019

Autism in Adulthood

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Background: Anthropomorphism is the attribution of human characteristics to nonhuman agents. This common tendency is thought to be driven by a heightened motivation for social connection and may therefore be expected to be reduced in autistic individuals given that this group has been claimed to demonstrate reduced social motivation in some settings. However, the subject of anthropomorphism in autism has not been studied extensively, and online forums, autobiographical accounts, and recent research on the topic suggest that, contrary to this expectation, anthropomorphism is commonly experienced by autistic individuals. Methods: We conducted semi-structured interviews with eight autistic and eight nonautistic adults, all who reported a tendency to anthropomorphize. We recorded, transcribed, and analyzed the interviews according to the thematic analysis framework with the objective of identifying similarities and differences in the lived experiences of anthropomorphism in autistic and nonautistic individuals. Results: Individuals in both groups described anthropomorphism as comforting, promoting a sense of safety and friendship with, and feelings of empathy and sympathy toward, nonhuman agents. Autistic individuals stressed the important role anthropomorphized agents played in their life, particularly when growing up: easing loneliness and helping develop an understanding of emotions and relationships. Participants also expressed negative aspects of the phenomenon, with both autistic and nonautistic individuals worrying about anthropomorphized agents' feelings and well-being. For some individuals, such thoughts and feelings caused distress and were experienced as intrusive due to their involuntary nature. Conclusions: Autistic and nonautistic adults showed very similar anthropomorphic patterns. Although preliminary in nature, our findings highlight characteristics of anthropomorphic experiences for autistic and nonautistic individuals, furthering our understanding of individual differences in social cognition. By illustrating the important role nonhuman agents may play in the lives of autistic individuals, our findings may also guide future research and practice.

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Loneliness in Adults on the Autism Spectrum

Cited by 68 publications

References 35 publications

Cohort profile: the Australian Longitudinal Study of Adults with Autism (ALSAA)

Cohort profile: the Australian Longitudinal Study of Adults with Autism (ALSAA)

What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries

A Friendly Article: The Qualitative Investigation of Anthropomorphism in Autistic and Nonautistic Adults

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