Understanding the Self-identification of Autism in Adults: a Scoping Review

Overton, Gayle L.; Marsà-Sambola, Ferran; Martin, Rachael; Cavenagh, Penny

doi:10.1007/s40489-023-00361-x

Cited by 11 publications

(5 citation statements)

References 53 publications

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“…On the other hand, people who had a diagnosis and people who self-identiĄed as autistic did not differ in their mean total scale scores or in all but two subscale scores. These Ąndings replicate the original CATI validation study and they are in line with a recent scoping review that identiĄed various studies in which results from adults who self-identiĄed as autistic and adults with a formal diagnosis were very similar (109). Although, self-identifying autistic individuals have been traditionally excluded from research, including these individuals in the future may lead to increased sample sizes that a more representative of the heterogeneous autistic community.…”

Section: Convergent Validity Evidencesupporting

confidence: 80%

"What does 'often' even mean?" Revising and Validating the Comprehensive Autistic Trait Inventory in Partnership with Autistic People

Hechler,

Tuomainen,

Weber

et al. 2024

Preprint

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Background: In this study, we revised and validated the Comprehensive Autistic Trait Inventory (CATI) – a self-report inventory of autistic traits, in collaboration with autistic people. An established strength of the CATI is its ability to capture female autistic traits. Our project aimed to extend this further, to increase the inventory's accessibility, and to minimise stigma induced by deficit-based representations of autistic experience. Methods: Together with 22 individuals from the autism and autistic communities, we created the Revised Comprehensive Autistic Trait Inventory (CATI-R). Revisions included rewording items to increase clarity or reduce stigma and expanding items to capture diverse autistic experiences. Based on the revisions, we formulated a series of guidelines for developing personality-style self-report inventories of subclinical traits concerning neurodevelopmental and psychiatric divergences. The CATI-R was then validated across a large sample (n = 1439), comprising autistic (n = 375) and non-autistic participants (n = 1046), following the protocol for the original CATI. Results: We conceptually replicated the original CATI validation. A confirmatory factor analysis supported the six-subscale structure. Pearson correlations showed positive relationships between all subscales. Moreover, comparing the CATI-R with two contemporary inventories of autistic traits, we found evidence for the CATI-R's convergent validity and its ability to classify individuals as autistic or not. A measurement invariance analysis indicated that total-scale scores can be compared across genders. However, in line with current research on gender differences in autism, a repeated measures ANOVA showed subscale-specific gender differences. Accordingly, we identified different thresholds for classifying female, male, and non-binary people. Finally, a logistic regression analysis suggested that the CATI-R predicts autism particularly well in female and non-binary people. Limitations: Our study presents only initial evidence for the validity of the CATI-R that should be enriched with further analyses and types of data, including, a larger number of non-binary participants. Conclusions: This project holds significance for both research and clinical practice as it provides a trait inventory that resonates with actual autistic experience and insights for creating inventories that are sensitive, accessible, and non-stigmatising.

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Section: Convergent Validity Evidencesupporting

confidence: 80%

"What does 'often' even mean?" Revising and Validating the Comprehensive Autistic Trait Inventory in Partnership with Autistic People

Hechler,

Tuomainen,

Weber

et al. 2024

Preprint

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“…We included studies with participants who had a formal diagnosis of autism and/or who self‐identified as Autistic to be as inclusive as possible in our search, given that Autistic identity is an emerging area of research. Indeed, most research on adults who self‐identify as Autistic focuses on the topic of identity (see Overton et al, 2023), so excluding participants without a formal diagnosis could have reduced the breadth of our review. We were also cognizant of the many and varied barriers that Autistic people can face in accessing an autism diagnosis, especially for underrepresented groups in autism research (e.g., Adak & Halder, 2017; Kentrou et al, 2019; Schmengler et al, 2021; Tromans et al, 2021).…”

Section: Methodsmentioning

confidence: 99%

Autistic identity: A systematic review of quantitative research

Davies,

Cooper,

Killick

et al. 2024

Autism Research

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Autism can be considered both a personal and social identity. Identifying the factors contributing to positive Autistic identity development is crucial given the potential implications for mental health and wellbeing. In this systematic review, we aimed to synthesize quantitative literature on Autistic identity to identify the (individual and environmental) factors associated with Autistic identity, and to ascertain the relationship between Autistic identity and mental health and wellbeing. A total of 3,617 studies were screened and 20 met our inclusion criteria. Results indicated that people developed a more positive Autistic identity when receiving external autism acceptance and external support. The association between individual factors and Autistic identity were largely nonsignificant or inconclusive, highlighting the need for broad support that meets the needs of a range of Autistic people, rather than specific subgroups. Importantly, positive Autistic identity was associated with improved mental health and wellbeing. Peer support and/or self‐directed support resources may be valuable mechanisms for supporting Autistic people to cultivate a positive Autistic identity. The evaluation of such support, including the long‐term impacts on identity development, will be a critical avenue for future research.

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“…Quantitative analyses. To determine whether there were differences in loneliness scores between formally-diagnosed and self-identifying autistic adults (given the debates around whether adults who self-identify as autistic should be included in autism research; see Overton et al, 2023, for an overview), we ran independent samples t-tests (or non-parametric equivalents). To answer our research questions, we ran correlations to determine whether scores on each of the three loneliness measures were related to one another.…”

Section: Methodsmentioning

confidence: 99%

Evaluating measures to assess loneliness in autistic adults

Grace,

Remington,

Davies

et al. 2023

Autism

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Several measures have been developed to assess loneliness in the general population. Here, we examined if, and how accurately, widely-used measures capture the experience of loneliness in autistic adults. A total of 203 autistic participants from the UK completed an online survey, which included two widely-used loneliness questionnaires: the University of California, Los Angeles (UCLA) Loneliness Scale Version 3 and the Social and Emotional Loneliness Scale for Adults (SELSA). Participants completed the measures and provided their views on how well they captured their experiences of loneliness. A direct measure, asking participants how often they felt lonely, was also completed. Results demonstrated that scores on the UCLA and SELSA questionnaires positively correlated with the direct measure of loneliness, suggesting that these tools accurately index autistic experiences of loneliness. However, qualitative responses suggested that participants found both scales difficult to complete. Using reflexive thematic analysis, we identified three themes that encapsulated participants’ views: (1) failing to distinguish between the characteristics/experiences of loneliness and being autistic, (2) loneliness is not a static trait and (3) inappropriate wording. Given that our sample of autistic participants tended to prefer the UCLA scale to the SELSA, we provide initial recommendations around how the UCLA scale could be adapted for autistic adults. Lay abstract There has been increasing interest in research on loneliness in autistic adults. Much of this research has involved giving autistic adults widely-used questionnaires that are thought to measure how lonely people are. However, these questionnaires have been developed for the general public. We do not know whether these questionnaires accurately measure how lonely autistic adults are. We asked 203 autistic adults to complete an online survey that included two widely-used loneliness questionnaires: (1) the University of California, Los Angeles (UCLA) Loneliness Scale Version 3 and (2) the Social and Emotional Loneliness Scale for Adults (SELSA). We also asked participants to rate how lonely they were from 1 (often/always) to 5 (never). Participants were then asked to give their views on the questionnaires (e.g. what they thought was good, and what they thought was not so good about them). We found that the scores on the UCLA scale and the SELSA aligned with participants’ ratings of how lonely they were, which suggests that these two questionnaires accurately measure loneliness in autistic people. However, our participants also identified several ways to improve the questionnaires. This included (1) better distinguishing the characteristics/experiences of loneliness from those of being autistic; (2) better reflecting how loneliness may change at different times and in different contexts and (3) making the phrasing of the questions clearer. Overall, our autistic participants tended to prefer the UCLA scale to the SELSA. Therefore, we present some recommendations about how the UCLA scale could be changed to be more suitable for autistic people.

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Understanding the Self-identification of Autism in Adults: a Scoping Review

Cited by 11 publications

References 53 publications

"What does 'often' even mean?" Revising and Validating the Comprehensive Autistic Trait Inventory in Partnership with Autistic People

"What does 'often' even mean?" Revising and Validating the Comprehensive Autistic Trait Inventory in Partnership with Autistic People

Autistic identity: A systematic review of quantitative research

Evaluating measures to assess loneliness in autistic adults

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