Autism in Adulthood : Advancing Measurement in Research and Practice for Autistic Adults, Part 2- 2-3 - September 2020

vendredi 20 novembre 2020

1. Bernhardt JB, Lam GYH, Thomas T, Cubells JF, Bohlke K, Reid M, Rice CE. Meaning in Measurement : Evaluating Young Autistic Adults’ Active Engagement and Expressed Interest in Quality-of-Life Goals. Autism in Adulthood. 2020 ; 2(3) : 227-42.

The need for support programs and meaningful measurement of outcomes with autistic adults is growing. To date, success in autism intervention has been defined based on changes in discretely defined, observable behaviors with limited consideration of the person’s experience, motivations, or the complex contexts in which these skills are used. Behavioral skill-building interventions are effective at increasing or decreasing specific behaviors, but a purely behavioral focus is not enough for meaningful improvements in adult quality of life (QoL). To reflect real-life impact, intervention and measurement must go beyond quantitative estimates of changes in skills regardless of context of use and focus on enhancing and evaluating functional outcomes and adult QoL that includes active engagement with the adult and provides rigor in qualitative evaluation. This article reports on efforts to assess active engagement of verbally fluent young autistic adults in a supported university-based residential pilot program built around self-set wellness goals for healthy, engaged, responsible, and empowered adult living. Program evaluation used an exploratory process for evaluating QoL learning, while also being open to how future work can discern participant meanings in measurement. The pilot used a mixed-methods approach to measure entry skills and interests, codetermine personal wellness goals, inform program content with participants, and measure QoL learning in terms of active engagement, expressed interest, and changes in self-appraisal of competence, confidence, and identity. Participants’ QoL learning, replication of QoL learning measurement methods, and further exploration of strategies to put participant meanings in QoL learning measurement are discussed.

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2. Brown CM, Attwood T, Garnett M, Stokes MA. Am I Autistic ? Utility of the Girls Questionnaire for Autism Spectrum Condition as an Autism Assessment in Adult Women. Autism in Adulthood. 2020 ; 2(3) : 216-26.

This study aimed to explore the structure of a modified version of the Girls Questionnaire for Autism Spectrum Condition (GQ-ASC ; Attwood et al. 2011) to test its utility as an autism screening measure for adult women. We recruited 672 cisgender and trans women aged between 18 and 72 online. The sample contained 350 autistic women (M age ?= ?36.21, standard deviation [SD] ?= ?10.10) and 322 nonautistic women (M age ?= ?34.83, SD ?= ?9.93), screened using the Autism Quotient. A principal component analysis and parallel analysis revealed a five-component solution that accounted for 40.40% of the total variance. The extracted components appear to be consistent with what is known about the way girls and women display their autistic traits and interpreted as (1) Imagination and play : Describes interest in fantasy, fiction, and reflection on the quality and content of imaginative play in childhood. (2) Camouflaging : Describes effortful attempts to reduce the visibility of autistic traits. (3) Sensory sensitivities : Describes sensory processing hyper- and hyposensitivities across various modalities. (4) Socializing : Describes barriers to social understanding and participation. (5) Interests : Describes age-advanced and nonstereotypically feminine interests. We observed significant differences between autistic and nonautistic women across all extracted components, and the total score. A receiver operating characteristic analysis indicated an excellent level of discrimination. When applying a cutoff score of 57, the GQ-ASC correctly identified 80.0% of cases. The modified GQ-ASC is an effective and highly discriminant screening tool for use in adult autistic women. It provides valuable insight into the shared features and experiences of this underrecognized and underrepresented subset of the autistic community.

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3. Cheak-Zamora N, Teti M, Tait A. Development and Initial Testing of a Health-Related Independence Measure for Autistic Young Adults as Reported by Caregivers. Autism in Adulthood. 2020 ; 2(3) : 255-67.

Background : Becoming an adult comes with education, work, living, and health-related transitions. Health care transition (HCT) services help adolescents prepare for a smooth transition to adult care, ensure health insurance retention, and promote adolescents’ independent management of health care and life needs. Lack of HCT services can result in negative outcomes such as unmet needs, overmedication, and loss of decision-making authority. Autistic young adults (AYA) are half as likely to receive HCT services compared with special needs young adults. Furthermore, there are no HCT readiness measures that address the unique needs of AYA. Methods : This study used a mixed-methods approach to develop and test a holistic caregiver-reported measure of HCT readiness for AYA Health-Related Independence (HRI). The phases used to create and test the HRI measure included : (1) construct and question topic development through qualitative data collection with AYA and caregivers ; (2) question development with clinicians and caregivers ; and (3) initial question testing utilizing cognitive interviews and pretesting of the instrument with caregivers. Results : Measure constructs were developed based on qualitative findings from AYA (n ?= ?27) and caregivers (n ?= ?39). The researchers identified 12 themes related to HRI from the data. Next, questions were developed for each theme by caregivers (n ?= ?5) and clinicians (n ?= ?25). Finally, questions and the survey format were tested using caregiver feedback in the form of cognitive interviews (n ?= ?15) and pretests (n ?= ?21). The final version of the caregiver-reported HRI measure included 8 constructs and 58 questions. Conclusion : The development of the HRI measure was a comprehensive and iterative process. This article highlights the measurement development process and its potential impact on AYA, caregivers, and clinicians.

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4. Kim SY. The Development and Pilot-Testing of the Autism Attitude Acceptance Scale : An Instrument Measuring Autism Acceptance. Autism in Adulthood. 2020 ; 2(3) : 204-15.

Background : Although previous studies have measured attitudes about autism to understand ways to ameliorate stigmatized beliefs, nonautistic individuals’ acceptance of autism is still not well understood. This study aimed to develop and pilot test the Autism Attitude Acceptance Scale (AAAS), a self-report instrument that measures nonautistic adults’ autism acceptance based on the neurodiversity framework, and examine the associations between autism acceptance and purported variables (disability-related experience/awareness variables and demographic characteristics). Methods : The author piloted the AAAS with 122 nonautistic adults. Principal component analysis and reliability analysis were used to examine the factor structure and psychometric properties of the AAAS. The associations between the AAAS and autism knowledge, the quantity and quality of previous contact, neurodiversity awareness, and demographic variables were examined using Pearson’s r correlations, t-tests, and analyses of variance. Results : The author constructed two subscales of the AAAS, General Acceptance (GA) and Attitudes toward Treating Autistic Behaviors (ATAB). The GA measures the acceptance of autism as a unique way of being, willingness to provide support to autistic individuals, and feeling comfortable while interacting with them. The ATAB measures how strongly a person believes that receiving treatments to reduce autistic symptoms will or will not benefit autistic individuals. The GA was associated with autism knowledge, quality and quantity of previous contact with autistic individuals, neurodiversity awareness, gender, ethnicity, and education level of participants. The ATAB was significantly associated with autism knowledge and quality and quantity of previous contact ; the ATAB did not have any significant associations with neurodiversity awareness and demographic variables. Conclusions : The AAAS, which validly and reliably measures nonautistic individuals’ autism acceptance, identified the subgroups with low autism acceptance. This study calls for further examination of the underlying mechanism of autism acceptance and neurodiversity framework to restructure nonautistic individuals’ attitudes about autism.

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5. Long KA, Gordillo M, Orsmond GI. Improving the Validity and Generalizability of Adult Autism Research Through Incorporating Family and Cultural Contexts. Autism in Adulthood. 2020 ; 2(3) : 177-84.

The relatively nascent empirical knowledge base regarding autism in adulthood provides an opportunity to adopt a contextual approach that conceptualizes autism features, outcomes, and supportive services as interactions between the characteristics of the condition and contextual factors across the life course. Although a contextual approach encompasses many aspects of a person’s identity and social ecology, we focus here on the closely interrelated family and cultural contexts, which have been poorly integrated into adult autism research. We argue that designing studies with a priori attention to context (e.g., family and culture) will improve the relevance and comprehensiveness of findings, which in turn will improve construct validity and provide a more accurate understanding of autism-related outcomes in adulthood. Similarly, designing and/or selecting measures that have been validated with culturally and linguistically diverse samples will improve the utility of findings and reduce spurious or null effects. More contextually informed methodologies will lead to improved generalizability and practical applications of findings. We offer concrete guidance regarding how to increase the social ecological perspective within adult autism research as it relates to study conceptualization, methodology, and measurement.

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6. McGhee Hassrick E, Sosnowy C, Graham Holmes L, Walton J, Shattuck PT. Social Capital and Autism in Young Adulthood : Applying Social Network Methods to Measure the Social Capital of Autistic Young Adults. Autism in Adulthood. 2020 ; 2(3) : 243-54.

Social isolation is a core challenge associated with autism. Interpersonal relationships and the resources and support embedded in the social networks of autistic young adults could impact key adult outcomes, including quality of life, mental health, employment, and independence. However, little research systematically measures the networks of autistic young adults and network impact on key adult outcomes. This article demonstrates how social network analysis can be adapted for the field of autism to measure young adult networks. We provide examples as to how this approach could be implemented to yield key insights into the amount and quality of interpersonal relationships and the types of resources embedded in the networks of autistic young adults. The network protocol was feasibility tested with autistic adults during the posthigh school transition period (n ?= ?17, 19 ?27 years). The parents of three of the recruited young adults also successfully completed a complementary network survey, allowing for the inclusion of the parent-reported network using duocentric network analysis, never before applied to parent ?child networks. The implementation data collected from the study suggest feasibility of egocentric and duocentric approaches, with several important modifications to adapt the measure for the field of autism. The future potential of social network research for understanding autism in adulthood is discussed.

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7. Nicolaidis C. Call for Papers : Autism in Adulthood. Autism in Adulthood. 2020 ; 2(3) : 173-.

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8. Pelton MK, Crawford H, Robertson AE, Rodgers J, Baron-Cohen S, Cassidy S. A Measurement Invariance Analysis of the Interpersonal Needs Questionnaire and Acquired Capability for Suicide Scale in Autistic and Non-Autistic Adults. Autism in Adulthood. 2020 ; 2(3) : 193-203.

Background : Autistic adults are more likely to engage in suicidal thoughts and behaviors, but there is little research to explore the underlying reasons. It is unclear whether self-report suicide scales that have been designed for non-autistic people accurately measure suicide risk constructs in autistic people. Therefore, this study explored, for the first time, whether the measurement properties of the self-report scales of the Interpersonal Theory of Suicide are equivalent in autistic and non-autistic adults. Methods : In this study, responses from 342 autistic and 353 non-autistic people on the Interpersonal Needs Questionnaire-10 (INQ-10) and Acquired Capability for Suicide Scale ?Fearlessness about Death (ACSS ?FAD) were compared by using measurement invariance analysis. Data were gathered through an online cross-sectional survey of the self-report measures. Results : Results suggest that measurement properties of the INQ-10 were different in autistic people. Autistic characteristics, such as different theory of mind and preference for concrete language, may have led the scale items to load differently on the factors in the autistic group than in the non-autistic group. The measurement properties of the ACSS ?FAD were invariant between autistic and non-autistic people. Conclusions : Scores on the INQ-10 cannot be meaningfully compared between autistic and non-autistic people due to different measurement properties. Future research could explore how autistic people experience the concepts of burdensomeness and belonging, to consider how measures could accurately capture this. This would allow researchers to explore the role of these constructs in the development of suicidal thoughts and behaviors in autistic people. Clinicians should be aware that suicide risk factors may present differently in autistic people. Scores on the ACSS-FAD can be meaningfully compared, but the negatively worded scale items may pose similar response difficulties to autistic and non-autistic people.

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9. Sahin E, Bury S, Flower R, Lawson L, Richdale A, Hedley D. Psychometric Evaluation of an Australian Version of the Vocational Index for Adults with Autism. Autism in Adulthood. 2020 ; 2(3) : 185-92.

Background : Autistic individuals are underrepresented in employment and postsecondary education. Research is hampered by a lack of psychometrically valid instruments that can be used to assess the vocational activities of autistic people. This study examined the psychometric properties of an Australian modified version of the Vocational Index for Adults with Autism (M-VIAA), an assessment of vocational independence. Methods : Participants were 105 autistic and 106 nonautistic young adults aged 17 ?26 years recruited from the longitudinal Study of Australian School Leavers with Autism. We examined psychometric properties of the M-VIAA by (1) comparing scores between autistic and nonautistic participants, (2) examining convergent validity with daily living skills, and (3) divergent validity with autistic traits. We explored change over time by comparing baseline and 24-month follow-up scores in autistic participants. Results : We found vocational independence to be significantly higher in nonautistic participants compared with autistic participants. We did not find a significant relationship between daily living skills and the M-VIAA. There was a small but significant relationship between the M-VIAA and autistic traits. Scores on the M-VIAA remained stable over time for a subsample of autistic participants. Conclusions : The present study provides preliminary support for the M-VIAA with some limitations. Support for construct validity was mixed with support for concurrent and discriminant, but not convergent validity. We suggest that the M-VIAA may not capture the full complexity of vocational challenges faced by autistic people. Future research should build on the structure of the VIAA while ensuring applicability across cultures and contexts, as well as ensuring the richness of vocational activities of autistic people is captured.

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10. Wagner A, Caplan L, Juliano-Bult D, Williams N. Improving the Rigor of Research on Autism in Adulthood Requires Valid and Reliable Measurement Tools. Autism in Adulthood. 2020 ; 2(3) : 174-6.

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