Examining the Relationship Between Self-Determination and Quality of Life in Young Adults with Autism Spectrum Disorder

White, Keeley; Nadig, Aparna

doi:10.1007/s10882-018-9616-y

Cited by 46 publications

(16 citation statements)

References 68 publications

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“…17,19 Self-determination in a socially constructed world of expectations and responsibilities is a major challenge for adult supports. [20][21][22] Research on autistic adults has primarily identified poor outcomes compared with adults with other developmental disabilities. 17,18,23,24 Efforts to capture QoL for autistic adults have used a quantitative approach with externally defined ''normative'' outcomes (e.g., employment, independent living) or on objective or observed indices (i.e., physical health markers).…”

Section: What Did the Program Do?mentioning

confidence: 99%

“…[47][48][49][50] We posit that a Level 3 unit of focus on ''life arrangement'' as primary in adulthood because it encourages active engagement of the person in specific contexts and considers the importance of the meaning behind the intervention and measurement inclusive of the person's experience. 21,22 For many adults on the spectrum, limited access to adult social, vocational, or leisure options limits their ability to continue to develop in those areas, often leading to isolation at home. To impact QoL, it is particularly important to engage adults toward self-determination with a balance of their own interests, safe and healthy choices, and accessible resources.…”

Section: What Did the Program Do?mentioning

confidence: 99%

“…2,7,13,17,20,22,[32][33][34]37,[51][52][53] Level 3 interventions intentionally embed within settings meant to expand access to adult-appropriate opportunities combined with supported practice of personally meaningful skills as part of environmental arrangement. 12 While research has included self-determination and QoL self-report data, 21,22 little research exists on ways to measure and evaluate active engagement of autistic adults in learning to achieve their own self-set goals in real-world settings.…”

Section: What Did the Program Do?mentioning

confidence: 99%

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Meaning in Measurement: Evaluating Young Autistic Adults' Active Engagement and Expressed Interest in Quality-of-Life Goals

Bernhardt

Lam

Thomas

et al. 2020

Autism in Adulthood

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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 reallife 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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Section: What Did the Program Do?mentioning

confidence: 99%

Section: What Did the Program Do?mentioning

confidence: 99%

Section: What Did the Program Do?mentioning

confidence: 99%

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Meaning in Measurement: Evaluating Young Autistic Adults' Active Engagement and Expressed Interest in Quality-of-Life Goals

Bernhardt

Lam

Thomas

et al. 2020

Autism in Adulthood

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“…Self-determination refers to the ability of, and opportunity for, students to make their own decisions and advocate for themselves [Wehmeyer, 2015]. Promoting selfdetermination in secondary education for students with ASD has been associated with an increase in quality of life in adulthood [Kim, 2019;White, Flanagan, & Nadig, 2018]. Secondary students with ASD must be able to identify the types of supports and accommodations they need and must be able to articulate these needs to receive those services in college or on the job.…”

Section: Introductionmentioning

confidence: 99%

Student, Educator, and Parent Perspectives of Self‐Determination in High School Students with Autism Spectrum Disorder

et al. 2020

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Self-determination refers to an individual being a causal agent in their daily activities, including the ability to express their own needs, interests, and wants, make choices, and set goals. Self-determination is critical during adolescence and has been linked to positive educational outcomes in individuals with disabilities. Few studies have characterized the measurement of self-determination in adolescents with autism spectrum disorder (ASD). The purpose of the current study was to (a) examine the agreement across the American Institutes for Research Self-Determination Scale (Wolman et al., AIR Self-determination scale and user guide. Palo Alto, CA: American Institute for Research, 1994) student, educator, and parent forms for high school students with ASD, and (b) examine student and family predictors of self-determination. Participants included adolescents with ASD (N = 547, mean chronological age = 16.1 years, SD = 1.4 years), their parents, and educators. Student reports did not correspond to parent or educator reports, and parent and educator reports were in moderate agreement. Adaptive behavior was a significant predictor of self-determination across reporters, highlighting the significance of adaptive behavior skills during high school. In addition to promoting adaptive behavior, supporting family empowerment, and reducing family burden may help to increase self-determination in high school students with ASD.

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“…esde que se constató su vinculación con la calidad de vida, la autodeterminación pasó a ser un concepto relevante en la investigación y en los servicios dirigidos a personas con discapacidad intelectual (Schalock, 1996;Schalock y Verdugo, 2014;Verdugo y Schalock, 2007;Verdugo, Gómez y Navas, 2013;White, Flanagan y Nadig, 2018). Quienes alcanzan mayor autodeterminación logran mejores resultados personales, en términos de inclusión laboral, relaciones sociales, participación en la comunidad, metas personales y reconocimiento de fortalezas individuales (Shogren y Ward, 2018;Shogren, Wehmeyer, Palmer, Rifenbark y Little, 2015;Wehmeyer y Bolding, 2001;Wehemeyer, Verdugo y Vicente, 2013).…”

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Autodeterminación en adolescentes y jóvenes con discapacidad intelectual: perspectiva de los padres

Sabeh

Aguilar

Carreras

2020

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La autodeterminación de las personas con discapacidad es esencial para el logro de su calidad de vida. El apoyo que brindan las familias a los hijos depende en buena medida de las percepciones que sostienen sobre la autodeterminación. Por eso esta investigación pretende describir la opinión de padres de adolescentes y jóvenes con discapacidad intelectual acerca de este constructo. Se conformaron 5 grupos focales, con 42 participantes. El análisis lexicométrico de las entrevistas grupales, utilizando el software Iramuteq, arrojó cuatro dimensiones: autonomía; barreras en la familia y el entorno; apoyos y oportunidades; capacidades psicológicas. Los padres desconocen el concepto de autodeterminación en toda su extensión. Lo asocian con la autonomía en el cuidado personal y en las tareas del hogar y, en menor medida, con la vida en la comunidad. Las barreras familiares son de tipo psicológico: el miedo, la sobreprotección, la subestimación y falta de confianza en las capacidades del hijo. Esto los lleva a ofrecer menos oportunidades. Consideran a la sociedad poco preparada para fomentar estos procesos. Sienten la necesidad de recibir apoyo profesional orientado a revisar sus creencias, aumentar sus conocimientos y poner en práctica estrategias que faciliten el logro de la autodeterminación en sus hijos.

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Examining the Relationship Between Self-Determination and Quality of Life in Young Adults with Autism Spectrum Disorder

Cited by 46 publications

References 68 publications

Meaning in Measurement: Evaluating Young Autistic Adults' Active Engagement and Expressed Interest in Quality-of-Life Goals

Meaning in Measurement: Evaluating Young Autistic Adults' Active Engagement and Expressed Interest in Quality-of-Life Goals

Student, Educator, and Parent Perspectives of Self‐Determination in High School Students with Autism Spectrum Disorder

Autodeterminación en adolescentes y jóvenes con discapacidad intelectual: perspectiva de los padres

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