The experiences of adults with autism spectrum disorder: Self-determination and quality of life

Kim, So Yoon

doi:10.1016/j.rasd.2018.12.002

Cited by 65 publications

(42 citation statements)

References 69 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%

“…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. 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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“…Research conducted by Kim (2019) finding that selfdetermination carried out with qualitative reviews based on a critical interpretive synthesis (CIS) framework was conducted to investigate what is currently known about the relationship between self-determination and life experiences of 18-yearold adults with experiences and obstacles that occur to achieve a goal. Of the 44 students identified there were 14 students who experienced low self-determination, this study found the results of self-determination involved in five areas of life experience, employment status, social participation, advocacy, positive identity, and stress management and individuals with good STD will feel the connection between self-determination and quality of life.…”

Section: Development Of Self-determinationmentioning

confidence: 99%

Development of Self-Determination

Imamudin¹,

Budiman²,

Suherman³

2020

Proceedings of the International Conference on Educational Psychology and Pedagogy - "Diversity in Education" (ICEPP 2019)

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This research is motivated by the purpose of self-determination, the awareness of individuals to achieve goals with the motivation that is in themselves. The essence of self-determination includes the awareness of the basic self-motivation to achieve the desired goals with all the consequences that will be faced and the individual remains and reaches the desired goals. The determining aspect is autonomy, competence and connectedness. Individuals in acting to choose and make decisions related to school activities. The tendency to live alone does not work without help and always has the competence that the task will be completed and always communicate with friends so motivation is not only in themselves but extrinsic factors or friends can influence to be motivated again. This finding has important implications for rationalization and measurement of interpersonal strength and psychological needs. The methods and techniques carried out by the quasi experiment. The purpose of this research is to identify the effectiveness of reflective learning to improve self-determination.

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“…Autistic people with learning disability are often excluded from studies investigating QoL (Kim, 2019) and both studies in the fields of autism and learning disability beyond QoL research (with one example given in Waldock, 2018b in regards to talking therapies for autistic people). Smith et al, found the QoL of their sample to be lower in comparison to their non-autistic counterparts; further investigation is required to confirm which domains are lower in autistic people, given some domains tend to be more highly researched than others (Kim, 2019). Smith et al call for further research specifically focusing on autistic people with a learning disability.…”

Section: Autistic People With a Learning Disabilitymentioning

confidence: 99%