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Time to Change How We Measure Quality of Life and Well-Being in Autism: A Systematic Review.

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Title: Time to Change How We Measure Quality of Life and Well-Being in Autism: A Systematic Review.
Authors: Simpson, Kate1,2 (AUTHOR) k.simpson@griffith.edu.au, Paynter, Jessica2,3 (AUTHOR), Westerveld, Marleen2,4 (AUTHOR), van der Meer, Larah5 (AUTHOR), Patrick, Lee5 (AUTHOR), Hogg, Gabrielle6 (AUTHOR), Heussler, Helen7 (AUTHOR), Heyworth, Melanie8 (AUTHOR), Gable, Alison9 (AUTHOR), Chandran, Hem Sid6 (AUTHOR), Bowen, Rachael10 (AUTHOR), Adams, Dawn1,2 (AUTHOR)
Source: Review Journal of Autism & Developmental Disorders. Jun2026, Vol. 13 Issue 2, p337-352. 16p.
Subject Terms: *Quality of life, *Autism, *Evaluation methodology, *Evidence synthesis, *Community involvement, Participant observation, Well-being
Abstract: This review examines methods used to report on the QoL and/or well-being of autistic people. A search of four databases (June 2023) identified 256 studies that reported on the Qol and/or well-being of at least one autistic person. The quality of studies varied. Results were synthesised on who reported, who was reported on, how information was obtained including accommodations and community involvement. One-third used proxy informants, over 80% used generic measures of QoL and/or well-being, autistic people with intellectual impairment and communication disorders were underrepresented, one quarter included accommodations, and few studies included community involvement. Despite the growing research on QoL and well-being of autistic people, more accessible and inclusive research is required to understand autistic people's experience. [ABSTRACT FROM AUTHOR]
Copyright of Review Journal of Autism & Developmental Disorders is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Education Research Complete
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  Data: Time to Change How We Measure Quality of Life and Well-Being in Autism: A Systematic Review.
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  Data: <searchLink fieldCode="AR" term="%22Simpson%2C+Kate%22">Simpson, Kate</searchLink><relatesTo>1,2</relatesTo> (AUTHOR)<i> k.simpson@griffith.edu.au</i><br /><searchLink fieldCode="AR" term="%22Paynter%2C+Jessica%22">Paynter, Jessica</searchLink><relatesTo>2,3</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Westerveld%2C+Marleen%22">Westerveld, Marleen</searchLink><relatesTo>2,4</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22van+der+Meer%2C+Larah%22">van der Meer, Larah</searchLink><relatesTo>5</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Patrick%2C+Lee%22">Patrick, Lee</searchLink><relatesTo>5</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Hogg%2C+Gabrielle%22">Hogg, Gabrielle</searchLink><relatesTo>6</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Heussler%2C+Helen%22">Heussler, Helen</searchLink><relatesTo>7</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Heyworth%2C+Melanie%22">Heyworth, Melanie</searchLink><relatesTo>8</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Gable%2C+Alison%22">Gable, Alison</searchLink><relatesTo>9</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Chandran%2C+Hem+Sid%22">Chandran, Hem Sid</searchLink><relatesTo>6</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Bowen%2C+Rachael%22">Bowen, Rachael</searchLink><relatesTo>10</relatesTo> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Adams%2C+Dawn%22">Adams, Dawn</searchLink><relatesTo>1,2</relatesTo> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Review+Journal+of+Autism+%26+Developmental+Disorders%22">Review Journal of Autism & Developmental Disorders</searchLink>. Jun2026, Vol. 13 Issue 2, p337-352. 16p.
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  Data: *<searchLink fieldCode="DE" term="%22Quality+of+life%22">Quality of life</searchLink><br />*<searchLink fieldCode="DE" term="%22Autism%22">Autism</searchLink><br />*<searchLink fieldCode="DE" term="%22Evaluation+methodology%22">Evaluation methodology</searchLink><br />*<searchLink fieldCode="DE" term="%22Evidence+synthesis%22">Evidence synthesis</searchLink><br />*<searchLink fieldCode="DE" term="%22Community+involvement%22">Community involvement</searchLink><br /><searchLink fieldCode="DE" term="%22Participant+observation%22">Participant observation</searchLink><br /><searchLink fieldCode="DE" term="%22Well-being%22">Well-being</searchLink>
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  Data: This review examines methods used to report on the QoL and/or well-being of autistic people. A search of four databases (June 2023) identified 256 studies that reported on the Qol and/or well-being of at least one autistic person. The quality of studies varied. Results were synthesised on who reported, who was reported on, how information was obtained including accommodations and community involvement. One-third used proxy informants, over 80% used generic measures of QoL and/or well-being, autistic people with intellectual impairment and communication disorders were underrepresented, one quarter included accommodations, and few studies included community involvement. Despite the growing research on QoL and well-being of autistic people, more accessible and inclusive research is required to understand autistic people's experience. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Review Journal of Autism & Developmental Disorders is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=ehh&AN=194302653
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        Value: 10.1007/s40489-024-00440-7
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        Text: English
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      – SubjectFull: Evaluation methodology
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              Text: Jun2026
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