Disability, functioning, and quality of life among treatment-seeking young autistic adults and its relation to depression, anxiety, and stress

Park, Shin; Song, Yun Ju Christine; Demetriou, Eleni; Pepper, Karen L.; Norton, Alice R.; Thomas, Emma; Hickie, Ian B.; Hermens, Daniel F.; Guastella, Adam J.

doi:10.1177/1362361318823925

Cited by 51 publications

(59 citation statements)

References 56 publications

(56 reference statements)

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“…There is an impending need for reliable and valid measures of disability that could be used in the autistic population which can support ICF frameworks. Previous studies have shown that individuals with ASD report significant functional impairments in domains involving cognition, getting‐along, participation, and life activities at work or school than neurotypical controls [Chi et al, ; Schmidt et al, ], and a similar degree of disability to those presenting to same mental health services with primary mental health disorders [Park et al, ]. Our results further suggest that the WHODAS‐II is a useful measure of disability in autistic individuals without ID.…”

Section: Discussionsupporting

confidence: 73%

“…getting-along, participation, and life activities at work or school than neurotypical controls Schmidt et al, 2015], and a similar degree of disability to those presenting to same mental health services with primary mental health disorders [Park et al, 2019]. Our results further suggest that the WHODAS-II is a useful measure of disability in autistic individuals without ID.…”

Section: Discussionsupporting

confidence: 63%

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Validation of the 36‐item and 12‐item self‐report World Health Organization Disability Assessment Schedule II (WHODAS‐II) in individuals with autism spectrum disorder

et al. 2019

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The World Health Organization Disability Assessment Schedule II (WHODAS‐II) is one of the most widely used generic assessments for measuring disability levels in both clinical and nonclinical populations, with sound psychometrics that is also aligned with the International Classification of Functioning framework. However, its psychometric properties have not been explored extensively in individuals with autism spectrum disorder (ASD). This study examined the psychometric properties of the 36‐item and 12‐item Self‐Report WHODAS‐II from 109 individuals diagnosed with ASD and without intellectual disability (IQ ≥ 70). Participants were consecutively recruited from the Brain and Mind Centre in New South Wales, Australia. The WHODAS‐II showed adequate internal consistency for all domain scores (α = 0.78–0.97 for 36‐item) and for the summary scale (α = 0.95 for 36‐item; 0.86 for 12‐item). All items also exhibited satisfactory correlations with their respective domain (r = 0.39–0.94 for 36‐item) and summary scores (r = 0.42–0.71 for 36‐item; 0.42–0.67 for 12‐item), except item 4.5 “sexual activity” from the 36‐item WHODAS‐II (r = 0.19). Concurrent validity was shown by moderate correlations between similar constructs across the WHODAS‐II and the World Health Organization Quality of Life BREF (Ps < 0.05). The second‐order 7‐factor model showed the best fit for the 36‐item WHODAS‐II, while the second‐order 6‐factor model demonstrated an acceptable fit for the 12‐item WHODAS‐II. The model fit could be improved with some modifications. The Schmid‐Leiman transformation further confirmed the appropriateness of the second‐order factor structure. Overall, the results indicated that the WHODAS‐II is a viable generic self‐report measure for disability in autistic individuals without ID. Autism Res 2019, 12: 1101–1111. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. Lay Summary The majority of autistic people have a disability with a profound or severe limitation in their core activities. However, there is currently limited research identifying reliable and valid self‐report measures for disability in the autistic population. This study examined the psychometric properties of the World Health Organization Disability Assessment Schedule II (WHODAS‐II) from 109 autistic individuals without intellectual disability. Our results suggest that the WHODAS‐II is a viable generic self‐report measure for disability in autistic individuals.

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Section: Discussionsupporting

confidence: 73%

Section: Discussionsupporting

confidence: 63%

Validation of the 36‐item and 12‐item self‐report World Health Organization Disability Assessment Schedule II (WHODAS‐II) in individuals with autism spectrum disorder

et al. 2019

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“…Unlike other studies, the incorporation of the 'café time' each week for both skills practice and building group rapport may have contributed to this effect. The signi cance of these generalised improvements stems from prior research indicating that mental health outcomes may be one of the strongest predictors of the level of disability in ASD populations [12]. That is, reduced mental health may be one of the largest contributors to functional impairments and disability burden for adults with ASD.…”

Section: Discussionmentioning

confidence: 99%

“…Measures of social anxiety and social functioning were included as primary outcome measures, and measures of mood were included as secondary outcome measures. These measures were selected on the basis of their reliability in tracking outcomes relevant to the aims of the study, and from their previous use in assessing symptoms and treatment responsiveness in adults with ASD [12,20,43].…”

Section: Methodsmentioning

confidence: 99%

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Modified CBT for Social Anxiety and Social Functioning in Young Adults with Autism Spectrum Disorder

Bemmer

Boulton

Thomas

et al. 2020

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Background: There is a strong research imperative to investigate efficacious treatment options for adolescents and adults with Autism Spectrum Disorder (ASD). Elevated social anxiety, difficulties with social functioning, and poor mental health have all been identified as core treatment targets for this group. While theoretical models posit a strong bidirectionality between social anxiety and ASD social functioning deficits, few interventions have targeted both domains concurrently. Of the two group interventions previously conducted with adolescents and adults with ASD, significant results have only been observed in either social anxiety or social functioning, and have not generalised to changes in overall mood. The aim of this study was to evaluate the efficacy of a group intervention in young adults with ASD. Primary treatment outcomes were social anxiety symptoms and social functioning difficulties; secondary outcomes were self-reported mood and overall distress. Method: Participants completed an eight-week, modified Cognitive Behavioural Therapy (CBT) group intervention targeting both social anxiety and social functioning. Sixty adolescents and young adults with ASD, without intellectual impairment, aged between 16 and 33 (M = 22.23; SD = 4.62), were recruited from the community, Headspace, and referrals to the Autism Clinic for Translational Research. Outcomes (social anxiety, social functioning and mood) were measured pre- and post-intervention via self-report questionnaires, and participants were invited to provide feedback on the intervention (at the mid-point and end of the intervention).Results: Participants demonstrated statistically significant improvements on all outcome measures in response to the intervention. Specifically, social anxiety symptoms decreased, and social functioning difficulties improved post intervention, particularly in overall social functioning, social awareness and restricted interests and repetitive behaviours. Self-reported symptom improvements also generalised to mood (depression, anxiety and stress). All improvements demonstrated small-to-medium effect sizes. Participant feedback was positive and indicated strong satisfaction with the program.Limitations: The absence of a control group and use of a randomized controlled trial, reliance on self-report instruments as outcome measures, and the exclusion of those with intellectual disability represent significant limitations to this study. Conclusions: These findings indicate that a group CBT intervention is an efficacious treatment for self-reported social anxiety, social functioning and overall mental health in adolescents and young adults with ASD. The standalone nature of the intervention combined with positive participant feedback indicates potential clinical utility, and warrants further study in a randomised-controlled, follow-up design.

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A Lifespan Approach to Patient‐Reported Outcomes and Quality of Life for People on the Autism Spectrum

et al. 2020

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Autistic self‐advocates, family members, and community organizations have called for greater emphasis on enhancing quality of life (QoL) for people with autism. Doing this is critical to understand how QoL unfolds across the life course and to clarify whether gender affects QoL, health, and functioning for people with autism. The purpose of this study was to curate and test a lifespan QoL measurement tool using freely available and well‐constructed National Institutes of Health Patient‐Reported Outcomes Measurement Information System (PROMIS). To develop the PROMIS Autism Battery—Lifespan (PAB‐L), we identified PROMIS scales relevant for autism, reviewed each item, consulted with a panel of autism experts, and elicited feedback from autistic people and family members. This battery provides a comprehensive portrait of QoL for children ages 5–13 (through parent proxy), teens 14–17 (parent proxy and self‐report), and adults 18–65 (self‐report) with autism compared to the general population. Participants and parent informants (N = 912) recruited through a children's hospital and nationwide U.S. autism research registry completed the PAB‐L online. Results indicate that compared to general population norms, people with autism of all ages (or their proxies) reported less desirable outcomes and lower QoL across all domains. Women and girls experienced greater challenges in some areas compared to men and boys with autism. The PAB‐L appears to be a feasible and acceptable method for assessing patient‐reported outcomes and QoL for autistic people across the life course. Autism Res 2020, 13: 970‐987. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. Lay Summary We developed a survey to measure the quality of life of children, teens, and adults with autism using free National Institutes of Health PROMIS questionnaires. People with autism and family members rated the PROMIS Autism Battery—Lifespan as useful and important. Some reported a good quality of life, while many reported that their lives were not going as well as they wanted. Women and girls reported more challenges in some areas of life than men and boys.

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Disability, functioning, and quality of life among treatment-seeking young autistic adults and its relation to depression, anxiety, and stress

Cited by 51 publications

References 56 publications

Validation of the 36‐item and 12‐item self‐report World Health Organization Disability Assessment Schedule II (WHODAS‐II) in individuals with autism spectrum disorder

Validation of the 36‐item and 12‐item self‐report World Health Organization Disability Assessment Schedule II (WHODAS‐II) in individuals with autism spectrum disorder

Modified CBT for Social Anxiety and Social Functioning in Young Adults with Autism Spectrum Disorder

A Lifespan Approach to Patient‐Reported Outcomes and Quality of Life for People on the Autism Spectrum

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