Measuring what Matters: Considerations for the Measurement of Services for Individuals with Autism

Burke, Meghan; Cheung, W. Catherine; Best, Megan; DaWalt, Leann Smith; Taylor, Julie Lounds

doi:10.1007/s10882-023-09916-6

Cited by 4 publications

(7 citation statements)

References 50 publications

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“…Amid concerns about potentially making participants re-identifiable in this small sample study (O’Keefe & Rubin, 2015), this report opted to provide less information. A third limitation is a need for better services measures that attend to nuances in services (Burke et al, 2023), given qualitative patterns that provide rich information (Anderson et al, 2018), balancing precision with privacy and feasibility for routine care settings (Douglas et al, 2022).…”

Section: Discussionmentioning

confidence: 99%

“…Prior work has examined broad patterns in large datasets (Song et al, 2022; Turcotte et al, 2016) and longitudinal change in individual studies (Laxman et al, 2019), but future work is needed to merge theory-founded approaches to social processes and heterogeneity with statistical methods. A second area for future research is improved measures for not just services (Burke et al, 2023), but also for social drivers of health (Centers for Disease Control and Prevention, 2021). Here, sense of community was associated with services outcomes, but its clinical significance is unknown.…”

Section: Discussionmentioning

confidence: 99%

“…Language. Participants completed normed assessments across language domains (Girolamo et al, 2023b;Magiati et al, 2014), which align with clinical practice patterns for service eligibility (Burke et al, 2023;Selin et al, 2022); see Table 2. Overall receptiveexpressive language was assessed by the Clinical Evaluation Language Fundamentals-5 th Ed., normed up to age 21 (Wiig et al, 2013).…”

Section: Individual Difference Measuresmentioning

confidence: 99%

“…In turn, family financial burden may not apply to an adult who does not have living family members (Ishler et al, 2023). A second limitation was not reporting detailed information on participants, including exact multiracial categories, educational programming and "other" services received, and frequency, extent of need, and duration of services (Burke et al, 2023). Amid concerns about potentially making participants re-identifiable in this small sample study (O'Keefe & Rubin, 2015), this report opted to provide less information.…”

Section: Limitationsmentioning

confidence: 99%

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Services in Minoritized Autistic Adolescents and Adults Varying in Language Skills

Girolamo,

Escobedo,

Ghali

et al. 2024

Preprint

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Background: Racially and ethnically minoritized autistic individuals face intersectional disparities in access to services and research representation. Prior work tends to overlook individual preferences, lived expertise, and the of language skills in services. To address this gap, this community-based participatory study examines the presence and correlates of services in minoritized autistic adolescents and adults varying in language skills. Method: Participants (N = 73, ages 13-30, >50% with language scores ≤ -1.25 SD and ~30% with NVIQ < 70 to 84) completed a behavioral assessment protocol. Participants and caregivers completed questionnaires. Descriptive and regression analyses evaluated patterns and predictors of number of services received, unmet needs, and barriers. Results: Participants received multiple services yet had multiple unmet service needs and barriers. Effects of individual differences and social-ecological variables on services received, unmet needs, and barriers varied in presence and magnitude when using a categorical versus continuous approach to individual differences. Implications: While the number of services received and unmet needs were similar to prior work, examination of individual services, unmet needs, and barriers suggested differences. Effects point to nuance in experiences during the transition to adulthood and motivate use of participatory approaches to build the evidence base informing practice and advocacy.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Individual Difference Measuresmentioning

confidence: 99%

Section: Limitationsmentioning

confidence: 99%

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Services in Minoritized Autistic Adolescents and Adults Varying in Language Skills

Girolamo,

Escobedo,

Ghali

et al. 2024

Preprint

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“…First, while autistic youth lose access to school and child-based services in the transition to adulthood (Eilenberg et al, 2019), individual needs vary (Laxman et al, 2019; Schott et al, 2021; Taylor & Henninger, 2015). Unmet service needs, and not services received, captures this variability (Burke et al, 2023), but it is unclear how unmet service needs impact self-reported self-determination (Cheak-Zamora et al, 2020). Second, barriers to services are higher if caregivers feel a greater burden (Ishler et al, 2023; Taylor & Henninger, 2015); thus, more barriers could be tied to lower caregiver-reported self-determination (Anderson et al, 2018a).…”

Section: Self-determination In Minoritized Autistic Adolescents and Y...mentioning

confidence: 99%

Self-determination in minoritized autistic adolescents and adults

Girolamo,

Birmingham,

Patel

et al. 2024

Preprint

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Self-determination plays an important role in outcomes in autism and shows intersectional disparities. Yet, little is known about the role of individual differences or social drivers of health in the development of self-determination. Understanding these factors is key for developing effective supports. This mixed-methods convergent study examined self-determination in racially and ethnically minoritized autistic individuals and caregivers. Participants ages 13 to 30 (N = 73) varying widely in language and cognitive ability and caregivers (n =52) completed the Self-Determination Inventory. Autism traits and sense of community predicted caregiver report of self-determination, and autism traits and language predicted self-report of self-determination, consistent with DisCrit and Diversity Science. Self-Determination Inventory interviews of a subset of participants (n = 13) and caregivers (n = 9) were analyzed using inductive thematic analysis. Themes pointed to the role of the intersection of race and disability in shaping self-determination. Altogether, findings point to the importance of these frameworks, environmental influences, and multi-informant perspectives in characterizing self-determination. Future work should focus on the impact of environmental factors in self-determination in minoritized autistic individuals during the transition to adulthood.

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Examining the Efficacy of Culturally Responsive Interventions for Autistic Children and Their Families: A Meta-Analysis

Lee,

Kang,

Terol

et al. 2024

J Autism Dev Disord

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Measuring what Matters: Considerations for the Measurement of Services for Individuals with Autism

Cited by 4 publications

References 50 publications

Services in Minoritized Autistic Adolescents and Adults Varying in Language Skills

Services in Minoritized Autistic Adolescents and Adults Varying in Language Skills

Self-determination in minoritized autistic adolescents and adults

Examining the Efficacy of Culturally Responsive Interventions for Autistic Children and Their Families: A Meta-Analysis

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