Big data in autism research: Methodological challenges and solutions / Brian K. LEE in Autism Research, 16-10 (October 2023)  

Public ISBD [article]  inAutism Research > 16-10 (October 2023) . - p.1852-1858 Titre : Big data in autism research: Methodological challenges and solutions Type de document : Texte imprimé et/ou numérique Auteurs : Brian K. LEE, Auteur ; Diana E. SCHENDEL, Auteur ; Lindsay L. SHEA, Auteur Article en page(s) : p.1852-1858 Index. décimale : PER Périodiques Résumé : Abstract While the concept of big data has emerged over the past decade as a hot topic in nearly all areas of scientific inquiry, it has rarely been discussed in the context of autism research. In this commentary we describe aspects of big data that are relevant to autism research and methodological issues such as confounding and data error that can hamper scientific investigation. Although big data studies can have transformative impact, bigger is not always better, and big data require the same methodological considerations and interdisciplinary collaboration as "small data" to extract useful scientific insight. En ligne : https://doi.org/10.1002/aur.3007 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=513 [article] Big data in autism research: Methodological challenges and solutions [Texte imprimé et/ou numérique] / Brian K. LEE, Auteur ; Diana E. SCHENDEL, Auteur ; Lindsay L. SHEA, Auteur . - p.1852-1858. in Autism Research > 16-10 (October 2023) . - p.1852-1858 Index. décimale : PER Périodiques Résumé : Abstract While the concept of big data has emerged over the past decade as a hot topic in nearly all areas of scientific inquiry, it has rarely been discussed in the context of autism research. In this commentary we describe aspects of big data that are relevant to autism research and methodological issues such as confounding and data error that can hamper scientific investigation. Although big data studies can have transformative impact, bigger is not always better, and big data require the same methodological considerations and interdisciplinary collaboration as "small data" to extract useful scientific insight. En ligne : https://doi.org/10.1002/aur.3007 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=513

Community participation patterns among autistic adults and associated characteristics: A latent class analysis / Wei SONG in Research in Autism Spectrum Disorders, 89 (November 2021)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 89 (November 2021) . - 101884 Titre : Community participation patterns among autistic adults and associated characteristics: A latent class analysis Type de document : Texte imprimé et/ou numérique Auteurs : Wei SONG, Auteur ; Mark S. SALZER, Auteur ; Stacy L. NONNEMACHER, Auteur ; Lindsay L. SHEA, Auteur Article en page(s) : 101884 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Adults  Community participation  Latent class analysis Index. décimale : PER Périodiques Résumé : Background Community participation can buffer stress and anxiety and improve quality of life for autistic adults. While the participation of autistic adults is known to be lower than the general population, it is not known if subgroups exist based on the degree of interest in participation or amounts of participation among those who are interested. Method This study uses Latent Class Analysis to identify subgroups based on the number of important areas and engagement in important activities, and the demographic, clinical, social, and environmental features of these subgroups. Cross-sectional data from 816 autistic adults aged 18–72 from a large, statewide survey were used. Results Latent Class Analysis resulted in a good-fitting four class solution: Low Importance of Participation (33%); High Importance-Low Participation (16%); High Importance-Moderate Participation (22%); High Importance-High Participation (29%). Autistic adults in the Low Importance group were more likely to have fewer years of education, live with family members, and less likely to have an intellectual disability. Among the classes where participation was important, compared to adults in the Moderate Participation class, those in the Low Participation class were more likely to live in an isolated environment, such as rural areas or supported living facilities, and those in the High Participation class had more satisfying relationships and fewer unmet service needs. Conclusions Study findings have implications for more efficient and effective service planning and delivery that enhances participation interests and amount of community participation to align with interests. En ligne : https://doi.org/10.1016/j.rasd.2021.101884 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=458 [article] Community participation patterns among autistic adults and associated characteristics: A latent class analysis [Texte imprimé et/ou numérique] / Wei SONG, Auteur ; Mark S. SALZER, Auteur ; Stacy L. NONNEMACHER, Auteur ; Lindsay L. SHEA, Auteur . - 101884. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 89 (November 2021) . - 101884 Mots-clés : Autism spectrum disorder  Adults  Community participation  Latent class analysis Index. décimale : PER Périodiques Résumé : Background Community participation can buffer stress and anxiety and improve quality of life for autistic adults. While the participation of autistic adults is known to be lower than the general population, it is not known if subgroups exist based on the degree of interest in participation or amounts of participation among those who are interested. Method This study uses Latent Class Analysis to identify subgroups based on the number of important areas and engagement in important activities, and the demographic, clinical, social, and environmental features of these subgroups. Cross-sectional data from 816 autistic adults aged 18–72 from a large, statewide survey were used. Results Latent Class Analysis resulted in a good-fitting four class solution: Low Importance of Participation (33%); High Importance-Low Participation (16%); High Importance-Moderate Participation (22%); High Importance-High Participation (29%). Autistic adults in the Low Importance group were more likely to have fewer years of education, live with family members, and less likely to have an intellectual disability. Among the classes where participation was important, compared to adults in the Moderate Participation class, those in the Low Participation class were more likely to live in an isolated environment, such as rural areas or supported living facilities, and those in the High Participation class had more satisfying relationships and fewer unmet service needs. Conclusions Study findings have implications for more efficient and effective service planning and delivery that enhances participation interests and amount of community participation to align with interests. En ligne : https://doi.org/10.1016/j.rasd.2021.101884 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=458

Disparities by Race and Ethnicity in Inpatient Hospitalizations Among Autistic Adults / Jessica E. RAST in Journal of Autism and Developmental Disorders, 54-5 (May 2024)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 54-5 (May 2024) . - p.1672-1679 Titre : Disparities by Race and Ethnicity in Inpatient Hospitalizations Among Autistic Adults Type de document : Texte imprimé et/ou numérique Auteurs : Jessica E. RAST, Auteur ; Sherira J. FERNANDES, Auteur ; Whitney SCHOTT, Auteur ; Lindsay L. SHEA, Auteur Article en page(s) : p.1672-1679 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : This study examined hospitalizations in a large, all-payer, nationally representative sample of inpatient hospitalizations in the US and identified differences in rates of hospitalization for conditions by race and ethnicity in autistic adults. Conditions examined included mood disorders, epilepsy, schizophrenia, and ambulatory care sensitive conditions (ACSCs). Compared to white, non-Hispanic autistic adults, Black, Hispanic, Asian or Pacific Islander (API), and autistic adults of another race had lower prevalence of admission for a principal diagnosis of a mood disorder. Conversely, Black, Hispanic, API, and autistic adults of another race had higher odds of admission for epilepsy than white autistic adults. Black and Hispanic autistic adults were more likely to have schizophrenia as a principal diagnosis compared to white autistic adults, but only Black autistic adults had increased odds for admission for an ACSCs compared to white autistic adults. Differences in diagnosis prevalence among hospitalized autistic adults may suggest differential access to comprehensive outpatient care that could prevent such hospitalizations, while also pointing to concerns of differential validity of diagnostic tools and treatment approaches. Insurance policy and programs should prioritize optimizing outpatient care to ensure access to care and emphasize the need for equitable treatment. En ligne : https://doi.org/10.1007/s10803-023-05911-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=530 [article] Disparities by Race and Ethnicity in Inpatient Hospitalizations Among Autistic Adults [Texte imprimé et/ou numérique] / Jessica E. RAST, Auteur ; Sherira J. FERNANDES, Auteur ; Whitney SCHOTT, Auteur ; Lindsay L. SHEA, Auteur . - p.1672-1679. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 54-5 (May 2024) . - p.1672-1679 Index. décimale : PER Périodiques Résumé : This study examined hospitalizations in a large, all-payer, nationally representative sample of inpatient hospitalizations in the US and identified differences in rates of hospitalization for conditions by race and ethnicity in autistic adults. Conditions examined included mood disorders, epilepsy, schizophrenia, and ambulatory care sensitive conditions (ACSCs). Compared to white, non-Hispanic autistic adults, Black, Hispanic, Asian or Pacific Islander (API), and autistic adults of another race had lower prevalence of admission for a principal diagnosis of a mood disorder. Conversely, Black, Hispanic, API, and autistic adults of another race had higher odds of admission for epilepsy than white autistic adults. Black and Hispanic autistic adults were more likely to have schizophrenia as a principal diagnosis compared to white autistic adults, but only Black autistic adults had increased odds for admission for an ACSCs compared to white autistic adults. Differences in diagnosis prevalence among hospitalized autistic adults may suggest differential access to comprehensive outpatient care that could prevent such hospitalizations, while also pointing to concerns of differential validity of diagnostic tools and treatment approaches. Insurance policy and programs should prioritize optimizing outpatient care to ensure access to care and emphasize the need for equitable treatment. En ligne : https://doi.org/10.1007/s10803-023-05911-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=530

"Everyone should at least get a Kia": Policymaker perspectives on equity of Medicaid among transition age autistic youth / Kaitlin H. KOFFER MILLER in Research in Autism Spectrum Disorders, 118 (October 2024)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 118 (October 2024) . - 102482 Titre : "Everyone should at least get a Kia": Policymaker perspectives on equity of Medicaid among transition age autistic youth Type de document : Texte imprimé et/ou numérique Auteurs : Kaitlin H. KOFFER MILLER, Auteur ; Dylan S. COOPER, Auteur ; Sha TAO, Auteur ; David S. MANDELL, Auteur ; Robert I. FIELD, Auteur ; Lindsay L. SHEA, Auteur Article en page(s) : 102482 Langues : Anglais (eng) Mots-clés : Mixed-methods  Disability  Health care financing  Health policy  Medicaid  Autism  Transition Index. décimale : PER Périodiques Résumé : Background This study examined the challenges faced by transition age autistic youth in accessing Medicaid services, considering the historical focus on children in autism research and services. The study aimed to explore Medicaid enrollment and support for this population. Method The study involved Medicaid and Protection & Advocacy (P&A) representatives from states with varying performance levels in eligibility, access, and service use. Discussions with experts focused on waivers, Early, Periodic, Screening, Detection, and Treatment (EPSDT), and barriers to service access. Results The findings highlighted the need to improve service access for transition age autistic youth. States identified the importance of maximizing EPDST utilization before aging out of childhood systems and pursuing waiver enrollment. These insights emphasized the significance of addressing service gaps during the transition to adulthood. Conclusions The study's implications for practice are substantial. Policymakers and service providers must acknowledge the limitedservice access for autistic individuals as they transition from child systems. The study emphasized the value of strategies like maximizing EPDST utilization and pursuing waivers to ensure ongoing support for autistic youth during their transition to adulthood. By addressing these challenges, practitioners can better meet the needs of transition age autistic individuals and facilitate their access to essential services. En ligne : https://doi.org/10.1016/j.rasd.2024.102482 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=540 [article] "Everyone should at least get a Kia": Policymaker perspectives on equity of Medicaid among transition age autistic youth [Texte imprimé et/ou numérique] / Kaitlin H. KOFFER MILLER, Auteur ; Dylan S. COOPER, Auteur ; Sha TAO, Auteur ; David S. MANDELL, Auteur ; Robert I. FIELD, Auteur ; Lindsay L. SHEA, Auteur . - 102482. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 118 (October 2024) . - 102482 Mots-clés : Mixed-methods  Disability  Health care financing  Health policy  Medicaid  Autism  Transition Index. décimale : PER Périodiques Résumé : Background This study examined the challenges faced by transition age autistic youth in accessing Medicaid services, considering the historical focus on children in autism research and services. The study aimed to explore Medicaid enrollment and support for this population. Method The study involved Medicaid and Protection & Advocacy (P&A) representatives from states with varying performance levels in eligibility, access, and service use. Discussions with experts focused on waivers, Early, Periodic, Screening, Detection, and Treatment (EPSDT), and barriers to service access. Results The findings highlighted the need to improve service access for transition age autistic youth. States identified the importance of maximizing EPDST utilization before aging out of childhood systems and pursuing waiver enrollment. These insights emphasized the significance of addressing service gaps during the transition to adulthood. Conclusions The study's implications for practice are substantial. Policymakers and service providers must acknowledge the limitedservice access for autistic individuals as they transition from child systems. The study emphasized the value of strategies like maximizing EPDST utilization and pursuing waivers to ensure ongoing support for autistic youth during their transition to adulthood. By addressing these challenges, practitioners can better meet the needs of transition age autistic individuals and facilitate their access to essential services. En ligne : https://doi.org/10.1016/j.rasd.2024.102482 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=540

Evidence from the Autism Transitions Research Project (2017-2022): Capstone review and services research recommendations / Anne M. ROUX in Autism Research, 16-3 (March 2023)  

Public ISBD [article]  inAutism Research > 16-3 (March 2023) . - p.480-496 Titre : Evidence from the Autism Transitions Research Project (2017-2022): Capstone review and services research recommendations Type de document : Texte imprimé et/ou numérique Auteurs : Anne M. ROUX, Auteur ; Lindsay L. SHEA, Auteur ; Hillary STEINBERG, Auteur ; Jessica E. RAST, Auteur ; Kristy A. ANDERSON, Auteur ; Emily HOTEZ, Auteur ; Kashia ROSENAU, Auteur ; Alice KUO, Auteur ; Evva ASSING-MURRAY, Auteur ; Paul T. SHATTUCK, Auteur Article en page(s) : p.480-496 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants. En ligne : https://doi.org/10.1002/aur.2890 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=498 [article] Evidence from the Autism Transitions Research Project (2017-2022): Capstone review and services research recommendations [Texte imprimé et/ou numérique] / Anne M. ROUX, Auteur ; Lindsay L. SHEA, Auteur ; Hillary STEINBERG, Auteur ; Jessica E. RAST, Auteur ; Kristy A. ANDERSON, Auteur ; Emily HOTEZ, Auteur ; Kashia ROSENAU, Auteur ; Alice KUO, Auteur ; Evva ASSING-MURRAY, Auteur ; Paul T. SHATTUCK, Auteur . - p.480-496. Langues : Anglais (eng) in Autism Research > 16-3 (March 2023) . - p.480-496 Index. décimale : PER Périodiques Résumé : Abstract Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants. En ligne : https://doi.org/10.1002/aur.2890 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=498

Exploring the relationship between COVID-19 and autistic adults' community participation: Findings from a two-timepoint longitudinal study / Mark S. SALZER ; Alec BECKER ; David J. VANNESS ; Brian K. LEE ; Dylan COOPER ; Jonas VENTIMIGLIA ; Lindsay L. SHEA in Research in Autism Spectrum Disorders, 109 (November 2023)  

Permalink

Feeling intimidated and uncomfortable: Established and exacerbated educational inequities experienced by black parents of autistic children / Kaitlin H. KOFFER MILLER in Autism Research, 16-5 (May 2023)  

Permalink

Self-reported community participation experiences and preferences of autistic adults / Lindsay L. SHEA in Autism, 25-5 (July 2021)  

Permalink

Self-reported community participation experiences and preferences of autistic adults / Lindsay L. SHEA in Autism, 26-5 (July 2022)  

Permalink

Self-reported service needs and barriers reported by autistic adults: Differences by gender identity / Kaitlin H. KOFFER MILLER in Research in Autism Spectrum Disorders, 92 (April 2022)  

Permalink

Service Needs Across the Lifespan for Individuals with Autism / Paul TURCOTTE in Journal of Autism and Developmental Disorders, 46-7 (July 2016)  

Permalink

Short report on navigating access to care for Medicaid-enrolled autistic youth and young adults: Examining accrual of intellectual disability diagnoses in adolescence / Meghan E. Carey in Autism, 28-3 (March 2024)  

Permalink

---

1 (1 - 12 / 12)