Caregiver employment changes and care coordination in families with children with autism / Andrea J. JAFFE in Research in Autism, 135 (July 2026)  

Public ISBD [article]  inResearch in Autism > 135 (July 2026) . - 202930 Titre : Caregiver employment changes and care coordination in families with children with autism Type de document : texte imprimé Auteurs : Andrea J. JAFFE, Auteur ; Anne M. ROUX, Auteur ; Kristy A. ANDERSON, Auteur ; Vijay VASUDEVAN, Auteur ; Arianna ESPOSITO, Auteur ; Stuart SPIELMAN, Auteur ; Jessica E. RAST, Auteur Année de publication : 2026 Article en page(s) : 202930 Langues : Anglais (eng) Mots-clés : Autism  Parental employment  Care coordination  Children with special health care needs Index. décimale : PER Périodiques Résumé : Purpose To examine changes in employment of caregivers of children with autism and children with special health care needs (CSHCN). Methods This study used the National Survey of Children’s Health to examine the prevalence of employment changes of caregivers, including reducing hours or stopping work and avoiding changing jobs to maintain insurance. We used multivariable logistic regression to estimate associations of care coordination with both employment outcomes. Finally, we examined differences by age and insurance type, stratified by care coordination status, to examine potential interaction of these variables in children with autism and CSHCN. Results Caregivers of children with autism were more likely to experience changes in their employment than CSHCN. Caregivers who did not receive needed care coordination had 2.21 times the odds of reducing hours or stopping work than those who received needed care coordination (95% CI 1.89, 2.58). Age was also associated with employment changes for caregivers of children and autism and CSHCN. For caregivers of children with autism ages 3–5 years, the rate of reduced hours or stopped working was triple for those who did not receive needed care coordination (59%) compared to those who did (21%). Conclusions Caregivers may reduce employment to support their child in receiving needed care. The findings from this study demonstrate the need for further research to examine the provision of care coordination and the cost-benefit analysis of public funding for care coordination to improve caregiver employment outcomes and create more support for families with a child with autism. En ligne : https://doi.org/10.1016/j.reia.2026.202930 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=588 [article] Caregiver employment changes and care coordination in families with children with autism [texte imprimé] / Andrea J. JAFFE, Auteur ; Anne M. ROUX, Auteur ; Kristy A. ANDERSON, Auteur ; Vijay VASUDEVAN, Auteur ; Arianna ESPOSITO, Auteur ; Stuart SPIELMAN, Auteur ; Jessica E. RAST, Auteur . - 2026 . - 202930. Langues : Anglais (eng) in Research in Autism > 135 (July 2026) . - 202930 Mots-clés : Autism  Parental employment  Care coordination  Children with special health care needs Index. décimale : PER Périodiques Résumé : Purpose To examine changes in employment of caregivers of children with autism and children with special health care needs (CSHCN). Methods This study used the National Survey of Children’s Health to examine the prevalence of employment changes of caregivers, including reducing hours or stopping work and avoiding changing jobs to maintain insurance. We used multivariable logistic regression to estimate associations of care coordination with both employment outcomes. Finally, we examined differences by age and insurance type, stratified by care coordination status, to examine potential interaction of these variables in children with autism and CSHCN. Results Caregivers of children with autism were more likely to experience changes in their employment than CSHCN. Caregivers who did not receive needed care coordination had 2.21 times the odds of reducing hours or stopping work than those who received needed care coordination (95% CI 1.89, 2.58). Age was also associated with employment changes for caregivers of children and autism and CSHCN. For caregivers of children with autism ages 3–5 years, the rate of reduced hours or stopped working was triple for those who did not receive needed care coordination (59%) compared to those who did (21%). Conclusions Caregivers may reduce employment to support their child in receiving needed care. The findings from this study demonstrate the need for further research to examine the provision of care coordination and the cost-benefit analysis of public funding for care coordination to improve caregiver employment outcomes and create more support for families with a child with autism. En ligne : https://doi.org/10.1016/j.reia.2026.202930 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=588

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 Auteurs : Anne M. ROUX, Auteur ; Lindsay L. SHEA, Auteur ; Hillary STEINBERG, Auteur ; Jessica E. RAST, Auteur ; Kristy A. ANDERSON, Auteur ; Emily HOTEZ, Auteur ; Kashia A. 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] / Anne M. ROUX, Auteur ; Lindsay L. SHEA, Auteur ; Hillary STEINBERG, Auteur ; Jessica E. RAST, Auteur ; Kristy A. ANDERSON, Auteur ; Emily HOTEZ, Auteur ; Kashia A. 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

Evidence of item bias in a national flourishing measure for autistic youth / Samantha M. ROSS in Autism Research, 16-4 (April 2023)  

Public ISBD [article]  inAutism Research > 16-4 (April 2023) . - p.841-854 Titre : Evidence of item bias in a national flourishing measure for autistic youth Type de document : texte imprimé Auteurs : Samantha M. ROSS, Auteur ; Justin A. HAEGELE, Auteur ; Kristy A. ANDERSON, Auteur ; Sean HEALY, Auteur Article en page(s) : p.841-854 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Flourishing is a positive health indicator that aligns with strengths-based perspectives and measures within autism research. Flourishing indicators were recently included in the National Survey of Children's Health (NSCH) and have been used to evidence disparities in flourishing experienced by autistic children compared to non-autistic peers. Yet, little has been done to examine the utility of standard flourishing items for this population. This study examined the NSCH caregiver-reported flourishing items for measurement item bias. A cross-sectional, representative sample of autistic and non-autistic US children aged 6-17 years (n = 41,691) was drawn from the 2018-2019 NSCH public dataset. A confirmatory factor analysis using a multiple indicators and multiple causes model (MIMIC-CFA) was conducted to (1) test for differential item functioning (DIF; i.e., measurement bias); and (2) estimate latent mean group differences after controlling for DIF. Findings supported a 3-factor (social competence, school motivation, and behavioral control), 10-item model structure consistent with past literature, yet measurement bias was evident for 6 of the 10 items. Persistent group differences, after accounting for DIF and covariates, indicates that caregivers of autistic children perceive their children are experiencing meaningfully lower flourishing outcomes compared to caregivers of non-autistic children. However, evidence of measurement bias for items related to the social competence dimension calls into question the applicability of this measure for autistic children. Further interpretation of group differences and use of this measure should be approached with caution. En ligne : https://doi.org/10.1002/aur.2900 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Evidence of item bias in a national flourishing measure for autistic youth [texte imprimé] / Samantha M. ROSS, Auteur ; Justin A. HAEGELE, Auteur ; Kristy A. ANDERSON, Auteur ; Sean HEALY, Auteur . - p.841-854. Langues : Anglais (eng) in Autism Research > 16-4 (April 2023) . - p.841-854 Index. décimale : PER Périodiques Résumé : Abstract Flourishing is a positive health indicator that aligns with strengths-based perspectives and measures within autism research. Flourishing indicators were recently included in the National Survey of Children's Health (NSCH) and have been used to evidence disparities in flourishing experienced by autistic children compared to non-autistic peers. Yet, little has been done to examine the utility of standard flourishing items for this population. This study examined the NSCH caregiver-reported flourishing items for measurement item bias. A cross-sectional, representative sample of autistic and non-autistic US children aged 6-17 years (n = 41,691) was drawn from the 2018-2019 NSCH public dataset. A confirmatory factor analysis using a multiple indicators and multiple causes model (MIMIC-CFA) was conducted to (1) test for differential item functioning (DIF; i.e., measurement bias); and (2) estimate latent mean group differences after controlling for DIF. Findings supported a 3-factor (social competence, school motivation, and behavioral control), 10-item model structure consistent with past literature, yet measurement bias was evident for 6 of the 10 items. Persistent group differences, after accounting for DIF and covariates, indicates that caregivers of autistic children perceive their children are experiencing meaningfully lower flourishing outcomes compared to caregivers of non-autistic children. However, evidence of measurement bias for items related to the social competence dimension calls into question the applicability of this measure for autistic children. Further interpretation of group differences and use of this measure should be approached with caution. En ligne : https://doi.org/10.1002/aur.2900 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

National and State Trends in autistic Adult Supplemental Security Income Awardees: 2005-2019 / Kristy A. ANDERSON in Journal of Autism and Developmental Disorders, 52-8 (August 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-8 (August 2022) . - p.3547-3559 Titre : National and State Trends in autistic Adult Supplemental Security Income Awardees: 2005-2019 Type de document : texte imprimé Auteurs : Kristy A. ANDERSON, Auteur ; Jeffrey HEMMETER, Auteur ; David WITTENBURG, Auteur ; Julia BALLER, Auteur ; Anne M. ROUX, Auteur ; Jessica E. RAST, Auteur ; Paul T. SHATTUCK, Auteur Article en page(s) : p.3547-3559 Langues : Anglais (eng) Mots-clés : Adolescent  Adult  Autism Spectrum Disorder  Autistic Disorder/epidemiology  Humans  Income  Social Security  United States/epidemiology  United States Social Security Administration  Young Adult  Adults  Autism  Policy  Poverty  Supplemental Security Income (SSI) Index. décimale : PER Périodiques Résumé : This paper used Social Security Administration program data from 2005 to 2019 to examine national- and state-level changes in the number of new adult supplemental security income (SSI) awardees on the autism spectrum relative to awardees with intellectual disability and other mental health disorders. We identified three main findings: the number of autistic awards increased between 2005 and 2019 when awards for all other mental health disorders declined; roughly nine out of every 10 autistic adult awardees were between ages 18-25 years; there was variation in the growth of autistic awards across states. These findings support the need to consider geographic and age differences in SSI program participation among autistic adults and determine the underlying causes. En ligne : http://dx.doi.org/10.1007/s10803-021-05215-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=485 [article] National and State Trends in autistic Adult Supplemental Security Income Awardees: 2005-2019 [texte imprimé] / Kristy A. ANDERSON, Auteur ; Jeffrey HEMMETER, Auteur ; David WITTENBURG, Auteur ; Julia BALLER, Auteur ; Anne M. ROUX, Auteur ; Jessica E. RAST, Auteur ; Paul T. SHATTUCK, Auteur . - p.3547-3559. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-8 (August 2022) . - p.3547-3559 Mots-clés : Adolescent  Adult  Autism Spectrum Disorder  Autistic Disorder/epidemiology  Humans  Income  Social Security  United States/epidemiology  United States Social Security Administration  Young Adult  Adults  Autism  Policy  Poverty  Supplemental Security Income (SSI) Index. décimale : PER Périodiques Résumé : This paper used Social Security Administration program data from 2005 to 2019 to examine national- and state-level changes in the number of new adult supplemental security income (SSI) awardees on the autism spectrum relative to awardees with intellectual disability and other mental health disorders. We identified three main findings: the number of autistic awards increased between 2005 and 2019 when awards for all other mental health disorders declined; roughly nine out of every 10 autistic adult awardees were between ages 18-25 years; there was variation in the growth of autistic awards across states. These findings support the need to consider geographic and age differences in SSI program participation among autistic adults and determine the underlying causes. En ligne : http://dx.doi.org/10.1007/s10803-021-05215-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=485

Postsecondary Expectations of High-School Students With Autism Spectrum Disorders / Kristy A. ANDERSON in Focus on Autism and Other Developmental Disabilities, 31-1 (March 2016)  

Public ISBD [article]  inFocus on Autism and Other Developmental Disabilities > 31-1 (March 2016) . - p.16-26 Titre : Postsecondary Expectations of High-School Students With Autism Spectrum Disorders Type de document : texte imprimé Auteurs : Kristy A. ANDERSON, Auteur ; T.A. Meridian MCDONALD, Auteur ; Deirdre EDSALL, Auteur ; Leann E. SMITH, Auteur ; Julie LOUNDS TAYLOR, Auteur Article en page(s) : p.16-26 Langues : Anglais (eng) Mots-clés : autism  adolescence  transition  emerging adulthood Index. décimale : PER Périodiques Résumé : This study examined the perceptions of adulthood among 31 high-school students with autism spectrum disorder (ASD). We had two research aims: (a) to report students’ postsecondary expectations in terms of school, work, friendships, and living arrangement and (b) to describe how our sample defined adulthood. To better compare our sample’s criteria of adulthood with the criteria traditionally endorsed in secondary schools, we used a directed content analysis approach. Data were derived from a semi-structured interview that questioned students about friendships, activities, and the transition to adulthood. The majority of students expected to attain traditional markers of adulthood after high school. For some the pathways to achieving these outcomes were narrowly defined and perceived as a linear process. Independence, maturity, and personal responsibility were the most highly endorsed characteristics of adulthood, followed by chronological age and traditional markers. Implications for transition planning and adult services are discussed. En ligne : http://dx.doi.org/10.1177/1088357615610107 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=282 [article] Postsecondary Expectations of High-School Students With Autism Spectrum Disorders [texte imprimé] / Kristy A. ANDERSON, Auteur ; T.A. Meridian MCDONALD, Auteur ; Deirdre EDSALL, Auteur ; Leann E. SMITH, Auteur ; Julie LOUNDS TAYLOR, Auteur . - p.16-26. Langues : Anglais (eng) in Focus on Autism and Other Developmental Disabilities > 31-1 (March 2016) . - p.16-26 Mots-clés : autism  adolescence  transition  emerging adulthood Index. décimale : PER Périodiques Résumé : This study examined the perceptions of adulthood among 31 high-school students with autism spectrum disorder (ASD). We had two research aims: (a) to report students’ postsecondary expectations in terms of school, work, friendships, and living arrangement and (b) to describe how our sample defined adulthood. To better compare our sample’s criteria of adulthood with the criteria traditionally endorsed in secondary schools, we used a directed content analysis approach. Data were derived from a semi-structured interview that questioned students about friendships, activities, and the transition to adulthood. The majority of students expected to attain traditional markers of adulthood after high school. For some the pathways to achieving these outcomes were narrowly defined and perceived as a linear process. Independence, maturity, and personal responsibility were the most highly endorsed characteristics of adulthood, followed by chronological age and traditional markers. Implications for transition planning and adult services are discussed. En ligne : http://dx.doi.org/10.1177/1088357615610107 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=282

Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder / Kristy A. ANDERSON in Autism, 18-5 (July 2014)  

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Prevalence of Substance Use Disorder Among Autistic Youth With and Without Co-Occurring Mental Health Conditions and a History of Trauma / Jeanette M. GARCIA in Autism Research, 18-8 (August 2025)  

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Social Participation Among Young Adults with an Autism Spectrum Disorder / Gael I. ORSMOND in Journal of Autism and Developmental Disorders, 43-11 (November 2013)  

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The Economic Impacts of COVID-19 on Autistic Children and Their Families / Kristy A. ANDERSON in Journal of Autism and Developmental Disorders, 55-4 (April 2024)  

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Vocational Rehabilitation Service Utilization and Employment Outcomes Among Secondary Students on the Autism Spectrum / Anne M. ROUX in Journal of Autism and Developmental Disorders, 51-1 (January 2021)  

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