Family experiences with supplemental social security income and legal guardianship for autistic adults: A mixed-methods study / Emily F. FERGUSON in Research in Autism Spectrum Disorders, 119 (January 2025)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 119 (January 2025) . - p.102522 Titre : Family experiences with supplemental social security income and legal guardianship for autistic adults: A mixed-methods study Type de document : texte imprimé Auteurs : Emily F. FERGUSON, Auteur ; Elaine B. CLARKE, Auteur ; Noa SCHISTERMAN, Auteur ; Catherine LORD, Auteur Article en page(s) : p.102522 Langues : Anglais (eng) Mots-clés : Social services  Transition to adulthood  Legal issues  Community participation  Supplemental Social Security Income  Guardianship  Autism Spectrum Disorder Index. décimale : PER Périodiques Résumé : Background Family interactions with the Supplemental Social Security Income (SSI) program and the decision to pursue legal guardianship are poorly understood in services research for autistic adults. Methods We conducted a mixed-methods study and incorporated quantitative survey data from 122 autistic adults in an existing longitudinal cohort with qualitative interviews with 12 autistic adults and/or legal guardians. We explored sociodemographic, developmental, and behavioral features associated with the likelihood of having SSI and a legal guardian at 25 years old. Spoken interviews were transcribed verbatim, and interviews were analyzed using a rapid qualitative analytic approach. Results There were quantitative differences in whether families were able to obtain SSI and guardianship based on intelligence quotient (IQ) scores, adaptive behavior, and autistic characteristics, but not by race, ethnicity, or maternal education. Qualitative data analysis revealed six themes that highlighted the challenges associated with obtaining and maintaining SSI, along with the complex, nuanced decisions associated with legal guardianship. Families noted many challenges in navigating these procedures and some potential benefits for each unique circumstance. Conclusions These findings offer new perspectives on experiences associated with pursuing SSI benefits and legal guardianship for autistic adults, including similarities and key differences in these procedures. Findings also provide suggestions for future research to improve coordination and supports for families throughout adulthood. En ligne : https://dx.doi.org/10.1016/j.rasd.2024.102522 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=545 [article] Family experiences with supplemental social security income and legal guardianship for autistic adults: A mixed-methods study [texte imprimé] / Emily F. FERGUSON, Auteur ; Elaine B. CLARKE, Auteur ; Noa SCHISTERMAN, Auteur ; Catherine LORD, Auteur . - p.102522. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 119 (January 2025) . - p.102522 Mots-clés : Social services  Transition to adulthood  Legal issues  Community participation  Supplemental Social Security Income  Guardianship  Autism Spectrum Disorder Index. décimale : PER Périodiques Résumé : Background Family interactions with the Supplemental Social Security Income (SSI) program and the decision to pursue legal guardianship are poorly understood in services research for autistic adults. Methods We conducted a mixed-methods study and incorporated quantitative survey data from 122 autistic adults in an existing longitudinal cohort with qualitative interviews with 12 autistic adults and/or legal guardians. We explored sociodemographic, developmental, and behavioral features associated with the likelihood of having SSI and a legal guardian at 25 years old. Spoken interviews were transcribed verbatim, and interviews were analyzed using a rapid qualitative analytic approach. Results There were quantitative differences in whether families were able to obtain SSI and guardianship based on intelligence quotient (IQ) scores, adaptive behavior, and autistic characteristics, but not by race, ethnicity, or maternal education. Qualitative data analysis revealed six themes that highlighted the challenges associated with obtaining and maintaining SSI, along with the complex, nuanced decisions associated with legal guardianship. Families noted many challenges in navigating these procedures and some potential benefits for each unique circumstance. Conclusions These findings offer new perspectives on experiences associated with pursuing SSI benefits and legal guardianship for autistic adults, including similarities and key differences in these procedures. Findings also provide suggestions for future research to improve coordination and supports for families throughout adulthood. En ligne : https://dx.doi.org/10.1016/j.rasd.2024.102522 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=545

What Factors Have Been the Most Helpful and Harmful and When? Identifying Key Impacts on Psychosocial Development According to Autistic Adults and Caregivers / Juliette E. LERNER in Journal of Autism and Developmental Disorders, 56-9 (September 2026)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 56-9 (September 2026) . - p.3456-3472 Titre : What Factors Have Been the Most Helpful and Harmful and When? Identifying Key Impacts on Psychosocial Development According to Autistic Adults and Caregivers Type de document : texte imprimé Auteurs : Juliette E. LERNER, Auteur ; Hillary SCHILTZ, Auteur ; Noa SCHISTERMAN, Auteur ; Sonja ZIEGLER, Auteur ; Catherine LORD, Auteur Article en page(s) : p.3456-3472 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Few studies have asked autistic adults and caregivers directly about what has most positively and negatively impacted their lives. This study sought to: (a) identify positive and negative factors experienced by autistic adults and caregivers; (b) test for within-subject differences in endorsement of promotive factors reported specific to four stages of development; and (c) test for differences in factors between adults with varying cognitive ability (i.e., less cognitively able [LCA; verbal IQ < 70] and more cognitively able [MCA; verbal IQ ≥ 70]). Participants included 91 autistic adults and caregivers. Autistic adults’ VIQs ranged from 4 to 139. Participants completed a modified version of the Social/Emotional Functioning Interview which consists of open-ended questions about positive and negative factors experienced across development. Autistic adults and caregivers, regardless of cognitive abilities, frequently reported people supports as more helpful than specific services, aspects of education, or generative activities from early childhood through adulthood. For both cognitive groups, generative activities were increasingly important after childhood. Services were more frequently identified as helpful by LCA caregivers in adulthood, while education was reported more by MCA caregivers and autistic adults. Differences by cognitive ability in negative factors included that more LCA caregivers reported poorly prepared professionals/caregivers as disruptive, while more MCA caregivers and autistic adults reported family conflict and bullying. Positive and negative factors identified through interviews of lived experiences can inform targeted care based on strengths and needs across cognitive abilities and life stages. En ligne : https://doi.org/10.1007/s10803-025-06800-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=591 [article] What Factors Have Been the Most Helpful and Harmful and When? Identifying Key Impacts on Psychosocial Development According to Autistic Adults and Caregivers [texte imprimé] / Juliette E. LERNER, Auteur ; Hillary SCHILTZ, Auteur ; Noa SCHISTERMAN, Auteur ; Sonja ZIEGLER, Auteur ; Catherine LORD, Auteur . - p.3456-3472. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 56-9 (September 2026) . - p.3456-3472 Index. décimale : PER Périodiques Résumé : Few studies have asked autistic adults and caregivers directly about what has most positively and negatively impacted their lives. This study sought to: (a) identify positive and negative factors experienced by autistic adults and caregivers; (b) test for within-subject differences in endorsement of promotive factors reported specific to four stages of development; and (c) test for differences in factors between adults with varying cognitive ability (i.e., less cognitively able [LCA; verbal IQ < 70] and more cognitively able [MCA; verbal IQ ≥ 70]). Participants included 91 autistic adults and caregivers. Autistic adults’ VIQs ranged from 4 to 139. Participants completed a modified version of the Social/Emotional Functioning Interview which consists of open-ended questions about positive and negative factors experienced across development. Autistic adults and caregivers, regardless of cognitive abilities, frequently reported people supports as more helpful than specific services, aspects of education, or generative activities from early childhood through adulthood. For both cognitive groups, generative activities were increasingly important after childhood. Services were more frequently identified as helpful by LCA caregivers in adulthood, while education was reported more by MCA caregivers and autistic adults. Differences by cognitive ability in negative factors included that more LCA caregivers reported poorly prepared professionals/caregivers as disruptive, while more MCA caregivers and autistic adults reported family conflict and bullying. Positive and negative factors identified through interviews of lived experiences can inform targeted care based on strengths and needs across cognitive abilities and life stages. En ligne : https://doi.org/10.1007/s10803-025-06800-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=591

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