Autism through midlife: trajectories of symptoms, behavioral functioning, and health / Jinkuk HONG in Journal of Neurodevelopmental Disorders, 15 (2023)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 15 (2023) Titre : Autism through midlife: trajectories of symptoms, behavioral functioning, and health Type de document : texte imprimé Auteurs : Jinkuk HONG, Auteur ; Leann Smith DAWALT, Auteur ; Julie Lounds TAYLOR, Auteur ; Aasma HAIDER, Auteur ; Marsha MAILICK, Auteur Langues : Anglais (eng) Mots-clés : Adult  Adolescent  Humans  Autistic Disorder/complications  Activities of Daily Living  Aging  Cognition  Behavioral Symptoms  Accelerated longitudinal design  Autism in adulthood  Developmental trajectories  Functioning  Health  Midlife and aging  Symptoms Index. décimale : PER Périodiques Résumé : BACKGROUND: This study describes change in autism symptoms, behavioral functioning, and health measured prospectively over 22 years. Most studies tracking developmental trajectories have focused on autism during childhood, although adulthood is the longest stage of the life course. A robust understanding of how autistic people change through midlife and into older age has yet to be obtained. METHODS: Using an accelerated longitudinal design with 9 waves of data, developmental trajectories were estimated from adolescence through midlife and into early old age in a community-based cohort (n = 406). The overall aim was to determine whether there were age-related increases or decreases, whether the change was linear or curvilinear, and whether these trajectories differed between those who have ID and those who have average or above-average intellectual functioning. Subsequently, the slopes of the trajectories were evaluated to determine if they differed depending on age when the study began, with the goal of identifying possible cohort effects. RESULTS: There were significant trajectories of age-related change for all but one of the measures, although different measures manifested different patterns. Most autism symptoms improved through adulthood, while health worsened. An inverted U-shaped curve best described change for repetitive behavior symptoms, activities of daily living, maladaptive behaviors, and social interaction. For these measures, improved functioning was evident from adolescence until midlife. Then change leveled off, with worsening functioning from later midlife into early older age. Additionally, differences between autistic individuals with and without ID were evident. Although those who have ID had poorer levels of functioning, there were some indications that those without ID had accelerating challenges in their aging years that were not evident in those with ID - increases in medications for physical health problems and worsening repetitive behaviors. CONCLUSIONS: Meeting the needs of the increasingly large population of autistic adults in midlife and old age requires a nuanced understanding of life course trajectories across the long stretch of adulthood and across multiple domains. Given the heterogeneity of autism, it will be important not to generalize across sub-groups, for example those who are minimally verbal and those who have above-average intellectual functioning. En ligne : https://dx.doi.org/10.1186/s11689-023-09505-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=575 [article] Autism through midlife: trajectories of symptoms, behavioral functioning, and health [texte imprimé] / Jinkuk HONG, Auteur ; Leann Smith DAWALT, Auteur ; Julie Lounds TAYLOR, Auteur ; Aasma HAIDER, Auteur ; Marsha MAILICK, Auteur. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 15 (2023) Mots-clés : Adult  Adolescent  Humans  Autistic Disorder/complications  Activities of Daily Living  Aging  Cognition  Behavioral Symptoms  Accelerated longitudinal design  Autism in adulthood  Developmental trajectories  Functioning  Health  Midlife and aging  Symptoms Index. décimale : PER Périodiques Résumé : BACKGROUND: This study describes change in autism symptoms, behavioral functioning, and health measured prospectively over 22 years. Most studies tracking developmental trajectories have focused on autism during childhood, although adulthood is the longest stage of the life course. A robust understanding of how autistic people change through midlife and into older age has yet to be obtained. METHODS: Using an accelerated longitudinal design with 9 waves of data, developmental trajectories were estimated from adolescence through midlife and into early old age in a community-based cohort (n = 406). The overall aim was to determine whether there were age-related increases or decreases, whether the change was linear or curvilinear, and whether these trajectories differed between those who have ID and those who have average or above-average intellectual functioning. Subsequently, the slopes of the trajectories were evaluated to determine if they differed depending on age when the study began, with the goal of identifying possible cohort effects. RESULTS: There were significant trajectories of age-related change for all but one of the measures, although different measures manifested different patterns. Most autism symptoms improved through adulthood, while health worsened. An inverted U-shaped curve best described change for repetitive behavior symptoms, activities of daily living, maladaptive behaviors, and social interaction. For these measures, improved functioning was evident from adolescence until midlife. Then change leveled off, with worsening functioning from later midlife into early older age. Additionally, differences between autistic individuals with and without ID were evident. Although those who have ID had poorer levels of functioning, there were some indications that those without ID had accelerating challenges in their aging years that were not evident in those with ID - increases in medications for physical health problems and worsening repetitive behaviors. CONCLUSIONS: Meeting the needs of the increasingly large population of autistic adults in midlife and old age requires a nuanced understanding of life course trajectories across the long stretch of adulthood and across multiple domains. Given the heterogeneity of autism, it will be important not to generalize across sub-groups, for example those who are minimally verbal and those who have above-average intellectual functioning. En ligne : https://dx.doi.org/10.1186/s11689-023-09505-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=575

Career patterns of adults with autism through late midlife / Emily J. HICKEY in Research in Autism, 133 (May 2026)  

Public ISBD [article]  inResearch in Autism > 133 (May 2026) . - p.202909 Titre : Career patterns of adults with autism through late midlife Type de document : texte imprimé Auteurs : Emily J. HICKEY, Auteur ; Leann Smith DAWALT, Auteur ; Katherine SZIDON, Auteur ; Julie Lounds TAYLOR, Auteur ; Marsha R. MAILICK, Auteur Article en page(s) : p.202909 Langues : Anglais (eng) Mots-clés : Autism  Employment  Career  Adulthood  Midlife Index. décimale : PER Périodiques Résumé : Little is known about the long-term careers of adults with autism. Here we report the employment patterns of adults with autism based on their engagement in distinct categories of employment (agency-based, supported, and competitive employment) from young adulthood through midlife. Persistent patterns of unemployment or unstable employment were also tracked across these life stages. The current study drew data from a longitudinal study of adults with autism and their families, and focused on those for whom at least four points of data were available on employment after high school exit across an average of 14 years (n = 217 adults with autism; 155 with intellectual disability [ID], 62 without ID; average age of the autistic adults at their first available time point after high school exit was 26.23 (SD=7.14), range: 18–48; and, at their final available time point was 40.94 (SD=8.97), range: 25–68). Five mutually-exclusive career categories emerged from a consensus coding process: 1) Primarily unemployed (16% of the sample); 2) Primarily agency-based employment (48%); 3) Primarily supported employment (11%); 4) Primarily competitive employment (12%); and 5) Unstable employment (13%). Descriptive results suggest that adults with autism who do not have ID may be at particular risk for unemployment (23%) or unstable patterns of employment (20%), although nearly the same percentage had sustained competitive employment (37%), while those who had ID often had an agency support system that helped maintain engagement in work (64%). Our study can inform employment expectations and planning for adults with autism, their family members, and vocational and transition support staff. En ligne : https://doi.org/10.1016/j.reia.2026.202909 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=585 [article] Career patterns of adults with autism through late midlife [texte imprimé] / Emily J. HICKEY, Auteur ; Leann Smith DAWALT, Auteur ; Katherine SZIDON, Auteur ; Julie Lounds TAYLOR, Auteur ; Marsha R. MAILICK, Auteur . - p.202909. Langues : Anglais (eng) in Research in Autism > 133 (May 2026) . - p.202909 Mots-clés : Autism  Employment  Career  Adulthood  Midlife Index. décimale : PER Périodiques Résumé : Little is known about the long-term careers of adults with autism. Here we report the employment patterns of adults with autism based on their engagement in distinct categories of employment (agency-based, supported, and competitive employment) from young adulthood through midlife. Persistent patterns of unemployment or unstable employment were also tracked across these life stages. The current study drew data from a longitudinal study of adults with autism and their families, and focused on those for whom at least four points of data were available on employment after high school exit across an average of 14 years (n = 217 adults with autism; 155 with intellectual disability [ID], 62 without ID; average age of the autistic adults at their first available time point after high school exit was 26.23 (SD=7.14), range: 18–48; and, at their final available time point was 40.94 (SD=8.97), range: 25–68). Five mutually-exclusive career categories emerged from a consensus coding process: 1) Primarily unemployed (16% of the sample); 2) Primarily agency-based employment (48%); 3) Primarily supported employment (11%); 4) Primarily competitive employment (12%); and 5) Unstable employment (13%). Descriptive results suggest that adults with autism who do not have ID may be at particular risk for unemployment (23%) or unstable patterns of employment (20%), although nearly the same percentage had sustained competitive employment (37%), while those who had ID often had an agency support system that helped maintain engagement in work (64%). Our study can inform employment expectations and planning for adults with autism, their family members, and vocational and transition support staff. En ligne : https://doi.org/10.1016/j.reia.2026.202909 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=585

Effects of a parent advocacy intervention on service access for transition-aged autistic youth: a multisite randomized controlled trial / Julie Lounds TAYLOR in Journal of Child Psychology and Psychiatry, 67-2 (February 2026)  

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 67-2 (February 2026) . - p.212-224 Titre : Effects of a parent advocacy intervention on service access for transition-aged autistic youth: a multisite randomized controlled trial Type de document : texte imprimé Auteurs : Julie Lounds TAYLOR, Auteur ; Leann Smith DAWALT, Auteur ; Meghan M. BURKE, Auteur ; Meng XU, Auteur ; James C. SLAUGHTER, Auteur Article en page(s) : p.212-224 Langues : Anglais (eng) Mots-clés : Autism  services  transition to adulthood  randomized controlled trial Index. décimale : PER Périodiques Résumé : Background Autistic youth in the United States face many challenges accessing services as they transition to adulthood. Improving parents' ability to advocate for services is a promising way to improve service access. The current study tested whether participation in an intervention to improve parents' ability to advocate for adult services (called Advocating for Supports to Improve Service Transitions or ASSIST) led to increased service access for their transition-aged autistic youth. Methods Using a multisite, single-blind parallel-group design, we randomized 185 parents of transition-aged autistic youth to either a treatment condition that received the ASSIST intervention, or a control condition that received comprehensive written information about adult services. Primary outcomes for this report ? number of government programs that fund services and direct services received by the youth ? were collected via parental interview at baseline, six, and 12?months after intervention. Results Primary analyses found no significant treatment effects on service access. Subgroup analyses, however, detected treatment effects for families of youth who had exited high school prior to their families taking ASSIST. Among those families, youth from the treatment group were receiving more government programs that fund services at 6?months after intervention compared with youth from the control group. Conclusions We cannot conclude from our findings that ASSIST improved access to services, though there was some evidence to suggest increased access to government programs that fund services for families of autistic youth who had exited high school. Future research should investigate which families can translate written information about adult services (i.e. the control condition) into improved service access, and which families need more individualized support beyond a group-based class to see improvements in service access. En ligne : https://doi.org/10.1111/jcpp.70036 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=579 [article] Effects of a parent advocacy intervention on service access for transition-aged autistic youth: a multisite randomized controlled trial [texte imprimé] / Julie Lounds TAYLOR, Auteur ; Leann Smith DAWALT, Auteur ; Meghan M. BURKE, Auteur ; Meng XU, Auteur ; James C. SLAUGHTER, Auteur . - p.212-224. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 67-2 (February 2026) . - p.212-224 Mots-clés : Autism  services  transition to adulthood  randomized controlled trial Index. décimale : PER Périodiques Résumé : Background Autistic youth in the United States face many challenges accessing services as they transition to adulthood. Improving parents' ability to advocate for services is a promising way to improve service access. The current study tested whether participation in an intervention to improve parents' ability to advocate for adult services (called Advocating for Supports to Improve Service Transitions or ASSIST) led to increased service access for their transition-aged autistic youth. Methods Using a multisite, single-blind parallel-group design, we randomized 185 parents of transition-aged autistic youth to either a treatment condition that received the ASSIST intervention, or a control condition that received comprehensive written information about adult services. Primary outcomes for this report ? number of government programs that fund services and direct services received by the youth ? were collected via parental interview at baseline, six, and 12?months after intervention. Results Primary analyses found no significant treatment effects on service access. Subgroup analyses, however, detected treatment effects for families of youth who had exited high school prior to their families taking ASSIST. Among those families, youth from the treatment group were receiving more government programs that fund services at 6?months after intervention compared with youth from the control group. Conclusions We cannot conclude from our findings that ASSIST improved access to services, though there was some evidence to suggest increased access to government programs that fund services for families of autistic youth who had exited high school. Future research should investigate which families can translate written information about adult services (i.e. the control condition) into improved service access, and which families need more individualized support beyond a group-based class to see improvements in service access. En ligne : https://doi.org/10.1111/jcpp.70036 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=579

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