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

The Effect of a Parent Advocacy Intervention on Service Access for Autistic Youth: The Moderating Role of Baseline Advocacy Ability / Carly MOSER in Autism Research, 19-10 (October 2026)  

Public ISBD [article]  inAutism Research > 19-10 (October 2026) . - p.e70357 Titre : The Effect of a Parent Advocacy Intervention on Service Access for Autistic Youth: The Moderating Role of Baseline Advocacy Ability Type de document : texte imprimé Auteurs : Carly MOSER, Auteur ; Leann Smith DAWALT, Auteur ; Meghan M. BURKE, Auteur ; Julie Lounds TAYLOR, Auteur Année de publication : 2026 Article en page(s) : p.e70357 Langues : Anglais (eng) Mots-clés : adult disability services  autism  parent advocacy  transition to adulthood  treatment moderators Index. décimale : PER Périodiques Résumé : ABSTRACT Autistic youth face significant challenges accessing adult disability services as they transition out of school-based services. Advocating for Supports to Improve Service Transitions (ASSIST), a group-based program, was developed to address this issue by teaching parents about the service system and how to advocate for services for their youth. Through a randomized controlled trial, previous findings showed that ASSIST improved parent advocacy ability and increased access to government programs for youth who had exited high school. To identify which families may benefit most from ASSIST, the current study used a baseline target moderation framework to examine whether parents' baseline levels of advocacy ability (i.e., knowledge of adult services, perceived advocacy skills, and empowerment) modified the effect of intervention modality (ASSIST vs. written materials) on the primary outcome. The primary outcome for this study was having one or more service needs met at the 6- or 12-month follow-up. Participants included 138 parents of transition-aged autistic youth who received the ASSIST program or comprehensive written materials on disability services. We found that parents taking ASSIST who reported high levels of perceived advocacy skills and empowerment at baseline were more likely to have a service need met compared to those who received written materials. These findings help clarify which families are most likely to benefit from a parent advocacy program and underscore the importance of parental empowerment and perceived advocacy skills in securing needed services for their autistic youth. En ligne : https://doi.org/10.1002/aur.70357 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=594 [article] The Effect of a Parent Advocacy Intervention on Service Access for Autistic Youth: The Moderating Role of Baseline Advocacy Ability [texte imprimé] / Carly MOSER, Auteur ; Leann Smith DAWALT, Auteur ; Meghan M. BURKE, Auteur ; Julie Lounds TAYLOR, Auteur . - 2026 . - p.e70357. Langues : Anglais (eng) in Autism Research > 19-10 (October 2026) . - p.e70357 Mots-clés : adult disability services  autism  parent advocacy  transition to adulthood  treatment moderators Index. décimale : PER Périodiques Résumé : ABSTRACT Autistic youth face significant challenges accessing adult disability services as they transition out of school-based services. Advocating for Supports to Improve Service Transitions (ASSIST), a group-based program, was developed to address this issue by teaching parents about the service system and how to advocate for services for their youth. Through a randomized controlled trial, previous findings showed that ASSIST improved parent advocacy ability and increased access to government programs for youth who had exited high school. To identify which families may benefit most from ASSIST, the current study used a baseline target moderation framework to examine whether parents' baseline levels of advocacy ability (i.e., knowledge of adult services, perceived advocacy skills, and empowerment) modified the effect of intervention modality (ASSIST vs. written materials) on the primary outcome. The primary outcome for this study was having one or more service needs met at the 6- or 12-month follow-up. Participants included 138 parents of transition-aged autistic youth who received the ASSIST program or comprehensive written materials on disability services. We found that parents taking ASSIST who reported high levels of perceived advocacy skills and empowerment at baseline were more likely to have a service need met compared to those who received written materials. These findings help clarify which families are most likely to benefit from a parent advocacy program and underscore the importance of parental empowerment and perceived advocacy skills in securing needed services for their autistic youth. En ligne : https://doi.org/10.1002/aur.70357 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=594

The network structure of daily stress process components: Comparing mothers of children with and without developmental disabilities / Anat ZAIDMAN-ZAIT in Development and Psychopathology, 38-4 (October 2026)  

Public ISBD [article]  inDevelopment and Psychopathology > 38-4 (October 2026) . - p.1828-1840 Titre : The network structure of daily stress process components: Comparing mothers of children with and without developmental disabilities Type de document : texte imprimé Auteurs : Anat ZAIDMAN-ZAIT, Auteur ; David M. ALMEIDA, Auteur ; Leann Smith DAWALT, Auteur ; Robert S. DEMBO, Auteur ; Jinkuk HONG, Auteur ; Marsha R. MAILICK, Auteur Article en page(s) : p.1828-1840 Langues : Anglais (eng) Mots-clés : Caregiving  daily stress processes  depressive symptoms  developmental disabilities  mothers’  network analysis  parenting stress Index. décimale : PER Périodiques Résumé : Guided by a lifespan developmental perspective, using a network analysis approach, this study compared the structure of daily stress components in mothers of adolescents and adults with developmental disabilities (DD) and a matched sample of mothers of children without DD. We also examined whether components of daily stress were differentially associated with subsequent depression symptoms. Participants (N = 516; 100% female; M = 54.52 years, SD = 10.21; 94.2% White) were drawn from two cohorts: a DD cohort constructed from two linked longitudinal studies of families of adolescents and adults with autism and fragile X syndrome and a comparison group from the Midlife in United States study. Participants completed an 8-day daily telephone interview and reported depressive symptoms two years later. Findings demonstrated that the daily stress network of mothers of individuals with DD was significantly more interconnected than that of the comparison group. Stressor risk appraisal emerged as a central node in both groups, highlighting the role of cognitive appraisal in shaping stress responses. Negative affective reactivity linked daily stress components with later depressive symptoms, particularly in the DD group. Chronic caregiving stress may heighten interconnectivity within daily stress networks, reducing psychological flexibility and increasing vulnerability to daily stressors. En ligne : https://dx.doi.org/10.1017/S095457942610162X Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=594 [article] The network structure of daily stress process components: Comparing mothers of children with and without developmental disabilities [texte imprimé] / Anat ZAIDMAN-ZAIT, Auteur ; David M. ALMEIDA, Auteur ; Leann Smith DAWALT, Auteur ; Robert S. DEMBO, Auteur ; Jinkuk HONG, Auteur ; Marsha R. MAILICK, Auteur . - p.1828-1840. Langues : Anglais (eng) in Development and Psychopathology > 38-4 (October 2026) . - p.1828-1840 Mots-clés : Caregiving  daily stress processes  depressive symptoms  developmental disabilities  mothers’  network analysis  parenting stress Index. décimale : PER Périodiques Résumé : Guided by a lifespan developmental perspective, using a network analysis approach, this study compared the structure of daily stress components in mothers of adolescents and adults with developmental disabilities (DD) and a matched sample of mothers of children without DD. We also examined whether components of daily stress were differentially associated with subsequent depression symptoms. Participants (N = 516; 100% female; M = 54.52 years, SD = 10.21; 94.2% White) were drawn from two cohorts: a DD cohort constructed from two linked longitudinal studies of families of adolescents and adults with autism and fragile X syndrome and a comparison group from the Midlife in United States study. Participants completed an 8-day daily telephone interview and reported depressive symptoms two years later. Findings demonstrated that the daily stress network of mothers of individuals with DD was significantly more interconnected than that of the comparison group. Stressor risk appraisal emerged as a central node in both groups, highlighting the role of cognitive appraisal in shaping stress responses. Negative affective reactivity linked daily stress components with later depressive symptoms, particularly in the DD group. Chronic caregiving stress may heighten interconnectivity within daily stress networks, reducing psychological flexibility and increasing vulnerability to daily stressors. En ligne : https://dx.doi.org/10.1017/S095457942610162X Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=594

The Vocational and Educational Index: An Update to the Vocational Index to Reflect Contemporary Postsecondary Educational Options for Autistic Adults / Julie Lounds TAYLOR in Journal of Autism and Developmental Disorders, 56-7 (July 2026)  

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