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Faire une suggestionComparative Analysis of Autistic Women Across the Lifespan: Childhood vs. Adulthood Diagnosis / Maire Claire DIEMER in Autism Research, 18-8 (August 2025)
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Titre : Comparative Analysis of Autistic Women Across the Lifespan: Childhood vs. Adulthood Diagnosis Type de document : texte imprimé Auteurs : Maire Claire DIEMER, Auteur ; Rosmary ROS-DEMARIZE, Auteur ; Catherine BRADLEY, Auteur ; Stephen M. KANNE, Auteur ; So Hyun KIM, Auteur ; Julia PARISH-MORRIS, Auteur ; LeeAnne GREEN SNYDER, Auteur ; Ericka WODKA, Auteur ; THE SPARK CONSORTIUM, Auteur ; Laura A. CARPENTER, Auteur Article en page(s) : p.1651-1663 Langues : Anglais (eng) Mots-clés : adults autism co-occurring conditions LGBT lifespan SPARK women Index. décimale : PER Périodiques Résumé : ABSTRACT This study investigates the experiences of autistic adult women, a group understudied in autism research due to a predominant focus on early identification/intervention, restrictive research participation criteria, and differing rates of diagnosis by sex. This study characterizes a cohort of autistic adult women (n 1424) across various dimensions including demographics, relationships, education, employment, income, well-being, and co-occurring psychiatric conditions. It also explores differences among those diagnosed with autism as children versus those diagnosed as adults. The sample was limited to women able to read and provide independent consent to participate. Results indicated that the average age of diagnosis for those diagnosed before age 18 was 9.6 years old, whereas for those diagnosed in adulthood it was 31.8. Over 80% of the sample had completed some college or post-secondary education, with more than a third of those diagnosed as adults having attained a 4-year college degree or higher. More than half were employed, with those diagnosed as adults more likely to be employed full time (31.74%). Additionally, more than half were married or identified a romantic partner. Significant rates of psychiatric comorbidity were reported, with those diagnosed with autism as adults more likely to have co-occurring anxiety (69.87%), depression (61.79%), eating disorders (17.28%), and substance use diagnoses (8.85%) than those diagnosed as children. High rates of suicidal ideation (34%) and self-harm (21%) were endorsed in the full sample. Regression analyses indicated that being diagnosed with autism at a later age was associated with higher internalizing, externalizing, and substance use as well as a lower report of personal strengths, even when accounting for demographic factors. Despite these challenges, our findings highlight that many autistic women have positive outcomes and meet common adult developmental milestones. The authors advocate for the development of more tailored treatment options that address the specific needs of autistic women. En ligne : https://doi.org/10.1002/aur.70073 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566
in Autism Research > 18-8 (August 2025) . - p.1651-1663[article] Comparative Analysis of Autistic Women Across the Lifespan: Childhood vs. Adulthood Diagnosis [texte imprimé] / Maire Claire DIEMER, Auteur ; Rosmary ROS-DEMARIZE, Auteur ; Catherine BRADLEY, Auteur ; Stephen M. KANNE, Auteur ; So Hyun KIM, Auteur ; Julia PARISH-MORRIS, Auteur ; LeeAnne GREEN SNYDER, Auteur ; Ericka WODKA, Auteur ; THE SPARK CONSORTIUM, Auteur ; Laura A. CARPENTER, Auteur . - p.1651-1663.
Langues : Anglais (eng)
in Autism Research > 18-8 (August 2025) . - p.1651-1663
Mots-clés : adults autism co-occurring conditions LGBT lifespan SPARK women Index. décimale : PER Périodiques Résumé : ABSTRACT This study investigates the experiences of autistic adult women, a group understudied in autism research due to a predominant focus on early identification/intervention, restrictive research participation criteria, and differing rates of diagnosis by sex. This study characterizes a cohort of autistic adult women (n 1424) across various dimensions including demographics, relationships, education, employment, income, well-being, and co-occurring psychiatric conditions. It also explores differences among those diagnosed with autism as children versus those diagnosed as adults. The sample was limited to women able to read and provide independent consent to participate. Results indicated that the average age of diagnosis for those diagnosed before age 18 was 9.6 years old, whereas for those diagnosed in adulthood it was 31.8. Over 80% of the sample had completed some college or post-secondary education, with more than a third of those diagnosed as adults having attained a 4-year college degree or higher. More than half were employed, with those diagnosed as adults more likely to be employed full time (31.74%). Additionally, more than half were married or identified a romantic partner. Significant rates of psychiatric comorbidity were reported, with those diagnosed with autism as adults more likely to have co-occurring anxiety (69.87%), depression (61.79%), eating disorders (17.28%), and substance use diagnoses (8.85%) than those diagnosed as children. High rates of suicidal ideation (34%) and self-harm (21%) were endorsed in the full sample. Regression analyses indicated that being diagnosed with autism at a later age was associated with higher internalizing, externalizing, and substance use as well as a lower report of personal strengths, even when accounting for demographic factors. Despite these challenges, our findings highlight that many autistic women have positive outcomes and meet common adult developmental milestones. The authors advocate for the development of more tailored treatment options that address the specific needs of autistic women. En ligne : https://doi.org/10.1002/aur.70073 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=566 Exploratory Study of Executive Function Abilities Across the Adult Lifespan in Individuals Receiving an ASD Diagnosis in Adulthood / Patricia ABBOTT in Journal of Autism and Developmental Disorders, 48-12 (December 2018)
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Titre : Exploratory Study of Executive Function Abilities Across the Adult Lifespan in Individuals Receiving an ASD Diagnosis in Adulthood Type de document : texte imprimé Auteurs : Patricia ABBOTT, Auteur ; Francesca HAPPE, Auteur ; Rebecca A. CHARLTON, Auteur Article en page(s) : p.4193-4206 Langues : Anglais (eng) Mots-clés : Ageing Autism spectrum disorders Cognition Executive function Lifespan Index. décimale : PER Périodiques Résumé : Little is known about cognition in autism spectrum disorder (ASD) across adulthood. We examined executive function abilities and autism traits in 134 adults receiving a first diagnosis of ASD. Participants aged 18-75 years with abilities in the normal range were assessed on executive function and self-report autism traits. Results suggest that for some abilities relying on speed and sequencing (Trails A and B; Digit Symbol), late-diagnosed individuals with ASD may demonstrate better performance than typical age-norms. On other executive measures (Digit Span, Hayling and Brixton tests) age-related correlations were similar to typical age-norms. Different domains of executive function may demonstrate different trajectories for ageing with ASD, with patterns of slower, accelerated or equivalent age-related change being observed across different measures. En ligne : http://dx.doi.org/10.1007/s10803-018-3675-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=371
in Journal of Autism and Developmental Disorders > 48-12 (December 2018) . - p.4193-4206[article] Exploratory Study of Executive Function Abilities Across the Adult Lifespan in Individuals Receiving an ASD Diagnosis in Adulthood [texte imprimé] / Patricia ABBOTT, Auteur ; Francesca HAPPE, Auteur ; Rebecca A. CHARLTON, Auteur . - p.4193-4206.
Langues : Anglais (eng)
in Journal of Autism and Developmental Disorders > 48-12 (December 2018) . - p.4193-4206
Mots-clés : Ageing Autism spectrum disorders Cognition Executive function Lifespan Index. décimale : PER Périodiques Résumé : Little is known about cognition in autism spectrum disorder (ASD) across adulthood. We examined executive function abilities and autism traits in 134 adults receiving a first diagnosis of ASD. Participants aged 18-75 years with abilities in the normal range were assessed on executive function and self-report autism traits. Results suggest that for some abilities relying on speed and sequencing (Trails A and B; Digit Symbol), late-diagnosed individuals with ASD may demonstrate better performance than typical age-norms. On other executive measures (Digit Span, Hayling and Brixton tests) age-related correlations were similar to typical age-norms. Different domains of executive function may demonstrate different trajectories for ageing with ASD, with patterns of slower, accelerated or equivalent age-related change being observed across different measures. En ligne : http://dx.doi.org/10.1007/s10803-018-3675-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=371 Service encounters across the lifespan in individuals with autism spectrum disorders: Results from a multisite study in Latin America / Cecilia MONTIEL-NAVA in Research in Autism Spectrum Disorders, 79 (November 2020)
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Titre : Service encounters across the lifespan in individuals with autism spectrum disorders: Results from a multisite study in Latin America Type de document : texte imprimé Auteurs : Cecilia MONTIEL-NAVA, Auteur ; Sebastián CUKIER, Auteur ; Gabriela GARRIDO, Auteur ; Daniel VALDEZ, Auteur ; Cristiane S. PAULA, Auteur ; Ricardo GARCIA, Auteur ; Analia ROSOLI, Auteur ; Matías IRARRÁZAVAL, Auteur ; Alexia RATTAZZI, Auteur Article en page(s) : 101670 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders Lifespan Services Caregiver Latin-America Latino Index. décimale : PER Périodiques Résumé : Background Core symptoms of Autism Spectrum Disorder (ASD) continue to affect everyday life as children grow and transition into adulthood. That way, different services may be needed at various stages of their lifetimes. This study aimed to describe service encounters and hours of service per week for individuals with ASD in Latin American countries and compare the data from three age groups (preschoolers, school-aged, and adolescents). Methods The data were obtained from an online survey adapted by Red Espectro Autista Latinoamerica (REAL) in 6 different South & Central American countries. The total sample was composed of 2520 caregivers of children and adolescents with ASD. Results Service encounters for Speech, Occupational, and Behavioral Therapies decreased with patient age, while medication increased. Regardless of the age group, a large proportion of individuals (19–37 %) were not receiving treatment, and those receiving treatment got fewer hours than best practice recommendations. For adolescents, the gaps in treatment are even greater and less consistent. Discussion Failure to offer timely identification and intervention for ASD will result in more impairment of the individual and the family burden. Although there are several initiatives to develop more resources for this population in Latin-America, the provision of services for ASD is still undervalued. Many such individuals might not be receiving the services they need, while most children are mainly receiving therapies with low to moderate evidence at a frequency below the recommended standards. En ligne : https://doi.org/10.1016/j.rasd.2020.101670 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=434
in Research in Autism Spectrum Disorders > 79 (November 2020) . - 101670[article] Service encounters across the lifespan in individuals with autism spectrum disorders: Results from a multisite study in Latin America [texte imprimé] / Cecilia MONTIEL-NAVA, Auteur ; Sebastián CUKIER, Auteur ; Gabriela GARRIDO, Auteur ; Daniel VALDEZ, Auteur ; Cristiane S. PAULA, Auteur ; Ricardo GARCIA, Auteur ; Analia ROSOLI, Auteur ; Matías IRARRÁZAVAL, Auteur ; Alexia RATTAZZI, Auteur . - 101670.
Langues : Anglais (eng)
in Research in Autism Spectrum Disorders > 79 (November 2020) . - 101670
Mots-clés : Autism spectrum disorders Lifespan Services Caregiver Latin-America Latino Index. décimale : PER Périodiques Résumé : Background Core symptoms of Autism Spectrum Disorder (ASD) continue to affect everyday life as children grow and transition into adulthood. That way, different services may be needed at various stages of their lifetimes. This study aimed to describe service encounters and hours of service per week for individuals with ASD in Latin American countries and compare the data from three age groups (preschoolers, school-aged, and adolescents). Methods The data were obtained from an online survey adapted by Red Espectro Autista Latinoamerica (REAL) in 6 different South & Central American countries. The total sample was composed of 2520 caregivers of children and adolescents with ASD. Results Service encounters for Speech, Occupational, and Behavioral Therapies decreased with patient age, while medication increased. Regardless of the age group, a large proportion of individuals (19–37 %) were not receiving treatment, and those receiving treatment got fewer hours than best practice recommendations. For adolescents, the gaps in treatment are even greater and less consistent. Discussion Failure to offer timely identification and intervention for ASD will result in more impairment of the individual and the family burden. Although there are several initiatives to develop more resources for this population in Latin-America, the provision of services for ASD is still undervalued. Many such individuals might not be receiving the services they need, while most children are mainly receiving therapies with low to moderate evidence at a frequency below the recommended standards. En ligne : https://doi.org/10.1016/j.rasd.2020.101670 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=434 Subcortical brain volume variations in autistic individuals across the lifespan / Danielle CHRISTENSEN in Molecular Autism, 16 (2025)
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Titre : Subcortical brain volume variations in autistic individuals across the lifespan Type de document : texte imprimé Auteurs : Danielle CHRISTENSEN, Auteur ; Young Seon SHIN, Auteur ; Jingying WANG, Auteur ; Carolina R. CUOMO, Auteur ; Tyler DENTRY, Auteur ; Hanna M. GEMMELL, Auteur ; Stormi L. PULVER, Auteur ; Ann-Marie ORLANDO, Auteur ; Walker S. MCKINNEY, Auteur ; Cassie J. STEVENS, Auteur ; Kathryn E. UNRUH, Auteur ; Bikram KARMAKAR, Auteur ; Stephen A. COOMBES, Auteur ; Matthew W. MOSCONI, Auteur ; Zheng WANG, Auteur ; Danielle CHRISTENSEN, Auteur ; Young Seon SHIN, Auteur ; Jingying WANG, Auteur ; Carolina R. CUOMO, Auteur ; Tyler DENTRY, Auteur ; Hanna M. GEMMELL, Auteur ; Stormi L. PULVER, Auteur ; Ann-Marie ORLANDO, Auteur ; Walker S. MCKINNEY, Auteur ; Cassie J. STEVENS, Auteur ; Kathryn E. UNRUH, Auteur ; Bikram KARMAKAR, Auteur ; Stephen A. COOMBES, Auteur ; Matthew W. MOSCONI, Auteur ; Zheng WANG, Auteur Article en page(s) : 46 Langues : Anglais (eng) Mots-clés : Humans Adult Male Female Child Middle Aged Adolescent Magnetic Resonance Imaging Aged Young Adult Cross-Sectional Studies Brain/pathology/diagnostic imaging Autistic Disorder/pathology/diagnostic imaging Organ Size Amygdala/pathology/diagnostic imaging Longevity Autism Spectrum Disorder/pathology/diagnostic imaging Hippocampus/pathology/diagnostic imaging Basal Ganglia/pathology/diagnostic imaging Aging Amygdala Autism spectrum disorder Basal ganglia Brain atrophy Cerebral ventricles Hippocampus Lifespan MRI Institutional Review Boards (IRB) at UTSW and Children’s Hospital of Dallas (STU052013-4 approval date: August 30, 2011), KU Medical Center (STUDY00140269 approval date: March 17, 2017), and UF (IRB201801378 approval date: July 26, 2022). Consent for publication: All participants provided their informed consent regarding data handling procedures. Competing interests: The authors declare no competing interests. Index. décimale : PER Périodiques Résumé : BACKGROUND: Structural alterations in subcortical brain regions-including the amygdala, hippocampus, basal ganglia, and cerebral ventricles-have been linked to various clinical features of autism spectrum disorder (ASD). However, volumetric features among these regions in autistic individuals across the lifespan remain poorly understood. This cross-sectional study aimed to investigate age-associated volumetric deviations in these clinically implicated subcortical regions of autistic individuals and neurotypical controls, and to examine the structural interrelationships within each group. METHODS: We examined multi-site T1-weighted MRI data from 119 autistic and 122 neurotypical participants aged 7-73 years. Volumetric data for the amygdala, hippocampus, basal ganglia, and cerebral ventricles were harmonized across sites using the ComBat algorithm. Following this, volumetric composite indices (principal component scores) were extracted for each region using principal component analysis. These scores represent dominant volumetric patterns of each subcortical region, with higher values reflecting greater volume. These composite scores were then compared between groups and with increasing age. RESULTS: Autistic participants exhibited greater amygdala volume in early life, followed by more pronounced age-associated reductions in adulthood compared to neurotypical controls. A similar trend was observed for the hippocampus, with early volumetric enlargement giving way to steeper declines in later years. In contrast, the autistic group consistently trended towards larger basal ganglia across the lifespan. Additionally, autistic participants showed accelerated enlargement in the cerebral ventricles with increasing age. Both groups exhibited patterns of inverse volumetric associations between the cerebral ventricles and surrounding subcortical regions in later adulthood; however, these relationships were more pronounced and widely distributed in the autistic group. LIMITATIONS: The cross-sectional design of this study limited us from capturing intra-individual differences at baseline and quantifying the lifespan trajectories of each participant. Site-related sampling differences may have introduced cohort bias in the results. CONCLUSIONS: Autistic participants and neurotypical controls exhibit distinct, age-related volumetric patterns across key subcortical brain regions. Enlargement of the cerebral ventricles and their inverse structural relationships with neighboring structures in later life may indicate atrophic processes beginning in middle adulthood in ASD. These findings highlight the need to further investigate mechanisms of atypical brain aging in ASD and consider these subcortical brain regions as potential biomarkers of neurodegeneration and intervention targets across the adult lifespan. En ligne : https://dx.doi.org/10.1186/s13229-025-00673-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=569
in Molecular Autism > 16 (2025) . - 46[article] Subcortical brain volume variations in autistic individuals across the lifespan [texte imprimé] / Danielle CHRISTENSEN, Auteur ; Young Seon SHIN, Auteur ; Jingying WANG, Auteur ; Carolina R. CUOMO, Auteur ; Tyler DENTRY, Auteur ; Hanna M. GEMMELL, Auteur ; Stormi L. PULVER, Auteur ; Ann-Marie ORLANDO, Auteur ; Walker S. MCKINNEY, Auteur ; Cassie J. STEVENS, Auteur ; Kathryn E. UNRUH, Auteur ; Bikram KARMAKAR, Auteur ; Stephen A. COOMBES, Auteur ; Matthew W. MOSCONI, Auteur ; Zheng WANG, Auteur ; Danielle CHRISTENSEN, Auteur ; Young Seon SHIN, Auteur ; Jingying WANG, Auteur ; Carolina R. CUOMO, Auteur ; Tyler DENTRY, Auteur ; Hanna M. GEMMELL, Auteur ; Stormi L. PULVER, Auteur ; Ann-Marie ORLANDO, Auteur ; Walker S. MCKINNEY, Auteur ; Cassie J. STEVENS, Auteur ; Kathryn E. UNRUH, Auteur ; Bikram KARMAKAR, Auteur ; Stephen A. COOMBES, Auteur ; Matthew W. MOSCONI, Auteur ; Zheng WANG, Auteur . - 46.
Langues : Anglais (eng)
in Molecular Autism > 16 (2025) . - 46
Mots-clés : Humans Adult Male Female Child Middle Aged Adolescent Magnetic Resonance Imaging Aged Young Adult Cross-Sectional Studies Brain/pathology/diagnostic imaging Autistic Disorder/pathology/diagnostic imaging Organ Size Amygdala/pathology/diagnostic imaging Longevity Autism Spectrum Disorder/pathology/diagnostic imaging Hippocampus/pathology/diagnostic imaging Basal Ganglia/pathology/diagnostic imaging Aging Amygdala Autism spectrum disorder Basal ganglia Brain atrophy Cerebral ventricles Hippocampus Lifespan MRI Institutional Review Boards (IRB) at UTSW and Children’s Hospital of Dallas (STU052013-4 approval date: August 30, 2011), KU Medical Center (STUDY00140269 approval date: March 17, 2017), and UF (IRB201801378 approval date: July 26, 2022). Consent for publication: All participants provided their informed consent regarding data handling procedures. Competing interests: The authors declare no competing interests. Index. décimale : PER Périodiques Résumé : BACKGROUND: Structural alterations in subcortical brain regions-including the amygdala, hippocampus, basal ganglia, and cerebral ventricles-have been linked to various clinical features of autism spectrum disorder (ASD). However, volumetric features among these regions in autistic individuals across the lifespan remain poorly understood. This cross-sectional study aimed to investigate age-associated volumetric deviations in these clinically implicated subcortical regions of autistic individuals and neurotypical controls, and to examine the structural interrelationships within each group. METHODS: We examined multi-site T1-weighted MRI data from 119 autistic and 122 neurotypical participants aged 7-73 years. Volumetric data for the amygdala, hippocampus, basal ganglia, and cerebral ventricles were harmonized across sites using the ComBat algorithm. Following this, volumetric composite indices (principal component scores) were extracted for each region using principal component analysis. These scores represent dominant volumetric patterns of each subcortical region, with higher values reflecting greater volume. These composite scores were then compared between groups and with increasing age. RESULTS: Autistic participants exhibited greater amygdala volume in early life, followed by more pronounced age-associated reductions in adulthood compared to neurotypical controls. A similar trend was observed for the hippocampus, with early volumetric enlargement giving way to steeper declines in later years. In contrast, the autistic group consistently trended towards larger basal ganglia across the lifespan. Additionally, autistic participants showed accelerated enlargement in the cerebral ventricles with increasing age. Both groups exhibited patterns of inverse volumetric associations between the cerebral ventricles and surrounding subcortical regions in later adulthood; however, these relationships were more pronounced and widely distributed in the autistic group. LIMITATIONS: The cross-sectional design of this study limited us from capturing intra-individual differences at baseline and quantifying the lifespan trajectories of each participant. Site-related sampling differences may have introduced cohort bias in the results. CONCLUSIONS: Autistic participants and neurotypical controls exhibit distinct, age-related volumetric patterns across key subcortical brain regions. Enlargement of the cerebral ventricles and their inverse structural relationships with neighboring structures in later life may indicate atrophic processes beginning in middle adulthood in ASD. These findings highlight the need to further investigate mechanisms of atypical brain aging in ASD and consider these subcortical brain regions as potential biomarkers of neurodegeneration and intervention targets across the adult lifespan. En ligne : https://dx.doi.org/10.1186/s13229-025-00673-1 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=569 Considerations from the 2017 IMFAR Preconference on Measuring Meaningful Outcomes from School-Age to Adulthood / Vanessa H. BAL in Autism Research, 11-11 (November 2018)
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Titre : Considerations from the 2017 IMFAR Preconference on Measuring Meaningful Outcomes from School-Age to Adulthood Type de document : texte imprimé Auteurs : Vanessa H. BAL, Auteur ; Robert L. HENDREN, Auteur ; Tony CHARMAN, Auteur ; Leonard ABBEDUTO, Auteur ; Connie KASARI, Auteur ; Laura G. KLINGER, Auteur ; Whitney ENCE, Auteur ; Tara GLAVIN, Auteur ; Gregory L. LYONS, Auteur ; Erin ROSENBERG, Auteur Article en page(s) : p.1446-1454 Langues : Anglais (eng) Mots-clés : lifespan outcome stakeholders strengths Index. décimale : PER Périodiques Résumé : The autism spectrum disorder (ASD) research community is increasingly considering the importance of measuring outcomes that are meaningful to individuals with ASD and their families. The 2017 IMFAR preconference aimed to gain the perspectives of how to define and measure "meaningful outcomes" from 280 participants, including people with ASD and their families, service providers, and researchers. Six themes were identified: (a) the definition of "outcome" varies by context and perspective; (b) the need to broaden the scope of what researchers measure; (c) the need for new assessment tools; (d) the need to expand data analytic methods; (e) where to focus (with emphasis on considering different developmental stages and aspects of diversity); and (f) a need for community partnerships to bridge research and daily practice. The challenge that the research community now faces is how to move the evidence base for clinical practice forward while keeping alive the divergence of views and considerations that are relevant for thinking about complex outcomes for the highly heterogeneous group of individuals with ASD. This commentary provides recommendations, with an emphasis on lifespan viewpoints that encompass individual strengths and preferences. Autism Research 2018, 11: 1446-1454. (c) 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: The 2017 IMFAR preconference aimed to gain the perspectives of how to define and measure "meaningful outcomes" from a variety of stakeholders. This commentary outlines the six themes identified from keynote and panel presentations and audience-participated discussions. Recommendations are made to emphasize perspectives that look across the lifespan and encompass individual strengths and preferences. En ligne : http://dx.doi.org/10.1002/aur.2034 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=370
in Autism Research > 11-11 (November 2018) . - p.1446-1454[article] Considerations from the 2017 IMFAR Preconference on Measuring Meaningful Outcomes from School-Age to Adulthood [texte imprimé] / Vanessa H. BAL, Auteur ; Robert L. HENDREN, Auteur ; Tony CHARMAN, Auteur ; Leonard ABBEDUTO, Auteur ; Connie KASARI, Auteur ; Laura G. KLINGER, Auteur ; Whitney ENCE, Auteur ; Tara GLAVIN, Auteur ; Gregory L. LYONS, Auteur ; Erin ROSENBERG, Auteur . - p.1446-1454.
Langues : Anglais (eng)
in Autism Research > 11-11 (November 2018) . - p.1446-1454
Mots-clés : lifespan outcome stakeholders strengths Index. décimale : PER Périodiques Résumé : The autism spectrum disorder (ASD) research community is increasingly considering the importance of measuring outcomes that are meaningful to individuals with ASD and their families. The 2017 IMFAR preconference aimed to gain the perspectives of how to define and measure "meaningful outcomes" from 280 participants, including people with ASD and their families, service providers, and researchers. Six themes were identified: (a) the definition of "outcome" varies by context and perspective; (b) the need to broaden the scope of what researchers measure; (c) the need for new assessment tools; (d) the need to expand data analytic methods; (e) where to focus (with emphasis on considering different developmental stages and aspects of diversity); and (f) a need for community partnerships to bridge research and daily practice. The challenge that the research community now faces is how to move the evidence base for clinical practice forward while keeping alive the divergence of views and considerations that are relevant for thinking about complex outcomes for the highly heterogeneous group of individuals with ASD. This commentary provides recommendations, with an emphasis on lifespan viewpoints that encompass individual strengths and preferences. Autism Research 2018, 11: 1446-1454. (c) 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: The 2017 IMFAR preconference aimed to gain the perspectives of how to define and measure "meaningful outcomes" from a variety of stakeholders. This commentary outlines the six themes identified from keynote and panel presentations and audience-participated discussions. Recommendations are made to emphasize perspectives that look across the lifespan and encompass individual strengths and preferences. En ligne : http://dx.doi.org/10.1002/aur.2034 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=370 The next generation of developmental psychopathology research: Including broader perspectives and becoming more precise / Kristin VALENTINO ; Katherine EDLER in Development and Psychopathology, 36-5 (December 2024)
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PermalinkA longitudinal study of loneliness in autism and other neurodevelopmental disabilities: Coping with loneliness from childhood through adulthood / Hillary K. SCHILTZ in Autism, 28-6 (June 2024)
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