ECHO autism adult healthcare: Training community clinicians to provide quality care for autistic adults / Beth A. MALOW in Autism Research, 16-8 (August 2023)  

Public ISBD [article]  inAutism Research > 16-8 (August 2023) . - p.1619-1629 Titre : ECHO autism adult healthcare: Training community clinicians to provide quality care for autistic adults Type de document : texte imprimé Auteurs : Beth A. MALOW, Auteur ; Micah O. MAZUREK, Auteur ; Gary STOBBE, Auteur ; Mavara M. AGRAWAL, Auteur ; Rachel LOFTIN, Auteur ; David CAUDEL, Auteur ; Amy HESS, Auteur ; Alexander WESTPHAL, Auteur ; Joshua SMITH, Auteur ; Janet SHOUSE, Auteur ; Nancy CHEAK-ZAMORA, Auteur ; Kristin SOHL, Auteur Article en page(s) : p.1619-1629 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Autistic adults experience significant unmet healthcare needs, with opportunities for improvement in both the systems and the practitioners who serve this population. Primary care physicians/practitioners (PCPs) are a natural choice to provide comprehensive care to autistic adults but often lack experience in serving this population. This pilot study developed and tested an Extension for Community Healthcare Outcomes (ECHO) Autism model adapted from our previous work, focused specifically on training PCPs in best-practice care for autistic adults. The project was informed directly by the perspectives and preferences of autistic adults, caregivers, and PCPs. Two consecutive cohorts of PCPs participated in ECHO Autism Adult Healthcare sessions. Each cohort met 1 h twice a month for 6 months, with 37 PCPs (n=20 in Cohort 1, and n=17 in Cohort 2) participating. Based on findings from the first cohort, adjustments were made to refine the session preparation, curriculum, conduct of the ECHO, resources, and evaluation. After participation in the ECHO Autism program, PCP self-efficacy and satisfaction improved, while the number of perceived barriers did not change. Knowledge did not improve significantly in Cohort 1, but after adjustments to the training model, participants in Cohort 2 showed significant knowledge gains. While attention to systems of care is critical to addressing barriers in healthcare in the autistic population, the ECHO Autism Adult Healthcare model is feasible and holds promise for improving PCP satisfaction and self-efficacy in working with autistic adults. En ligne : https://doi.org/10.1002/aur.2996 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510 [article] ECHO autism adult healthcare: Training community clinicians to provide quality care for autistic adults [texte imprimé] / Beth A. MALOW, Auteur ; Micah O. MAZUREK, Auteur ; Gary STOBBE, Auteur ; Mavara M. AGRAWAL, Auteur ; Rachel LOFTIN, Auteur ; David CAUDEL, Auteur ; Amy HESS, Auteur ; Alexander WESTPHAL, Auteur ; Joshua SMITH, Auteur ; Janet SHOUSE, Auteur ; Nancy CHEAK-ZAMORA, Auteur ; Kristin SOHL, Auteur . - p.1619-1629. Langues : Anglais (eng) in Autism Research > 16-8 (August 2023) . - p.1619-1629 Index. décimale : PER Périodiques Résumé : Abstract Autistic adults experience significant unmet healthcare needs, with opportunities for improvement in both the systems and the practitioners who serve this population. Primary care physicians/practitioners (PCPs) are a natural choice to provide comprehensive care to autistic adults but often lack experience in serving this population. This pilot study developed and tested an Extension for Community Healthcare Outcomes (ECHO) Autism model adapted from our previous work, focused specifically on training PCPs in best-practice care for autistic adults. The project was informed directly by the perspectives and preferences of autistic adults, caregivers, and PCPs. Two consecutive cohorts of PCPs participated in ECHO Autism Adult Healthcare sessions. Each cohort met 1 h twice a month for 6 months, with 37 PCPs (n=20 in Cohort 1, and n=17 in Cohort 2) participating. Based on findings from the first cohort, adjustments were made to refine the session preparation, curriculum, conduct of the ECHO, resources, and evaluation. After participation in the ECHO Autism program, PCP self-efficacy and satisfaction improved, while the number of perceived barriers did not change. Knowledge did not improve significantly in Cohort 1, but after adjustments to the training model, participants in Cohort 2 showed significant knowledge gains. While attention to systems of care is critical to addressing barriers in healthcare in the autistic population, the ECHO Autism Adult Healthcare model is feasible and holds promise for improving PCP satisfaction and self-efficacy in working with autistic adults. En ligne : https://doi.org/10.1002/aur.2996 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=510

Editorial: Training in Autism Among First Responders / Marc R. WOODBURY-SMITH in Journal of Autism and Developmental Disorders, 54-4 (April 2024)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 54-4 (April 2024) . - p.1233-1234 Titre : Editorial: Training in Autism Among First Responders Type de document : texte imprimé Auteurs : Marc R. WOODBURY-SMITH, Auteur ; Alexander WESTPHAL, Auteur ; Rachel LOFTIN, Auteur Article en page(s) : p.1233-1234 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : https://doi.org/10.1007/s10803-022-05855-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=526 [article] Editorial: Training in Autism Among First Responders [texte imprimé] / Marc R. WOODBURY-SMITH, Auteur ; Alexander WESTPHAL, Auteur ; Rachel LOFTIN, Auteur . - p.1233-1234. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 54-4 (April 2024) . - p.1233-1234 Index. décimale : PER Périodiques En ligne : https://doi.org/10.1007/s10803-022-05855-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=526

Medical Issues / Fred R. VOLKMAR

Public ISBD contenu dans Autism Spectrum Disorders in Infants and Toddlers / Katarzyna CHAWARSKA Titre : Medical Issues Type de document : texte imprimé Auteurs : Fred R. VOLKMAR, Auteur ; Alexander WESTPHAL, Auteur ; Abha R. GUPTA, Auteur ; Lisa WIESNER, Auteur Année de publication : 2008 Importance : p.274-299 Langues : Anglais (eng) Index. décimale : AUT-D AUT-D - L'Autisme - Dépistage et Diagnostic Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=716 contenu dans Autism Spectrum Disorders in Infants and Toddlers / Katarzyna CHAWARSKA Medical Issues [texte imprimé] / Fred R. VOLKMAR, Auteur ; Alexander WESTPHAL, Auteur ; Abha R. GUPTA, Auteur ; Lisa WIESNER, Auteur . - 2008 . - p.274-299. Langues : Anglais (eng) Index. décimale : AUT-D AUT-D - L'Autisme - Dépistage et Diagnostic Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=716

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Neurogenetic analysis of childhood disintegrative disorder / Abha R. GUPTA in Molecular Autism, 8 (2017)  

Public ISBD [article]  inMolecular Autism > 8 (2017) . - 19p. Titre : Neurogenetic analysis of childhood disintegrative disorder Type de document : texte imprimé Auteurs : Abha R. GUPTA, Auteur ; Alexander WESTPHAL, Auteur ; Daniel Y.J. YANG, Auteur ; Catherine A.W. SULLIVAN, Auteur ; Jeffrey EILBOTT, Auteur ; Samir ZAIDI, Auteur ; Avery VOOS, Auteur ; Brent C. VANDER WYK, Auteur ; Pamela VENTOLA, Auteur ; Zainulabedin WAQAR, Auteur ; Thomas V. FERNANDEZ, Auteur ; Adife Gulhan ERCAN-SENCICEK, Auteur ; Michael F. WALKER, Auteur ; M. CHOI, Auteur ; Andrea SCHNEIDER, Auteur ; Tammy HEDDERLY, Auteur ; Gillian BAIRD, Auteur ; Hannah FRIEDMAN, Auteur ; Cara CORDEAUX, Auteur ; Alexandra RISTOW, Auteur ; Frederick SHIC, Auteur ; Fred R. VOLKMAR, Auteur ; Kevin A. PELPHREY, Auteur Article en page(s) : 19p. Langues : Anglais (eng) Mots-clés : Autism spectrum disorder (ASD)  Childhood disintegrative disorder (CDD)  Eye tracking  Functional magnetic resonance imaging (fMRI)  Genetics  Intellectual disability (ID)  Regression Index. décimale : PER Périodiques Résumé : BACKGROUND: Childhood disintegrative disorder (CDD) is a rare form of autism spectrum disorder (ASD) of unknown etiology. It is characterized by late-onset regression leading to significant intellectual disability (ID) and severe autism. Although there are phenotypic differences between CDD and other forms of ASD, it is unclear if there are neurobiological differences. METHODS: We pursued a multidisciplinary study of CDD (n = 17) and three comparison groups: low-functioning ASD (n = 12), high-functioning ASD (n = 50), and typically developing (n = 26) individuals. We performed whole-exome sequencing (WES), copy number variant (CNV), and gene expression analyses of CDD and, on subsets of each cohort, non-sedated functional magnetic resonance imaging (fMRI) while viewing socioemotional (faces) and non-socioemotional (houses) stimuli and eye tracking while viewing emotional faces. RESULTS: We observed potential differences between CDD and other forms of ASD. WES and CNV analyses identified one or more rare de novo, homozygous, and/or hemizygous (mother-to-son transmission on chrX) variants for most probands that were not shared by unaffected sibling controls. There were no clearly deleterious variants or highly recurrent candidate genes. Candidate genes that were found to be most conserved at variant position and most intolerant of variation, such as TRRAP, ZNF236, and KIAA2018, play a role or may be involved in transcription. Using the human BrainSpan transcriptome dataset, CDD candidate genes were found to be more highly expressed in non-neocortical regions than neocortical regions. This expression profile was similar to that of an independent cohort of ASD probands with regression. The non-neocortical regions overlapped with those identified by fMRI as abnormally hyperactive in response to viewing faces, such as the thalamus, cerebellum, caudate, and hippocampus. Eye-tracking analysis showed that, among individuals with ASD, subjects with CDD focused on eyes the most when shown pictures of faces. CONCLUSIONS: Given that cohort sizes were limited by the rarity of CDD, and the challenges of conducting non-sedated fMRI and eye tracking in subjects with ASD and significant ID, this is an exploratory study designed to investigate the neurobiological features of CDD. In addition to reporting the first multimodal analysis of CDD, a combination of fMRI and eye-tracking analyses are being presented for the first time for low-functioning individuals with ASD. Our results suggest differences between CDD and other forms of ASD on the neurobiological as well as clinical level. En ligne : http://dx.doi.org/10.1186/s13229-017-0133-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=330 [article] Neurogenetic analysis of childhood disintegrative disorder [texte imprimé] / Abha R. GUPTA, Auteur ; Alexander WESTPHAL, Auteur ; Daniel Y.J. YANG, Auteur ; Catherine A.W. SULLIVAN, Auteur ; Jeffrey EILBOTT, Auteur ; Samir ZAIDI, Auteur ; Avery VOOS, Auteur ; Brent C. VANDER WYK, Auteur ; Pamela VENTOLA, Auteur ; Zainulabedin WAQAR, Auteur ; Thomas V. FERNANDEZ, Auteur ; Adife Gulhan ERCAN-SENCICEK, Auteur ; Michael F. WALKER, Auteur ; M. CHOI, Auteur ; Andrea SCHNEIDER, Auteur ; Tammy HEDDERLY, Auteur ; Gillian BAIRD, Auteur ; Hannah FRIEDMAN, Auteur ; Cara CORDEAUX, Auteur ; Alexandra RISTOW, Auteur ; Frederick SHIC, Auteur ; Fred R. VOLKMAR, Auteur ; Kevin A. PELPHREY, Auteur . - 19p. Langues : Anglais (eng) in Molecular Autism > 8 (2017) . - 19p. Mots-clés : Autism spectrum disorder (ASD)  Childhood disintegrative disorder (CDD)  Eye tracking  Functional magnetic resonance imaging (fMRI)  Genetics  Intellectual disability (ID)  Regression Index. décimale : PER Périodiques Résumé : BACKGROUND: Childhood disintegrative disorder (CDD) is a rare form of autism spectrum disorder (ASD) of unknown etiology. It is characterized by late-onset regression leading to significant intellectual disability (ID) and severe autism. Although there are phenotypic differences between CDD and other forms of ASD, it is unclear if there are neurobiological differences. METHODS: We pursued a multidisciplinary study of CDD (n = 17) and three comparison groups: low-functioning ASD (n = 12), high-functioning ASD (n = 50), and typically developing (n = 26) individuals. We performed whole-exome sequencing (WES), copy number variant (CNV), and gene expression analyses of CDD and, on subsets of each cohort, non-sedated functional magnetic resonance imaging (fMRI) while viewing socioemotional (faces) and non-socioemotional (houses) stimuli and eye tracking while viewing emotional faces. RESULTS: We observed potential differences between CDD and other forms of ASD. WES and CNV analyses identified one or more rare de novo, homozygous, and/or hemizygous (mother-to-son transmission on chrX) variants for most probands that were not shared by unaffected sibling controls. There were no clearly deleterious variants or highly recurrent candidate genes. Candidate genes that were found to be most conserved at variant position and most intolerant of variation, such as TRRAP, ZNF236, and KIAA2018, play a role or may be involved in transcription. Using the human BrainSpan transcriptome dataset, CDD candidate genes were found to be more highly expressed in non-neocortical regions than neocortical regions. This expression profile was similar to that of an independent cohort of ASD probands with regression. The non-neocortical regions overlapped with those identified by fMRI as abnormally hyperactive in response to viewing faces, such as the thalamus, cerebellum, caudate, and hippocampus. Eye-tracking analysis showed that, among individuals with ASD, subjects with CDD focused on eyes the most when shown pictures of faces. CONCLUSIONS: Given that cohort sizes were limited by the rarity of CDD, and the challenges of conducting non-sedated fMRI and eye tracking in subjects with ASD and significant ID, this is an exploratory study designed to investigate the neurobiological features of CDD. In addition to reporting the first multimodal analysis of CDD, a combination of fMRI and eye-tracking analyses are being presented for the first time for low-functioning individuals with ASD. Our results suggest differences between CDD and other forms of ASD on the neurobiological as well as clinical level. En ligne : http://dx.doi.org/10.1186/s13229-017-0133-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=330

Revisiting Regression in Autism: Heller's Dementia Infantilis / Alexander WESTPHAL in Journal of Autism and Developmental Disorders, 43-2 (February 2013)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 43-2 (February 2013) . - p.265-271 Titre : Revisiting Regression in Autism: Heller's Dementia Infantilis Type de document : texte imprimé Auteurs : Alexander WESTPHAL, Auteur ; Stefanie SCHELINSKI, Auteur ; Fred R. VOLKMAR, Auteur ; Kevin A. PELPHREY, Auteur Année de publication : 2013 Article en page(s) : p.265-271 Langues : (Eng) Mots-clés : Autism spectrum disorder  Childhood disintegrative disorder  Regression Index. décimale : PER Périodiques Résumé : Theodor Heller first described a severe regression of adaptive function in normally developing children, something he termed dementia infantilis, over one 100 years ago. Dementia infantilis is most closely related to the modern diagnosis, childhood disintegrative disorder. We translate Heller's paper, Ãœber Dementia Infantilis, and discuss similarities in presentation between Heller's cases, and a group of children with childhood disintegrative disorder. In particular we discuss a prodromal period of affective dysregulation described by Heller, and also evident in our sample, but not previously described in any detail since the publication of Ãœber Dementia Infantilis. En ligne : http://dx.doi.org/10.1007/s10803-012-1559-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=188 [article] Revisiting Regression in Autism: Heller's Dementia Infantilis [texte imprimé] / Alexander WESTPHAL, Auteur ; Stefanie SCHELINSKI, Auteur ; Fred R. VOLKMAR, Auteur ; Kevin A. PELPHREY, Auteur . - 2013 . - p.265-271. Langues : (Eng) in Journal of Autism and Developmental Disorders > 43-2 (February 2013) . - p.265-271 Mots-clés : Autism spectrum disorder  Childhood disintegrative disorder  Regression Index. décimale : PER Périodiques Résumé : Theodor Heller first described a severe regression of adaptive function in normally developing children, something he termed dementia infantilis, over one 100 years ago. Dementia infantilis is most closely related to the modern diagnosis, childhood disintegrative disorder. We translate Heller's paper, Ãœber Dementia Infantilis, and discuss similarities in presentation between Heller's cases, and a group of children with childhood disintegrative disorder. In particular we discuss a prodromal period of affective dysregulation described by Heller, and also evident in our sample, but not previously described in any detail since the publication of Ãœber Dementia Infantilis. En ligne : http://dx.doi.org/10.1007/s10803-012-1559-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=188

Shifting Diagnostic Systems for Defining Intellectual Disability in Death Penalty Cases: Hall vs. Florida / Mina MUKHERJEE in Journal of Autism and Developmental Disorders, 45-7 (July 2015)  

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Understanding the Use of the Term "Weaponized Autism" in An Alt-Right Social Media Platform / Christie WELCH in Journal of Autism and Developmental Disorders, 53-10 (October 2023)  

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