Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version / Elles DE SCHIPPER in Autism Research, 8-6 (December 2015)  

Public ISBD [article]  inAutism Research > 8-6 (December 2015) . - p.782-794 Titre : Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version Type de document : texte imprimé Auteurs : Elles DE SCHIPPER, Auteur ; Aiko LUNDEQUIST, Auteur ; David COGHILL, Auteur ; Petrus J. DE VRIES, Auteur ; Mats GRANLUND, Auteur ; Martin HOLTMANN, Auteur ; Ulf JONSSON, Auteur ; Sunil KARANDE, Auteur ; John Elder ROBISON, Auteur ; Cory SHULMAN, Auteur ; Nidhi SINGHAL, Auteur ; Bruce TONGE, Auteur ; Virginia C.N. WONG, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Sven BÖLTE, Auteur Article en page(s) : p.782-794 Langues : Anglais (eng) Mots-clés : neurodevelopmental disorder  assessment  child psychiatry  diagnostics  International Classification of Diseases  Diagnostic and Statistical Manual of Mental Disorders  autism Index. décimale : PER Périodiques Résumé : Objective: This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span). Methods: Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached. Results: Seventy-one studies were included in the final analysis and 2475 meaningful concepts contained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5% of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51%), emotional functions (49%), complex interpersonal interactions (48%), attention functions (44%), and mental functions of language (44%). Conclusion: The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD—both with respect to disability and exceptionality—and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD. Autism Res 2015, 8: 782–794. © 2015 The Authors Autism Research published by Wiley Periodicals, Inc. on behalf of International Society for Autism Research En ligne : http://dx.doi.org/10.1002/aur.1485 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=278 [article] Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version [texte imprimé] / Elles DE SCHIPPER, Auteur ; Aiko LUNDEQUIST, Auteur ; David COGHILL, Auteur ; Petrus J. DE VRIES, Auteur ; Mats GRANLUND, Auteur ; Martin HOLTMANN, Auteur ; Ulf JONSSON, Auteur ; Sunil KARANDE, Auteur ; John Elder ROBISON, Auteur ; Cory SHULMAN, Auteur ; Nidhi SINGHAL, Auteur ; Bruce TONGE, Auteur ; Virginia C.N. WONG, Auteur ; Lonnie ZWAIGENBAUM, Auteur ; Sven BÖLTE, Auteur . - p.782-794. Langues : Anglais (eng) in Autism Research > 8-6 (December 2015) . - p.782-794 Mots-clés : neurodevelopmental disorder  assessment  child psychiatry  diagnostics  International Classification of Diseases  Diagnostic and Statistical Manual of Mental Disorders  autism Index. décimale : PER Périodiques Résumé : Objective: This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span). Methods: Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached. Results: Seventy-one studies were included in the final analysis and 2475 meaningful concepts contained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5% of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51%), emotional functions (49%), complex interpersonal interactions (48%), attention functions (44%), and mental functions of language (44%). Conclusion: The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD—both with respect to disability and exceptionality—and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD. Autism Res 2015, 8: 782–794. © 2015 The Authors Autism Research published by Wiley Periodicals, Inc. on behalf of International Society for Autism Research En ligne : http://dx.doi.org/10.1002/aur.1485 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=278

Autism prevalence and outcomes in older adults / John Elder ROBISON in Autism Research, 12-3 (March 2019)  

Public ISBD [article]  inAutism Research > 12-3 (March 2019) . - p.370-374 Titre : Autism prevalence and outcomes in older adults Type de document : texte imprimé Auteurs : John Elder ROBISON, Auteur Article en page(s) : p.370-374 Langues : Anglais (eng) Mots-clés : diagnosis  outcomes  prevalence  treatment Index. décimale : PER Périodiques Résumé : Recent studies of mortality, illness, and suicide among autistic adults paint an alarming picture. Autistic people appear to die much earlier than the general population, and they seem to be far more vulnerable to a surprising range of medical problems. Suicide and depression seem far more common than in the general population. If correct, that suggests an older autistic population in silent crisis, with few if any supports. If so, older autistic people should be a focus for public health and human service agencies. But is the picture complete? Autism researchers ask for answers, identifying problems and their scope. This article discusses the limitations of our adult autism knowledge, and the challenges we will face studying adults. Researching and ultimately serving older autistic adults presents a unique set of problems that have not yet been addressed by scientists or clinicians. Autism Res 2019, 12: 370-374 (c) 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Public policy toward autistic people is driven by data. Most autism data to date have been derived from and about children, because autism tends to be identified and supported in the public school system. This has created a public perception of autism as a childhood problem. In fact, autism is a lifelong difference or disability, and recent studies suggest serious overlooked concerns for autistic adults. This commentary discusses how we have evaluated adult autism so far, limitations of our knowledge, and how we might evaluate adult needs going forward. The commentary makes a case for specific new adult prevalence and outcome studies to inform public policy. En ligne : http://dx.doi.org/10.1002/aur.2080 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=387 [article] Autism prevalence and outcomes in older adults [texte imprimé] / John Elder ROBISON, Auteur . - p.370-374. Langues : Anglais (eng) in Autism Research > 12-3 (March 2019) . - p.370-374 Mots-clés : diagnosis  outcomes  prevalence  treatment Index. décimale : PER Périodiques Résumé : Recent studies of mortality, illness, and suicide among autistic adults paint an alarming picture. Autistic people appear to die much earlier than the general population, and they seem to be far more vulnerable to a surprising range of medical problems. Suicide and depression seem far more common than in the general population. If correct, that suggests an older autistic population in silent crisis, with few if any supports. If so, older autistic people should be a focus for public health and human service agencies. But is the picture complete? Autism researchers ask for answers, identifying problems and their scope. This article discusses the limitations of our adult autism knowledge, and the challenges we will face studying adults. Researching and ultimately serving older autistic adults presents a unique set of problems that have not yet been addressed by scientists or clinicians. Autism Res 2019, 12: 370-374 (c) 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Public policy toward autistic people is driven by data. Most autism data to date have been derived from and about children, because autism tends to be identified and supported in the public school system. This has created a public perception of autism as a childhood problem. In fact, autism is a lifelong difference or disability, and recent studies suggest serious overlooked concerns for autistic adults. This commentary discusses how we have evaluated adult autism so far, limitations of our knowledge, and how we might evaluate adult needs going forward. The commentary makes a case for specific new adult prevalence and outcome studies to inform public policy. En ligne : http://dx.doi.org/10.1002/aur.2080 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=387

Classification of Functioning and Impairment: The Development of ICF Core Sets for Autism Spectrum Disorder / Sven BÖLTE in Autism Research, 7-1 (February 2014)  

Public ISBD [article]  inAutism Research > 7-1 (February 2014) . - p.167-172 Titre : Classification of Functioning and Impairment: The Development of ICF Core Sets for Autism Spectrum Disorder Type de document : texte imprimé Auteurs : Sven BÖLTE, Auteur ; Elles DE SCHIPPER, Auteur ; John Elder ROBISON, Auteur ; Virginia C.N. WONG, Auteur ; Melissa SELB, Auteur ; Nidhi SINGHAL, Auteur ; Petrus J. DE VRIES, Auteur ; Lonnie ZWAIGENBAUM, Auteur Article en page(s) : p.167-172 Langues : Anglais (eng) Mots-clés : neurodevelopmental disorders  autistic disorder  assessment  children and youth  psychiatry  mental health  health care  ICF  ICF Core Set Index. décimale : PER Périodiques Résumé : Given the variability seen in Autism Spectrum Disorder (ASD), accurate quantification of functioning is vital to studying outcome and quality of life in affected individuals. The International Classification of Functioning, Disability and Health (ICF) provides a comprehensive, universally accepted framework for the description of health-related functioning. ICF Core Sets are shortlists of ICF categories that are selected to capture those aspects of functioning that are most relevant when describing a person with a specific condition. In this paper, the authors preview the process for developing ICF Core Sets for ASD, a collaboration with the World Health Organization and the ICF Research Branch. The ICF Children and Youth version (ICF-CY) was derived from the ICF and designed to capture the specific situation of the developing child. As ASD affects individuals throughout the life span, and the ICF-CY includes all ICF categories, the ICF-CY will be used in this project (“ICF(-CY)” from now on). The ICF(-CY) categories to be included in the ICF Core Sets for ASD will be determined at an ICF Core Set Consensus Conference, where evidence from four preparatory studies (a systematic review, an expert survey, a patient and caregiver qualitative study, and a clinical cross-sectional study) will be integrated. Comprehensive and Brief ICF Core Sets for ASD will be developed with the goal of providing useful standards for research and clinical practice and generating a common language for functioning and impairment in ASD in different areas of life and across the life span. En ligne : http://dx.doi.org/10.1002/aur.1335 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=227 [article] Classification of Functioning and Impairment: The Development of ICF Core Sets for Autism Spectrum Disorder [texte imprimé] / Sven BÖLTE, Auteur ; Elles DE SCHIPPER, Auteur ; John Elder ROBISON, Auteur ; Virginia C.N. WONG, Auteur ; Melissa SELB, Auteur ; Nidhi SINGHAL, Auteur ; Petrus J. DE VRIES, Auteur ; Lonnie ZWAIGENBAUM, Auteur . - p.167-172. Langues : Anglais (eng) in Autism Research > 7-1 (February 2014) . - p.167-172 Mots-clés : neurodevelopmental disorders  autistic disorder  assessment  children and youth  psychiatry  mental health  health care  ICF  ICF Core Set Index. décimale : PER Périodiques Résumé : Given the variability seen in Autism Spectrum Disorder (ASD), accurate quantification of functioning is vital to studying outcome and quality of life in affected individuals. The International Classification of Functioning, Disability and Health (ICF) provides a comprehensive, universally accepted framework for the description of health-related functioning. ICF Core Sets are shortlists of ICF categories that are selected to capture those aspects of functioning that are most relevant when describing a person with a specific condition. In this paper, the authors preview the process for developing ICF Core Sets for ASD, a collaboration with the World Health Organization and the ICF Research Branch. The ICF Children and Youth version (ICF-CY) was derived from the ICF and designed to capture the specific situation of the developing child. As ASD affects individuals throughout the life span, and the ICF-CY includes all ICF categories, the ICF-CY will be used in this project (“ICF(-CY)” from now on). The ICF(-CY) categories to be included in the ICF Core Sets for ASD will be determined at an ICF Core Set Consensus Conference, where evidence from four preparatory studies (a systematic review, an expert survey, a patient and caregiver qualitative study, and a clinical cross-sectional study) will be integrated. Comprehensive and Brief ICF Core Sets for ASD will be developed with the goal of providing useful standards for research and clinical practice and generating a common language for functioning and impairment in ASD in different areas of life and across the life span. En ligne : http://dx.doi.org/10.1002/aur.1335 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=227

Kanner, Asperger, and Frankl: A third man at the genesis of the autism diagnosis / John Elder ROBISON in Autism, 21-7 (October 2017)  

Public ISBD [article]  inAutism > 21-7 (October 2017) . - p.862-871 Titre : Kanner, Asperger, and Frankl: A third man at the genesis of the autism diagnosis Type de document : texte imprimé Auteurs : John Elder ROBISON, Auteur Article en page(s) : p.862-871 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Scholars have long speculated about how Kanner and Asperger?s descriptions of autistic behavior appeared just 1 year apart in America and Austria even as World War II had severed communication between the two countries. Both conspiracy and serendipity have been alleged, but a simpler explanation has now emerged. Autistic knowledge crossed the Atlantic with Georg Frankl?a previously unrecognized ?man in the middle? who followed his fiancé to America. The evidence presented here fills in many blanks and suggests both Kanner and Asperger benefited from Frankl?s insight. He was a guiding force for both men: unseen until now because he left very little in the way of published papers. To the end of their lives, Kanner and Asperger described their conditions as separate and distinct. Today, they are both part of the Autism Spectrum in Diagnostic and Statistical Manual of Mental Disorders (5th ed.). This article explains how and why Kanner and Asperger saw their descriptions as different. It makes the case that Georg Frankl helped both men see autism as we know it today and first saw the breadth of that continuum. En ligne : https://doi.org/10.1177/1362361316654283 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=319 [article] Kanner, Asperger, and Frankl: A third man at the genesis of the autism diagnosis [texte imprimé] / John Elder ROBISON, Auteur . - p.862-871. Langues : Anglais (eng) in Autism > 21-7 (October 2017) . - p.862-871 Index. décimale : PER Périodiques Résumé : Scholars have long speculated about how Kanner and Asperger?s descriptions of autistic behavior appeared just 1 year apart in America and Austria even as World War II had severed communication between the two countries. Both conspiracy and serendipity have been alleged, but a simpler explanation has now emerged. Autistic knowledge crossed the Atlantic with Georg Frankl?a previously unrecognized ?man in the middle? who followed his fiancé to America. The evidence presented here fills in many blanks and suggests both Kanner and Asperger benefited from Frankl?s insight. He was a guiding force for both men: unseen until now because he left very little in the way of published papers. To the end of their lives, Kanner and Asperger described their conditions as separate and distinct. Today, they are both part of the Autism Spectrum in Diagnostic and Statistical Manual of Mental Disorders (5th ed.). This article explains how and why Kanner and Asperger saw their descriptions as different. It makes the case that Georg Frankl helped both men see autism as we know it today and first saw the breadth of that continuum. En ligne : https://doi.org/10.1177/1362361316654283 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=319

Regardez-moi dans les yeux / John Elder ROBISON

Public ISBD Titre : Regardez-moi dans les yeux Type de document : texte imprimé Auteurs : John Elder ROBISON, Auteur ; Michaël JULIEN, Auteur Editeur : Saint-Victor-d’Epine : City Editions Année de publication : 2017 Importance : 332 p. Format : 14,5 cm × 22,4 cm × 2,4 cm ISBN/ISSN/EAN : 978-2-8246-0932-4 Langues : Français (fre) Index. décimale : ASP-L ASP-L - TSA sans Déficience - Témoignages Résumé : Bizarre, différent, dérangeant... Aux yeux des autres, John est un enfant étrange et il est exclu des jeux et des activités de ses camarades. Personne ne l'a compris, mais il est atteint d'une forme d'autisme qui l'empêche notamment de mener une conversation simple et de regarder les autres dans les yeux. Mais s'il a des difficultés sociales, John a aussi des capacités hors du commun. C'est un génie des machines et de la technologie. C'est ainsi qu'il invente certains des tout premiers jeux vidéos. A 40 ans, quand il est enfin diagnostiqué Asperger, sa vie en est bouleversée. John comprend pourquoi il est différent et décide d'écrire pour témoigner de son histoire. Dans ce récit plein d'humour et d'espoir, John montre que l'on peut réussir à sortir de la prison de l'autisme, surtout si le regard des autres change... [Résumé d'Auteur/Editeur] Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=306 Regardez-moi dans les yeux [texte imprimé] / John Elder ROBISON, Auteur ; Michaël JULIEN, Auteur . - Saint-Victor-d’Epine : City Editions, 2017 . - 332 p. ; 14,5 cm × 22,4 cm × 2,4 cm. ISBN : 978-2-8246-0932-4 Langues : Français (fre) Index. décimale : ASP-L ASP-L - TSA sans Déficience - Témoignages Résumé : Bizarre, différent, dérangeant... Aux yeux des autres, John est un enfant étrange et il est exclu des jeux et des activités de ses camarades. Personne ne l'a compris, mais il est atteint d'une forme d'autisme qui l'empêche notamment de mener une conversation simple et de regarder les autres dans les yeux. Mais s'il a des difficultés sociales, John a aussi des capacités hors du commun. C'est un génie des machines et de la technologie. C'est ainsi qu'il invente certains des tout premiers jeux vidéos. A 40 ans, quand il est enfin diagnostiqué Asperger, sa vie en est bouleversée. John comprend pourquoi il est différent et décide d'écrire pour témoigner de son histoire. Dans ce récit plein d'humour et d'espoir, John montre que l'on peut réussir à sortir de la prison de l'autisme, surtout si le regard des autres change... [Résumé d'Auteur/Editeur] Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=306

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