Annual Research Review: Quality of life and childhood mental and behavioural disorders – a critical review of the research / Ulf JONSSON in Journal of Child Psychology and Psychiatry, 58-4 (April 2017)  

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 58-4 (April 2017) . - p.439-469 Titre : Annual Research Review: Quality of life and childhood mental and behavioural disorders – a critical review of the research Type de document : Texte imprimé et/ou numérique Auteurs : Ulf JONSSON, Auteur ; Iman ALAIE, Auteur ; Anna LÖFGREN WILTEUS, Auteur ; Eric ZANDER, Auteur ; Peter B. MARSCHIK, Auteur ; David COGHILL, Auteur ; Sven BÖLTE, Auteur Article en page(s) : p.439-469 Langues : Anglais (eng) Mots-clés : Quality of life  psychopathology  mental health  adolescence Index. décimale : PER Périodiques Résumé : Background An individual's subjective perception of well-being is increasingly recognized as an essential complement to clinical symptomatology and functional impairment in children's mental health. Measurement of quality of life (QoL) has the potential to give due weight to the child's perspective. Scope and methodology Our aim was to critically review the current evidence on how childhood mental disorders affect QoL. First, the major challenges in this research field are outlined. Then we present a systematic review of QoL in children and adolescents aged 0–18 years formally diagnosed with a mental and behavioural disorder, as compared to healthy or typically developing children or children with other health conditions. Finally, we discuss limitations of the current evidence base and future directions based on the results of the systematic review and other relevant literature. Findings and conclusions The systematic review identified 41 eligible studies. All were published after the year 2000 and 21 originated in Europe. The majority examined QoL in neurodevelopmental disorders, including attention-deficit hyperactivity disorder (k = 17), autism spectrum disorder (k = 6), motor disorders (k = 5) and intellectual disability (k = 4). Despite substantial heterogeneity, studies demonstrate that self-reported global QoL is significantly reduced compared to typical/healthy controls across several disorders and QoL dimensions. Parents’ ratings were on average substantially lower, casting doubt on the validity of proxy-report. Studies for large diagnostic groups such as depressive disorders, anxiety disorders, (early onset) schizophrenia and eating disorders are largely lacking. We conclude that representative, well-characterized normative and clinical samples as well as longitudinal and qualitative designs are needed to further clarify the construct of QoL, to derive measures of high ecological validity, and to examine how QoL fluctuates over time and is attributable to specific conditions or contextual factors. En ligne : http://dx.doi.org/10.1111/jcpp.12645 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305 [article] Annual Research Review: Quality of life and childhood mental and behavioural disorders – a critical review of the research [Texte imprimé et/ou numérique] / Ulf JONSSON, Auteur ; Iman ALAIE, Auteur ; Anna LÖFGREN WILTEUS, Auteur ; Eric ZANDER, Auteur ; Peter B. MARSCHIK, Auteur ; David COGHILL, Auteur ; Sven BÖLTE, Auteur . - p.439-469. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 58-4 (April 2017) . - p.439-469 Mots-clés : Quality of life  psychopathology  mental health  adolescence Index. décimale : PER Périodiques Résumé : Background An individual's subjective perception of well-being is increasingly recognized as an essential complement to clinical symptomatology and functional impairment in children's mental health. Measurement of quality of life (QoL) has the potential to give due weight to the child's perspective. Scope and methodology Our aim was to critically review the current evidence on how childhood mental disorders affect QoL. First, the major challenges in this research field are outlined. Then we present a systematic review of QoL in children and adolescents aged 0–18 years formally diagnosed with a mental and behavioural disorder, as compared to healthy or typically developing children or children with other health conditions. Finally, we discuss limitations of the current evidence base and future directions based on the results of the systematic review and other relevant literature. Findings and conclusions The systematic review identified 41 eligible studies. All were published after the year 2000 and 21 originated in Europe. The majority examined QoL in neurodevelopmental disorders, including attention-deficit hyperactivity disorder (k = 17), autism spectrum disorder (k = 6), motor disorders (k = 5) and intellectual disability (k = 4). Despite substantial heterogeneity, studies demonstrate that self-reported global QoL is significantly reduced compared to typical/healthy controls across several disorders and QoL dimensions. Parents’ ratings were on average substantially lower, casting doubt on the validity of proxy-report. Studies for large diagnostic groups such as depressive disorders, anxiety disorders, (early onset) schizophrenia and eating disorders are largely lacking. We conclude that representative, well-characterized normative and clinical samples as well as longitudinal and qualitative designs are needed to further clarify the construct of QoL, to derive measures of high ecological validity, and to examine how QoL fluctuates over time and is attributable to specific conditions or contextual factors. En ligne : http://dx.doi.org/10.1111/jcpp.12645 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305

Autism Diagnostic Interview-Revised (ADI-R) Algorithms for Toddlers and Young Preschoolers: Application in a Non-US Sample of 1,104 Children / Annelies A. DE BILDT in Journal of Autism and Developmental Disorders, 45-7 (July 2015)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 45-7 (July 2015) . - p.2076-2091 Titre : Autism Diagnostic Interview-Revised (ADI-R) Algorithms for Toddlers and Young Preschoolers: Application in a Non-US Sample of 1,104 Children Type de document : Texte imprimé et/ou numérique Auteurs : Annelies A. DE BILDT, Auteur ; Sjoerd SYTEMA, Auteur ; Eric ZANDER, Auteur ; Sven BÖLTE, Auteur ; Harald STURM, Auteur ; Nurit YIRMIYA, Auteur ; Maya YAARI, Auteur ; Tony CHARMAN, Auteur ; Erica SALOMONE, Auteur ; Ann LECOUTEUR, Auteur ; Jonathan GREEN, Auteur ; Ricardo CANAL-BEDIA, Auteur ; Patricia GARCÍA PRIMO, Auteur ; Emma VAN DAALEN, Auteur ; Maretha V. DE JONGE, Auteur ; Emilía GUÐMUNDSDÓTTIR, Auteur ; Sigurrós JÓHANNSDÓTTIR, Auteur ; Marija RALEVA, Auteur ; Meri BOSKOVSKA, Auteur ; Bernadette ROGE, Auteur ; Sophie BADUEL, Auteur ; Irma MOILANEN, Auteur ; Anneli YLIHERVA, Auteur ; Jan K. BUITELAAR, Auteur ; IrisJ OOSTERLING, Auteur Année de publication : 2015 Article en page(s) : p.2076-2091 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders  Early diagnosis  Assessment Index. décimale : PER Périodiques Résumé : The current study aimed to investigate the Autism Diagnostic Interview-Revised (ADI-R) algorithms for toddlers and young preschoolers (Kim and Lord, J Autism Dev Disord 42(1):82–93, 2012) in a non-US sample from ten sites in nine countries (n = 1,104). The construct validity indicated a good fit of the algorithms. The diagnostic validity was lower, with satisfactorily high specificities but moderate sensitivities. Young children with clinical ASD and lower language ability were largely in the mild-to-moderate or moderate-to-severe concern ranges of the ADI-R, nearly half of the older and phrase speech ASD-group fell into the little-to-no concern range. Although broadly the findings support the toddler algorithms, further work is required to understand why they might have different properties in different samples to further inform research and clinical use. En ligne : http://dx.doi.org/10.1007/s10803-015-2372-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=261 [article] Autism Diagnostic Interview-Revised (ADI-R) Algorithms for Toddlers and Young Preschoolers: Application in a Non-US Sample of 1,104 Children [Texte imprimé et/ou numérique] / Annelies A. DE BILDT, Auteur ; Sjoerd SYTEMA, Auteur ; Eric ZANDER, Auteur ; Sven BÖLTE, Auteur ; Harald STURM, Auteur ; Nurit YIRMIYA, Auteur ; Maya YAARI, Auteur ; Tony CHARMAN, Auteur ; Erica SALOMONE, Auteur ; Ann LECOUTEUR, Auteur ; Jonathan GREEN, Auteur ; Ricardo CANAL-BEDIA, Auteur ; Patricia GARCÍA PRIMO, Auteur ; Emma VAN DAALEN, Auteur ; Maretha V. DE JONGE, Auteur ; Emilía GUÐMUNDSDÓTTIR, Auteur ; Sigurrós JÓHANNSDÓTTIR, Auteur ; Marija RALEVA, Auteur ; Meri BOSKOVSKA, Auteur ; Bernadette ROGE, Auteur ; Sophie BADUEL, Auteur ; Irma MOILANEN, Auteur ; Anneli YLIHERVA, Auteur ; Jan K. BUITELAAR, Auteur ; IrisJ OOSTERLING, Auteur . - 2015 . - p.2076-2091. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 45-7 (July 2015) . - p.2076-2091 Mots-clés : Autism spectrum disorders  Early diagnosis  Assessment Index. décimale : PER Périodiques Résumé : The current study aimed to investigate the Autism Diagnostic Interview-Revised (ADI-R) algorithms for toddlers and young preschoolers (Kim and Lord, J Autism Dev Disord 42(1):82–93, 2012) in a non-US sample from ten sites in nine countries (n = 1,104). The construct validity indicated a good fit of the algorithms. The diagnostic validity was lower, with satisfactorily high specificities but moderate sensitivities. Young children with clinical ASD and lower language ability were largely in the mild-to-moderate or moderate-to-severe concern ranges of the ADI-R, nearly half of the older and phrase speech ASD-group fell into the little-to-no concern range. Although broadly the findings support the toddler algorithms, further work is required to understand why they might have different properties in different samples to further inform research and clinical use. En ligne : http://dx.doi.org/10.1007/s10803-015-2372-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=261

Functioning and quality of life in transition-aged youth on the autism spectrum - associations with autism symptom severity and mental health problems / Anna BACKMAN in Research in Autism Spectrum Disorders, 104 (June 2023)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 104 (June 2023) . - 102168 Titre : Functioning and quality of life in transition-aged youth on the autism spectrum - associations with autism symptom severity and mental health problems Type de document : Texte imprimé et/ou numérique Auteurs : Anna BACKMAN, Auteur ; Eric ZANDER, Auteur ; Lise ROLL-PETTERSSON, Auteur ; Sarah VIGERLAND, Auteur ; Tatja HIRVIKOSKI, Auteur Article en page(s) : 102168 Langues : Anglais (eng) Mots-clés : Functioning  Co-occurrence  Self-report  Autism spectrum disorder  Transition-age  Quality of life Index. décimale : PER Périodiques Résumé : Previous research notes difficulties in functioning and low quality of life (QoL) among transition-age youth on the autism spectrum, and poor mental health may contribute to these difficulties. This study examined the role of autism symptom severity and mental health problems on self-reported functioning and QoL in treatment-seeking transition-age autistic youth. The study included 140 autistic youth (16-25 years, M = 20.44 (SD = 2.95); n = 91 females [65%], n = 42 males [30%], n = 7 non-binary [5%]). We assessed functioning using a structured interview and QoL through a self-report questionnaire. Factors potentially associated with functioning and QoL were assessed using standardized self-report questionnaires of autism symptom severity, symptoms of anxiety and depression, and information from medical records. Participants reported functioning on the 90th percentile compared to general population norms, indicating significant disability, and also rated low overall QoL. Regression analysis showed that autism symptom severity and anxiety symptoms, and to some extent gender and having an ADHD diagnosis, explained 46% of the variance in overall functioning. Symptoms of anxiety and depression, and to a lesser extent, active friendship, explained 43% of the variance in QoL. Sampling limitations of the study include the overrepresentation of women and newly diagnosed participants. We highlight that functioning and QoL are multifactorial, necessitating a comprehensive assessment of transition-aged autistic youth, including mental health problems, to plan tangible interventions. En ligne : http://dx.doi.org/https://doi.org/10.1016/j.rasd.2023.102168 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=504 [article] Functioning and quality of life in transition-aged youth on the autism spectrum - associations with autism symptom severity and mental health problems [Texte imprimé et/ou numérique] / Anna BACKMAN, Auteur ; Eric ZANDER, Auteur ; Lise ROLL-PETTERSSON, Auteur ; Sarah VIGERLAND, Auteur ; Tatja HIRVIKOSKI, Auteur . - 102168. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 104 (June 2023) . - 102168 Mots-clés : Functioning  Co-occurrence  Self-report  Autism spectrum disorder  Transition-age  Quality of life Index. décimale : PER Périodiques Résumé : Previous research notes difficulties in functioning and low quality of life (QoL) among transition-age youth on the autism spectrum, and poor mental health may contribute to these difficulties. This study examined the role of autism symptom severity and mental health problems on self-reported functioning and QoL in treatment-seeking transition-age autistic youth. The study included 140 autistic youth (16-25 years, M = 20.44 (SD = 2.95); n = 91 females [65%], n = 42 males [30%], n = 7 non-binary [5%]). We assessed functioning using a structured interview and QoL through a self-report questionnaire. Factors potentially associated with functioning and QoL were assessed using standardized self-report questionnaires of autism symptom severity, symptoms of anxiety and depression, and information from medical records. Participants reported functioning on the 90th percentile compared to general population norms, indicating significant disability, and also rated low overall QoL. Regression analysis showed that autism symptom severity and anxiety symptoms, and to some extent gender and having an ADHD diagnosis, explained 46% of the variance in overall functioning. Symptoms of anxiety and depression, and to a lesser extent, active friendship, explained 43% of the variance in QoL. Sampling limitations of the study include the overrepresentation of women and newly diagnosed participants. We highlight that functioning and QoL are multifactorial, necessitating a comprehensive assessment of transition-aged autistic youth, including mental health problems, to plan tangible interventions. En ligne : http://dx.doi.org/https://doi.org/10.1016/j.rasd.2023.102168 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=504

The added value of the combined use of the Autism Diagnostic Interview–Revised and the Autism Diagnostic Observation Schedule: Diagnostic validity in a clinical Swedish sample of toddlers and young preschoolers / Eric ZANDER in Autism, 19-2 (February 2015)  

Public ISBD [article]  inAutism > 19-2 (February 2015) . - p.187-199 Titre : The added value of the combined use of the Autism Diagnostic Interview–Revised and the Autism Diagnostic Observation Schedule: Diagnostic validity in a clinical Swedish sample of toddlers and young preschoolers Type de document : Texte imprimé et/ou numérique Auteurs : Eric ZANDER, Auteur ; Harald STURM, Auteur ; Sven BÖLTE, Auteur Article en page(s) : p.187-199 Langues : Anglais (eng) Mots-clés : Asperger syndrome  assessment  Diagnostic and Statistical Manual of Mental Disorders (4th ed)  early detection  pervasive developmental disorder  psychometrics Index. décimale : PER Périodiques Résumé : The diagnostic validity of the new research algorithms of the Autism Diagnostic Interview–Revised and the revised algorithms of the Autism Diagnostic Observation Schedule was examined in a clinical sample of children aged 18–47 months. Validity was determined for each instrument separately and their combination against a clinical consensus diagnosis. A total of N = 268 children (n = 171 with autism spectrum disorder) were assessed. The new Autism Diagnostic Interview–Revised algorithms (research cutoff) gave excellent specificities (91%?96%) but low sensitivities (44%?52%). Applying adjusted cutoffs (lower than recommended based on receiver operating characteristics) yielded a better balance between sensitivity (77%?82%) and specificity (60%?62%). Findings for the Autism Diagnostic Observation Schedule were consistent with previous studies showing high sensitivity (94%?100%) and alongside lower specificity (52%?76%) when using the autism spectrum cutoff, but better balanced sensitivity (81%?94%) and specificity (81%?83%) when using the autism cutoff. A combination of both the Autism Diagnostic Interview–Revised (with adjusted cutoff) and the Autism Diagnostic Observation Schedule (autism spectrum cutoff) yielded balanced sensitivity (77%?80%) and specificity (87%?90%). Results favor a combined usage of the Autism Diagnostic Interview–Revised and Autism Diagnostic Observation Schedule in young children with unclear developmental problems, including suspicion of autism spectrum disorder. Evaluated separately, the Autism Diagnostic Observation Schedule (cutoff for autism) provides a better diagnostic accuracy than the Autism Diagnostic Interview–Revised. En ligne : http://dx.doi.org/10.1177/1362361313516199 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=257 [article] The added value of the combined use of the Autism Diagnostic Interview–Revised and the Autism Diagnostic Observation Schedule: Diagnostic validity in a clinical Swedish sample of toddlers and young preschoolers [Texte imprimé et/ou numérique] / Eric ZANDER, Auteur ; Harald STURM, Auteur ; Sven BÖLTE, Auteur . - p.187-199. Langues : Anglais (eng) in Autism > 19-2 (February 2015) . - p.187-199 Mots-clés : Asperger syndrome  assessment  Diagnostic and Statistical Manual of Mental Disorders (4th ed)  early detection  pervasive developmental disorder  psychometrics Index. décimale : PER Périodiques Résumé : The diagnostic validity of the new research algorithms of the Autism Diagnostic Interview–Revised and the revised algorithms of the Autism Diagnostic Observation Schedule was examined in a clinical sample of children aged 18–47 months. Validity was determined for each instrument separately and their combination against a clinical consensus diagnosis. A total of N = 268 children (n = 171 with autism spectrum disorder) were assessed. The new Autism Diagnostic Interview–Revised algorithms (research cutoff) gave excellent specificities (91%?96%) but low sensitivities (44%?52%). Applying adjusted cutoffs (lower than recommended based on receiver operating characteristics) yielded a better balance between sensitivity (77%?82%) and specificity (60%?62%). Findings for the Autism Diagnostic Observation Schedule were consistent with previous studies showing high sensitivity (94%?100%) and alongside lower specificity (52%?76%) when using the autism spectrum cutoff, but better balanced sensitivity (81%?94%) and specificity (81%?83%) when using the autism cutoff. A combination of both the Autism Diagnostic Interview–Revised (with adjusted cutoff) and the Autism Diagnostic Observation Schedule (autism spectrum cutoff) yielded balanced sensitivity (77%?80%) and specificity (87%?90%). Results favor a combined usage of the Autism Diagnostic Interview–Revised and Autism Diagnostic Observation Schedule in young children with unclear developmental problems, including suspicion of autism spectrum disorder. Evaluated separately, the Autism Diagnostic Observation Schedule (cutoff for autism) provides a better diagnostic accuracy than the Autism Diagnostic Interview–Revised. En ligne : http://dx.doi.org/10.1177/1362361313516199 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=257

The Gestalt of functioning in autism revisited: First revision of the International Classification of Functioning, Disability and Health Core Sets / Lovisa ALEHAGEN ; Melissa H. BLACK ; John HASSLINGER ; Elina WESSMAN ; Karl LUNDIN REMNÉLIUS ; Peter B. MARSCHIK ; Emily D?ARCY ; Susanna CROWSON ; Megan FREETH ; Andreas SEIDEL ; Sonya GIRDLER ; Eric ZANDER in Autism, 28-9 (September 2024)  

Public ISBD [article]  inAutism > 28-9 (September 2024) . - p.2394-2411 Titre : The Gestalt of functioning in autism revisited: First revision of the International Classification of Functioning, Disability and Health Core Sets Type de document : Texte imprimé et/ou numérique Auteurs : Lovisa ALEHAGEN, Auteur ; Melissa H. BLACK, Auteur ; John HASSLINGER, Auteur ; Elina WESSMAN, Auteur ; Karl LUNDIN REMNÉLIUS, Auteur ; Peter B. MARSCHIK, Auteur ; Emily D?ARCY, Auteur ; Susanna CROWSON, Auteur ; Megan FREETH, Auteur ; Andreas SEIDEL, Auteur ; Sonya GIRDLER, Auteur ; Eric ZANDER, Auteur Article en page(s) : p.2394-2411 Langues : (en) Mots-clés : adolescents  adults  assessment  autism  children  Core Sets  functioning  International Classification of Functioning  Disability and Health  participation  revision  validation  World Health Organization Index. décimale : PER Périodiques Résumé : Functioning is a construct capturing how an individual?s engagement in everyday life emerges from the interaction between the individual and their environment. The World Health Organization?s International Classification of Functioning, Disability and Health (ICF) provides a biopsychosocial framework of functioning. Previously, the ICF was adapted for use in autism by developing Core Sets, a selection of ICF codes from the entire classification for specific conditions. Here, we present the first revision of the ICF of the Core sets for autism from a Delphi-like technique, based on evidence from Core Sets validation/linking studies, stakeholder feedback, and the development and piloting of the autism ICF Core Sets platform. Two ICF second-level codes were removed, and 12 were added to the comprehensive autism Core Set. The added codes reflect body functions in various sensory domains, fine hand use, and environmental factors. Changes were extensive for the age-appropriate brief Core Sets where ICF codes from the initial Core Sets were added or removed. The revisions conducted indicate a continued need for regularly updating Core Sets, based on empirical evidence and stakeholder involvement. We recommend the updated Core Sets for future use in autism research and practice in different age groups and contexts. Lay abstract Autistic people experience individual strengths and challenges as well as barriers and facilitators in their environment. All of these factors contribute to how well autistic people can cope in everyday life, fulfill the roles they choose, and meet their needs. The World Health Organization has developed a system aiming to capture the many factors within people (like how someone thinks and feels) and outside of people (things around a person) that influence their daily living, called the International Classification of Functioning, Disability and Health. The International Classification of Functioning, Disability and Health can be used for different purposes in research and practice to assess people?s situations and plan support measures. Previously in 2019, the International Classification of Functioning, Disability and Health was adapted to autism by developing so-called Core Sets, which are shorter International Classification of Functioning, Disability and Health versions for use in specific conditions. Here, we present the first revisions of the International Classification of Functioning, Disability and Health Core Sets for autism, based on research, development results, and community feedback. Some factors influencing daily life for autistic people were added to the Core Sets, and other factors deemed less relevant were removed. Changes were also made in Core Sets designed for different age groups (0-5, 6-16, and ?17?years). Particularly, contents for sensory processing (like smell, touch, seeing, hearing) were added. We recommend these updated Core Sets for future use in autism research and practice. These changes to the Core Sets after 4?years indicate that there should be ongoing updates based on research and experience from practice and involvement of stakeholders. En ligne : https://dx.doi.org/10.1177/13623613241228896 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=535 [article] The Gestalt of functioning in autism revisited: First revision of the International Classification of Functioning, Disability and Health Core Sets [Texte imprimé et/ou numérique] / Lovisa ALEHAGEN, Auteur ; Melissa H. BLACK, Auteur ; John HASSLINGER, Auteur ; Elina WESSMAN, Auteur ; Karl LUNDIN REMNÉLIUS, Auteur ; Peter B. MARSCHIK, Auteur ; Emily D?ARCY, Auteur ; Susanna CROWSON, Auteur ; Megan FREETH, Auteur ; Andreas SEIDEL, Auteur ; Sonya GIRDLER, Auteur ; Eric ZANDER, Auteur . - p.2394-2411. Langues : (en) in Autism > 28-9 (September 2024) . - p.2394-2411 Mots-clés : adolescents  adults  assessment  autism  children  Core Sets  functioning  International Classification of Functioning  Disability and Health  participation  revision  validation  World Health Organization Index. décimale : PER Périodiques Résumé : Functioning is a construct capturing how an individual?s engagement in everyday life emerges from the interaction between the individual and their environment. The World Health Organization?s International Classification of Functioning, Disability and Health (ICF) provides a biopsychosocial framework of functioning. Previously, the ICF was adapted for use in autism by developing Core Sets, a selection of ICF codes from the entire classification for specific conditions. Here, we present the first revision of the ICF of the Core sets for autism from a Delphi-like technique, based on evidence from Core Sets validation/linking studies, stakeholder feedback, and the development and piloting of the autism ICF Core Sets platform. Two ICF second-level codes were removed, and 12 were added to the comprehensive autism Core Set. The added codes reflect body functions in various sensory domains, fine hand use, and environmental factors. Changes were extensive for the age-appropriate brief Core Sets where ICF codes from the initial Core Sets were added or removed. The revisions conducted indicate a continued need for regularly updating Core Sets, based on empirical evidence and stakeholder involvement. We recommend the updated Core Sets for future use in autism research and practice in different age groups and contexts. Lay abstract Autistic people experience individual strengths and challenges as well as barriers and facilitators in their environment. All of these factors contribute to how well autistic people can cope in everyday life, fulfill the roles they choose, and meet their needs. The World Health Organization has developed a system aiming to capture the many factors within people (like how someone thinks and feels) and outside of people (things around a person) that influence their daily living, called the International Classification of Functioning, Disability and Health. The International Classification of Functioning, Disability and Health can be used for different purposes in research and practice to assess people?s situations and plan support measures. Previously in 2019, the International Classification of Functioning, Disability and Health was adapted to autism by developing so-called Core Sets, which are shorter International Classification of Functioning, Disability and Health versions for use in specific conditions. Here, we present the first revisions of the International Classification of Functioning, Disability and Health Core Sets for autism, based on research, development results, and community feedback. Some factors influencing daily life for autistic people were added to the Core Sets, and other factors deemed less relevant were removed. Changes were also made in Core Sets designed for different age groups (0-5, 6-16, and ?17?years). Particularly, contents for sensory processing (like smell, touch, seeing, hearing) were added. We recommend these updated Core Sets for future use in autism research and practice. These changes to the Core Sets after 4?years indicate that there should be ongoing updates based on research and experience from practice and involvement of stakeholders. En ligne : https://dx.doi.org/10.1177/13623613241228896 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=535

The New DSM-5 Impairment Criterion: A Challenge to Early Autism Spectrum Disorder Diagnosis? / Eric ZANDER in Journal of Autism and Developmental Disorders, 45-11 (November 2015)  

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