Attitudes of the autism community to early autism research / Sue FLETCHER-WATSON in Autism, 21-1 (January 2017)  

Public ISBD [article]  inAutism > 21-1 (January 2017) . - p.61-74 Titre : Attitudes of the autism community to early autism research Type de document : texte imprimé Auteurs : Sue FLETCHER-WATSON, Auteur ; Fabio APICELLA, Auteur ; Bonnie AUYEUNG, Auteur ; Štěpánka BERANOVÁ, Auteur ; Frédérique BONNET-BRILHAULT, Auteur ; Ricardo CANAL-BEDIA, Auteur ; Tony CHARMAN, Auteur ; Natasha CHERICONI, Auteur ; Inês C. CONCEIÇÃO, Auteur ; Kim DAVIES, Auteur ; Teresa FARRONI, Auteur ; Marie GOMOT, Auteur ; Emily JONES, Auteur ; Anett KAALE, Auteur ; Katarzyna KAPICA, Auteur ; Rafal KAWA, Auteur ; Anneli KYLLIAINEN, Auteur ; Kenneth LARSEN, Auteur ; Jeremy LEFORT-BESNARD, Auteur ; Joëlle MALVY, Auteur ; Sara DIOS MANSO DE, Auteur ; Silvana MARKOVSKA-SIMOSKA, Auteur ; Inbal MILLO, Auteur ; Natercia MIRANDA, Auteur ; Greg PASCO, Auteur ; Ewa PISULA, Auteur ; Marija RALEVA, Auteur ; Bernadette ROGE, Auteur ; Erica SALOMONE, Auteur ; Synnve SCHJØLBERG, Auteur ; Przemysław TOMALSKI, Auteur ; Astrid M. VICENTE, Auteur ; Nurit YIRMIYA, Auteur Article en page(s) : p.61-74 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  development  ethics  infancy  public engagement Index. décimale : PER Périodiques Résumé : Investigation into the earliest signs of autism in infants has become a significant sub-field of autism research. This work invokes specific ethical concerns such as use of ‘at-risk’ language, communicating study findings to parents and the future perspective of enrolled infants when they reach adulthood. This study aimed to ground this research field in an understanding of the perspectives of members of the autism community. Following focus groups to identify topics, an online survey was distributed to autistic adults, parents of children with autism and practitioners in health and education settings across 11 European countries. Survey respondents (n = 2317) were positively disposed towards early autism research, and there was significant overlap in their priorities for the field and preferred language to describe infant research participants. However, there were also differences including overall less favourable endorsement of early autism research by autistic adults relative to other groups and a dislike of the phrase ‘at-risk’ to describe infant participants, in all groups except healthcare practitioners. The findings overall indicate that the autism community in Europe is supportive of early autism research. Researchers should endeavour to maintain this by continuing to take community perspectives into account. En ligne : http://dx.doi.org/10.1177/1362361315626577 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=297 [article] Attitudes of the autism community to early autism research [texte imprimé] / Sue FLETCHER-WATSON, Auteur ; Fabio APICELLA, Auteur ; Bonnie AUYEUNG, Auteur ; Štěpánka BERANOVÁ, Auteur ; Frédérique BONNET-BRILHAULT, Auteur ; Ricardo CANAL-BEDIA, Auteur ; Tony CHARMAN, Auteur ; Natasha CHERICONI, Auteur ; Inês C. CONCEIÇÃO, Auteur ; Kim DAVIES, Auteur ; Teresa FARRONI, Auteur ; Marie GOMOT, Auteur ; Emily JONES, Auteur ; Anett KAALE, Auteur ; Katarzyna KAPICA, Auteur ; Rafal KAWA, Auteur ; Anneli KYLLIAINEN, Auteur ; Kenneth LARSEN, Auteur ; Jeremy LEFORT-BESNARD, Auteur ; Joëlle MALVY, Auteur ; Sara DIOS MANSO DE, Auteur ; Silvana MARKOVSKA-SIMOSKA, Auteur ; Inbal MILLO, Auteur ; Natercia MIRANDA, Auteur ; Greg PASCO, Auteur ; Ewa PISULA, Auteur ; Marija RALEVA, Auteur ; Bernadette ROGE, Auteur ; Erica SALOMONE, Auteur ; Synnve SCHJØLBERG, Auteur ; Przemysław TOMALSKI, Auteur ; Astrid M. VICENTE, Auteur ; Nurit YIRMIYA, Auteur . - p.61-74. Langues : Anglais (eng) in Autism > 21-1 (January 2017) . - p.61-74 Mots-clés : autism spectrum disorder  development  ethics  infancy  public engagement Index. décimale : PER Périodiques Résumé : Investigation into the earliest signs of autism in infants has become a significant sub-field of autism research. This work invokes specific ethical concerns such as use of ‘at-risk’ language, communicating study findings to parents and the future perspective of enrolled infants when they reach adulthood. This study aimed to ground this research field in an understanding of the perspectives of members of the autism community. Following focus groups to identify topics, an online survey was distributed to autistic adults, parents of children with autism and practitioners in health and education settings across 11 European countries. Survey respondents (n = 2317) were positively disposed towards early autism research, and there was significant overlap in their priorities for the field and preferred language to describe infant research participants. However, there were also differences including overall less favourable endorsement of early autism research by autistic adults relative to other groups and a dislike of the phrase ‘at-risk’ to describe infant participants, in all groups except healthcare practitioners. The findings overall indicate that the autism community in Europe is supportive of early autism research. Researchers should endeavour to maintain this by continuing to take community perspectives into account. En ligne : http://dx.doi.org/10.1177/1362361315626577 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=297

Brief Report: Agreement Between Parents and Day-Care Professionals on Early Symptoms Associated with Autism Spectrum Disorders / Kenneth LARSEN in Journal of Autism and Developmental Disorders, 48-4 (April 2018)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 48-4 (April 2018) . - p.1063-1068 Titre : Brief Report: Agreement Between Parents and Day-Care Professionals on Early Symptoms Associated with Autism Spectrum Disorders Type de document : texte imprimé Auteurs : Kenneth LARSEN, Auteur ; Astrid AASLAND, Auteur ; Trond H. DISETH, Auteur Article en page(s) : p.1063-1068 Langues : Anglais (eng) Mots-clés : Day-care centers  Early indentification  Parent professional partnership  Parents Index. décimale : PER Périodiques Résumé : Early identification of Autism Spectrum Disorders (ASD) has the potential to elicit effective early intervention, improving children's level of functioning and developmental trajectories as well as reducing parental stress. Multiple sources of information, including several informants may facilitate early identification. This study examined the agreement between parents and day-care professionals on how they retrospectively recall early symptoms associated with ASD. In this study, we found fair to excellent agreement on early symptoms between parents and day-care professionals. The finding indicates that day-care centres may be a supplementary area for early identification of ASD. More research is needed to explore day-care centers possible role in this early identification. En ligne : http://dx.doi.org/10.1007/s10803-017-3355-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=351 [article] Brief Report: Agreement Between Parents and Day-Care Professionals on Early Symptoms Associated with Autism Spectrum Disorders [texte imprimé] / Kenneth LARSEN, Auteur ; Astrid AASLAND, Auteur ; Trond H. DISETH, Auteur . - p.1063-1068. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 48-4 (April 2018) . - p.1063-1068 Mots-clés : Day-care centers  Early indentification  Parent professional partnership  Parents Index. décimale : PER Périodiques Résumé : Early identification of Autism Spectrum Disorders (ASD) has the potential to elicit effective early intervention, improving children's level of functioning and developmental trajectories as well as reducing parental stress. Multiple sources of information, including several informants may facilitate early identification. This study examined the agreement between parents and day-care professionals on how they retrospectively recall early symptoms associated with ASD. In this study, we found fair to excellent agreement on early symptoms between parents and day-care professionals. The finding indicates that day-care centres may be a supplementary area for early identification of ASD. More research is needed to explore day-care centers possible role in this early identification. En ligne : http://dx.doi.org/10.1007/s10803-017-3355-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=351

Childhood Disintegrative Disorder (CDD): Symptomatology of the Norwegian Patient Population and Parents' Experiences of Patient Regression / Martin John ELLIS in Journal of Autism and Developmental Disorders, 52-4 (April 2022)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 52-4 (April 2022) . - p.1495-1506 Titre : Childhood Disintegrative Disorder (CDD): Symptomatology of the Norwegian Patient Population and Parents' Experiences of Patient Regression Type de document : texte imprimé Auteurs : Martin John ELLIS, Auteur ; Kenneth LARSEN, Auteur ; Sophie S. HAVIGHURST, Auteur Article en page(s) : p.1495-1506 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder  Child  Child Development Disorders, Pervasive/diagnosis  Child, Preschool  Humans  Language  Norway  Parents  Autism  Cdd  Childhood Disintegrative Disorder  Heller Syndrome  Regression  financial or non-financial conflicts of interest to disclose. Index. décimale : PER Périodiques Résumé : Childhood Disintegrative Disorder (CDD) is a rare and little researched developmental disorder characterised by regression in language and social skills after a period of seemingly normal development until at least the age of 2 years. The study contacted all parents of CDD patients in Norway to assess patient symptomatology and parents' experiences of regression via questionnaire or interview. There were 12 participants. Symptomatology was in-line with previous studies, with universal regression in language and social skills and onset predominantly at 2-4 years. Regression was connected to feelings of 'loss' and uncertainty over the prognosis for CDD patients. The study supported CDD diagnostic criteria and showed that CDD patient regression has profound implications for parental well-being. En ligne : http://dx.doi.org/10.1007/s10803-021-05023-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475 [article] Childhood Disintegrative Disorder (CDD): Symptomatology of the Norwegian Patient Population and Parents' Experiences of Patient Regression [texte imprimé] / Martin John ELLIS, Auteur ; Kenneth LARSEN, Auteur ; Sophie S. HAVIGHURST, Auteur . - p.1495-1506. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 52-4 (April 2022) . - p.1495-1506 Mots-clés : Autism Spectrum Disorder  Child  Child Development Disorders, Pervasive/diagnosis  Child, Preschool  Humans  Language  Norway  Parents  Autism  Cdd  Childhood Disintegrative Disorder  Heller Syndrome  Regression  financial or non-financial conflicts of interest to disclose. Index. décimale : PER Périodiques Résumé : Childhood Disintegrative Disorder (CDD) is a rare and little researched developmental disorder characterised by regression in language and social skills after a period of seemingly normal development until at least the age of 2 years. The study contacted all parents of CDD patients in Norway to assess patient symptomatology and parents' experiences of regression via questionnaire or interview. There were 12 participants. Symptomatology was in-line with previous studies, with universal regression in language and social skills and onset predominantly at 2-4 years. Regression was connected to feelings of 'loss' and uncertainty over the prognosis for CDD patients. The study supported CDD diagnostic criteria and showed that CDD patient regression has profound implications for parental well-being. En ligne : http://dx.doi.org/10.1007/s10803-021-05023-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=475

Identification of Symptoms of Autism Spectrum Disorders in the Second Year of Life at Day-Care Centres by Day-Care Staff: Step One in the Development of a Short Observation List / Kenneth LARSEN in Journal of Autism and Developmental Disorders, 48-7 (July 2018)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 48-7 (July 2018) . - p.2267-2277 Titre : Identification of Symptoms of Autism Spectrum Disorders in the Second Year of Life at Day-Care Centres by Day-Care Staff: Step One in the Development of a Short Observation List Type de document : texte imprimé Auteurs : Kenneth LARSEN, Auteur ; Astrid AASLAND, Auteur ; Trond H. DISETH, Auteur Article en page(s) : p.2267-2277 Langues : Anglais (eng) Mots-clés : Autism  Autism spectrum disorder  Day-care centre  Early identification  Kindergarten  Screening Index. décimale : PER Périodiques Résumé : Early symptoms of ASD develop through the second year of life, making a stable ASD diagnosis possible at 24 months of age. However, in general, children with ASD have their diagnosis at an older age. This retrospective study, including 30 children with ASD and 30 control children aged 3-6 years, explored the possibility of developing a short observation list to be used in day care settings for children 12-24 months of age. From 73 symptoms selected from published screeners and observation tools, we were able to construct a list of six symptoms that retrospectively differentiated children with ASD from typically developing children at 12-24 months of age when recalled by day-care personnel. En ligne : http://dx.doi.org/10.1007/s10803-018-3489-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=367 [article] Identification of Symptoms of Autism Spectrum Disorders in the Second Year of Life at Day-Care Centres by Day-Care Staff: Step One in the Development of a Short Observation List [texte imprimé] / Kenneth LARSEN, Auteur ; Astrid AASLAND, Auteur ; Trond H. DISETH, Auteur . - p.2267-2277. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 48-7 (July 2018) . - p.2267-2277 Mots-clés : Autism  Autism spectrum disorder  Day-care centre  Early identification  Kindergarten  Screening Index. décimale : PER Périodiques Résumé : Early symptoms of ASD develop through the second year of life, making a stable ASD diagnosis possible at 24 months of age. However, in general, children with ASD have their diagnosis at an older age. This retrospective study, including 30 children with ASD and 30 control children aged 3-6 years, explored the possibility of developing a short observation list to be used in day care settings for children 12-24 months of age. From 73 symptoms selected from published screeners and observation tools, we were able to construct a list of six symptoms that retrospectively differentiated children with ASD from typically developing children at 12-24 months of age when recalled by day-care personnel. En ligne : http://dx.doi.org/10.1007/s10803-018-3489-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=367

Piloting the Use of a Short Observation List for ASD-Symptoms in Day-Care: Challenges and Further Possibilities / Kenneth LARSEN in Journal of Autism and Developmental Disorders, 50-9 (September 2020)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 50-9 (September 2020) . - p.3413-3423 Titre : Piloting the Use of a Short Observation List for ASD-Symptoms in Day-Care: Challenges and Further Possibilities Type de document : texte imprimé Auteurs : Kenneth LARSEN, Auteur ; Astrid AASLAND, Auteur ; Synnve SCHJØLBERG, Auteur ; Ulla I. HANSEN, Auteur ; Trond H. DISETH, Auteur Article en page(s) : p.3413-3423 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Day-care centers  Early identification  Screening Index. décimale : PER Périodiques Résumé : Early symptoms of autism spectrum disorder (ASD) develop through the second year of life, making a stable ASD diagnosis possible around 24 months of age. However, in general, children with ASD are diagnosed later. In this study we explored the use of a short observation list to detect symptoms associated with ASD in children 12-24 months of age attending typical day-care centers. The results indicate that a short observation list used by day-care teachers does not reveal sufficient properties to be independently used in young children in day-care centers. Further studies should explore multiple and repeated measures for early detection of symptoms associated with ASD in typical day-care centers. En ligne : http://dx.doi.org/10.1007/s10803-019-04313-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=430 [article] Piloting the Use of a Short Observation List for ASD-Symptoms in Day-Care: Challenges and Further Possibilities [texte imprimé] / Kenneth LARSEN, Auteur ; Astrid AASLAND, Auteur ; Synnve SCHJØLBERG, Auteur ; Ulla I. HANSEN, Auteur ; Trond H. DISETH, Auteur . - p.3413-3423. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 50-9 (September 2020) . - p.3413-3423 Mots-clés : Autism spectrum disorder  Day-care centers  Early identification  Screening Index. décimale : PER Périodiques Résumé : Early symptoms of autism spectrum disorder (ASD) develop through the second year of life, making a stable ASD diagnosis possible around 24 months of age. However, in general, children with ASD are diagnosed later. In this study we explored the use of a short observation list to detect symptoms associated with ASD in children 12-24 months of age attending typical day-care centers. The results indicate that a short observation list used by day-care teachers does not reveal sufficient properties to be independently used in young children in day-care centers. Further studies should explore multiple and repeated measures for early detection of symptoms associated with ASD in typical day-care centers. En ligne : http://dx.doi.org/10.1007/s10803-019-04313-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=430

What are we optimizing for in autism screening? Examination of algorithmic changes in the M-CHAT / Synnve SCHJØLBERG in Autism Research, 15-2 (February 2022)  

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What do parents of children with autism expect from participation in research? A community survey about early autism studies / Sue FLETCHER-WATSON in Autism, 23-1 (January 2019)  

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