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 et/ou numérique Auteurs : Sue FLETCHER-WATSON, Auteur ; Fabio APICELLA, Auteur ; Bonnie AUYEUNG, Auteur ; Št?pánka 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 ; Przemys?aw 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 et/ou numérique] / Sue FLETCHER-WATSON, Auteur ; Fabio APICELLA, Auteur ; Bonnie AUYEUNG, Auteur ; Št?pánka 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 ; Przemys?aw 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

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 et/ou numérique Auteurs : Martin John ELLIS, Auteur ; Kenneth LARSEN, Auteur ; Sophie Seychelle 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 et/ou numérique] / Martin John ELLIS, Auteur ; Kenneth LARSEN, Auteur ; Sophie Seychelle 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

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 et/ou numérique 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 et/ou numérique] / 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

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