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

Autism diagnosis differentiates neurophysiological responses to faces in adults with tuberous sclerosis complex / Charlotte TYE in Journal of Neurodevelopmental Disorders, 7-1 (December 2015)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 7-1 (December 2015) . - p.33 Titre : Autism diagnosis differentiates neurophysiological responses to faces in adults with tuberous sclerosis complex Type de document : texte imprimé Auteurs : Charlotte TYE, Auteur ; Teresa FARRONI, Auteur ; Ágnes VOLEIN, Auteur ; Evelyne MERCURE, Auteur ; Leslie TUCKER, Auteur ; Mark Henry JOHNSON, Auteur ; Patrick BOLTON, Auteur Article en page(s) : p.33 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Erp  Face  Gaze  Tuberous sclerosis complex Index. décimale : PER Périodiques Résumé : BACKGROUND: Autism spectrum disorder (ASD) is a common and highly heritable neurodevelopmental disorder that is likely to be the outcome of complex aetiological mechanisms. One strategy to provide insight is to study ASD within tuberous sclerosis complex (TSC), a rare disorder with a high incidence of ASD, but for which the genetic cause is determined. Individuals with ASD consistently demonstrate face processing impairments, but these have not been examined in adults with TSC using event-related potentials (ERPs) that are able to capture distinct temporal stages of processing. METHODS: For adults with TSC (n = 14), 6 of which had a diagnosis of ASD, and control adults (n = 13) passively viewed upright and inverted human faces with direct or averted gaze, with concurrent EEG recording. Amplitude and latency of the P1 and N170 ERPs were measured. RESULTS: Individuals with TSC + ASD exhibited longer N170 latencies to faces compared to typical adults. Typical adults and adults with TSC-only exhibited longer N170 latency to inverted versus upright faces, whereas individuals with TSC + ASD did not show latency differences according to face orientation. In addition, individuals with TSC + ASD showed increased N170 latency to averted compared to direct gaze, which was not demonstrated in typical adults. A reduced lateralization was shown for the TSC + ASD groups on P1 and N170 amplitude. CONCLUSIONS: The findings suggest that individuals with TSC + ASD may have similar electrophysiological abnormalities to idiopathic ASD and are suggestive of developmental delay. Identifying brain-based markers of ASD that are similar in TSC and idiopathic cases is likely to help elucidate the risk pathways to ASD. En ligne : http://dx.doi.org/10.1186/s11689-015-9129-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=348 [article] Autism diagnosis differentiates neurophysiological responses to faces in adults with tuberous sclerosis complex [texte imprimé] / Charlotte TYE, Auteur ; Teresa FARRONI, Auteur ; Ágnes VOLEIN, Auteur ; Evelyne MERCURE, Auteur ; Leslie TUCKER, Auteur ; Mark Henry JOHNSON, Auteur ; Patrick BOLTON, Auteur . - p.33. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 7-1 (December 2015) . - p.33 Mots-clés : Autism spectrum disorder  Erp  Face  Gaze  Tuberous sclerosis complex Index. décimale : PER Périodiques Résumé : BACKGROUND: Autism spectrum disorder (ASD) is a common and highly heritable neurodevelopmental disorder that is likely to be the outcome of complex aetiological mechanisms. One strategy to provide insight is to study ASD within tuberous sclerosis complex (TSC), a rare disorder with a high incidence of ASD, but for which the genetic cause is determined. Individuals with ASD consistently demonstrate face processing impairments, but these have not been examined in adults with TSC using event-related potentials (ERPs) that are able to capture distinct temporal stages of processing. METHODS: For adults with TSC (n = 14), 6 of which had a diagnosis of ASD, and control adults (n = 13) passively viewed upright and inverted human faces with direct or averted gaze, with concurrent EEG recording. Amplitude and latency of the P1 and N170 ERPs were measured. RESULTS: Individuals with TSC + ASD exhibited longer N170 latencies to faces compared to typical adults. Typical adults and adults with TSC-only exhibited longer N170 latency to inverted versus upright faces, whereas individuals with TSC + ASD did not show latency differences according to face orientation. In addition, individuals with TSC + ASD showed increased N170 latency to averted compared to direct gaze, which was not demonstrated in typical adults. A reduced lateralization was shown for the TSC + ASD groups on P1 and N170 amplitude. CONCLUSIONS: The findings suggest that individuals with TSC + ASD may have similar electrophysiological abnormalities to idiopathic ASD and are suggestive of developmental delay. Identifying brain-based markers of ASD that are similar in TSC and idiopathic cases is likely to help elucidate the risk pathways to ASD. En ligne : http://dx.doi.org/10.1186/s11689-015-9129-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=348

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