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

A Combined Study on the Use of the Child Behavior Checklist 1½-5 for Identifying Autism Spectrum Disorders at 18 Months / Natasha CHERICONI in Journal of Autism and Developmental Disorders, 51-11 (November 2021)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 51-11 (November 2021) . - p.3829-3842 Titre : A Combined Study on the Use of the Child Behavior Checklist 1½-5 for Identifying Autism Spectrum Disorders at 18 Months Type de document : Texte imprimé et/ou numérique Auteurs : Natasha CHERICONI, Auteur ; Giulia BALBONI, Auteur ; V. COSTANZO, Auteur ; A. MANCINI, Auteur ; M. PROSPERI, Auteur ; R. LASALA, Auteur ; Raffaella TANCREDI, Auteur ; M. L. SCATTONI, Auteur ; F. MURATORI, Auteur ; Fabio APICELLA, Auteur Article en page(s) : p.3829-3842 Langues : Anglais (eng) Mots-clés : Autism Spectrum Disorder/diagnosis  Checklist  Child  Child Behavior  Humans  Male  Siblings  Autism spectrum disorder screening  Baby sibling paradigm  Cbcl 1½-5  Familial high-risk Index. décimale : PER Périodiques Résumé : The capacity of the Child Behavior Checklist 1½-5 (CBCL 1½-5) to identify children with autism spectrum disorder (ASD) at 18 months was tested on 37 children clinically referred for ASD and 46 children at elevated likelihood of developing ASD due to having an affected brother/sister. At 30 months the clinically referred children all received a confirmatory diagnosis, and 10 out of 46 siblings received a diagnosis of ASD. CBCL 1½-5 profiles were compared with a group of matched children with typical development (effect of cognitive level controlled for). The capacity of the CBCL 1½-5 DSM Oriented-Pervasive Developmental Problems scale to differentiate correctly between children diagnosed with ASD and children with typical development appeared dependent on group ascertainment methodology. En ligne : http://dx.doi.org/10.1007/s10803-020-04838-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=453 [article] A Combined Study on the Use of the Child Behavior Checklist 1½-5 for Identifying Autism Spectrum Disorders at 18 Months [Texte imprimé et/ou numérique] / Natasha CHERICONI, Auteur ; Giulia BALBONI, Auteur ; V. COSTANZO, Auteur ; A. MANCINI, Auteur ; M. PROSPERI, Auteur ; R. LASALA, Auteur ; Raffaella TANCREDI, Auteur ; M. L. SCATTONI, Auteur ; F. MURATORI, Auteur ; Fabio APICELLA, Auteur . - p.3829-3842. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 51-11 (November 2021) . - p.3829-3842 Mots-clés : Autism Spectrum Disorder/diagnosis  Checklist  Child  Child Behavior  Humans  Male  Siblings  Autism spectrum disorder screening  Baby sibling paradigm  Cbcl 1½-5  Familial high-risk Index. décimale : PER Périodiques Résumé : The capacity of the Child Behavior Checklist 1½-5 (CBCL 1½-5) to identify children with autism spectrum disorder (ASD) at 18 months was tested on 37 children clinically referred for ASD and 46 children at elevated likelihood of developing ASD due to having an affected brother/sister. At 30 months the clinically referred children all received a confirmatory diagnosis, and 10 out of 46 siblings received a diagnosis of ASD. CBCL 1½-5 profiles were compared with a group of matched children with typical development (effect of cognitive level controlled for). The capacity of the CBCL 1½-5 DSM Oriented-Pervasive Developmental Problems scale to differentiate correctly between children diagnosed with ASD and children with typical development appeared dependent on group ascertainment methodology. En ligne : http://dx.doi.org/10.1007/s10803-020-04838-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=453

Psychometric properties, factor structure and cross-cultural validity of the quantitative CHecklist for autism in toddlers (Q-CHAT) in an Italian community setting / Liliana RUTAA in Research in Autism Spectrum Disorders, 64 (August 2019)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 64 (August 2019) . - p.39-48 Titre : Psychometric properties, factor structure and cross-cultural validity of the quantitative CHecklist for autism in toddlers (Q-CHAT) in an Italian community setting Type de document : Texte imprimé et/ou numérique Auteurs : Liliana RUTAA, Auteur ; Giuseppe Maurizio ARDUINO, Auteur ; Antonella GAGLIANO, Auteur ; Fabio APICELLA, Auteur ; Elisa LEONARDI, Auteur ; Francesca I. FAMÀ, Auteur ; Natasha CHERICONI, Auteur ; Valeria COSTANZO, Auteur ; Nazarena TURCO, Auteur ; Gennaro TARTARISCO, Auteur ; Carrie ALLISON, Auteur ; Simon BARON-COHEN, Auteur ; Giovanni PIOGGIA, Auteur ; Flavia CHIAROTTI, Auteur ; Filippo MURATORI, Auteur Article en page(s) : p.39-48 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders  Screening  Cross-cultural validity  Q?CHAT Index. décimale : PER Périodiques Résumé : Background In the past decade, several screening instruments have been developed to detect toddlers at risk for autism, both in clinical and unselected samples.We aimed to assess the validity and cross-cultural stability of the Quantitative CHecklist for Autism in Toddlers (Q?CHAT), a quantitative and normally distributed measure of autistic traits, during routine paediatric developmental surveillance in a large Italian community of toddlers. Methods A group of n?=?2400 unselected Italian toddlers were screened by paediatricians during routine well?CHild visits between 18 and 24 months,in three Italian regions, representative of the North, Centre and South of Italy. The psychometric properties and factor structure of the Q?CHAT were explored and compared with published literature from Asia and the UK. Results The total Q?CHAT scores in our sample confirmed a normal distribution. Mean Q?CHAT scores across regions were consistent with those reported in UK studies and likewise, a gender effect was found, with boys scoring higher than girls.We also found a remarkable consistency with the three-factor structure of the Asian Q?CHAT. Internal consistency was acceptable for both the Q?CHAT total score and the three factors. Conclusions Our results confirm the dimensional distribution of autistic traits and related symptoms in unselected populations across different cultures. The Q?CHAT is a valid and reliable dimensional screening instrument to be used within a routine paediatric setting during well-child assessments.The main normative data and factor structure replicated in our sample En ligne : https://doi.org/10.1016/j.rasd.2019.04.004 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=399 [article] Psychometric properties, factor structure and cross-cultural validity of the quantitative CHecklist for autism in toddlers (Q-CHAT) in an Italian community setting [Texte imprimé et/ou numérique] / Liliana RUTAA, Auteur ; Giuseppe Maurizio ARDUINO, Auteur ; Antonella GAGLIANO, Auteur ; Fabio APICELLA, Auteur ; Elisa LEONARDI, Auteur ; Francesca I. FAMÀ, Auteur ; Natasha CHERICONI, Auteur ; Valeria COSTANZO, Auteur ; Nazarena TURCO, Auteur ; Gennaro TARTARISCO, Auteur ; Carrie ALLISON, Auteur ; Simon BARON-COHEN, Auteur ; Giovanni PIOGGIA, Auteur ; Flavia CHIAROTTI, Auteur ; Filippo MURATORI, Auteur . - p.39-48. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 64 (August 2019) . - p.39-48 Mots-clés : Autism spectrum disorders  Screening  Cross-cultural validity  Q?CHAT Index. décimale : PER Périodiques Résumé : Background In the past decade, several screening instruments have been developed to detect toddlers at risk for autism, both in clinical and unselected samples.We aimed to assess the validity and cross-cultural stability of the Quantitative CHecklist for Autism in Toddlers (Q?CHAT), a quantitative and normally distributed measure of autistic traits, during routine paediatric developmental surveillance in a large Italian community of toddlers. Methods A group of n?=?2400 unselected Italian toddlers were screened by paediatricians during routine well?CHild visits between 18 and 24 months,in three Italian regions, representative of the North, Centre and South of Italy. The psychometric properties and factor structure of the Q?CHAT were explored and compared with published literature from Asia and the UK. Results The total Q?CHAT scores in our sample confirmed a normal distribution. Mean Q?CHAT scores across regions were consistent with those reported in UK studies and likewise, a gender effect was found, with boys scoring higher than girls.We also found a remarkable consistency with the three-factor structure of the Asian Q?CHAT. Internal consistency was acceptable for both the Q?CHAT total score and the three factors. Conclusions Our results confirm the dimensional distribution of autistic traits and related symptoms in unselected populations across different cultures. The Q?CHAT is a valid and reliable dimensional screening instrument to be used within a routine paediatric setting during well-child assessments.The main normative data and factor structure replicated in our sample En ligne : https://doi.org/10.1016/j.rasd.2019.04.004 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=399

Reciprocity in Interaction: A Window on the First Year of Life in Autism / Fabio APICELLA in Autism Research and Treatment, (April 2013)  

Public ISBD [article]  inAutism Research and Treatment > (April 2013) . - 12 p. Titre : Reciprocity in Interaction: A Window on the First Year of Life in Autism Type de document : Texte imprimé et/ou numérique Auteurs : Fabio APICELLA, Auteur ; Natasha CHERICONI, Auteur ; Valeria COSTANZO, Auteur ; Sara BALDINI, Auteur ; Lucia BILLECI, Auteur ; David COHEN, Auteur ; Filippo MURATORI, Auteur Année de publication : 2013 Article en page(s) : 12 p. Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : From early infancy onwards, young children appear motivated to engage reciprocally with others and share psychological states during dyadic interactions. Although poor reciprocity is one of the defining features of autism spectrum disorders (ASDs), few studies have focused on the direct assessment of real-life reciprocal behavior; consequently, our knowledge of the nature and the development of this core feature of autism is still limited. In this study, we describe the phenomenon of reciprocity in infant-caregiver interaction by analyzing family movies taken during the first year of life of 10 infants with ASD and 9 infants with typical development (TD). We analyzed reciprocal behaviors by means of a coding scheme developed for this purpose (caregiver-infant reciprocity scale (CIRS)). Infants with ASD displayed less motor activity during the first semester and subsequently fewer vocalizations, compared to TD infants. Caregivers of ASD infants showed in the second semester shorter periods of involvement and a reduction of affectionate touch. These results suggest that from the first months of life a nonsynchronic motor-vocal pattern may interfere in different ways with the development of reciprocity in the primary relationship between infants later diagnosed with ASD and their caregivers. En ligne : http://dx.doi.org/10.1155/2013/705895 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=201 [article] Reciprocity in Interaction: A Window on the First Year of Life in Autism [Texte imprimé et/ou numérique] / Fabio APICELLA, Auteur ; Natasha CHERICONI, Auteur ; Valeria COSTANZO, Auteur ; Sara BALDINI, Auteur ; Lucia BILLECI, Auteur ; David COHEN, Auteur ; Filippo MURATORI, Auteur . - 2013 . - 12 p. Langues : Anglais (eng) in Autism Research and Treatment > (April 2013) . - 12 p. Index. décimale : PER Périodiques Résumé : From early infancy onwards, young children appear motivated to engage reciprocally with others and share psychological states during dyadic interactions. Although poor reciprocity is one of the defining features of autism spectrum disorders (ASDs), few studies have focused on the direct assessment of real-life reciprocal behavior; consequently, our knowledge of the nature and the development of this core feature of autism is still limited. In this study, we describe the phenomenon of reciprocity in infant-caregiver interaction by analyzing family movies taken during the first year of life of 10 infants with ASD and 9 infants with typical development (TD). We analyzed reciprocal behaviors by means of a coding scheme developed for this purpose (caregiver-infant reciprocity scale (CIRS)). Infants with ASD displayed less motor activity during the first semester and subsequently fewer vocalizations, compared to TD infants. Caregivers of ASD infants showed in the second semester shorter periods of involvement and a reduction of affectionate touch. These results suggest that from the first months of life a nonsynchronic motor-vocal pattern may interfere in different ways with the development of reciprocity in the primary relationship between infants later diagnosed with ASD and their caregivers. En ligne : http://dx.doi.org/10.1155/2013/705895 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=201

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)  

Public ISBD [article]  inAutism > 23-1 (January 2019) . - p.175-186 Titre : What do parents of children with autism expect from participation in research? A community survey about early autism studies Type de document : Texte imprimé et/ou numérique Auteurs : Sue FLETCHER-WATSON, Auteur ; K. LARSEN, Auteur ; E. SALOMONE, Auteur ; Fabio APICELLA, Auteur ; Bonnie AUYEUNG, Auteur ; S. BERANOVA, Auteur ; Frédérique BONNET-BRILHAULT, Auteur ; R. C. BEDIA, Auteur ; Tony CHARMAN, Auteur ; Natasha CHERICONI, Auteur ; I. C. CONCEICAO, Auteur ; K. DAVIES, Auteur ; T. FARONI, Auteur ; Marie GOMOT, Auteur ; E. JONES, Auteur ; A. KAALE, Auteur ; Katarzyna KAPICA, Auteur ; R. KAWA, Auteur ; A. KYLLIAINEN, Auteur ; J. LEFORT-BESNARD, Auteur ; J. MALVY, Auteur ; S. M. DE DIOS, Auteur ; S. MARKOVSKA-SIMOSKA, Auteur ; I. MILLO, Auteur ; N. MIRANDA, Auteur ; G. PASCO, Auteur ; E. PISULA, Auteur ; M. RALEVA, Auteur ; Bernadette ROGE, Auteur ; Synnve SCHJØLBERG, Auteur ; P. TOMALSKI, Auteur ; A. M. VICENTE, Auteur ; N. YIRMIYA, Auteur ; Cost Essea Working GRP, Auteur Article en page(s) : p.175-186 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  development  ethics  infancy  parents  spectrum  intervention  outcomes  adults  risk  Psychology Index. décimale : PER Périodiques Résumé : Engagement with stakeholders is an essential part of the research process. This is particularly the case for early autism research with infant cohorts and their families, where a range of ethical issues are pertinent. Here, we report on a large survey of parents who have a child on the autism spectrum (n = 1040) which specifically probed attitudes to early autism research. The large majority of parents showed positive attitudes overall, and these were associated with greater access to services, higher service quality ratings and higher rates of intellectual disability among their children. Parents valued the scientific goals of research, but half of parents also reported that an intervention component would be an essential prerequisite for them to participate in research. If enrolled in a study, parents were positive about most commonly used measures though less favourably disposed towards brain scans for children. They valued direct contact with the research team and openness in data sharing. We interpret our findings in terms of lessons for the early autism research community and for stakeholder engagement projects. En ligne : http://dx.doi.org/10.1177/1362361317728436 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=379 [article] What do parents of children with autism expect from participation in research? A community survey about early autism studies [Texte imprimé et/ou numérique] / Sue FLETCHER-WATSON, Auteur ; K. LARSEN, Auteur ; E. SALOMONE, Auteur ; Fabio APICELLA, Auteur ; Bonnie AUYEUNG, Auteur ; S. BERANOVA, Auteur ; Frédérique BONNET-BRILHAULT, Auteur ; R. C. BEDIA, Auteur ; Tony CHARMAN, Auteur ; Natasha CHERICONI, Auteur ; I. C. CONCEICAO, Auteur ; K. DAVIES, Auteur ; T. FARONI, Auteur ; Marie GOMOT, Auteur ; E. JONES, Auteur ; A. KAALE, Auteur ; Katarzyna KAPICA, Auteur ; R. KAWA, Auteur ; A. KYLLIAINEN, Auteur ; J. LEFORT-BESNARD, Auteur ; J. MALVY, Auteur ; S. M. DE DIOS, Auteur ; S. MARKOVSKA-SIMOSKA, Auteur ; I. MILLO, Auteur ; N. MIRANDA, Auteur ; G. PASCO, Auteur ; E. PISULA, Auteur ; M. RALEVA, Auteur ; Bernadette ROGE, Auteur ; Synnve SCHJØLBERG, Auteur ; P. TOMALSKI, Auteur ; A. M. VICENTE, Auteur ; N. YIRMIYA, Auteur ; Cost Essea Working GRP, Auteur . - p.175-186. Langues : Anglais (eng) in Autism > 23-1 (January 2019) . - p.175-186 Mots-clés : autism spectrum disorder  development  ethics  infancy  parents  spectrum  intervention  outcomes  adults  risk  Psychology Index. décimale : PER Périodiques Résumé : Engagement with stakeholders is an essential part of the research process. This is particularly the case for early autism research with infant cohorts and their families, where a range of ethical issues are pertinent. Here, we report on a large survey of parents who have a child on the autism spectrum (n = 1040) which specifically probed attitudes to early autism research. The large majority of parents showed positive attitudes overall, and these were associated with greater access to services, higher service quality ratings and higher rates of intellectual disability among their children. Parents valued the scientific goals of research, but half of parents also reported that an intervention component would be an essential prerequisite for them to participate in research. If enrolled in a study, parents were positive about most commonly used measures though less favourably disposed towards brain scans for children. They valued direct contact with the research team and openness in data sharing. We interpret our findings in terms of lessons for the early autism research community and for stakeholder engagement projects. En ligne : http://dx.doi.org/10.1177/1362361317728436 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=379

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