The autism diagnostic experiences of French parents / Brigitte CHAMAK in Autism, 15-1 (January 2011)  

Public ISBD [article]  inAutism > 15-1 (January 2011) . - p.83-97 Titre : The autism diagnostic experiences of French parents Type de document : Texte imprimé et/ou numérique Auteurs : Brigitte CHAMAK, Auteur ; Béatrice BONNIAU, Auteur ; Lila OUDAYA, Auteur ; Alain EHRENBERG, Auteur Année de publication : 2011 Article en page(s) : p.83-97 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : This survey focused on French parents’ views of the diagnostic process relating to their child with autism. Data were collected on the age at diagnosis, the time taken to obtain a diagnosis and the difficulties encountered. Questionnaires filled in by the parents (n = 248) and in-depth interviews (n = 43) were analyzed in order to obtain quantitative and qualitative results. The ages of the children ranged from 4 to 45. This approach enabled us to compare the practices of professionals now and in the past. The mean age of diagnosis was 10 ± 8 years from 1960 to 1990, 5 ± 3 years from 1990 to 2005 (3 ± 1 from 2003 to 2005). The results showed that the mean delays between first consultation and diagnosis were reduced. Regarding the way the diagnosis was announced, 63% of the parents of children with autism and 93% of the parents of adults with autism were dissatisfied. We discuss the parents’ reactions and the changes in the diagnostic process. En ligne : http://dx.doi.org/10.1177/1362361309354756 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=117 [article] The autism diagnostic experiences of French parents [Texte imprimé et/ou numérique] / Brigitte CHAMAK, Auteur ; Béatrice BONNIAU, Auteur ; Lila OUDAYA, Auteur ; Alain EHRENBERG, Auteur . - 2011 . - p.83-97. Langues : Anglais (eng) in Autism > 15-1 (January 2011) . - p.83-97 Index. décimale : PER Périodiques Résumé : This survey focused on French parents’ views of the diagnostic process relating to their child with autism. Data were collected on the age at diagnosis, the time taken to obtain a diagnosis and the difficulties encountered. Questionnaires filled in by the parents (n = 248) and in-depth interviews (n = 43) were analyzed in order to obtain quantitative and qualitative results. The ages of the children ranged from 4 to 45. This approach enabled us to compare the practices of professionals now and in the past. The mean age of diagnosis was 10 ± 8 years from 1960 to 1990, 5 ± 3 years from 1990 to 2005 (3 ± 1 from 2003 to 2005). The results showed that the mean delays between first consultation and diagnosis were reduced. Regarding the way the diagnosis was announced, 63% of the parents of children with autism and 93% of the parents of adults with autism were dissatisfied. We discuss the parents’ reactions and the changes in the diagnostic process. En ligne : http://dx.doi.org/10.1177/1362361309354756 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=117

Trajectories, Long-Term Outcomes and Family Experiences of 76 Adults with Autism Spectrum Disorder / Brigitte CHAMAK in Journal of Autism and Developmental Disorders, 46-3 (March 2016)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 46-3 (March 2016) . - p.1084-1095 Titre : Trajectories, Long-Term Outcomes and Family Experiences of 76 Adults with Autism Spectrum Disorder Type de document : Texte imprimé et/ou numérique Auteurs : Brigitte CHAMAK, Auteur ; Béatrice BONNIAU, Auteur Article en page(s) : p.1084-1095 Langues : Anglais (eng) Mots-clés : Autism  Asperger syndrome  Outcome  Trajectory  Adults Index. décimale : PER Périodiques Résumé : The aim of this retrospective study was to retrace the trajectories and long-term outcomes of individuals with autism in France, and to explore the family experiences. Data obtained from parents enables us to follow the trajectories of 76 adults. Two-thirds of adults with severe autism had a very poor outcome. Those with moderate autism had a better outcome. In adulthood, the majority were in residential accommodation. None were living independently. The trajectories of people with Asperger syndrome or high-functioning autism were more positive since all of them attended school for a long time and some went to university. All of them had a good outcome but they remained dependent on aging parents who had few available supports. En ligne : http://dx.doi.org/10.1007/s10803-015-2656-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=281 [article] Trajectories, Long-Term Outcomes and Family Experiences of 76 Adults with Autism Spectrum Disorder [Texte imprimé et/ou numérique] / Brigitte CHAMAK, Auteur ; Béatrice BONNIAU, Auteur . - p.1084-1095. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 46-3 (March 2016) . - p.1084-1095 Mots-clés : Autism  Asperger syndrome  Outcome  Trajectory  Adults Index. décimale : PER Périodiques Résumé : The aim of this retrospective study was to retrace the trajectories and long-term outcomes of individuals with autism in France, and to explore the family experiences. Data obtained from parents enables us to follow the trajectories of 76 adults. Two-thirds of adults with severe autism had a very poor outcome. Those with moderate autism had a better outcome. In adulthood, the majority were in residential accommodation. None were living independently. The trajectories of people with Asperger syndrome or high-functioning autism were more positive since all of them attended school for a long time and some went to university. All of them had a good outcome but they remained dependent on aging parents who had few available supports. En ligne : http://dx.doi.org/10.1007/s10803-015-2656-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=281

Very early signs of autism reported by parents include many concerns not specific to autism criteria / Vincent GUINCHAT in Research in Autism Spectrum Disorders, 6-2 (April-June 2012)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 6-2 (April-June 2012) . - p.589-601 Titre : Very early signs of autism reported by parents include many concerns not specific to autism criteria Type de document : Texte imprimé et/ou numérique Auteurs : Vincent GUINCHAT, Auteur ; Brigitte CHAMAK, Auteur ; Béatrice BONNIAU, Auteur ; Nicolas BODEAU, Auteur ; Didier PERISSE, Auteur ; David COHEN, Auteur ; Anne DANION-GRILLIAT, Auteur Année de publication : 2012 Article en page(s) : p.589-601 Langues : Anglais (eng) Mots-clés : Early diagnosis  Autism  Parents’ first concerns  Questionnaire  France Index. décimale : PER Périodiques Résumé : This study assessed parents’ first concerns about their autistic child. This information was categorized so that it could help healthcare professionals improve early detection of autism. We designed a questionnaire using an open-ended format, and 459 questionnaires were completed by parents to assess difficulties encountered in obtaining a diagnosis for their child. Answers about their first motive of concerns were categorized and compared with regards to age, gender, birth order, age of onset, delay in seeking professional advice, and delay in diagnosis. Concerns about social development or autistic behaviors were frequent, but not exclusive. Parents were divided into three clusters of concerns: (a) an “early awareness group”: which included motor problems and passivity (14.6 months); (b) “intermediate awareness group”: included emotional, hyperactivity, and sleep problems (15.3 months); and (c) a “later awareness group”: which included communication problems, poor social interaction, and autistic-type behaviors (22.3 months). Parents who noticed general concerns not specific to autism were worried earlier, but received a later diagnosis. We suggest that motor problems, and/or emotional problems, and/or the level of a child's activity should encourage frontline professionals to seek autistic symptoms in infants. En ligne : http://dx.doi.org/10.1016/j.rasd.2011.10.005 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=150 [article] Very early signs of autism reported by parents include many concerns not specific to autism criteria [Texte imprimé et/ou numérique] / Vincent GUINCHAT, Auteur ; Brigitte CHAMAK, Auteur ; Béatrice BONNIAU, Auteur ; Nicolas BODEAU, Auteur ; Didier PERISSE, Auteur ; David COHEN, Auteur ; Anne DANION-GRILLIAT, Auteur . - 2012 . - p.589-601. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 6-2 (April-June 2012) . - p.589-601 Mots-clés : Early diagnosis  Autism  Parents’ first concerns  Questionnaire  France Index. décimale : PER Périodiques Résumé : This study assessed parents’ first concerns about their autistic child. This information was categorized so that it could help healthcare professionals improve early detection of autism. We designed a questionnaire using an open-ended format, and 459 questionnaires were completed by parents to assess difficulties encountered in obtaining a diagnosis for their child. Answers about their first motive of concerns were categorized and compared with regards to age, gender, birth order, age of onset, delay in seeking professional advice, and delay in diagnosis. Concerns about social development or autistic behaviors were frequent, but not exclusive. Parents were divided into three clusters of concerns: (a) an “early awareness group”: which included motor problems and passivity (14.6 months); (b) “intermediate awareness group”: included emotional, hyperactivity, and sleep problems (15.3 months); and (c) a “later awareness group”: which included communication problems, poor social interaction, and autistic-type behaviors (22.3 months). Parents who noticed general concerns not specific to autism were worried earlier, but received a later diagnosis. We suggest that motor problems, and/or emotional problems, and/or the level of a child's activity should encourage frontline professionals to seek autistic symptoms in infants. En ligne : http://dx.doi.org/10.1016/j.rasd.2011.10.005 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=150

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