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HAL Id: hal-02568533 https://hal.archives-ouvertes.fr/hal-02568533 Submitted on 26 May 2020 HAL is a multi-disciplinary open access archive for the deposit and dissemination of sci- entific research documents, whether they are pub- lished or not. The documents may come from teaching and research institutions in France or abroad, or from public or private research centers. L’archive ouverte pluridisciplinaire HAL, est destinée au dépôt et à la diffusion de documents scientifiques de niveau recherche, publiés ou non, émanant des établissements d’enseignement et de recherche français ou étrangers, des laboratoires publics ou privés. Supporting Parents of a Child with Autism Spectrum Disorder: The French Awakening Carol Sankey, Cyrielle Derguy, Céline Clément, Jennifer Ilg, Émilie Cappe To cite this version: Carol Sankey, Cyrielle Derguy, Céline Clément, Jennifer Ilg, Émilie Cappe. Supporting Parents of a Child with Autism Spectrum Disorder: The French Awakening. Journal of Autism and Developmental Disorders, Springer Verlag, 2019, 49 (3), pp.1142-1153. 10.1007/s10803-018-3800-x. hal-02568533 French awakening! 1 Running head: French awakening Manuscript title: Supporting parents of a child with autism spectrum disorder: the French awakening Carol Sankey, Postdoctoral fellow, Université Paris Descartes, Sorbonne Paris Cité, Institut de Psychologie, Laboratoire de Psychopathologie et Processus de Santé (EA 4057), France Cyrielle Derguy, Associate Professor, Université Paris Descartes, Sorbonne Paris Cité, Institut de Psychologie, Laboratoire de Psychopathologie et Processus de Santé (EA 4057), France Céline Clément, Professor, Université de Strasbourg, Laboratoire Interuniversitaire des Sciences de l’Education et de la Communication (EA 2310), France Jennifer Ilg, Associate researcher, Université de Strasbourg, Laboratoire Interuniversitaire des Sciences de l’Education et de la Communication (EA 2310), France Émilie Cappe, Associate Professor, Université Paris Descartes, Sorbonne Paris Cité, Institut de Psychologie, Laboratoire de Psychopathologie et Processus de Santé (EA 4057), France Corresponding author e-mail: emilie.cappe@parisdescartes.fr! French awakening! 2 Authors and institutional affiliations Carol Sankey, Postdoctoral fellow, Université Paris Descartes, Sorbonne Paris Cité, Institut de Psychologie, Laboratoire de Psychopathologie et Processus de Santé (EA 4057), France. Cyrielle Derguy, Associate Professor, Université Paris Descartes, Sorbonne Paris Cité, Institut de Psychologie, Laboratoire de Psychopathologie et Processus de Santé (EA 4057), France. Céline Clément, Professor, Université de Strasbourg, Laboratoire Interuniversitaire des Sciences de l’Education et de la Communication (EA 2310), France. Jennifer Ilg, Associate researcher, Université de Strasbourg, Laboratoire Interuniversitaire des Sciences de l’Education et de la Communication (EA 2310), France. Émilie Cappe, Associate Professor, Université Paris Descartes, Sorbonne Paris Cité, Institut de Psychologie, Laboratoire de Psychopathologie et Processus de Santé (EA 4057), France. Acknowledgements Authors would like to thank the parents who took part in the three programs as well as all their clinical partners. More particularly, authors are grateful to: - For Beyond ASD: the Centre Universitaire de Pédopsychiatrie du CHRU de Tours, in particular Pr. Frédérique Bonnet-Brilhault, Dr. Joëlle Malvy and Julie Allard Ech Chouikh, and the Centre de Ressources pour l’Autisme de Haute Normandie, in particular Dr. Antoine Rosier and Romain Taton, - For ETAP: the Centre Ressources Autisme Aquitaine, in particular Pr. Manuel Bouvard and the Child psychiatry department of Robert Debré Hospital (Paris), in particular Pr. Richard Delorme French awakening! 3 and Marion Poumeyreau, as well as Katia M’bailara and Solenne Pingault for sharing their expertise in Therapeutic Education and ASD. - For ABC: The Centre Hospitalier Spécialisé de Rouffach, in particular Dr. Benoît Dutray and Laure Wolgensinger, for sharing their expertise in Therapeutic Education and ASD and for the implementation of pilot groups. Author Contributions CS coordinated and drafted the manuscript; CD conceived and coordinated the study regarding the ETAP program and helped draft the manuscript; CC and JI conceived and coordinated the study regarding the ABC program and helped draft the manuscript; ÉC had the idea of the manuscript, conceived and coordinated the study regarding the Beyond ASD program, and supervised and helped draft the manuscript. All authors read and approved the final manuscript. Funding Research for Beyond ASD received financial support from the Caisse Nationale de Solidarité pour l’Autonomie (CNSA) through the 2014 call for projects of the Institut de Recherche en Santé Publique (IRESP). Research for ETAP received financial support from the French ministry of higher education and research and from the Orange Foundation (Grant No. 2013 028). Research for ABC received financial support from the Centre Hospitalier Spécialisé de Rouffach (France) and from the Ecole Supérieure du Professorat et de l’Education of the Université de Strasbourg. French awakening! 4 The authors declare that they have no conflict of interest. Conflict of interest The authors declare that they have no conflict of interest. Ethical Approval For all three programs, participants were given the necessary information and gave their informed consent to take part in the study. In addition, all procedures performed were in accordance with the ethical standards of the respective institutional and/or national research committees and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Address for correspondence Emilie Cappe Laboratoire de Psychopathologie et Processus de Santé (EA 4057) Institut de Psychologie Université Paris Descartes, Sorbonne Paris Cité 71, avenue Édouard Vaillant 92100 Boulogne-Billancourt France Corresponding author e-mail: emilie.cappe@parisdescartes.fr Tél. : +33176533080! French awakening! 5 Manuscript title: Supporting parents of a child with autism spectrum disorder: the French awakening Abstract After being wrongfully blamed for their child’s disturbances, French parents of a child with autism spectrum disorder (ASD) are now perceived as essential partners of care professionals. This shift in perspective has encouraged the development of parent training programs in the field of autism. In this paper, we present three programs currently implemented in France for parents of a child with ASD. We investigated their social validity, from the parents’ perspective. All three programs showed good social validity: attendance rate was good and parents were satisfied. In France, like elsewhere, more parents should be given the opportunity to participate in such programs to help them deal with the specific challenges of raising a child with ASD. Keywords: autism spectrum disorder, parent training, support programs, France. French awakening! 6 Introduction Impact of ASD on parents’ lives Having a child with an autism spectrum disorder (ASD) is a highly stressful experience (Davis and Carter 2008), that affects parent’s wellbeing, as well as their physical and psychological health (Dardas and Ahmad 2014; Giallo et al. 2011; Johnson et al. 2011; Lee et al. 2009). The challenge of raising a child with ASD (Roper et al. 2014) can impair the quality of life of parents and of the whole family (Cappe et al. 2011). Thus, these families have specific needs, linked to the daily difficulties and challenges they have to face (Derguy et al. 2015). While early diagnosis provides a degree of explanation for the child’s behavioral difficulties and helps parents accept that they are not to blame for it (Chamak et al. 2011), it can also be associated with a greater level of parenting stress (Osborne et al. 2008). Recent evidence underscores the importance of working alongside families, as family context can impact the development and escalation of severe behavior problems in children with ASD (Smith et al. 2014). The French historical context of autism In France, the term ‘autism’ has long been associated with negative social representations and carries a painful history marked by psychogenic theories incriminating mothers for their child’s disturbances and excluding parents from childcare (Philip 2009). In the fifties, the psychoanalytical approach was at its strongest and most (fortunately not all) French people considered autism to be a psychological and sociological disorder (Feinstein 2011). Even suggesting there could be organic causes was a sacrilege (Feinstein 2011). In a context of ferocious opposition from the majority of his colleagues, French scientist Gilbert Lelord stands French awakening! 7 out as one of the world’s pioneers in autism research, as he was one of the first to carry out serious EEG tests in children with ASD and to develop an innovative technique designed to encourage communication through play (exchange therapy) (Lelord et al. 1973, 1991). In the seventies, parents initiated associative movements to speak out against the injustice of being wrongfully blamed, raising awareness of the social exclusion and stress they endured (Cappe and Boujut 2016; Philip 2009). French parents have long been dissatisfied with the diagnostic process and have been asking for earlier diagnosis and appropriate educational approaches (Chamak et al. 2011). In the late nineties, Howlin and Moore (1997) found a significant 10-year gap between the UK and France in the age of children at the time of diagnosis. Thanks to the initiatives of some regional child psychiatry hospital units, such as Montpellier, Paris, Toulouse and Tours, that paved the way and provided high-quality evaluations and services, the situation has now improved throughout the territory (Adrien et al. 2001; Baghdadli et al. 2006; Barthélémy et al. 1992; Lelord et al. 1991, Rogé 1989, 1998), with earlier evaluations and shorter waiting lists, aiming to offer earlier interventions to the child and his or her parents (Chamak et al. 2011). The widening and redefinition of the diagnostic criteria, as well as the active involvement and mobilization of parents’ associations have also led to an evolution towards less negative social representations on the uploads/Science et Technologie/ article-sankey-cappe-jadd-version-hal.pdf