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International audience ; How does the associative system contribute to shaping public representations and policies regarding autism? This question refers to the more general role of social movements. In the field of health, these movements are increasingly involved in public action and are gaining influence. Associations of parents of children with autism have contributed to public awareness and have played an increasing role in changing public representations and policies on autism, but a gap has widened between the positions adopted by "association experts" who influence the political decisions and situations that many parents face on a daily basis. This article on the role of associations of parents of autistic children in the United States and France aims to analyse the rise of community lobbying that influences political authorities in order to set new standards in the field of autism. ; Comment le système associatif contribue-t-il à façonner les représentations et les politiques publiques en matière d'autisme ? Cette question renvoie au rôle plus général des mouvements sociaux. Dans le domaine de la santé, ces mouvements participent de plus en plus à l'action publique et acquièrent une influence grandissante. Les associations de parents d'enfants autistes ont contribué à la prise de conscience du public et ont joué un rôle croissant dans les changements des représentations et des politiques publiques en matière d'autisme mais un fossé s'est creusé entre les positions adoptées par des « experts associatifs » qui pèsent sur les décisions politiques et les situations que vivent au quotidien de nombreux parents. Cet article sur le rôle des associations de parents d'enfants autistes aux États-Unis et en France vise à analyser la montée en puissance d'un lobbying associatif qui influence les autorités politiques afin d'établir de nouvelles normes en matière d'autisme.

International audience ; Objective: In order to illustrate the obstacles to healthcare and schooling for children with autism, we chose to explore the experiences of families and the systems implemented to accompany children and their parents in the northern districts of Marseille, where precarious situations are numerous and the shortage of places and means affects both the public and the private sectors.Methods and results: Interviews conducted with 26 families and 18 professionals showed that the parents were overall satisfied with health, medical and social services when they had access to them. All of them noted difficulties encountered for school inclusion, and they all stressed the weariness, the stress and the deterioration in quality of life for the family as a whole. The moral obligation to use intensive educational programmes as early as possible, often generates feelings of guilt among parents who cannot afford this type of service.Conclusion: The present policy, consisting in favouring services rather than specialised establishments and in promoting ever-greater implication on the part of parents leads to a work overload for families, with professional and financial consequences that are particularly great for the mothers, in particular those in precarious situations. ; Objectif : Afin d'illustrer les obstacles qui jalonnent les parcours de soins et la scolarité des enfants qui ont reçu un diagnostic d'autisme, nous avons choisi de nous intéresser au vécu des familles et aux dispositifs mis en œuvre pour accompagner les enfants et leurs parents à Marseille nord, où l'indice de désavantage social est très élevé et où la pénurie de places et de moyens concerne aussi bien le secteur public que le secteur privé. Méthode et résultats : Les entretiens réalisés avec 26 familles et 18 professionnels ont permis de montrer que les parents sont majoritairement satisfaits des structures sanitaires et médico-sociales quand ils y ont accès. Tous font part des difficultés rencontrées pour l'inclusion scolaire et insistent sur la fatigue, l'épuisement et la dégradation de la qualité de vie pour l'ensemble de la famille. L'impératif moral de mettre en œuvre le plus tôt possible des programmes éducatifs intensifs engendre souvent un sentiment de culpabilité chez les parents qui n'en ont pas les moyens. Conclusion : La politique actuelle qui consiste à favoriser les services plutôt que les établissements spécialisés et à promouvoir l'implication toujours plus importante des parents, se traduit par une surcharge de travail pour les familles avec des conséquences professionnelles et financières particulièrement importantes pour les mères, surtout pour celles qui se trouvent en situation de précarité.

International audience ; The aim of the Groupe des Dix (named after the 10 founders), set up in France in 1969, was to strengthen relationships between science and politics. Between 1969 and 1976, researchers and politicians held informal meetings which were intended to provide politicians with more rational decision-making tools. The prospect of a global crisis and the ill-suited nature of "classic" politics to solving this crisis were prominent themes in the attempt to link science and politics and to seek solutions "without calling on ideologies such as Marxism or structuralism". Thus these "science and politics" encounters, using a trans-disciplinary approach, set out to elaborate a new system of interpretation, a "new reference grid". The influence of this group can be appreciated through the impact of the different publications of each of its members, and also by the influence of one of its members, Jacques Attali, who became special advisor to the President of the Republic from 1981 to 1991. It was in this setting that he proposed the creation of CESTA, the Centre d'études des systèmes et des technologies avancées that led to the development of a European technological cooperation project, Eurêka, which celebrated its 30th anniversary in 2015. Via its action for the promotion of new technologies, CESTA also took part in the development of cognitive sciences in France by organizing in 1985 the first conference associating computer science, psychology and neurobiology. ; L'objectif du Groupe des Dix, créé en 1969, était d'intensifier les relations entre science et politique. Des chercheurs et des hommes politiques ont participé, entre 1969 et 1976, à des rencontres qui avaient pour but d'aider les politiques à prendre des décisions de façon plus rationnelle. L'influence du Groupe des Dix peut s'évaluer à travers l'impact des différents ouvrages rédigés par chacun de ses membres, mais aussi par la création du Centre d'études des systèmes et des technologies avancées (Cesta) sur proposition de Jacques Attali, ...

International audience ; The controversy over packing therapy used in psychiatry was studied here to illustrate how leading associations can influence public health policies. The main French associations of parents with autistic children succeeded in obtaining the prohibition of packing, announced by the French Secretary of State to the Ministry of Health in April 2016. Parents and professionals who had observed the positive effects of packing when nothing else worked for their part wondered what could be done for self-harming patients. The political authorities followed the opinion of the main associations of parents with autistic children at the expense of that of professionals. In this paper, the actions and discourse of the associations against packing are explored, as are the arguments of the psychiatrists who defend packing therapy. The different phases in the controversy from the first opposition in 2005 and the role of opinion leaders in associations are analyzed. The strategies to discredit psychiatry and to promote behavioral methods are also studied to understand the shift in the balance of power from professionals to association leaders. The mobilization of the associations prompted some psychiatrists to conduct evidence-based research and to formalize their practice. The controversy over packing, involving political decision-making processes, ethical issues and clinical questions, enables us to illustrate a new form of lobbying.

International audience ; How does the associative system contribute to shaping public representations and policies regarding autism? This question refers to the more general role of social movements. In the field of health, these movements are increasingly involved in public action and are gaining influence. Associations of parents of children with autism have contributed to public awareness and have played an increasing role in changing public representations and policies on autism, but a gap has widened between the positions adopted by "association experts" who influence the political decisions and situations that many parents face on a daily basis. This article on the role of associations of parents of autistic children in the United States and France aims to analyse the rise of community lobbying that influences political authorities in order to set new standards in the field of autism. ; Comment le système associatif contribue-t-il à façonner les représentations et les politiques publiques en matière d'autisme ? Cette question renvoie au rôle plus général des mouvements sociaux. Dans le domaine de la santé, ces mouvements participent de plus en plus à l'action publique et acquièrent une influence grandissante. Les associations de parents d'enfants autistes ont contribué à la prise de conscience du public et ont joué un rôle croissant dans les changements des représentations et des politiques publiques en matière d'autisme mais un fossé s'est creusé entre les positions adoptées par des « experts associatifs » qui pèsent sur les décisions politiques et les situations que vivent au quotidien de nombreux parents. Cet article sur le rôle des associations de parents d'enfants autistes aux États-Unis et en France vise à analyser la montée en puissance d'un lobbying associatif qui influence les autorités politiques afin d'établir de nouvelles normes en matière d'autisme.

International audience ; The controversy over packing therapy used in psychiatry was studied here to illustrate how leading associations can influence public health policies. The main French associations of parents with autistic children succeeded in obtaining the prohibition of packing, announced by the French Secretary of State to the Ministry of Health in April 2016. Parents and professionals who had observed the positive effects of packing when nothing else worked for their part wondered what could be done for self-harming patients. The political authorities followed the opinion of the main associations of parents with autistic children at the expense of that of professionals. In this paper, the actions and discourse of the associations against packing are explored, as are the arguments of the psychiatrists who defend packing therapy. The different phases in the controversy from the first opposition in 2005 and the role of opinion leaders in associations are analyzed. The strategies to discredit psychiatry and to promote behavioral methods are also studied to understand the shift in the balance of power from professionals to association leaders. The mobilization of the associations prompted some psychiatrists to conduct evidence-based research and to formalize their practice. The controversy over packing, involving political decision-making processes, ethical issues and clinical questions, enables us to illustrate a new form of lobbying.

International audience The controversy over packing therapy used in psychiatry was studied here to illustrate how leading associations can influence public health policies. The main French associations of parents with autistic children succeeded in obtaining the prohibition of packing, announced by the French Secretary of State to the Ministry of Health in April 2016. Parents and professionals who had observed the positive effects of packing when nothing else worked for their part wondered what could be done for self-harming patients. The political authorities followed the opinion of the main associations of parents with autistic children at the expense of that of professionals. In this paper, the actions and discourse of the associations against packing are explored, as are the arguments of the psychiatrists who defend packing therapy. The different phases in the controversy from the first opposition in 2005 and the role of opinion leaders in associations are analyzed. The strategies to discredit psychiatry and to promote behavioral methods are also studied to understand the shift in the balance of power from professionals to association leaders. The mobilization of the associations prompted some psychiatrists to conduct evidence-based research and to formalize their practice. The controversy over packing, involving political decision-making processes, ethical issues and clinical questions, enables us to illustrate a new form of lobbying.

International audience ; The controversy over packing therapy used in psychiatry was studied here to illustrate how leading associations can influence public health policies. The main French associations of parents with autistic children succeeded in obtaining the prohibition of packing, announced by the French Secretary of State to the Ministry of Health in April 2016. Parents and professionals who had observed the positive effects of packing when nothing else worked for their part wondered what could be done for self-harming patients. The political authorities followed the opinion of the main associations of parents with autistic children at the expense of that of professionals. In this paper, the actions and discourse of the associations against packing are explored, as are the arguments of the psychiatrists who defend packing therapy. The different phases in the controversy from the first opposition in 2005 and the role of opinion leaders in associations are analyzed. The strategies to discredit psychiatry and to promote behavioral methods are also studied to understand the shift in the balance of power from professionals to association leaders. The mobilization of the associations prompted some psychiatrists to conduct evidence-based research and to formalize their practice. The controversy over packing, involving political decision-making processes, ethical issues and clinical questions, enables us to illustrate a new form of lobbying.

International audience ; The aim of the Groupe des Dix (named after the 10 founders), set up in France in 1969, was to strengthen relationships between science and politics. Between 1969 and 1976, researchers and politicians held informal meetings which were intended to provide politicians with more rational decision-making tools. The prospect of a global crisis and the ill-suited nature of "classic" politics to solving this crisis were prominent themes in the attempt to link science and politics and to seek solutions "without calling on ideologies such as Marxism or structuralism". Thus these "science and politics" encounters, using a trans-disciplinary approach, set out to elaborate a new system of interpretation, a "new reference grid". The influence of this group can be appreciated through the impact of the different publications of each of its members, and also by the influence of one of its members, Jacques Attali, who became special advisor to the President of the Republic from 1981 to 1991. It was in this setting that he proposed the creation of CESTA, the Centre d'études des systèmes et des technologies avancées that led to the development of a European technological cooperation project, Eurêka, which celebrated its 30th anniversary in 2015. Via its action for the promotion of new technologies, CESTA also took part in the development of cognitive sciences in France by organizing in 1985 the first conference associating computer science, psychology and neurobiology. ; L'objectif du Groupe des Dix, créé en 1969, était d'intensifier les relations entre science et politique. Des chercheurs et des hommes politiques ont participé, entre 1969 et 1976, à des rencontres qui avaient pour but d'aider les politiques à prendre des décisions de façon plus rationnelle. L'influence du Groupe des Dix peut s'évaluer à travers l'impact des différents ouvrages rédigés par chacun de ses membres, mais aussi par la création du Centre d'études des systèmes et des technologies avancées (Cesta) sur proposition de Jacques Attali, ...

International audience ; How does the associative system contribute to shaping public representations and policies regarding autism? This question refers to the more general role of social movements. In the field of health, these movements are increasingly involved in public action and are gaining influence. Associations of parents of children with autism have contributed to public awareness and have played an increasing role in changing public representations and policies on autism, but a gap has widened between the positions adopted by "association experts" who influence the political decisions and situations that many parents face on a daily basis. This article on the role of associations of parents of autistic children in the United States and France aims to analyse the rise of community lobbying that influences political authorities in order to set new standards in the field of autism. ; Comment le système associatif contribue-t-il à façonner les représentations et les politiques publiques en matière d'autisme ? Cette question renvoie au rôle plus général des mouvements sociaux. Dans le domaine de la santé, ces mouvements participent de plus en plus à l'action publique et acquièrent une influence grandissante. Les associations de parents d'enfants autistes ont contribué à la prise de conscience du public et ont joué un rôle croissant dans les changements des représentations et des politiques publiques en matière d'autisme mais un fossé s'est creusé entre les positions adoptées par des « experts associatifs » qui pèsent sur les décisions politiques et les situations que vivent au quotidien de nombreux parents. Cet article sur le rôle des associations de parents d'enfants autistes aux États-Unis et en France vise à analyser la montée en puissance d'un lobbying associatif qui influence les autorités politiques afin d'établir de nouvelles normes en matière d'autisme.

International audience ; The aim of the Groupe des Dix (named after the 10 founders), set up in France in 1969, was to strengthen relationships between science and politics. Between 1969 and 1976, researchers and politicians held informal meetings which were intended to provide politicians with more rational decision-making tools. The prospect of a global crisis and the ill-suited nature of "classic" politics to solving this crisis were prominent themes in the attempt to link science and politics and to seek solutions "without calling on ideologies such as Marxism or structuralism". Thus these "science and politics" encounters, using a trans-disciplinary approach, set out to elaborate a new system of interpretation, a "new reference grid". The influence of this group can be appreciated through the impact of the different publications of each of its members, and also by the influence of one of its members, Jacques Attali, who became special advisor to the President of the Republic from 1981 to 1991. It was in this setting that he proposed the creation of CESTA, the Centre d'études des systèmes et des technologies avancées that led to the development of a European technological cooperation project, Eurêka, which celebrated its 30th anniversary in 2015. Via its action for the promotion of new technologies, CESTA also took part in the development of cognitive sciences in France by organizing in 1985 the first conference associating computer science, psychology and neurobiology. ; L'objectif du Groupe des Dix, créé en 1969, était d'intensifier les relations entre science et politique. Des chercheurs et des hommes politiques ont participé, entre 1969 et 1976, à des rencontres qui avaient pour but d'aider les politiques à prendre des décisions de façon plus rationnelle. L'influence du Groupe des Dix peut s'évaluer à travers l'impact des différents ouvrages rédigés par chacun de ses membres, mais aussi par la création du Centre d'études des systèmes et des technologies avancées (Cesta) sur proposition de Jacques Attali, ...

Un développement croissant des soins ambulatoires est constaté en pédopsychiatrie, comme l'atteste la multiplication des services d'éducation et de soins à domicile (SESSAD) – moins de 7 000 en 1987 et plus de 44 000 en 2010. Avec l'exemple du fonctionnement d'un SESSAD en Moselle, qui pratique une approche originale, il s'agit, dans cet article, de mieux comprendre les missions de ces structures du secteur médico-social, les tensions engendrées par la multiplication des acteurs et le rôle de l'ARS dans l'orientation de leur fonctionnement, entre demande d'innovation et normalisation. Un SESSAD ne représente qu'une des étapes et qu'un interlocuteur parmi d'autres. Pour les parents, les services ponctuels impliquant plusieurs structures sont souvent sources de tracas, d'incertitudes et de problèmes d'organisation. À quelles conditions un SESSAD peut-il être considéré comme porteur d'innovation, assurer une véritable inclusion scolaire et aider à la fois les enfants, les parents et les enseignants ? Des observations ethnographiques et des entretiens avec les parents et les professionnels d'un SESSAD ont été réalisés en Moselle pour explorer ce type de questions.

National audience ; The example of autism has been chosen to approach the question of discrepancies between official reports describing an integrated care system in Quebec and observations in the field. The analysis of official reports, ethnographic observations in a Montreal hospital, and interviews with professionals, families and representatives from parent associations evidence major changes occurring in the years following 2000, taking the form of efforts to offer better services to the families concerned and their autistic children. However, less than ten years later, changes in management, staff and objectives resulted in a decrease in the offer of services. This article sets out to analyse the policies and practices in autism in the context of reforms in the Quebec health system. ; L'exemple de l'autisme a été choisi pour aborder la question du décalage entre les rapports officiels qui décrivent un système de soins intégrés au Québec et les observations de terrains. L'analyse des rapports officiels, des observations ethnographiques dans un hôpital de Montréal, des entretiens avec les professionnels, les familles et les représentants d'associations de parents ont permis d'identifier de grandes transformations au début des années 2000, dans le sens d'une volonté d'offrir plus de services aux familles. Cependant, des changements de direction, de personnels et d'objectifs ont eu pour conséquence une diminution d'offres de services moins de dix ans plus tard. Cet article a pour objectif d'analyser les politiques et les pratiques d'intervention en autisme et de les replacer dans le contexte plus général des réformes du système de santé québécois.