The lockdown periods associated with the Covid-19 pandemic are a particularly significant challenge for families of children with autism. Exchanges by e-mail and interviews were aimed at collecting ...testimonies from parents for a better understanding of their difficulties and the help provided by the mobilization of professionals.
Eight parents of autistic children living in the Seine-Saint-Denis area agreed to testify about their experience, either in person, taking into account the barrier measures after the first lockdown, or by telephone during the second lockdown. By way of comparison, e-mails were exchanged with a mother and two fathers of autistic children from higher socio-economic backgrounds living in other parts of France or Belgium. While at the beginning of the first lockdown, some children may have felt soothed by being at home with their parents, the extension of the situation led to crises related to feelings of anxiety or boredom. Despite the closure of many medical-social facilities, professionals mobilized to continue helping families and children whose routines were disrupted.
Depending on the conditions of lockdown, the families' experiences differed and evolved over time. The major problems encountered by some families were the worsening of their child's troubles (self-harm, tantrums, violence, and shouting). Pedagogical tools were adapted by the teachers, activity sheets were sent out, group workshops were organized, and consultations were given at a distance. The teams of the child psychiatry services and the medico-social services have mobilized themselves and have shown reactivity and inventiveness in order to ensure the care and follow-up of children and their families.
The category of autism has undergone huge changes over the past 20 years. This study was undertaken to analyze the changes and how parents have experienced the diagnostic process in France. Data were ...obtained from in-depth interviews with parents and psychiatrists, and from 248 questionnaires with open-ended questions filled in by parents. We compared the experiences of parents with adult autistic children to those of parents with young autistic children. Progressively earlier age at diagnosis was evidenced. These changes occurred later than in North America and the UK, due to the reluctance of French professionals to adopt the new classifications of diseases which they viewed as undervaluing both the physician’s holistic clinical skills, and psychoanalytical interpretations. Parents’ experiences and interviews with psychiatrists were analyzed in order to document changes over time in the diagnostic process following tensions between parents and professionals, and intra-professional debates in psychiatry. Our data support the notion that the diagnosis of autism is historically and nationally contingent. The interactions between changes in the diagnostic process, policy, and parental experiences have led to changes in the way autism is defined, understood, and experienced.
Les périodes de confinement liées à la pandémie de Covid-19 constituent un défi particulièrement important pour les familles d’enfants autistes. Des échanges par courriels et des entretiens ont eu ...pour objectif de recueillir des témoignages de parents afin de mieux appréhender leurs difficultés et l’aide apportée par les professionnels.
Huit parents d’enfants autistes vivant en Seine-Saint-Denis ont accepté de témoigner de leur expérience. À titre de comparaison, des courriels ont été échangés avec une mère et deux pères d’enfants autistes de milieu plus favorisé. Si au début du premier confinement, certains enfants ont pu se sentir apaisés, le prolongement de la situation a engendré des crises liées à des sentiments d’angoisse et d’ennui. Malgré la fermeture de nombreux établissements médico-sociaux, les professionnels se sont mobilisés pour continuer à aider les familles et les enfants dont les routines étaient perturbées.
En fonction des conditions de confinement, le vécu des familles est différent et évolue avec le temps. Les problématiques majeures rencontrées par certaines familles ont été l’aggravation des troubles de leur enfant (automutilations, crises, violence, cris). Des outils pédagogiques ont été adaptés, des fiches d’activité ont été envoyées, des ateliers de groupe et des consultations ont été organisés à distance. Les services de pédopsychiatrie et les services médico-sociaux se sont mobilisés et ont fait preuve de réactivité et d’inventivité afin d’assurer un accompagnement des enfants et de leurs familles.
The lockdown periods associated with the Covid-19 pandemic are a particularly significant challenge for families of children with autism. Exchanges by e-mail and interviews were aimed at collecting testimonies from parents for a better understanding of their difficulties and the help provided by the mobilization of professionals.
Eight parents of autistic children living in the Seine-Saint-Denis area agreed to testify about their experience, either in person, taking into account the barrier measures after the first lockdown, or by telephone during the second lockdown. By way of comparison, e-mails were exchanged with a mother and two fathers of autistic children from higher socio-economic backgrounds living in other parts of France or Belgium. While at the beginning of the first lockdown, some children may have felt soothed by being at home with their parents, the extension of the situation led to crises related to feelings of anxiety or boredom. Despite the closure of many medical-social facilities, professionals mobilized to continue helping families and children whose routines were disrupted.
Depending on the conditions of lockdown, the families’ experiences differed and evolved over time. The major problems encountered by some families were the worsening of their child's troubles (self-harm, tantrums, violence, and shouting). Pedagogical tools were adapted by the teachers, activity sheets were sent out, group workshops were organized, and consultations were given at a distance. The teams of the child psychiatry services and the medico-social services have mobilized themselves and have shown reactivity and inventiveness in order to ensure the care and follow-up of children and their families.
Packing : quand des parents témoignent Chamak, B.
Neuropsychiatrie de l'enfance et de l'adolescence,
November 2020, Volume:
68, Issue:
7
Journal Article
Peer reviewed
Open access
Dans un contexte très polémique qui a donné lieu à une interdiction du packing en 2016, l’objectif de cette étude est de donner la parole aux parents d’enfants autistes qui ne sont pas visibles ...médiatiquement et qui ont fait l’expérience du packing pour leur enfant.
Par l’intermédiaire d’une pédopsychiatre, sept entretiens approfondis ont été réalisés en Seine-Saint-Denis, région où l’indice de désavantage social est très élevé et où la pénurie de places et de moyens est importante. Sept mères d’enfants autistes ont accepté de témoigner pour rendre compte de l’aide apportée par les professionnels et les effets bénéfiques du packing sur les manifestations les plus problématiques : automutilations, problèmes perceptifs, angoisses, agitation, cris.
Ces témoignages révèlent un net décalage entre la satisfaction des parents qui se sont exprimés et le mouvement anti-packing des associations de parents qui influencent les politiques publiques. Ils rendent compte d’une situation complexe qui nécessite la coopération de différents professionnels pour répondre au mieux aux questions que posent certains symptômes et manifestations de détresse extrême.
In a very controversial context that led to a packing ban in 2016, the aim of this study was to give a voice to parents of autistic children who are not visible in the media and who have experienced packing for their child.
Through the intermediary of a child psychiatrist, seven in-depth interviews were carried out in Seine-Saint-Denis, a suburb where the index of social disadvantage is very high and where there is a significant shortage of places and resources. Seven mothers of children with autism agreed to testify to report on the help provided by professionals and the beneficial effects of packing on the most problematic manifestations: self-injury, perceptual problems, anxiety, agitation, and shouting.
These testimonies reveal a clear discrepancy between the satisfaction of the parents who spoke out and the anti-packing movement of parents’ associations that influence public policy. They reflect a complex situation that requires the cooperation of different professionals to best answer the questions posed by certain symptoms and manifestations of extreme distress.
Les controverses autour des pratiques de prise en charge de l’autisme sont fortement médiatisées. Les associations de parents d’enfants autistes, qui ont obtenu que l’autisme soit reconnu « Grande ...Cause nationale 2012 », se focalisent sur la critique de la psychanalyse et la promotion des méthodes comportementales. La majorité des médias reprennent la notion de scandale français et très peu donnent une vision plus mesurée de la situation et rendent compte du travail réalisé par les psychiatres et leurs équipes auprès des familles et de leurs enfants. Le manque d’établissements qui était le premier motif de mobilisation pour les associations des parents des années 1960–1990, est relégué au second plan. La co-construction des problèmes publics par les médias et les associations est analysée pour mieux comprendre comment se forge l’opinion publique.
The controversies about French autism care services receive heavy media coverage. The parents’ associations of autistic children, who obtained that autism became “The Great National Cause for 2012”, heap criticism on psychoanalysis and promote behavioural methods. The notion of French scandal is taken up by most of the media. Only few of them adopt a more moderate attitude and take into account the fieldwork of professionals aiming to help families and children. The shortage of public services, the first aim of the mobilization for the parents’ associations in the 1960–1990s, is relegated to the background. The co-construction of public problems by the media and the associations is analyzed to better understand how public opinion is built.
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.
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.
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.
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.
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 the 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.
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.
Cette mise au point concernant la polémique sur le lien entre autisme et vaccin ROR vise à montrer comment une fraude même révélée et démontrée peut encore influencer le public. La controverse repose ...en grande partie sur un article du britannique Andrew Wakefield dont les résultats publiés en 1998 sont le fruit de la manipulation de données et de conflits d’intérêt majeurs mis en évidence en 2009 par Brian Deer, un journaliste d’investigation qui a travaillé pendant 7 ans sur cette affaire. L’essor du mouvement anti-vaccination, le rôle des associations de parents et la tendance à une perte de confiance envers les institutions sont analysés pour mieux comprendre l’impact de cette publication qui a eu pour conséquence une diminution du taux de vaccination et la recrudescence de cas d’oreillons, de rougeole, de rubéole, mais aussi de poliomyélite, de diphtérie et de coqueluche.
The focus on the controversy on autism and MMR vaccine aims to show how an identified and revealed fraud may still influence people. To a large extent, this controversy relies on a 1998 Wakefield's publication with clear falsification of data. In 2009, after 7 years of investigation, Brian Deer provide evidence of a deliberate fraud and Wakefield's conflict of interest through his involvement with a lawsuit against manufacturers of the MMR Vaccine. The rise of the anti-vaccination movement, the influence of parents’ associations, and the declining trust in state institutions are analyzed to better understand the impact of this publication on the decrease of vaccination and the resurgence of measles, mumps, rubella, poliomyelitis, diphtheria, and pertussis.
The focus on the controversy on autism and MMR vaccine aims to show how an identified and revealed fraud may still influence people. To a large extent, this controversy relies on a 1998 Wakefield's ...publication with clear falsification of data. In 2009, after 7 years of investigation, Brian Deer provide evidence of a deliberate fraud and Wakefield's conflict of interest through his involvement with a lawsuit against manufacturers of the MMR Vaccine. The rise of the anti-vaccination movement, the influence of parents’ associations, and the declining trust in state institutions are analyzed to better understand the impact of this publication on the decrease of vaccination and the resurgence of measles, mumps, rubella, poliomyelitis, diphtheria, and pertussis.
The development of the central nervous system and various pathological contexts imply remodeling or alteration of neuronal networks associated with tissue recruitment of mononuclear phagocytes. ...Purification and culture of brain macrophages have provided a tool for investigating the functions of these cells. We discuss different mechanisms whereby macrophages could directly influence the survival of neurons and the growth of their processes.
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