Tuesday 24 May 2016, byVersion imprimable
Appeal of the 111 parents of people with autism
To Mr Francois Hollande
President of the French Republic
Dear Mr President,
You are soon to make a decision regarding the policy for people with disabilities in our country. The 111 parents of autists who have signed this appeal would like to draw your
attention to the fact that with regards to autism, our ability to live together has been undermined, for years, by certain lobbies, which are fighting a true religious war against the parents and professionals who do not share their unfounded views.
Given our current state of knowledge, the diagnosis of autism cannot be based on any kind of medical imaging or biological analysis. Despite all the research carried out throughout the world, the causes of the different forms of autism still remain largely unknown. As far as the care offered to these persons is concerned, the French National Health Authority (Haute Authorité de Santé, HAS) has recognized that no scientific study has confirmed the validity of one particular approach.
And yet some are convinced that they have found the philosopher’s stone: the ABA method, which its proponents present, with all seriousness, as a discovery as incontestable as Newton’s theory of universal gravitation.
Naturally we recognize that any parent has the right to choose the method they deem the most appropriate for their child. We also recognize that the ABA method has developed a number of tools that can in some cases be usefully adopted by all other approaches. However, turned into a dogma that excludes the contributions of all other perspectives, it has been applied, at great expense, for decades in the United States, without lowering the rates of dependent autistic adults. In France, the disappointing results of this method have recently been revealed by a study commissioned by the Government: the 28 experimental ABA centres, financed by the state for a number of years, did not achieve better results than traditional institutions, but at a cost twice to four times higher. Today, the British and Belgian authorities have adopted a much more cautious stance, agreeing that no method can claim a sufficient level of scientific evidence and none can be applied universally to the entire autistic spectrum in all its diversity.
Your services are perfectly aware of all this. We have repeatedly advised them of these facts and cannot understand why they maintain their erroneous views. Neither do we understand why they so obstinately refuse that our approach be represented in the consultation bodies dealing with these questions.
Neither the idea of a single and obligatory truth, nor of state-managed science belong, after all, among the secular and republican values of our country!
The Ministry of State for Disabled People is now planning to impose the ABA method as the only possible approach for all institutions, all calls for proposals and all forms of training, which may otherwise face severe financial sanctions. Of course, by coaxing and cajoling those who make the most noise, we distract the public from the main problem: the grave lack of appropriate places for all our children, but particularly for those who have the most serious problems and cannot adapt to ordinary conditions.
However, the silent majority of families are well aware that, while there is no miraculous method, autistic children, adolescents and adults can nevertheless find more comfort and make enormous progress when they are provided – on a case-by-case basis – with all that the different fields of knowledge have to offer. We must also recognize that what is the right solution for one person at a given time might not be so good for another, and that each person’s journey is different. This is the symbolic meaning of the three “1s”, similar yet different, in the number of the parents who have signed this appeal to reason.
We therefore call on you, Mr President, to ensure that these excesses that threaten our freedom cease, and that the fundamental freedoms in the area of autism are respected: freedom of choice for families in all their variety, freedom of thought and expression, respect for pluralism, as well as respect for the singularity of all human beings, disabled or not.
For pluralism and the freedom of choice
Appeal of the 111 parents of people with autism
to the President of the French Republic
List of signatories
Patrick Sadoun, President of RAAHP and of Autisme Liberté, Author of Autisme: dire l’indicible
Mireille Battut, President of La main à l’oreille; Rica Lévy, Vice-president of Pélagie
Fabrice Bonnet, President of Autisme Pluriel; Laurence Vollin, Author of Quand le handicap s’en mêle
Valérie Gay-Corajoud, Author of Autre-Chose dans la vie de Théo
Jacqueline Berger, Author of Sortir de l’autisme; Eugénie Bourdeau, Director of Sa normalité
Marie Ollier, Author of Les jours de Pépin
Christine Gintz; Mariana Alba de Luna; Françoise Rollux; Ghislaine Meillier; Serge Mallet; Jean-François Havreng; Marc Langlois; Alexandra Dauplay-Langlois; Céline Thévenieau; Evelyne Cappus; Aurore Cahon; Josette Bochaton-Dutruel; Bernard Uginet; Mathieu Grosset-Cahon; Laura Jaffé; Roger Bertrand; Malika Benouaret; Virginie Schott; Thierry Schott; Jean-Claude Shanda-Tonme; Bruno Chourreu; Laure Morize; Marie Gisbert; Valérie André; Prince Ezeaku; Chiwaso Onyechi; Mohamed Boutchiche; Imane Boutchiche; Bruno Mouquet; Céline Lassaux; Geneviève Tahir; Françoise Baudouin; Emile Baudouin; Nick Quinn; Sophie Colot; José Marcos; Delphine Barbusse; Valérie Combe; Michel Milesi; Myriam Milesi; Saena Bakouchi; Brahim Bouchentouf; Marielle Touze; Bruno Jessin; Aghila Gaoua; Rachel Schumacher; Sonia Riahi; Anthony Manzano; Jérôme Dalverny; Daniel Bouteiller; Lydie Bouteiller; Arlette Guiot; Franck Duthil; Bernard Richard; Richard Broda; Emmanuel Broda-Morhange; Lucia Meira; Claudia Lavagne; Médélice Pluton; Eric Mendes; Sandra Vinet; Sophie Bonnet; Perpetue Nonga Minong; Marina Puissant; Patrick Gourdet; Philippe Boyer; Agnès Stanislas; Bernard Meyssonier; Martine Collerais; Gilbert Agasse; Catherine Agasse Gelin; Valérie Chrétien; Christine Beslier; Brigitte Garnier; Hélène Gaillard; Alban Gaillard; Françoise Angot-Fourey; Jean Angot; Bernadette Ponzio; Noémie Aguado; Zina Chamla; Hélène Clémenson; Jean Clémenson; Brigitte Coignard; Stéphane Gabrielli; Michel Regat; Christiane Carpentier; Bernard Carpentier; Maurizio Ottaviani; Claudie Baroni; Jean-Luc Baroni; Corinne Berille; Guy Berille; Stéphanie Limagne-Ringler; Catherine Mayer; Laurence Molières; Olivier Camp; Nanou Simondin; Sophie Venaud; Claude Negrel; Patricia Negrel; Sabine Ciuni.