Five Ws : Autistes France ?

   Who is "Autistes France"?

Founded by autists, the Autistes France association, whose full name is "Autistes France. "Diffusion de savoirs scientifiques autisme", is a legal entity constituted under the French law of 1901, which governs non-profit associations in France. Autistes France is made up of people who share their legal and scientific knowledge of autism. To join the association today, all you need to do is agree to the association's statutes and any internal regulations. Membership is open to all, including minors, in accordance with the amended article 2 bis of the July 1, 1901 law on the contract of association. Under certain conditions, members can be recognized as "sociétaires" (associate members). It should be noted that only "sociétaires," who are necessarily individuals on the autism spectrum, play an active role within the association.

   What does Autistes France stand for?

Autistes France is not a project-driven organization. But it does have areas of interest: scientific knowledge on autism and the representation of autists, or in other words, the defense of their rights. These subjects and their implementation are in line with the principles of French public law and the Constitution, particularly as regards the rights of people with disabilities. In this context, it is important to emphasize that the dissemination of current scientific knowledge on autism contributes to a better understanding of autism, which in turn facilitates greater respect for autists. Representativeness, on the other hand, consists in defending a situation recognized by law. In the case of Autistes France, it's the rights of all autists. The association therefore does not act on behalf of certain individuals, out of ideology, nor does it represent private interests. This approach guarantees for members that there will be no instrumentalization or abuses. Nor is there any hierarchization or discrimination of autists. The rights of all autists, with or without ASD and other disabilities, are defended.

   Where does Autistes France make a difference?

Autistes France was born out of the need to defend the rights of autists in France, where these rights are most lacking. As the issue of autists rights has only recently come to the forefront of international concern, France has only just begun to make a commitment in this area.

Internationally, in 2016, the United Nations Special Rapporteur on the Rights of Persons with Disabilities stressed the importance of involving the people concerned in decision-making processes. This recommendation is in line with the principle of representativeness in French public law.

In France, the May 2017 report by the General Inspectorate of Social Affairs (IGAS) highlighted the absence of clear criteria for the representation of associations, as well as shortcomings in the composition and operation of the Autism Plan monitoring committee. In addition, this report revealed ambiguities regarding the representativeness of certain associations, which are both managers of establishments and representatives of autists families or adults. More recently, a conference as part of the "Entretiens du Conseil d'État en droit social" (Council of State Talks on Social Law) featured Jérémie Boroy, the President of the National Advisory Council for the Disabled, on "accessibility" and the principle of an "inclusive" society. This period was also marked by special attention from the President of the french Republic, who "ensures, through his arbitration, the regular functioning of the public authorities [...]. He is the guarantor [...] of compliance with treaties", in accordance with Article 5 of the French Constitution of October 4, 1958.

In response to the concerns raised by these various organizations, Autistes France positions itself as a representative body. The association was founded with the aim of clarifying and improving the representation of autists. This commitment does not involve a role as an advisor or decision-maker, but rather focuses on knowledge sharing, which is the true tool for defending the rights of citizens in France.

   When will the association's projects begin to have an impact?

The question doesn't arise, since Autistes France doesn't carry out projects. Thus, no objective can be validated or postponed, whatever the reasons - political conflicts, economic constraints, moral dilemmas, lobbying pressure or divergent interests. Regardless of the societal obstacles that have hindered the rights of autists in France for over 40 years. Autistes France's mission is to represent autists and to share information. This unique approach, which sets it apart from other associations, does not distance it from their reality. Like these associations, Autistes France will not carry out any projects. No projects, so no illusions about their realization. The hopes of autists, abused for too long, deserve to rest; Autistes France therefore bases itself solely on French public law. Thus, the question is no longer who is "for" or "against" autism, autists or other things, but rather to distinguish between those who respect the law, and those who do not. This dichotomy is particularly threatening to those who seek to instrumentalize autism.

   What does Autistes France intend to do?

Autistes France brings together people with diverse expertise in the legal, societal and scientific aspects of autism. The association plays a major role in public understanding of autism, and contributes to defending the rights of autists. One of the association's strengths lies in its ability to effectively inform public authorities. In other words, Autistes France produces "Porter à Connaissance" (PaC) reports.

This involves sharing and disseminating information, facts and relevant documents to the relevant authorities or decision-making bodies. In this way, Autistes France plays an active role in transmitting knowledge and influencing decision-making processes relating to autism. The association places a high priority on information sharing, but also on exchanges.

Autistes France administers, among other things, the Facebook group "Autisme science droit". Created in 2012, this group now boasts almost 20,000 members, making it the largest French-language group dedicated to autism and autists. An essential characteristic of this group is its publication policy, open to discussions, provided that the shared content pertains to autism and autists, and abides by the rules set by Facebook. In this way, everyone is free to share information within the community, fostering open and respectful exchanges.

Finally, the association also promotes the sharing of knowledge through conferences. These events enable association members and associates to share their in-depth knowledge. For example, Thibaud Moulas spoke at the "Salon des Talents Autistiques: AutiChance" organized by the Espta school on February 18, 2023. The conference highlighted the differences between scientific research on autism and medical knowledge of autism spectrum disorders.

Thus, Autistes France proposes various initiatives (PaC, conference, Facebook group) to facilitate effective and respectful information sharing. The Autistes France association resonates deeply with the world of autism.

   How many "Autistes France"?

Autistes France is one of a kind. But if we take into account all the members, interested parties and Facebook groups participants, the association connects almost 25,000 people. Open to all, Autistes France aspires to one day see the association reach all 70 million French people. Indeed, since autism was declared a "major national cause" in 2012, every French citizen has much to gain by taking an interest in Autistes France.

   Why is it important to support this cause?

France is making slow progress in recognizing and respecting autists. As Peter Crosbie points out in his 2018 article, Autism in France: Why we're 40 years behind:

"The image many outsiders have of autism in France is that there’s a battle between supporters and opponents of a view of autism [...]. But it’s not [...] it’s only about who gets to fix them. [...] The biggest problem for autists in France is cultural."

Indeed, France seems more concerned with who is fit to "treat" autism, rather than understanding autists and their expectations. And this point of view is likely to persist if the word "handicap" continues to be used for all purposes. As long as the notions of impairment, disability, handicap, malady, disorder and neurodiversity are lumped together, the diversity of autists will remain unrecognized. And as long as this diversity or community remains unknown, it will remain voiceless.

It is essential to grasp the notion of autism, which cannot be summed up as a disability, disorder or disease. However, it is equally crucial to recognize that autists, whatever their specificities, are in a situation of disability in a society that struggles to accept their identity. Autism is not a disability, but autists are disabled. Whether some autists present impairements or disabling conditions (such as anxiety, language, sleep, learning or personality disorders, etc.) and others do not, all are confronted with a societal environment that tends to instrumentalize autism. There are many examples of abusive generalizations about autism or of intolerance towards autists: inappropriate treatments (psychoanalysis, packing, ABA method, electroshock, etc.), hospital confinement, abuse of drugs (such as bumetanide, oxytocin, balovaptan, all of which have been shown to be ineffective. And the reason? They have nothing to do with autism) or exclusion from school, work and decision-making processes relating to autism. And yet, when France uses the language of disability to indiscriminately mix up the impairement that some autists may present, the disability of some, the malady specific to some, the disorders encountered by others, as well as the notion of neurodiversity, the result is, unfortunately but unsurprisingly, a predominant interest in "treating" autism rather than "respecting" autists.

To break this pernicious cycle (ignorance of autism leading to ignorance of autists, and so on), and to actively promote the rights of autists, the Autistes France association guarantees the representativeness of autists. By disseminating rigorous information on autism, through conferences, newsletters and discussion groups, Autistes France provides a forum for autists. This enables them to be truly understood and respected, while promoting a better understanding of this neurodiversity.

The writing and editing of this article was done in collaboration with ChatGPT, a language model developed by OpenAI.