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 established under the French Law of 1901 governing non-profit associations. Autistes France is composed of individuals who share their scientific, legal, and social knowledge. 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 everyone. However, it should be noted that only the members of the association, who are necessarily autistic, play an active role within it.

   What does Autistes France stand for?

The association Autistes France does not carry any projects. However, it has areas of interest: scientific knowledge about autism and the representativity of autists, that is to say the recognition of their situation and their rights. These topics and their consideration are rooted in the principles of French public law and the Constitution, particularly with regard to the rights of persons with disabilities.

In this context, it is important to emphasize that the dissemination of current scientific knowledge about autism contributes to a better understanding of autism and therefore promotes greater respect toward autists.

Representativity refers to the recognition of a situation acknowledged by law. In the case of Autistes France, this concerns the rights of all autists. Consequently, the association does not operate in pursuit of particular interests nor within any ideological, political, or activist framework. This approach guarantees, for its members, the absence of instrumentalization or misuse. The information shared concerns all autists, without distinction or hierarchy.

   Where does Autistes France make a difference?

Autistes France was born from the observation that issues related to the rights and situation of autists remain insufficiently known or respected in France. Although the rights of autists have only recently become a matter of international concern, France is only beginning to engage with this issue.

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 institutions, Autistes France therefore positions itself as a representative body. Autistes France is engaged in the dissemination of information and the sharing of knowledge concerning autism and the question of the representativity of autists. The content produced aims to shed light on these issues and to foster a better understanding of the challenges related to the rights of autists. This engagement involves neither an advisory role nor any decision-making function; it consists solely of the sharing of knowledge, which is the genuine tool for defending citizens’ rights.

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

The question does not arise, since Autistes France does not carry any projects. Consequently, no objective can be validated or postponed, whatever the reasons may be — political conflicts, economic constraints, moral dilemmas, lobbying pressure, or conflicting interests. Regardless of the societal obstacles that have hindered the rights of autists in France for more than 40 years, Autistes France remains an association practicing the associative representativity of autists and the sharing of information. This approach differs from that of many other associations. The association therefore does not operate within a logic of project implementation. Instead, it operates within an approach centered on the dissemination of information and the framework of public law. The question then becomes simple: who respects the law, and who does not. This distinction makes it possible to identify situations in which autists are still instrumentalized.

   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. Autistes France explains the procedure known as “Porter à Connaissance” (PaC).

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.