In June 2014, the Autism: from synaptic integration to social communication workshop was held, marking the launch of the Autism Research Network. Alongside National alliance for life and health Sciences (Aviesan) project manager Marie-Louise Kemel, Professor Catherine Barthélémy initiated a program to federate national research forces in the field of autism spectrum disorder. Supported by Aviesan and several non-profit organizations (ARAPI, Les Amis d’Arthur, Monaco Disease Power), this network quickly brought together 58 research teams from across France. Chaired by Professor Eric Courchesne (UCSD, San Diego, USA), its first scientific day was held under the aegis of France’s National Academy of Medicine on February 10, 2017. This initiative was one of the structural measures for research implemented as part of France’s 3rd Autism Plan (2014-2018).

Announced on April 6, 2018, the French National Strategy for Autism in NeuroDevelopmental Disorders 2018-2022 succeeded the 3rd Autism Plan (2013-2017). Falling within this framework was Directive no. 88, related to the creation of the Autism and NeuroDevelopmental Disorders Scientific Interest Group (Autism and NDD GIS), whose inaugural conference took place on October 1, 2019.

Created from the Autism Research Network, the GIS centered the first year of its existence around two priorities:

• Extending its research network to include all neurodevelopmental disorders;
• Linking the research network to issues impacting the individuals concerned and their families.

At its first anniversary conference on November 2, 2020, the Autism and NDD GIS took stock of the scientific initiatives carried out so far, opening up innovative collaborative prospects. Thirty-four new accredited teams from a variety of disciplines had joined the network, making it a veritable national consortium of around 100 research teams based throughout France, bringing together specialists in neurodevelopment, from molecular biology to the human and social sciences. Thanks to the incorporation of this new expertise, two new thematic areas were created:

• Neurodevelopment and learning, coordinated by Professor Ghislaine Dehaene;
• Pre-clinical models, coordinated by Professor Mohamed Jaber.

In order to consolidate research relevant to the needs of the individuals concerned and their families, the GIS created the thinking GRoup of Lay Associations for Science (GRAPS), an internal committee bringing together the 12 non-profit organizations that participate in the ASD-NDD French National Council.

Regarding the most fundamental research to the most applied clinical research, the GIS has worked to develop new multidisciplinary scientific synergies: The Autism and NDD GIS network has supported the implementation of 14 collaborative initiatives within its network: https://autisme-neurodev.org/en/project/support-for-transversal-scientific-research-actions-by-the-autism-and-ndd-gis/

Training of the research community to answer calls for projects and opening of the network to the international

The ambitions of the GIS involved the expansion of its network beyond the national borders, supporting the European and international collaborative initiatives coordinated by the network’s researchers.

This objective translated into the implementation of actions (information meetings, calls for declaration of intent, …) in order to identify and accompany the prematuration of new national and international scientific collaborative initiatives.

These efforts have contributed to strengthening the position of the research community on NDD:

• On the national scale, the average number of NDD projects selected each year by the ANR (French National Agency for Research) generic call for projects has more than doubled since 2019, covering the existence of the GIS, compared to the previous period from 2014-2018.
• On the European scale, fundings for international projects led by French researchers have been obtained, supported by the Horizon Europe program. It must be noted that France reached the 1^st place in terms of number of multinational projects coordinated, funded, and selected by the ERA-NET NEURO 2021 call for projects (on “NeuroDevelopmental Disorders”).

In addition to these actions, initiatives have been organized by the GIS in 2021 and 2022 (https://autisme-neurodev.org/en/project/support-for-international-mobility-2022/) to support young researchers’ international exchanges.

Development of the participatory research on NDD:

A particular focus is about  the development of participatory research in the scientific fields of the GIS. The Autism and NDD GIS has constituted for almost 4 years a decisive space for the implementation of participatory research in France, involving the people with NDD and their families concerned.

The GRAPS has thus taken part in driving research on NDD and co-constructing scientific actions and events targeting priorities of persons with NDD and their relatives:

• The webinar “Sleep and NDD”, held on the 10th June 2021, under the scientific direction of Professor Carmen Schröder (Stars&ND, Strasbourg) ;
• The seminar “NDD: learning throughout life”, held on the 14^th of June 2022 at the Cité Internationale Universitaire of Paris, under the direction of Professor Lucie Hertz-Pannier (NeuroDiderot, NeuroSpin, Paris-Saclay).

This group initiated multidisciplinary working groups (bringing together researchers, practitioners, and non-profits) to co-construct actions for the implementation of news scientific collaborations targeting persons’ daily-file priorities and cross-disciplinary issues for the NDD.

In the continuation of the 2021 seminar, the GRAPS has chosen as a thematic for 2023-2024: “NDD in adulthood: a challenge for scientific research – better understanding complex situations, working together to develop each and everyone’s abilities”, under the scientific coordination of the Professor Jean-Marie Danion (Strasbourg CHU). This work will result in the co-construction of a seminar which will take place on the 30^th Mai 2024 in Paris (Amphi Buffon, University Paris-Cité).

These scientific events constitute the starting point of new scientific participatory research actions; within the scope of international recommended practices; and in life with daily-life priorities.

Reinforcement and organization of a transdisciplinary research network

The events organized by the GIS (seminars, workshops, webinars) have contributed to disseminate scientific knowledge and good practices, thus increasing the visibility of the network’s actions to a wide and varied audience (researchers, caregivers, persons with NDD and their families).

All the actions led have contributed to developing the network, which size has more than doubled since its creation (going from 58 to 131 French research teams, federating more than 750 researchers), as well as its connections with more than 400 international teams. The GIS has also strengthened this year through to partnerships with other national and international scientific networks.

The GIS has been renewed within the scope of the new national strategy for neurodevelopmental disorders (2023-2027).

It will be the opportunity for the GIS to:

• Reinforce its international transdisciplinary research network;
• Foster and accompany new scientific synergies;
• Promote and develop participatory research in the fields of NDD, involving partnerships with persons with NDD, families, and caregivers.