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EUCAP and researchers meeting, November 26, 2022

The second meeting between EUCAP members and researchers, organized by LAVA and held at Acte-ULB on November 26, 2022, was a moment of discovery and intense exchanges, and an occasion to build many bridges.

The members of the EUCAP delegation, who had come to Brussels for the European Day of Persons with Disabilities, presented the work of their respective autistic-run associations. From veteran Autscape, the first autistic-run conference in Europe that gathers hundreds of autistic people (and allies) each year, to recently created SuntAutist in Romania, through the very active associations of Portugal, Denmark and Finland, we discovered activities that range from providing support groups and autistic-friendly spaces to participating in government agencies and advising on disability legislation. Those association do a pioneering work in making the voice of autistic people heard and raising awareness of the issues they face beyond the stereotypes, such as violence against autistic women and girls: they train teachers and first responders, publish children’s books, and do many more things.

The European Network for Independent Living campaigns for an issue that strongly affects autistic people. The right to live in the community, asserted by article 19 of the UN CRPD, is still out of reach for many autistic people who are institutionalized.

From guidelines on how to approach the sexuality of autistic people to autism-friendly architecture, the researchers present highlighted a work that aims to bring down barriers and support a positive experience of being autistic. We also heard about the research done at Acte-ULB in the domain of speech and communication, and their participation in the creation of a future, much-needed House of Autism in Brussels.

The global autistic response to the Lancet Commission on the future of care and clinical research in autism, product of a large consensus in the community, illustrates the determination of autistic people around the world to be heard in research that concerns them. It was initiated by EUCAP in reaction to a discourse that tends to make autistic people invisible — even as participation is mentioned (but not defined). The innovative collaboration between LAVA and LAuRes showed how fruitful real, respectful participatory research can be, as it challenges all parties to think differently. It inspired ideas to expand it to other regions and countries. A European LAVA?

Getting to know each other and developing ties is an important part of participatory work. There was an enthusiastic desire to keep the conversation going, and beyond that to find ways to synergize what participants did in their respective countries. EUCAP can be a powerful vessel for that.

A Discord channel is on the way and will be what its members make it, and we look forward to more meetings of this caliber.

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