Autism-Europe International Congress 2016—Autism research and practice in Europe 2016

Autism-Europe International Congress is an international tri-annual conference, organized by the Autism-Europe umbrella interest organization (autismeurope.org) in cooperation with one of its national member organizations. The 11th International Congress conference took place in Edinburgh, UK, 16–18 September 2016, after having been held in Oslo (2007), Catania (2010), and Budapest (2013) in recent years. Under the motto “Happy (indicating quality of life for people on the autism spectrum), Healthy (indicating health outcomes for people on the autism spectrum), and Empowered (indicating full participation and co-production for people on the autism spectrum),” more than 1700 delegates from all parts of the world gathered. Over 600 abstracts were submitted to the call for papers, reviewed, and allocated to posters, brief oral poster presentations, and oral symposia.

Unlike many other periodical meetings, the Autism-Europe Congress has no strong organizational continuity, so each meeting is rather conceptualized from scratch and coined by the responsible national organization. The congress therefore reflects the development of autism interest organizations, from pure parent needs organizations to diverse societal players in the area of autism, and where the respective national organizations stand in this process. However, an overarching distinct feature of the Autism-Europe Congress is that the meetings are not typical research or researchers’ conferences. Although, research perspectives and results are presented by recognized scientists, and researchers visit the congress, the meeting is clearly also interested in non-research-based practical knowledge, and the vast majority of visitors are not researchers, but practitioners, members of autism interest organizations, and other stakeholders, representing a broad audience. Therefore, in my eyes, the Autism-Europe Congress gives a reasonably adequate impression of the clinical and societal reality of autism in Europe, but only an excerpt of the research landscape, the dominating paradigms, and evolving networks.

The Edinburgh meeting was chaired by the National Autistic Society (NAS) in the UK, in cooperation with which also this journal is published. The NAS is one of the oldest, and, from what I can judge, the most modern, innovative, active, and influential autism interest organization in Europe. I had the pleasure and privilege to get an invitation to join the scientific committee by the organizing committee of Autism-Europe Congress 2016. I was particularly pleased with the fact that 4 out of 10 members of the scientific committee were autistic researchers. The latter led to many fruitful discussions, and finally, an interesting and well-balanced program, seriously taking into account self-advocacy perspectives, and including autistic researchers and self-advocates at several prominent places in the program. During the conference, I chaired excellent symposia on transition and adulthood in autism and oral poster sessions on educational issues, as well as two scheduled research discussion groups. Disappointingly, the research discussion groups on “co-production” and “cross-disciplinary” were only weakly attended, and almost no neurotypical researchers showed up. Still, the keynotes and most of the other events were packed, and according to participants’ feedback, they were highly satisfied with the conference and its program.

As mentioned earlier, Autism-Europe Congress does not prioritize basic research in general and biomedical research in particular. I do of course understand and respect this conference tradition and policy, not at least as it also seems to be in accord with preferences of large parts of the conference visitors. Nevertheless, fortunately, compared to previously, the European Union (EU) has in recent years supported autism research as never before. Examples are ASC-INCLUSION (O’Reilly et al., 2016; geniiz.com), COST-ESSEA (Bölte et al., 2013; cost-essea.com), ASSISTID (assistid.eu), MICHELANGELO (michelangelo-project.eu), FIRST (first-asd.eu), DE-ENIGMA (de-enigma.eu), and DREAM (dream2020.eu). Autism-Europe Congress is the most significant autism conference in Europe, and preclinical and applied research are neither competitors nor contradictions, but ideally complementary and synergistic. Thus, personally, I still feel that Autism-Europe Congress could perhaps more explicitly welcome these increased funding efforts by the EU, for instance by providing more space to some ongoing promising light-tower projects, such as EU-AIMS (Loth et al., 2016; eu-aims.eu) or BRAINVIEW (brainview.org). Indeed, EU-AIMS is officially partnered by Autism-Europe and was also acknowledged during a whole panel discussion in Edinburgh. The latter yielded that alike other large basic science projects, it is viewed very critically by the broader autism community. The reasons are that the autistic and also the practical autism community are not really involved in their planning and conductance, and that their goals are not consistent with their fundamental priorities, values, and believes. Thus, projects like EU-AIMS might probably face continuous difficulties to get the community behind it, especially if careful co-production is not getting higher on their agenda. However, a great number of excellent researchers out there do not get involved in the Autism-Europe Congress because they feel it does not focus on science or even feel it is critical toward science, despite the fact that it focuses on the areas which the community prioritizes, which definitely need and deserve research attention and engagement.

This situation is a shame, but I am hopeful that things will change to the better regarding the harmonization of science and community objectives, and the acting together of autistic individuals, their families, practitioners, and researchers. I am curious how these issues will develop after Edinburgh and how they will be treated at the next Autism-Europe Congress held in Paris 2019.