From 11 to 13 May 2018, more than 70 representatives of European autism organisations from 23 different countries attended the Autism-Europe (AE)’s Annual General Assembly and Council of administration meetings to discuss and vote on issues related to AE’s activities and membership. The meetings took place in Rotterdam (Netherland) on the occasion of the International Society for Autism Research (INSAR) Annual Meeting. Participants also had the opportunity to attend a discussion panel and meet with representatives of the NVA and other national self-advocacy organisations.
Highlights of the meetings included participants welcoming the following five new members associations: Autism Spectrum Information Advice and Meeting Point (AsIAm) from Ireland, Autism Regions from Russia, Association of Non-Government Organisations for Autism of Slovenia, Tohum Foundation from Turkey and AT-Autism from the UK. The Council of Administration was also renewed by half after a vote by the General Assembly. Furthermore, updates about the projects and platforms in which AE is currently involved, discussions about Autism-Europe’s next International Congress in Nice in 2019 and on future priorities were also on the agenda.
Discussion on priorities on education across the EU
General Assembly participants took part in a workshop discussion to share their insight as regards the main barriers to quality inclusive education across the EU. They also discussed the scope of AE future recommendations, by highlighting the potential added value of cooperation at the EU-level to foster better access to education for autistic people.
Many common challenges were identified across Europe:
- lack of information and specific training for teachers at all levels (which constitutes a violation of Article 24 of the UN Convention on the Rights of People with Disabilities);
- insufficient personal engagement, flexibility, and willingness from teachers;
- need of adequate transition towards inclusion across the different education models to avoid trauma of autistic children;
- lack of safe educational learning environments and of networking opportunities for parents;
- Lack of adequate accommodation and empowerment of children in need of a high level of support;
- lack of awareness among teachers, peers, parents, and professionals;
- Need of redefinition of concepts like education, success, and inclusion.
To tackle these issues, members suggested a wide range of recommendations, including: transnational cooperation and exchange of best practices; training on different disabilities for professionals at all levels with a focus on the attitude of the educator; professional approaches focused on children specific needs, abilities, and profile; play on talents and e-learning; consider inclusion as a teaching goal; foster organized cooperation between health professionals and learning environments; reduce the number of students per class, etc.
During the second half of 2018, AE will launch an online survey to gain a more comprehensive overview of the state of play and challenges at stake regarding access to education for autistic people.
Technology demonstration area
As a side-event, Autism-Europe organised a technology demonstration area in which participants could test two different ICT devices in relation to autism.
AE members had the opportunity to play with the first prototype of a humanoid robot designed by the Horizon 2020 programme DE-ENIGMA, in partnership with AE. Zeno the robot is being developed and tested for an emotion-recognition and emotion-expression teaching programme addressed to school-aged autistic children. This approach combines the most common interests of children of school age: technology, cartoon characters (that Zeno resembles) and socializing with peers. During the project that will run until 2019, Zeno will go through several design phases, getting ‘smarter’ every time.
AE member, S.P.O.S.A. from Bratislava (Slovakia), also presented the “Autism Simulator”. This virtual reality experience allows people to experience some sensory issues that some people on the autism spectrum may face in different contexts, like in a coffee shop, at school or in the public transport. It has been designed to support awareness-raising of a broad range of stakeholders on the impact that sensory overload can have on the lives of autistic people.
Involvement of autistic people in the Netherlands
Prior to AE governing bodies meetings, our full member, the Dutch Autism Association (De Nederlandse Vereniging voor Autisme– NVA), organised a panel discussion at the Erasmus MC – Sophia Children’s hospital of Rotterdam.
NVA representatives introduced their association, which celebrates this year its 40th anniversary, and counts more than 11,000 members, of which 40% are adults on the autism spectrum. They stressed the importance of working for and with the active participation of autistic people, and several self-advocacy organisations from the Netherlands. Then, Sander Begeer, Associate Professor at the Department of Developmental Psychology at the Vrije Universiteit Amsterdam, presented the Netherlands Autism Register. The register collects data anonymously and looks at a wide range of topics relevant for autistic people so as to provide a picture of their situation in the Netherlands.
The panel continued with the speech of self-advocate Diederik Weve from PAS Nederland, who presented autistic-lead initiatives in the Netherlands like self-advocacy, mail-groups, forums, speaker academies, networking events and conferences, autism ambassadors in private companies or administration, etc.
The last part of the event was devoted to a panel discussion with seven self-advocates from various countries that discussed a range of issues, such as the double empathy problem (when both autistic and non-autistic people experience difficulties understanding each other when attempting to communicate), the challenges linked to diagnosis and finally the relevance of the medical model of autism vs the social model of autism.