11th June, 12-16:15 CEST
Priorities in autism research and building new connections
This third international webinar organised by the European Council of Autistic People features autistic speakers from Belgium, Croatia, Finland, Ireland, Israel, Ukraine and the United Kingdom.
Register as a participant by booking a ticket by 10th June. Attendance is free, but donations are welcome.
Who is it for?
For autistic people, this event offers an opportunity to seek new contacts, as well as new ideas for advocacy in the context of autism research and participatory approaches.
We also encourage autism professionals, researchers, students, family members and allies of autistic people to participate.
See the programme below, and information about speakers and presentations further down this page.
Download the programme in pdf format through this link.
Zoom session open, information about programme and technical support available
Heta Pukki, President of EUCAP
Annikka Suoninen, EUCAP survey team
Autistic people’s priorities in autism research – results from the EUCAP survey
Jo Bervoets, LAVA
LAVA and participatory autism research in Flanders
Florian Sanden, European Network of Independent Living
The implementation of the UN CRPD and the effects on autistic people
Kosjenka Petek, ASK & Jasmina Stošić, University of Zagreb
Inclusion in mainstream school – perspectives of autistic children and parents
Mary Doherty, Autistic Doctors International
Experiences of participatory roles in biomedical autism research
Kateryna Kravchuk and Valeriia Shapovalova
The needs of autistic adults in Ukraine – recognition by professionals, everyday support and being affected by the war
Heta Pukki, EUCAP
Connecting globally to influence autism research – learnings from the Global Autistic Task Force on Autism Research
Joseph Redford and Chen Gershuni
Autistic pride world-wide – the past, the present and the future we’d like to see
General Q&A (can be extended to 16:30 if necessary)
More about the speakers and topics
Annikka is a Finnish researcher who has thirty years’ experience in conducting research in the social sciences. She has contributed to a wide variety of national and international research projects related to young people and civic participation. Annikka holds a PhD from the University of Jyväskylä.
About the presentation: EUCAP conducted an online survey in order to identify the priorities of autistic people concerning autism policies. The viewpoints of autistic people were collected on three themes: the importance various types of autism studies, need for and access to various types of treatment and support, and how autistic people should be represented. Data was collected in autumn 2021, and the first report of the study will be published in June 2022.
Responses were collected through an online questionnaire which was available in 12 languages. 2441 responses were received from autistic people from 31 different European countries. Of the respondents, 80 % had an autism diagnosis, while 20 % did not have a formal diagnosis but identified as autistic.
In this presentation, Annikka Suoninen will first describe autistic people’s viewpoints on different types of autism research: how much potential risk and benefit they see in different types of research. She will also give a brief introduction to the main results concerning representation and perceived need for and access to different types of treatment and support.
Jo Bervoets is a PhD researcher in the NeuroEpigenEthics ERC project hosted at UAntwerp. He originally graduated as a civil engineer and he worked in the technology sector for about 30 years. Jo got an autism diagnosis when he was 48 years old after crashing out mentally. After that he pursued a lifelong obsession for philosophy and obtained his Master in Philosophy with a meanwhile published master's thesis on autism. His current research focuses on the moral implications of epigenetic findings for Tourette's. Jo also holds a Master's degree in Cognitive Science.
About the presentation: Together with a number of like-minded academically trained autistic people, Jo founded the Reading & Advise Group Adults with Autism (LAVA, per the Dutch acronym). The LAVA group has organized numerous discussions with Flemish autism researchers in line with its mission of participating as directly and as early as possible in the research cycle. LAVA has been recently set up as a formal not-for-profit organization under Belgian law (vzw) in order to better achieve its goals, not only of participating as an autistic voice in the (research priorities of the) autism research community, but also of changing the public's perception of autism.
Florian Sanden is a Policy Coordinator at the European Network on Independent Living, ENIL, an NGO advocating for the removal of all barriers to independent living. He has been working as an EU policy officer for NGOs since 2016. He has an academic background in political science and European studies.
Kosjenka Petek is autistic. She is a primary school teacher and an EFL teacher. She has been teaching for 18 years in various school and language school settings. For the last six years, as an autistic parent of an autistic child in a mainstream school, she has been devoting her time to examine and address the inequalities and discrimination of autistic children in mainstream schools in Croatia.
Jasmina Stošić is an assistant professor at the University of Zagreb, Faculty of Education and Rehabilitation Sciences. Her teaching, research and professional activities are focused on autism. Together with the autistic self-advocates she is currently conducting research on the quality of mainstream inclusion for autistic pupils.
About the presentation: .Although Croatia was one of the first countries to ratify Convention on the Rights of Persons with Disabilities the practical implementation of Article 24 is still faced with numerous challenges. Despite the positive reports sent by the local and national authorities, parents' anecdotal reports have highlighted various problems that the autistic children experience in the mainstream classrooms.
The aim of this small participatory qualitative research was to explore the perspectives of autistic children and their autistic and non-autistic parents on the state of mainstream inclusion, namely teaching practices, accommodations, support, and peer relationships. The purpose was to set the foundation for nationwide quantitative research. Participants were 6 autistic primary school aged children and 4 autistic and 2 non autistic parents. The interview protocol was developed by a team consisting of an autism professional, an autistic teacher, and an autistic child. The participants were offered to complete the survey in a written form or record their answers. Data analysis and interpretation was conducted by the autistic adult and autism professional.
The results have raised various issues about the appropriateness of this form of inclusive practice and highlighted serious concerns about the quality of education for autistic pupils in Croatia.
As an autistic medical doctor, Mary understands the revolutionary impact the rapidly advancing field of genomics & personalised medicine is having in healthcare. As an autistic woman she shares the deep concerns in the autistic community around the potential impacts of such technology for autistic people. As a parent, she is deeply committed to a neurodiversity-affirmative approach to autism, yet as a member of the AIMS-2-Trials A-Reps steering committee she engages with biomedical autism researchers across Europe & beyond.
About the presentation: In this talk, Mary will discuss her experiences and share insights into attempting to influence the direction of biomedical autism research for the benefit of the autistic community. Has this had any positive effect or has it simply been a waste of time and effort?
She will consider the potential healthcare benefits of biomedical research, both for autistic people and in medicine more broadly. She will address how or whether these scientific advances can be embraced by the autistic community, and if biomedical autism research can ever be ethical and participatory. Is the current biomedical autism research agenda merely perpetuating the stereotypes and stigma which is so damaging to our collective wellbeing? Advances in genomics and personalised medicine are accelerating at an astronomical rate, with potentially enormous health benefits for our community but also huge risks. She will discuss how we can best leverage our collective experience to maximise these benefits and minimise the risks.
Valeriia Shapovalova is an autistic adult, ADHDer, and founder of the first support group for autistic adults in Ukraine. She is an autism awareness activist, studies autism and brain structure, and works with autistic children as a volunteer.
Kateryna Kravchuk is an autistic adult and ADHDer. Her special interests include autism and brain functioning in general. She works as neurologist at a local hospital.
About the presentation: Valeriia and Kateryna will present on the situation around adult autistics in Ukraine and their needs regarding recognition by professionals and everyday support. They will also present an introduction on how autistics are affected by the war, based on personal experience.
Topics covered in this presentation from the perspective of autistic Ukrainians include: screening and spreading information about autism, official diagnosis, support services, and employment.
Heta Pukki has been involved in developing autistic peer support and advocacy for 25 years, in various roles, in Finland and internationally. She has academic background in biology and special education.
About the presentation: In late 2021, autistic people from around the world reacted to a publication called The Lancet Commission on the future of care and clinical research in autism. Some of those who disagreed with the Commission's formed an ad hoc committee, reaching people from five continents to author an open letter and an article detailing views of autistic communities, scholars and researchers. In this presentation, Heta will describe some of the challenges involved in this kind of cooperation, and propose ways forward.
Joseph is a 38 year autistic person living in the United Kingdom. He is passionate about fairness and equality for autistic people and if there is a campaign for autistic rights, he'll be there. He has been involved in Autscape, Neurodivergent Labour, and has organised many Autistic pride events, both online and offline since 2015, and co-founded the "Autistic pride alliance" in 2018. He also runs the "Autistic activist hub" a Facebook group which aims to bring together autistic activists and campaigns in a friendly, supportive environment. He also enjoys traveling, writing plays, exploring railway networks, and long distance hiking.
Chen Gershuni is an autistic activist living in Israel. He has been co-organising Autistic Pride Day picnics since 2006. He is documenting and promoting various autistic-led projects, as well as translating works by autistic writers from around the world into Hebrew. Chen is one of the co-founders of Israel's first autistic self-advocacy group, ACI - Autistic Community of Israel, founded in 2006. He sometimes makes music with an all-autistic band called Funky Shanky, and also writes stories that aim to shed light on some of the sad, happy, serious, funny, boring and exciting aspects of life on the autism spectrum.
About the presentation: Autistic pride events have been happening since 2005 and has been one of the longest running autistic traditions. There have been online events worldwide, and physical events in the U.K. U.S. Brazil, Israel and France. Joseph Redford and Chen Gershuni have run many autistic pride events over the years in the U.K. and Israel and will explain the history of autistic pride, where it is today, and where we'd like it to go in the future. As Joseph is based in the U.K. and Chen in Israel, we will also explore the similarities and differences challenges autistic pride faces and ways it is expressed across two different cultures.
Participation is free of charge, but please consider making a small donation to support us to pay our speakers and continue developing autistic people’s advocacy and international cooperation in Europe.