Autistic advocacy across Europe
EUCAP Webinar 2021
27th November, 9-16 CET
This second international webinar organised by the European Council of Autistic People featured autistic speakers from ten countries, presenting on cutting-edge advocacy themes and initiatives by autistic people’s organisations.
Who was it for?
For autistic people, this event offered an opportunity to seek new contacts, new ideas for advocacy, or deeper understanding of autism issues in a variety of cultural contexts.
The webinar was also meant for autism professionals, researchers, students, family members and allies of autistic people who wished to gain new insight from autistic communities to draw on in their professional or voluntary roles.
Zoom session open, information about programme and technical support available
Heta Pukki, President of EUCAP
The EUCAP survey team: Silke Lipinski, Annikka Suoninen, Diederik Weve
EUCAP survey data as a means to support advocacy
Ovidiu Platon, Founder of suntAutist
Romanian autistic voices, between diversity and conformity
Q&A with the survey team and Ovidiu Platon
(original pragramme cancelled)
Respecting Diversity Safeguarding Equity: Malta’s 2021-2030 National Autism Strategy
Michal Roškaňuk, Director of Adventor, Secretary General of EUCAP
Are crisis helplines of the Czech Republic ready to help autistic people?
Thibault Corneloup, Founding Member and Board Member of Cle Autistes
L’urgence de la désinstitutionnalisation : l’évaluation de la France sur la CDPH / The urgency for deinstitutionalization: CRPD and the evaluation of France
Carmen Molina, President of CEPAMA
87 mil voces: campaña contra las violencias en el autismo / 87 thousand voices: campaign against violence targeting autism
Leneh Buckle, researcher, Board Member of National Autistic Taskforce, founding member and Trustee of Autscape Organisation
Inclusive Governance – Consulting for Scottish Autism
Roberto Mastropasqua, Board Member and Secretary of Neuropeculiar APS
From Mars to Earth: The Experience of AUTcamp
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.
Diederik has been a co-researcher in the Dutch project Onderzoeksagenda Autisme, which worked to identify needs and priorities for autism research among different stakeholders. He is project lead of the Autminds foundation, and organises the annual autistic-led conference Autminds in the Netherlands. Until retirement, Diederik worked as a technical safety engineer in the petrochemical industry.
About the presentation: Diederik will present together with Annikka on the EUCAP survey, a pan-European web-based survey of the views and priorities of autistic people, created by researchers who are autistic themselves.
The survey sought to map the views of autistic people in Europe on three broad issues: The kinds of research that should be conducted, the needs and wishes of autistic people regarding support and treatments, and how autistic people wish to be represented in decision-making.
In this presentation, the survey team will describe preliminary results, with a focus on how these can be used in advocating for autistic rights.
Ovidiu Platon, autistic self-advocate and founder of suntAutist, lives in Timișoara, Romania. Ovidiu has pursued a wide range of interests in the course of his studies and professionally, including philosophy, permaculture, painting, design and marketing. Ovidiu currently makes his living in the fields of marketing strategy and special effects for film. He also has some training in psychotherapy, adding professional knowledge to his personal experience of autism and neurodivergence in general.
In his presentation, Ovidiu paints a hopeful picture of autistic activism in Romania and the challenges of creating a cohesive autistic community while disseminating positive scientific information about autism in the context of Romanian families and society. He will detail the process of creating a starting point for an active autistic community and finding allies thus far in a society deprived of information, resources and trust.
(Presentation cancelled) Cadno Coch is Male, in his late 50’s with an Llb hons degree gained in his early 40’s; diagnosed as Autistic in his mid-50’s, he is also a father to an adult autist with a complex diagnosis. Before going back to education in his late-thirties to facilitate studying law, he had a wide variety of employed roles including butler, farm-worker, foundry worker, despatch-rider, lorry-driver, engineer, mechanic and many more. He also operated his own small transport/despatch company, twice. Furthermore, he has been a home-based carer for family members with a variety of complex needs for almost 30 years.
Cadno has been a passionate and constructive Diversity Practitioner within the public sector for over 17 years, working across all protected characteristics for various organisations at both strategic and operational levels and has spent many years being a ‘critical friend’ and delivering an informed and balanced lived-experience/community voice directly into many strategic public-sector committees. Using knowledge gained from academic study, his diversity/equalities work and his personal experience of being a carer and a disabled person, he has built many good working relationships with dedicated people across the public sector, from user groups to strategic steering groups, that have led to positive change.
Much of Cadno's work has been within the Criminal Justice Sector and he is an organisational lead on autism and a Force area Co-ordinator for the National Police Autism Association (NPAA). In recent years, Cadno has been doing similar work within Betsi Cadwaladr University Health Board where, amongst other things, he has developed a Board-wide Autism Interest and Support Group. He also currently works as a volunteer for North Wales Integrated Autism Service (NW IAS) where he helps develop training and service delivery, and has a seat on their operational group and is Vice Chair of NW IAS’s service user feedback group ‘Spectrum Voices’. His main thrust in this work is based around seeking to reduce the staggering inequality Autistic people live with across all societal systems and he regularly designs delivers presentations that highlight such issues.
About the presentation: Individual countries in the dis-United Kingdom each have governments with law-making powers and control over health, education and other areas known as devolved powers. As most of our Executive Directors live and work in Wales, much of Awtistig-DU/Autistic-UK’s work is with Welsh government and Welsh Health Boards, local-authorities, etc. After several failed attempts by Welsh government to increase equality of access to public-services, we now have a new statutory Code of Practice for The Delivery of Autism Services. This presentation highlights Why it is needed, an example of what is contained within it, and how Awtistig-DU/Awtistic -UK will do their best to ensure it has the maximum benefit for Autists who live in Wales and are subject to Welsh Government Services.
Blaine Schembri is 26 years old, and was diagnosed with autism at the age of seven. His work, with the Directorate for Disability Issues, and the Autistic Persons' Working Group of the Autism Advisory Council, aims at making Malta and other European countries more autism-friendly. The goal of these groups is to seek partnerships with other services, combine ideas and green-light projects for adding accessibility and freedom to people of all ages on the autism spectrum.
Blaine has been working in the disability sector for over eight years. Over the past year, Blaine has followed a course at the University of Malta titled 'Community Access for Disabled Persons'. He is also a member of the Young People's Disability Rights Forum of Malta.
About the presentation: On 30th March 2021, the Maltese government announced the publication of their National Autism Strategy, simultaneously launching a public consultation on autism related support and services. The consultation helped to finalize the Strategy. The final version was published on 11th November.
The Autism Advisory Council has ensured the involvement of autistic people, families, professionals and experts in the creation of the strategy. They Council will continue to have a role in overseeing the implementation of the strategy, as well as generally engaging with stakeholders.
Thibault is an autistic activist and co-founder of CLE Autistes. Since 2018, this organisation has aimed to defend the rights of autistic people, to build the French autistic community, to promote mutual aid and solidarity, to fight for neurodiversity and against all methods aimed at rendering people non-autistic.
This work is conducted in a challenging enviroment, as France is characterized by a lack of deinstitutionalization, lack of disabillity rights, reliance on psychoanalysis in the treatment of autism, and a very low prevalence of autism diagnosis.
About the presentation: France's evaluation of the UN CRPD Convention took place in August 2021, and the report was delivered in September. It was found that France had not implemented the CRPD in its legislation and that the medical model of disability remained central. Forced treatments were defended, as well as the absence of a deinstitutionalization policy. Thibault Corneloup recounts the fight of CLE Autistes as a member of the civil society consulted by the CRPD Committee. Several reports were written and hearings conducted in order to influence the conclusions and analyses of the committee, leading to some succesful outcomes.
Michal is the Secretary General of EUCAP and the CEO of Adventor, an NGO based in Prague, Czechia. Adventor runs the community center KOPEC in the center of Prague, where they provide a range of services for the autistic community. Simultaneously, they provide supported employment, and the majority of employees are autistic. Adventor o.s. also works as umbrella organization for an independent group of voluntary autistic community called A-komunita.
About the presentation: As there were voices of autistic adults that there are some bad experiences with crisis helplines, both Adventor and A-komunita articulated the question if those objections are rare cases with unclear causes, or if they could indicate that there is something imperfect. The organisation has recently started to work with local authorities to help improve the capacity of crisis helplines to respond to autistic people's needs.
Carmen Molina faced what it meant to be autistic in 2009 when her position at the head of a major cultural institution was compromised because of her neurodivergence. She had been told by her family about her autistic condition, diagnosed in childhood, and that according to the doctors, she would be cured as she grew older. She never received specialized attention to her needs or adjustments for her social inclusion. She learned to camouflage her condition, like most women, and strove to respond to the demands of a society in which being different implies stigma and exclusion. As of 2012, she has dedicated most of his time to the defense of autistic people, first working with the Sinteno Association for autistic people's inclusion in cultural leisure, and since 2015, promoting the visibility and recognition of autistic girls and women with CEPAMA, as well as defending the rights of the entire autism community in general.
About the presentation: Aggressions against autistic people, varying in severity and frequency, are constantly reported by the media. In July 2021, a young autistic man was killed by a violent group after months of threats and persecutfeltion. We we couldn't wait any longer. From CEPAMA Committee of Autistic Women, we decided to reach out to request that violence against autistic people should become a focus of attention of social and political institutions. We initiated a campaign on the Change.org platform, obtaining more than 87 thousand signatures. We have reached the Ministry of Social Rights and Disability in our country. They have listened to us, and they have been surprised to hear message.
Leneh is currently undertaking a (funded) PhD looking at initiative deficits in autism. Her groundbreaking research on autistic inertia has recently been published in a peer-reviewed article. Being autistic herself has motivated a longstanding interest autism and human behaviour that has developed into a research career. She now finds herself juggling multiple roles as a research consultant. A co-founder of Autscape, Leneh has 15 years experience leading the organisation of an annual residential event for autistic people. alongside extensive experience of conference presentations, workshops, consultation and contribution to the autistic and research communities. Leneh is also a co-author of an important article on the implications of the neurodiversity movement for early intervention research in autism, as well as contributing a chapter about Autscape to Steven Kapp's recent book Autistic Community and the Neurodiversity Movement. In addition to her work for Autscape, Leneh currently serves on the board of the National Autistic Taskforce.
About the presentation: Three organisations, National Autistic Taskforce, Autism Rights Group Highland and Autistic Mutual Aid Society Edinburgh (all UK based), are currently undertaking a joint project on a professional consultancy basis for Scottish Autism (Large parent/professional-led charity and care provider) to support them in making their governance more inclusive. Leneh will discuss the process of tendering for this work and how the project is going so far.
After being diagnosed with ASD as an adult, Roberto began to learn more about the clinical and social issues related to autism and autistic people. Later, he became interested in the social science perspective, and decided to study the topics of Disability Studies and Critical Autism Studies. In 2019, he became a member of Neuropeculiar APS and subsequently joined the Board of Directors, with the goal of contributing to the development and dissemination of a new socio-cultural paradigm that normalizes the concept of neurodiversity and values the variety of human expression.
About the presentation: In Italy, all the events that talked about autism have previously been medical-scientific, and this always had a big influence on the prevailing narrative. In 2018, Roberto had the idea of importing experiences such as Autminds and Autscape to Italy, to create an event where autistic people would talk about autism. This is how AUTcamp was born, called Anthropologists on Mars in its first version. It saw its third live edition this year in Rome. From the beginning, AUTcamp set out to create a narrative about autism and neurodivergence that was self-determined by autistic people.
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.