International Conference 'Autism by autistic voices'

The Associação Portuguesa Voz do Autista is organising with MEP José Gusmão the international conference “Autism by autistic voices”, which will take place on 25 February in Lisbon.

Autistic people are not always included in the development of social and equality policies at European level. “Autism by autistic voices” is an international conference that shows how this can be done, by giving space to autistic people who are currently doing it at European and international level. Free entry upon compulsory registration.

You can watch online via MEP José Gusmão Facebook or APVA’s Facebook.

1st panel Speakers - 11-13h Lisbon time
Independent Living, personal assistance, and deinstitutionalisation

Mayne Benedetto

“Unapolegetically autistic: disability, political action and neurominorities”

Mayne Benedetto is a PhD candidate in Health Anthropology at the Institute of Social Sciences (ICS) at the University of Lisbon (ULisboa), her research is funded by the Foundation for Science and Technology (FCT), and the President of the Consulting Board of Associação Portuguesa Voz do Autista (APVA). Her doctoral thesis, a collaborative autoethnography, investigates the implications and limitations of gender designations taking into consideration the bodily experiences of autistic people, considering the relationship between social locus, emotion, experience, and performativity, due to the bias in the diagnostic criteria, and the political and social constructions around normality. Her work aims to contribute to a more substantial and realistic perspective of autism to provide better support and accommodations in health services for divergent individuals.

Florian Sanden

“Independent Living, personal assistance, and deinstitutionalisation”

After graduating with a Master of Science degree in European Studies from Maastricht University (NL), Florian Sanden started working for EU-level NGOs in 2016. By doing advocacy work in the field of social policy for BAGFW e.V., a German association of social service providers and youth and education policy for AKSB e.V., an association of providers of non-formal youth and adult education, Florian developed a passion for disability rights. After discovering he is on the autistic spectrum and also bipolar he started working as policy coordinator at the European Network on Independent Living (ENIL) in April 2022 which he also entered as individual member. Alongside his work Florian Sanden contributes to the activities of ADHD, ASC & LD Belgium, a small entirely volunteer based organisation focused on self-help and peer support of neurodivergent people.

Imke Heuer

“Employment: the need for a shift from “programmes” to careers for autistic people”

Imke Heuer studied English, Cultural Studies and History, and holds an MA and PhD from the University of York/ United Kingdom. Diagnosed as autistic as an adult, she is now active in autistic self-advocacy in Germany, mainly with autSocial e. V. (Hamburg) and Aspies e. V. (Berlin). She is also a member of the AFK (Autismus Forschungs-Kooperation), Berlin, a forum in which autistic individuals and academics in the field of autism collaborate on participatory research projects. Additionally, she is a research associate in the field of mental health/ social psychology and participatory research at the University hospital Hamburg/ University of Hamburg, and works on peer support, and on the complex dynamics between diagnosis and identity.

Joan McDonald

“Autistic ways of learning and support in education”

Joan McDonald is an autistic teacher who provides support and training to autistic people and their families, schools, employers and public services. She has worked as a second level teacher both in mainstream and autism classes, as a home tutor, trainer/manager in adult day services and as a Special Educational Needs Organiser. Joan currently works as Posautive, and has created the popular Posauteen and Posaudult programs to help people understand their autism and the importance of autistic community. Joan has worked on autism-related work with Irish universities , Cambridge University and on the LEANS Curriculum from the University of Edinburgh. She is contracted to work with Middletown Centre for Autism in their Research and Training Department which trains teachers in Northern and Republic of Ireland.

Following her own autism assessment in 2014, Joan set up the Autistic Paddies, or AutPad, a meetup group for autistic adults in Ireland which grew to over 600 members before closing in July 2022. It has evolved into numerous other groups linking autistic and other neurodivergent adults. She has a chapter in the book “Learning from Autistic Teachers” published in 2022.

Kosjenka Petek

“Reasonable accommodations and adapting environments in education”

Kosjenka Petek is an autistic teacher. She has worked as a primary school teacher and an English teacher in both state and private language schools.
While studying at Teacher’s Training College, she developed intense interest in education, education policies, alternative education and pluralism in education. It has been her passionate interest ever since. Kosjenka co-founded the Croatian Free School Initiative in 2008, and Croatian Education Otherwise Initiative in 2009. The latter tried to legalize home education in Croatia to offer different schooling opportunities to those square pegs being pushed into round holes. In 2018 she founded ASK, the first autistic self-advocacy network in the Balkans. She has been volunteering in ASK ever since, working mainly in the fields pertaining to education, participative research, organizing ASK’s educational webinars, hands on workshops on autism, teaching and assessment for teachers in state schools. At present she co-owns and runs a small inclusive language school in Zagreb creating engaging learning opportunities based on democratic education, having immense fun with her beloved students of all ages.

2nd panel Speakers - 15-17h Lisbon time
Self-advocacy in Europe – priorities of autistic people

Heta Pukki

“Autistic priorities regarding research, views on various types of support and representation”

Heta Pukki is an autistic woman diagnosed in adulthood, and the mother of two neurodivergent daughters. She is currently the President of the umbrella organisation European Council of Autistic People (EUCAP). She has been involved in autistic advocacy and peer support in many different roles, both volunteer and professional, in Finland and internationally, for over 25 years. She has studied biology at the University of Helsinki and special education for autistic adults at the University of Birmingham. Internationally, her main focus in the past few years has been on promoting connections and cooperation between autistic people’s organisations. In Finland, Heta is a representative of the national Disability Forum on the committee that coordinates the implementation of the UN CRPD national level.

Sara Rocha

“Need for systematic collection of information and data on autistic people’ s situations, rights, and access to services”

Sara Rocha is a representative of the European Council of Autistic People (EUCAP) in the Women’s Committee of the European Disability Forum (EDF). She is the co-founder and President of Associação Portuguesa Voz do Autista, the first self-advocacy non-profit in Portugal. She is an expert in healthcare data and public health information and works as a Data Manager for the Public Health and Primary Care department of the School of Clinical Medicine, University of Cambridge, and is trained as an Infodemics Management by the World Health Organization. Sara has been involved with several European and international campaigns, trainings and projects in Autism and Disability, such as the development of training for medical services to support autistic people in emergency situations, support programmes for disabled women and girls’ victims of violence, mental health support projects, and others.

Alistair De Gaetano

“Inclusion of the autistic experience in developing and implementing social and equality policies”

Alistair de Gaetano is Administrator of the Maltese Government’s Directorate for Disability Issues (DDI), and Chairperson of the Autism Advisory Council. He worked on setting up both the Directorate and the Council, and eventually on developing key legislation, strategies, policy and actions to reform and strengthen the Maltese disability sector. Alistair has represented Malta at a number of high-level meetings, and was Vice-Chair of the Social Questions Working Party on the European Accessibility Act, during the country’s 2017 EU Presidency. He is a warranted lawyer, having studied in Malta, Maastricht and Dublin, where he was awarded a PhD by Trinity College, after defending a dissertation on denial of rights to autistic persons. Alistair was previously involved in disability-related activism and outreach, including as a co-founder of EUCAP, the European Council of Autistic People, and co-chair with IDA (International Disability Alliance) of the working group that delivered the first-ever written submissions on behalf of disabled people to the UN’s High-Level Political Forum (HLPF) on Sustainable Development.

Yo Dunn

“Access to quality support and care: the need for autistic friendly support”

Yo Dunn is strategic lead of the National Autistic Taskforce and led the development of the NAT Independent Guide to Quality Care for Autistic People. She is autistic, a parent of autistic children and was formerly company secretary of Autscape. Yo is a trainer and consultant who works across the public sector (primarily in adult social care) with specialisms in autism and law. She is experienced in working closely with professionals in local authorities, care providers and in schools. She creates and delivers high level training on the legal framework of adult social care, safeguarding and autism for many English local authorities and NHS trusts. Yo provides training on all aspects of the Care Act; Adult Safeguarding law and practice; Mental Capacity law; DOLS and LPS; and SEND law; as well as specialist autism courses for social care and education professionals. She has a thorough and up to date working knowledge of public law and professional practice issues in both adult and children’s services and a multi-faceted perspective on a range of issues affecting autistics both with and without intellectual disabilities.

Yo’s book, Social Work with Autistic People, is the leading text in the field. She was legal and policy consultant to the National Autism Project and served on the Steering Group for the Department of Health and Social Care’s Core Capabilities Framework for Supporting Autistic People, which sets out the key capabilities for staff working with autistic people in all roles across the public sector.

Valeriia Shapovalova

“Situations of autistic ukrainian adults in ukraine and as refugees”

Valeriia Shapovalova is autistic and ADHDer. Founder of the first support group for autistic adults in Ukraine. Autism awareness activist, works with autistic children as a volunteer. Studies autism and brain structure.

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