EUCAP webinar
19th November
12-17:30 CET
On Zoom
The theme
In this webinar, we address approaches to autism that many autistic people and allies consider harmful, with emphasis on ABA, but also tackling MMS, institutionalization and oppressive aspects of support services. The speakers will suggest alternatives or solutions to the problems they present.
This time, our European speakers are joined by visiting presenters from Australia and the US.
Who is it for?
For autistic people, for autism professionals, researchers, students, family members and allies of autistic people.
Participants from any part of the world are welcome.
Programme
Time
Speakers
Topics
11:45-12:00
Zoom session open, information about programme and technical support available
12:00-12:05
Heta Pukki, President of EUCAP
Opening words
12:05-12:35
Dr Sarah Bernard
Busting the myths of ABA – Why neurodiversity affirming therapy is best
12:35-13:05
Owen McGill, MSc and Anna Robinson, PhD
“Recalling hidden harms”: autistic experiences of childhood applied behavioural analysis (ABA)
13:05-13:30
Fiona Clarke, EUCAP Board member
EUCAP survey on ABA
13:30-13:45
Q&A
13:45-14:00
Break
14:00-14:15
Maja Bonačić, psychologist
Behavior vs. emotions – setting the right goals
14:15-14:45
Mia Kevo and Monika Stipanov
The story of CD protocol narrative in Croatia
14:45-15.15
Kim Talman, Vice Chair of Organiserade Aspergare
Support as oppression – why the Swedish radical neurodiversity movement advocates total independence
15.15-15.30
Viera Hincová, psychologist
The trap of normativity: What culture ABA represents and why it fails
15:30-15:45
Q&A
15:45-16:00
Break
16:00-16:15
Šárka Dušková, Legal Manager of Validity Foundation
Group homes – adversaries of deinstitutionalisation
16:15-16:45
Sara Rocha, President of Associacao Portuguesa Voz do Autista
Autism is not an epidemic, misinformation is
16:45-17:15
AJ Link, Policy Analyst at ASAN
#StopTheShock campaign – an ABA intervention (USA)
17:15-17:30
Q&A
Speakers and presentations
Sarah Bernard
Dr Sarah Bernard (she/her) is a proudly disabled, autistic, ADHDer doctor working as a Specialist Geriatrician in Australia. She is a member of Autistic Doctors International and her advocacy work focuses on the social model of disability and the neurodiversity movement. Dr Bernard is passionate about raising the profile of disabled healthcare workers. Her goal is to make healthcare and education systems more inclusive for neurodivergent, disabled people.
About the presentation
ABA is a common therapy for autistic children and adults. However, the autistic community has been speaking out about harmful practices in ABA for years. Autistic doctors and researchers are shining new light on the problems of ABA and behaviourism. This presentation reviews the latest evidence to bust the myths of ABA. Dr Bernard will explain what neurodiversity affirming therapy means, and what it looks like. After this presentation autistic people should feel confident to expect safety, choice, opportunity and autonomy in their therapy goals. Teachers and therapy providers will see that when it comes to supporting autistic people, the best practices are neurodiversity affirmative.
Owen McGill
Owen McGill is a late recognised autistic PhD Researcher at the University of Strathclyde in Glasgow, Scotland. Owen’s research has focussed on bringing autistic voices and experiences to the forefront of knowledge. His Master's research, under supervision of Dr Anna Robinson, sought to bring autistic experiences of Applied Behavioural Analysis into an empirical knowledge-base. His current research explores the school experiences of autistic young women and girls In Scotland, working with participants to co-produce knowledge which will aid in further developing teachers' knowledge, understanding and support of autistic girls in schools.
Anna Robinson
Anna Robinson is a Senior Lecturer in the School of Education at the University of Strathclyde. Her research, teaching and knowledge exchange is in the field of education and psychology. She is a chartered psychologist specialising in psychotherapy. Her research interests primarily relate to three areas: emotional psychology, an emotion-focused-experiential approach to psychotherapy, counselling and coaching, and trauma and post-traumatic growth.
About the presentation
Applied Behaviour Analysis (ABA) has long been held as the ‘gold standard’ as an intervention for autistic children. Following diagnosis, parents are offered ABA as the preferred Early Behavioural Intervention for their autistic child and offered discrete trial training so they can target skill acquisition through repetitive methods. Autistic people’s experiences of ABA are rarely found within research involving early or behavioural interventions. In this presentation, we report findings from 10 autistic adult reflections of their experiences of early childhood ABA. A Thematic Analysis was carried out on survey responses and semi-structured interviews. A core theme emerged: ‘‘recalling hidden harms of childhood experiences of ABA.’’ Five main themes comprising 15 subthemes, were identified. The five main themes: behaviourist methods create painful experiences; erosion of true actualizing self; lack of self-agency within interpersonal exchanges; self-healing and compassion and hear my angry voice. We give voice to these experiences with participant illustrations. The small number of participants in the study mean that the findings have limited generalizability. We explore how our findings of autistic adult experiences of childhood ABA treatment are contributing to the emerging influence wider autistic voices are having on ABA as a practice and intervention.
Fiona Clarke
Fiona received her autism diagnosis 14 years ago a year after her daughter at 3 years old. She is active in the wider autism communities, including working with networks of advocates to provide education and support and campaigning for ethical interventions and supports. As well as being an Executive Director of EUCAP, Fiona is a Committee member of the Autistic Mutual Aid Society Edinburgh, a Trustee of Scottish Autism and member of Inclusion Scotland's People Led Policy Panel (a pan disability Disabled People's Organisation). She is also on the Scottish Parliament Autism Cross Party Group and was the parent representative on the Scottish Government Autism Strategy Review Group (2018-2021).
About the presentation
EUCAP is seeking information from its member organisations, as well as from autistic people in general, about their knowledge and perceptions regarding ABA. A multi-language survey designed and coordinated by Fiona will be introduced, with preliminary results if these are available at the time of the webinar.
Maja Bonačić
Maja is a psychologist from Croatia and autistic advocate. She was diagnosed as dual divergent (autism and ADHD) last year. She has finished four years of training in transactional analysis (TA) psychotherapy, and is now preparing for her certification in TA. She has also been trained in several types of play therapy. Maja has her own private practice and she volunteers in ASK, the Croatian NGO of adult autistic self-advocates. Maja's main job is diagnosing autism in all age categories, but also does child and adult psychotherapy, mainly with neurodivergent clients.
About the presentation
In Croatia, behaviorism prominent in therapy - cognitive behavioral therapy (CBT) is very strong here, especially in working with autistic clients. In early childhood, it almost always includes ABA, and in adult age, medications and CBT.
In her short presentation, Maja will address the importance and benefits of concentrating on emotional development in autistic children instead of behavior, especially through play and art therapy.
Mia Kevo
Monika Stipanov
Mia Kevo and Monika Stepanov represent a group of students from the Faculty of Education and Rehabilitation in Zagreb. They are currently getting their Master's degree in education and rehabilitation science which will enable them to work with, provide and give support to children and people with disabilities, their families and the rest of the community in order to establish inclusion. The students' story with the CD protocol began six months ago when one of them came across a Facebook group where the protocol is promoted daily as a cure for autism.
About the presentation
The promotive narrative in the online groups encountered by this group is that autism is a disease and therefore treatable. Such narrative present an immense danger for autistic people, so the group decided to act. They have asked for and gained the support of their Faculty, different autistic associations and initiatives, as well as some medical experts and parents of autistic children.
The CD protocol involves the use of a solution of sodium chlorite (NaClO2) which, with the addition of citric acid, turns into chlorine dioxide (ClO2). The obtained chlorine dioxide is mixed with water in certain proportions and applied several times a day, usually orally or by enema.
The promotion and wide use of CD protocol in Croatia had started more than ten years ago. Until now, there were no legal repercussions for major distributers and promotors, who are presenting themselves as doctors of natural medicine (without any formal medical education). Their practice is centralized in Croatia, but it has also spread to some other Balkan countires, such as North Macedonia, Serbia, Bosnia and Herzegovina, Montenegro and Slovenia.
The proponents of the CD protocol are defining autism as a consequence of parasites and/or heavy metals in children's bodies, and are offering their protocol as a cure. Such practice takes advantage of the vulnerable state of parents, who are often left alone beacause of insufficient and/or inadequate support from the system and institutions, which can lead them to resort to scientifically unfounded and potentially harmful methods.
Kim Talman
Kim Talman was born legally blind and got diagnosed with autism as a pre-school kid. Despite social challenges he succeeded with his education and got a masters degree in political science. Today he work at the Swedish Unemployment Agency with backoffice duties and is also the second chairman of Organiserade Aspergare, an association for autistic people only.
About the presentation
For many autists, especially those who get an early diagnosis, support from habilitation and education institutions turns to oppression instead of being the help to self-help and overcoming of challenges. In this talk we get an alternative viewpoint from the neurodiversity perspective on why autists should support each others and strive towards total independency instead of relying on support and habilitation.
Viera Hincová
Viera has been working in advocacy and human rights of people with disabilities since 1998. As psychologist, she used Process Oriented Psychology to understand communication signals and respect the unique experience of each person, even those labeled as severy disabled. She worked as trainer for long-term institutions for more than 12 years, and co-founded the Slovakian NGO A Center. After her child received an autism spectrum diagnosis, since 2015, she focused on the situation of autistic individuals and families in Slovakia. She prepared several surveys and organised conferences to understand the discrimination, exclusion and lack of proper therapies and approaches to people on the spectrum. With other parents, some of them neurodivergent, she co- foundeded the nation-wide NGO HANS. She now runs seminars and workshops to help professionals and parents to understand the acommodations necessary to avoid harm and trauma for neurodiverse people. In last two years, Viera has run the podcast series "No Manual Children" and the online magazine #beznávodu, dedicated to advocacy and destigmatisation of autistic lifestyle and culture. At first, she just considered her daughter to be on the spectrum, but few months ago on she underwent the diagnostic process herself to confirm her self-diagnosis and self-understanding of her identity, as well
About the presentation
The recent review (2020) of ABA in comparison to other evidence based neurodevelopmental therapies shows the lack of impact in all areas followed in the field of early intervention. The history of ABA will be presented in context of development of psychological theories and methods and will be discussed as cultural representation of normativity versus diversity approaches. The current situation in Slovakia will be covered briefly.
Šárka Dušková
Šárka Dušková is the Legal Manager of Validity Foundation. Validity is a network of practitioners, volunteers and partner organisations providing specialist legal support to the disability rights movements in Europe and Africa. Šárka makes sure that Validity's legal strategies advance the protection of rights of people with intellectual and psychosocial disabilities in Europe. Before Validity, she worked in the non-governmental sector in Czechia and Slovakia. She also worked as a case-processing lawyer at the European Court of Human Rights and published several books and articles on different human rights issues.
About the presentation
Group homes across Europe have been used as excuses for deinstitutionalisation. The presentation explains why building group homes is a wrong policy. It sheds light on some of the very real human rights violations they allow, and discusses what else should be done to develop real supports in the community.
Sara Rocha
Sara holds a Bachelor's degree in Biomedical Laboratory Sciences and Master's degree in Healthcare Services Management and Economics. She works as data Manager at the Department of Public Health and Primary Care in the School of Clinical Medicine of the University of Cambridge, and as an Infodemics Manager for World Health Organization. She is co-founder and President of the Portuguese autistic-led association Associacao Portuguesa Voz do Autista.
About the presentation
The incessant look for a cure to Autism has paved the way to a history of innumerable treatments and causes of autism and the abuse of vulnerable people, especially children. From diets, to bleach, chelation and miracle cures, this webinar will present a history of the unproven treatments that were or still are being used on disabled people, and makes the case for the need of regulatory policies against the use of experimental treatments and stricter laws for medical fraud, as well as a global task force for the development of intervention/therapy guidelines on Autism.
AJ Link
AJ Link (he/him) is openly autistic. He received his JD from The George Washington University Law School and his LL.M in Space Law at the University of Mississippi School of Law. He is the inaugural director of The Center for Air and Space Law Task Force on Inclusion, Diversity, and Equity in Aerospace and an adjunct professor of space law at Howard University School of Law. AJ is the Communications Director for Mission: AstroAccess and works as a research director for the Jus Ad Astra project. He serves as the Space Law and Policy Chair for Black in Astro and was the founding president of the National Disabled Law Students Association. AJ is a policy analyst for the Autistic Self Advocacy Network. He has been actively involved with disability advocacy in the Washington, DC area and nationally within the United States. He serves on several advisory boards and steering committees that focus on disability advocacy and broader social justice movements.
About the presentation
There is a long history of people trying to “treat” or “cure” Autism. There have been several different interventions that developed over the last half century. An umbrella term for a lot of the intervention practices is Applied Behavioral Analysis, or ABA. There is disagreement between parents, professionals, and the autistic community about the effectiveness of ABA interventions and the value of its goals. Most autistic self-advocates believe that ABA interventions are abusive and harmful to autistic people. One example of an abusive intervention is the use of electric shock devices on autistic people at the Judge Rotenberg Center. Electric shock is a form of torture, but it is still endorsed by the Association for Behavioral Analysis International. We cannot allow this torture to continue, we must #StopTheShock.ce movements.
Registration
Registration is now open. Click the link below to proceed.
Tickets are available from 5th November to 26th November, 11:45 pm CET, or until the event is full.
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.
