Program

The well-being of people with autism and/or intellectual disabilities (ID) should be a primary focus, emphasizing not just their differences but their shared pursuit of happiness with all humans. Moving from "neurodiversity" to "neuroharmony" encourages a more inclusive, positive approach that connects people, rather than emphasizing their differences.

Historically, research has often focused on what makes people with autism/ID different, neglecting their shared basic needs, like happiness. While neurodiversity helps promote acceptance, it can overemphasize differences. We must shift toward understanding and supporting what connects us, especially in terms of well-being and quality of life.

In studies of autism and intellectual disabilities, well-being is rarely the main focus, often overshadowed by a negative or clinical approach. Typically, attention is given to the absence of distress, rather than on how to foster happiness or life satisfaction. This needs to change to a more positive, inclusive perspective.

In the presentation, we’ll explore practical strategies for enhancing well-being in people with autism/ID, discussing both emotional well-being and meaningful life satisfaction. The story of Thijs, a boy diagnosed in the 1980s and now a happy adult, will illustrate how we can create a world where people with and without disabilities live in harmony.

Dr. Peter Vermeulen holds a PhD in Psychology and Clinical Educational Sciences and has over 35 years of experience in the field of autism. He is a highly respected international lecturer and trainer. Peter has authored several books on autism, with some translated into more than 10 languages. In recognition of his contributions to the field, he received a Lifetime Achievement Award in 2019. Over the past three decades, Peter has been a speaker at every Autism Europe conference.

Dr. Noelle Blackman has worked extensively to support autistic individuals, people with intellectual disabilities, and their families who have experienced severe trauma. A key focus of her work has been understanding the barriers and enablers to supporting healthy grief in bereaved individuals with intellectual disabilities. Over time, she has observed that many organizations and their staff often defend themselves against emotional pain, which influences how they respond to vulnerable individuals. Ironically, the very systems and structures designed to provide care can sometimes exacerbate trauma, further harming those they aim to support.

Dr. Noelle Blackman is an expert in supporting people with intellectual disabilities through loss and trauma. She founded a bereavement service within the NHS and published Loss and Disability in 2003. As CEO of the UK charity Respond from 2012 to 2023, she provided psychotherapy and trauma-informed services to individuals with intellectual disabilities or autism and their families. Her current academic focus is understanding the impact of trauma on people with intellectual disabilities and autism.

The Good Lives Model (GLM) is grounded in the ethical concepts of human dignity and universal human rights and has a strong emphasis on human agency. That is, the Good Lives Model is concerned with enhancing individuals’ ability to formulate and select goals, to construct plans and to act freely in the implementation of these plans within the contexts in which they live. Although the central aim of the GLM is to build internal and external capacities (i.e., building strengths) it pays equal attention to risk variables. As such, the model advocates for a dual emphasis on risk management and goods promotion and its core values are reflected in two major normative principles based on these aims. These principles are: (1) to reduce and manage the risk posed by individuals who have committed crimes to the community (risk management) and (2) to enhance individuals’ well-being by increasing their strengths and capabilities so that they are better equipped to live a pro-social and personally meaningful life (goods promotion). In this keynote talk I discuss the application of the GLM to individuals with mental health and ID needs.

Tony Ward, DipClinPsyc, PhD, is a professor of clinical psychology in the school of psychology at Victoria University of Wellington, New Zealand. He has over 480 research publications and his current research focuses on the development of explanatory and practice models in psychopathology and forensic psychology. His recent publications include: “Practice Frameworks in Correctional Psychology: Translating Causal Theories and Normative Assumptions Into Practice,” in Aggression and Violent Behavior (2021) and “Targets of Explanation in Correctional and Forensic Psychology:A Black Box Model,” in Aggression and Violent Behavior (2022). He is a Fellow of the Royal Society of New Zealand.

Professor Christine Bigby is the Director of the Living with Disability Research Centre at La Trobe University in Australia. She has a long history of collaborating with disability support and advocacy organizations to investigate how effectively programs support the social inclusion of adults and older individuals with intellectual disabilities. Since 2015, she has led a team focused on supported decision-making, and she has conducted a longitudinal study on the quality of support in group homes since 2009. In addition to publishing 10 books, 52 book chapters, and 192 journal articles, she is the founding editor of the journal Research and Practice in Intellectual and Developmental Disabilities and has served as President of the Australasian Society of Intellectual Disability since 2022.

During this study visit, you will explore De Steiger, part of the renowned Zorggroep Guislain in Ghent. De Steiger offers practice-based mental health programs that focus on creating a healing environment for individuals with mental health challenges. The visit will delve into their therapeutic approaches, the philosophy surrounding restrictive measures, and the importance of patient participation in their own care journey. You’ll have the opportunity to see how these elements come together to foster recovery and well-being in a supportive environment.

Why you should attend this study visit:

1. Discover cutting-edge mental health practices that prioritize healing environments.
2. Learn about the ethical approaches to restrictive measures in psychiatric care.
3. Engage with experts on how participation is integrated into therapeutic programs.

This study visit to Konekt will showcase how this social-cultural organization in Flanders is revolutionizing inclusion for individuals with disabilities. Participants will be introduced to Konekt’s groundbreaking programs, including Brake-Out, which empowers young people with disabilities to develop their talents and leadership skills. You will also explore the Co-Supervisor in Preschool initiative, where young individuals are trained to take on meaningful roles in early childhood education. Additionally, the visit includes a dive into Platform-K, a professional dance company that brings together dancers with and without disabilities, fostering creativity and collaboration.

Why you should attend this study visit:

1. Discover how innovative programs break down barriers and empower individuals with disabilities.
2. Learn about fostering inclusivity through numerous initiatives for young individuals with disabilities.
3. Experience the creative impact of Platform-K, where dance becomes a tool for inclusion and artistic expression.

This study visit to Mozaïek offers a unique glimpse into how this organization provides comprehensive support for people with disabilities across all aspects of life. You will visit a specialized residence designed for individuals with a dual diagnosis, where intellectual disability meets psychological vulnerability. The home is thoughtfully constructed to balance personal space and safety, giving residents both independence and security. You’ll also have the opportunity to engage with the supervisors, gaining insights into their daily experiences and approaches to providing personalized care.

Why you should attend this study visit:

1. Experience a real-life model of personalized care for individuals with dual diagnoses.
2. Learn how safety and independence can be effectively balanced in supportive housing.
3. Gain valuable insights from supervisors working closely with residents.

This study visit offers a deep dive into "Our New Future," an innovative self-advocacy movement in Flanders, led entirely by individuals with intellectual disabilities. These inspiring self-advocates challenge societal norms and fight for equal rights, autonomy, and full participation in all aspects of life. You will learn how they support one another in making their own decisions, advocating for their needs, and taking control of their lives. By sharing their journeys and overcoming structural barriers, they empower others to realize their potential and transform their futures.

Why you should attend this study visit:

1. Witness firsthand how individuals with disabilities drive change and inspire action.
2. Learn effective strategies for supporting self-advocacy and autonomy.
3. Gain insights into creating inclusive environments where everyone’s voice is heard.

The prevalence rates of physical and mental disorders are higher in people with intellectual disabilities (ID) than in the general population. Among many mental disorders, ADHD is one of the conditions that has not received much attention in people with ID. This has led to lack of identification and treatment of ADHD among people with ID. Studies on ADHD in the general population have shown the benefits of the diagnosis and improvement in quality of life with necessary interventions and treatments. Therefore, it is important to recognise ADHD in people with ID. Diagnosing ADHD in people with ID can be challenging for many reasons such as other diagnoses overshadowing the core symptoms of ADHD. There are similar challenges with treating ADHD in people with ID given limited evidence base in this area. The aim of the workshop is to improve knowledge and skills in the assessment and treatment of ADHD that participants will apply in clinical practice. We aim to make the diagnosis and treatment process simpler to understand so that patients with ID will receive the same level of treatment that their counterparts without ID receive.

Dr. Bhathika Perera is an Associate Professor at University College London and an Honorary Consultant in Intellectual Disability Psychiatry in the North East London NHS Trust. Dr. Perera leads research in neurodevelopmental disorders, including Intellectual Disabilities, ADHD, and Autism. He led the Royal College of Psychiatrists College report on ADHD in people with ID (CR230). He chairs a national group on ADHD in ID in the UK. He has worked with ADHD foundation to modify DIVA-5 for people with ID (DIVA-5-ID).

The course will explore the latest evidence on the specific indications of both new and traditional treatments. Special attention will be given to the use of antipsychotics, antidepressants, and anti-anxiety medications for individuals with autism spectrum disorder (ASD). The course include the importance of specificity of treatment in relation to diagnosis and ensuring the involvement of individuals with intellectual disabilities (ID) and their family carers, alongside a multi-disciplinary team. Another key aspect will be the outcome measures.

Dr. Marco O. Bertelli is the scientific director of the Research and Clinical Centre (CREA) at Fondazione San Sebastiano in Florence, Italy. He serves as a consultant psychiatrist for various service providers focusing on neurodevelopmental disabilities and mental health issues. As adjunct professor at the University of Florence, he teaches both nationally and internationally. Currently, he is the president of the Italian Society for Neurodevelopmental Disorders (SIDiN) and has previously held leadership roles in several international organizations related to psychiatry and intellectual disabilities.

Dr. Bertelli chairs the Working Group on Autism Spectrum Disorder for the World Psychiatric Association and has contributed to the WHO’s ICD-11 revision and the development of the WHO Package of Interventions for Autism. He is also on the editorial boards of several scientific journals and has authored approximately 200 articles and book chapters. Since 2017, he has been part of the scientific committee of the Italian Observatory for Disabilities. His contributions have earned him significant accolades, including the Honorary Membership of the World Psychiatric Association in 2011 and the Leon Eisenberg Award from Harvard Medical School in 2021.

Research shows that approximately 40% of patients in specialist mental health care (S-GGZ) function at a level of intellectual disability (ZB) or mild intellectual disability (LVB). This percentage increases if LVB/ZB goes unrecognized, which can lead to intensive care, trauma, incidents of aggression, and involuntary admission. Mental health professionals often underestimate the number of patients with LVB/ZB in their caseloads, leading to difficulties in providing adequate support.

During this course, the process of diagnosing LVB/ZB according to the DSM-5 will be discussed, along with two tools for measuring adaptive functioning: the ADAPT and the SCAF. The SCIL screening instrument will also be introduced and practiced to facilitate early detection of LVB/ZB. Additionally, the impact of suspected LVB/ZB on further diagnostics and treatment will be addressed, with a focus on integrative diagnostics according to Anton Došen.

The discussion will also cover how treatments within FACT teams can be adjusted to provide tailored, recovery-oriented care. Resources such as the FACT scale for LVB/ZB and the new AKWA Care Standard for Low IQ will be explored. Finally, the initial results of the Breakthrough Project for LVB/ZB, which started in 2024 at six Dutch mental health institutions, will be presented. The aim is to make mental health care more inclusive for individuals with LVB/ZB and to develop implementation models for better collaboration between mental health services, disability care, and community social teams.

Warnsveld. Here, she mainly works with patients with severe long-term and complex psychiatry. The LVB target group was also the focus of her PhD research (completed in September 2022) on the prevalence and associations of LVB patients within the S-GGZ, such as aggression, compulsion, and trauma.

Dr. Meike Wehmeyer is a psychologist, systemic therapist, and speech therapist, working as a researcher at the University of Munich. Her research focuses on communication patterns in multi-carer systems, particularly in relation to challenging behavior in individuals with DID. She is also a lecturer in special needs education and supervises residential care providers for people with DID. Dr. Wehmeyer is Vice President of the German Association for Mental Health in DID and won the EAMHID dissertation award in 2021 for her work on systemic approaches in psychiatric treatment.

Lioba Grünfelder has a background in pedagogy, having studied at the universities of Berlin and Cologne. She works as a systemic consultant and serves as the head pedagogue at the University Clinic for Inclusive Medicine at Mara Hospital in Bethel.

Abstract

Many different professionals and care systems are usually involved in the support of individuals with a disorder of intellectual development (DID). Behaviour that challenges - a prominent issue in this context - is widely understood as the result of a mismatch between the needs and competencies of an individual with DID and their (social) environment. From a systemic perspective, mental disorders are likewise understood and treated on the basis of social interaction and communication patterns. Therefore, in addition to individual-centred concepts, approaches that focus on the interaction between the individual and their environment should also come to the fore.

Although multidisciplinary cooperation is considered a strength in psychiatric treatment, it is a major challenge to combine the diversity of expertise, expectations, behavioural patterns and goals within multi-carer-systems in a beneficial way. One of the pitfalls is to lose sight of the interests and needs of the person affected when those involved (whether private or paid) try to convince each other according to their own ideas and expertise. When analysing and dealing with challenging issues, stakeholders are all the more at risk of losing themselves in mutual accusations or disappointments, instead of using individual and collective resources to find sustainable solutions to problems and to find ways forward that are viable for everyone – including the person affected.

The course will begin with a brief introduction to systemic theory and practice. Based on two German research projects the workshop invites participants to familiarise themselves with systemic attitudes and techniques that have been scientifically investigated to improve the care, treatment and support of individuals with DID. Using case vignettes, resource- and solution-oriented methods as well as narrative techniques will be presented and discussed; systemic attitudes will be reflected upon. Particular attention will be paid to the organisation of inclusive, multidisciplinary case conferences.

The aim of the course is to improve systemic knowledge and skills in order to create supportive and synergetic networks in which all caregivers as well as the service user are equally involved in the treatment process. We would like to invite participants to engage in a creative, participatory learning process, in the spirit of Steve de Shazer's famous quote: “Problem talk creates problems, solution talk creates solutions.”

Developing secure attachment relationships with primary caregivers is crucial for fostering a person’s social-emotional development. This is particularly important for individuals with severe to profound intellectual disabilities, who face a higher risk of mental health challenges compared to the general population. The role of attachment figures is especially significant for this group, yet establishing such relationships can be difficult for caregivers. Factors on both sides contribute to these challenges—on the part of individuals with severe to profound intellectual disabilities, for instance, limited expressive communication can hinder the development of secure attachment, while caregivers may struggle with processing the diagnosis and interpreting the unique, idiosyncratic signals of the person with severe disabilities.

Although research on attachment in individuals with severe to profound intellectual disabilities has historically lagged behind, it is now gaining increased attention. Similarly, in clinical practice, the attachment framework is becoming more prominent, especially in addressing behavioral issues within this population.

In this pre-conference session, Dr. Sien Vandesande (KU Leuven, Belgium) will provide a brief theoretical introduction to attachment theory, followed by an overview of the existing research on attachment in individuals with severe disabilities, with a particular focus on parent-child attachment in families with children with severe to profound intellectual (and multiple) disabilities. She will draw from her own PhD research, sharing insights from various methodologies including observation, physiological measures, and interviews, as well as her postdoctoral work on shared caregiving from an attachment perspective.

Participants will engage in a discussion on how these research findings can be translated into practical support for parents and how they might inform our own attachment relationships with clients as professional caregivers. We will explore approaches to assessing attachment behaviors and quality in individuals with severe to profound intellectual disabilities and discuss intervention strategies. Together, we will critically evaluate how attachment-based diagnostic and intervention methods can be adapted to meet the unique needs of this group.

Sien Vandesande is a postdoctoral researcher at KU Leuven's Parenting and Special Education research unit. Her primary research interest lies in individuals with severe to profound intellectual and multiple disabilities and their surrounding context. She completed her doctoral research in 2021, which focused on parent-child attachment in children with severe to profound intellectual disabilities.

Sien’s postdoctoral research explores shared caregiving for children with severe disabilities from an attachment perspective, with a particular focus on co-regulation during stress in caregiving contexts. As a visiting research fellow at VU Amsterdam, she also contributes to projects within the Clinical Child and Family Studies Research Group and the associated academic workplace, Viveon.

This workshop offers a critical exploration of the ethical dimensions of inclusive research, focusing on co-creation methodologies with individuals who possess lived experience. Two seasoned researchers, drawing on their extensive years of practice, will reflect on the opportunities and challenges that arise when working in close collaboration with colleagues who contribute experiential knowledge to the research process.

Through engaging discussions and interactive elements, the workshop will examine how inclusive research can empower, while also addressing the ethical complexities and potential risks involved. Participants will be invited to consider the delicate balance between inclusivity, representation, and ethical responsibility. This reflective space aims to foster a deeper understanding of the intricacies involved in co-creative research and to highlight the importance of ongoing ethical considerations when engaging with diverse publics in academic inquiry.

This workshop is particularly suited to researchers, practitioners, experts by experience, and students interested in ethical research practices, participatory methods, and the integration of experiential expertise in scholarly work.

We aim to organise this workshop in a bilingual format, ensuring accessibility for both English and Dutch-speaking participants. Additionally, we are committed to using clear and straightforward language throughout the session, ensuring that all attendees, regardless of their linguistic background or familiarity with academic discourse, can fully engage with the content. This approach reflects our dedication to inclusivity, not only in research practice but also in the way we communicate and share knowledge.

Sofie Sergeant is senior lecturer and researcher in Citizenship & Inclusion at HU University of Applied Sciences Utrecht, associated with the Research Group ‘Youth’ and the Institute of Education and Orthopedagogy.

Henriette Sandvoort works at HU University of Applied Sciences as a researcher with lived experience, staff member, and advisor.