Pre congress workshops

Workshop 1: Autism: absolute thinking in a relative world. Context blindness 2.0

Abstract

Many ideas about the autistic brain are based on conceptions about the human brain that are outdated. The computer as a metaphor for the brain, with its input, processing and output, has been very useful in the past, but seems to be incorrect in the light of recent discoveries in brain science. The brain is not a computer: the brain is guessing more than it is computing. The reason? Our world does not do in absolutes. Nothing has a fixed meaning, hence for most daily situations applying universal and absolute rules and laws is less useful than setting probabilities. A Bayesian brain maintaining probabilistic models is what is needed to survive in a world that is VUCA  (volatile, uncertain, complex and ambiguous). In order to make ‘smart’ guesses, the brain has developed a unique characteristic: contextual sensitivity. The brain uses context to predict the world.

But what if your brain is not so talented in using context? What if your brain does do in absolutes? This is the case in autism. An autistic brain is context blind and tends to be absolute in making sense of the world. And therefore the world is for people with autism more confusing, more threatening and more difficult to predict.

This concept of context blindness 2.0 / absolute thinking unifies the existing cognitive models in autism (theory of mind/extreme male brain, executive functioning, and central coherence) and offers a unique and practical understanding of autism. Difficulty seeing and understanding context can explain why people with an autism have difficulties with communication, social interaction, sensory stimuli, and flexible thinking and behavior in daily living. But also why they often excel in tasks where contextual sensitivity is a disadvantage, such as logical reasoning, math, software testing and all other activities that require systemizing and intellect, rather than empathizing and intuition.

We will explain the concept of context blindness with a lot of practical examples.

We will also present the implications of context blindness 2.0 for education (and treatment). The predictive coding perspective offers some thought provoking new ideas, such as why traditional emotion recognition programs (using facial expressions of emotions) are making autistic children more autistic than they are and why putting on sun glasses and using ear defenders all the time is making the sensory hyperreactivity in autism worse rather than better…

Peter Vermeulen

Peter Vermeulen, PhD
Workshop 2: Mental health nursing for persons with intellectual disability. Behavioral equivalents, therapeutic communication and user participation

Abstract

Mental health nursing for individuals with intellectual disabilities and co-occurring mental health issues involves recognition of shifts and changes to symptom load and –expressions,  both between different phases of a disorder and throughout each individual day. Verbal language may be negatively impacted and consequently the patients’ possibilities of communicating with words may be blocked or severely impaired. Moreover, effective therapeutic communication in mental health nursing requires training in responding appropriately to the patient’s emotional state and behavioural changes. User participation in mental health nursing for people with intellectual disabilities is still in its infancy.

Mental illness may negatively impact verbal language and adaptive functioning, in particular when the individual has cognitive impairments such as intellectual disabilities or autism spectrum disorders. The use of behavioural equivalents may be helpful during assessment and treatment. In mental health nursing, understanding the person’s decline of language skills and adaptive functioning, along with interpretation of behaviour change in light of mental health problems, may aid in guiding communication and adapting support in daily activities specifically to the patient’s symptom load. Anxiety may for example be displayed as challenging behaviour or unusual flight responses, but the patient may also show conventional and observable signs of anxiety such as breathing difficulties, increased heart frequency, tension, and shivering.

One goal of effective therapeutic communication is providing symptom relief. Therapeutic communication for patients with moderate or severe intellectual disabilities and co-occurring psychosis is usually effective when nurses perform task sustenance, attain joint attention, and provide meaningful responses and emotional support when communicating with the patient. Strategies for validation of patients adjusted for their cognitive impairments, and aiding in the development of alternative coping skills for negative emotions, have been found to be effective.

There has been significant progress concerning user participation in this field during the last decade, and individuals with intellectual disabilities are more often involved in discussions of their mental health. Recent research also highlights how including patient perspectives in mental health services may improve the appropriateness and quality of these services. To continue this development a change in clinicians’ attitudes is likely needed, from “it is difficult to include people with ID when planning services” to “this will improve assessment and treatment for the patients, their families and us”.

The workshop will discuss how the use of behaviour equivalents, effective therapeutic communication, and including the patient in planning and evaluation of services may improve  mental health nursing for individuals with ID.

Trine Lise Bakken

Workshop 3: Primary prevention of child sexual abuse by juveniles and adults with sexual interest in pre- and/or early pubescent children

Abstract

Child sexual abuse and the consumption of child sexual abuse material constitute a serious international problem. Approximately 1 in 12 minors aged between 12 and 17 years was found to be sexually abused within one year. Individuals with intellectual disabilities are more likely in contact with judicial authorities due to sexual offending behavior compared with the general population. Especially sexual interest in pre- and/or early pubescent children and offense supportive cognitions are major risk factors for committing child sexual abuse. It therefore follows the necessity of clinical diagnostics and therapeutic treatment programs for individuals with sexual interest in pre- and/or early pubescent children and intellectual disabilities.

The workshop presents the “Prevention Project Dunkelfeld” (PPD) and the Prevention project "Just dreaming of them" (PPJ) in their work with individuals with intellectual disabilities. Additional to diagnostic procedure and therapeutic program, difficulties and challenges will be presented.

Miriam Schuler

Workshop 4: Emotional Development: from science to practice.

Abstract

With estimates ranging from 30 to 60%, the prevalence of mental disorders and/or challenging behaviors is high in individuals with intellectual disability (ID). In order to better understand and deal with challenging behavior, Anton Došen (1990) evolved a model based on normal development in infants and children according to which emotional competencies are acquired in a progressive sequence of qualitative changes incorporating emotional as well as social, sensorimotor and cognitive functions. This "developmental-dynamic approach" focuses on providing insight into the underlying basic emotional needs and motivations as a basis for better understanding and addressing the respective behavior. The level of development in cognition and emotion may differ in individuals with ID. These differences may result in severe challenging behaviors (Sappok et al., The missing link, 2014). Assessing the level of ED can help caregivers better understand clients' behavior by providing insight into their inner experience (Došen & De Groef, 2015). Meanwhile, different instruments exist to assess the level of ED, e. g. the The Scale of Emotional Development - Short (SED-S; Sappok et al. 2016) and the Schaal voor Emotionele Ontwikkeling van mensen met een verstandelijke beperking – Revised² (SED-R²; Morisse & Došen. 2016). Assessing the level of ED is crucial for a person-focused approach to understanding and dealing with challenging behavior. Adapting the environment and attuning sensitive caregivers to clients' basic emotional needs may reduce challenging behavior and support clinicians to discontinue psychotropic medication for certain symptoms with questionable and limited effects.

In this workshop, we will introduce the ED approach including basic needs and motivations. Next, the SED-S and the SED-R² will be presented as two complementary assessment instruments. Finally, we will bridge from assessment to support and line out the implications for treatment and support.

A case study will be prepared and presented. The participants are invited to practice by applying the SED-S in small groups followed by a discussion of the case in the whole group. In a final step, the small groups develop implications of the level of ED for the treatment and support of the client which will be presented and discussed in the whole group afterwards.

Filip Morisse, Leen De Neve and Brian Barrett

Workshop 5: Improvisational theater intervention in people with intellectual disabilities and mental health problems

Inhalt

Dramatherapy is an art-based therapy that offers the possibility to adress social-emotional aspects of behavior using methods that rely on nonverbal expression. In particular, the therapeutic use of improvisational theatre focuses on interpersonal relationships through exploring attentiveness to others, flexibility and responsiveness. Improvisational theatre is characterized by spontaneous acting, in which story and characters are unscripted. Some studies reported that improvisational theatre interventions increase self-esteem and trust in facing social contact in typically developed people.

However, there are no reports on improvisational theatre interventions in adults with intellectual disabilities (ID) and mental health problems. Since 2014, two improvisational theatre groups were implemented for adults with mild to moderate ID and mental disorders in the outpatient clinic of the Berlin Treatment Center for Mental Health in Developmental Disabilities. In total 24 patients, 12 women and 12 men, aged from 26 to 66 years participated in the program.

Improvisational theatre is characterized by supporting your partner, accepting your own ideas and the awareness in the here and now. Improvisational methods focus on taking turns to co-create stories. The intervention was applied in a structured way and focuses on fostering social competences.

In this workshop, we want you to give you practical insights into the applied methods. The exercises are offered in a non-judgmental atmosphere to explore the own playfulness. We will practice the basic principle of improvisational theatre “yes and…”, which means every idea, whether your own or your partner´s, will be accepted. The exercises will be practiced in groups, pairs, nonverbally and verbally, in your native language and in English.

In addition, we will present the two improvisational theatre groups, in which the intervention was implemented. We will discuss the conditions and the indications of the intervention, refer to some studies and show exemplary sequences. Apart from presenting and discussing the intervention from the standpoint of a dramatherapist, we will present the perspective of a psychology student who was accompanying the group for 1,5 years as an external observer. A participant with years of experience will be act as cotrainer and present her perspective. Furthermore , we will present data on the feasibility and appropriateness of the therapy programme.

Regina Fabian und Daria Tarasova

Workshop 6: Dialogue Oriented Deescalation. Identify and decisively use the elements of escalation

Inhalt

De-escalation begins with self-knowledge and self-control. The "ladder" of "escalation" consists of increasingly radical judgments, emotional exacerbations and faster physiological processes. Those who recognize these "interactions" and learn to control them, can become better, more effective in perceiving, interpreting and influencing other people. There is no method of de-escalation, that works per se. The success of de-escalation depends on several factors: how many people and in which way they contribute in the escalation; which influence options does the crisis  manager recognize and how does she/he use them; ... and the real reaction patterns, that are deeply rooted in the personality of the crisis manager.

Carlos Escalera and Paula Sanchez Calvo

Workshop 7: Dementia in Persons with Intellectual Disability

Inhalt

Demographic change poses new challenges for persons with intellectual disabilities (ID) and their carers. As people with ID are getting older, more are affected by dementia.

The prevalence of dementia in persons with ID is estimated to be equally high or higher than in persons without ID. Persons with trisomy 21 are far more likely to develop dementia and experience an earlier onset of symptoms than persons without ID or with other aetiology of ID (Kuske et al. 2017a; 2017b).

As symptoms of dementia are often hard to detect due to the pre-existing disability, diagnosis of dementia is difficult and time-consuming. There is professional consensus that dementia diagnosis in persons with ID should consist of a proxy inquiry and a neuropsychological test. It should be designed as a baseline and follow-up assessment. An overview of internationally available screening tools to aid dementia diagnosis is given (Zeilinger et al., 2013). Some of them, such as the NTG Early Detection Screen for Dementia (NTG-EDSD; NTG, 2013; Zeilinger et al., 2016) and the Dementia Test for Individuals with Intellectual Disabilities (Demenztest für Menschen mit Intelligenzminderung – DTIM, in press; Kuske et al. 2017a; 2017b), are introduced in detail.

Living facilities for persons with ID must adapt to changes in the daily routine of their elderly inhabitants. Some may have dementia and a growing need for rest, some retire from their work or have changed leisure needs. Living environment and day structure should be adapted to current needs to ensure a high quality of life and independence in old age for as long as possible.

Options for designing and changing living space by means of colour or light concepts as well as options for daily routine adaptations are presented. Necessary adjustments of day structure are explained (Watchman, Kerr & Wilkinson, 2010).

Dementia often leads to reduction of personal drive and social withdrawal. Therefore, persons with ID should be supported in maintaining their active participation in community life. One option for cultural participation is represented by our model project "Creative Storytelling". Another best-practice example is "wake-up words", which is about reciting poems (Müller & Focke, 2105). It was developed based on the time slips method by cultural anthropologist Anne Basting. "Creative Storytelling" has been designed for people with dementia without ID. The core element is that a group of persons looks at a picture and develops a story based on free associations. This should encourage the participants to communicate, to think up stories, and have a group experience. Using this method with a group of people with ID is reported as a best-practice example (Müller, Aust & Engelin, 2017).

References:

Kuske, B, Wolff, C, Gövert, U & Müller, SV (2017a). Early detection of dementia in people with an intellectual disability – A German pilot study. J Appl Res Intellect Disabil 30 (Suppl. 1) 49–57.
Kuske, B & Müller, SV (2017b). Demenz-Früherkennung bei Menschen mit Intelligenzminderung – Eine Pilotstudie zur Anwendbarkeit des Demenztests für Menschen mit Intelligenzminderung (DTIM), Zeitschrift für Neuropsychologie, 28, 219-229.

Müller, S.V., Aust, J. & Engelin, T. (2017). „Kreatives Geschichtenerfinden“ zur Steigerung der Lebensqualität von Menschen mit einer geistigen Behinderung und Demenz – Ein Erfahrungsbericht. Teilhabe, 56, 20-24.
Müller, S. & Focke, V. (2015). „Weckworte“- Alzpoetry zur Steigerung der Lebensqualität von älteren Menschen mit geistiger Behinderung und Demenz, Teilhabe, 54, 2, 68-71.
NTG (2013) National task group early detection screen for dementia (NTG-EDSD) manual. NADD Bulletin, 16(3), 47–54.
Watchman, Karen / Kerr, Diana / Wilkinson, Heather (2010): Supporting Derek. A practice developmental guide to support staff working with people who have learning difficulty and dementia. Brighton,
Zeilinger, E.L., Gärtner, C., Janicki, M.P., Esralew, L., & Weber, G. (2016). Practical applications of the NTG-EDSD for screening adults with intellectual disability for dementia: A German-language version feasibility study. Journal of Intellectual & Developmental Disability, 41, 42-49.
Zeilinger, E.L., Stiehl, K.A.M., & Weber, G. (2013). A systematic review on assessment instruments for dementia in persons with intellectual disabilities. Research in Developmental Disabilities, 34, 3962-3977.

Elisabeth Zeilinger and Sandra Verena Müller

Workshop 8: On mutual connections between trauma and brain in people with intellectual disabilities

Abstract

On trauma/post traumatic stress disorders and their impact on the brain, ground-breaking work has been done by authors as Dessel van der Kolk and Bruce Perry. Complex trauma greatly impacts the architecture and chemical processes of the brain and the connected stress system (Vliegen et al, 2017). It also impacts behaviour and affective experiences and influences the way affects are regulated and later (care) relationships are built (Perry & Szalavitz, 2006). Many clients develop a permanent hypersensitivity of the stress system and a sustained vulnerability in terms of cognitive, emotional and relational development.

Research and literature on trauma in people with intellectual disabilities remains rather scarce. However both theory as practice (cf. Farr, 2019) indicate that, due to different risk factors, (families of) people with intellectual disabilities have an increased risk suffering from trauma. Nevertheless the diversity of complaints linked to complex trauma leads to confusion in diagnostic imaging. As a consequence people with trauma are differently diagnosed by several diagnosticians. Specific behaviours are rarely interpreted as consequences and impact of a traumatic experience.

Also in the so-called ‘jammed situations’ for which Ampel is consulted, underlying traumas often play a strong role. Ampel (CGG Prisma) is a mobile and outpatient mental health care service for children, youngsters and adults with intellectual disabilities. Ampel offers both individual therapy to (young)adults as diagnostic imaging, advices and support for the natural and professional network members of children and adults. On a daily basis staff members of Ampel search for good practices and traumasensitive therapy and coaching.

In this precourse Ampel staff members introduce the concept of ‘complex trauma’ and its impact on the brains. Next ‘traumasensitive care’ is illustrated with concrete cases from both outpatient therapeutic support as from mobile team work. Furthermore the therapists of Ampel explain some practices and methods in trauma treatment that directly work on the brains (eg. EMDR and stabilization exercices). Finally participants practice in the installation of a safe place.

Lien Claes