1. Understanding a person’s challenging behaviour A psychiatric perspective Tony Holland University of Cambridge

2. Overview The term challenging behaviour is a ‘descriptive’ term – it does not imply any understanding as to the causes of such behaviour; The term challenging behaviour is a ‘descriptive’ term – it does not imply any understanding as to the causes of such behaviour; A holistic approach is clearly required – that implies a bio-psycho- social model of understanding; A holistic approach is clearly required – that implies a bio-psycho- social model of understanding; Key to any successful intervention is the formulation Key to any successful intervention is the formulation Different theoretical perspectives Different theoretical perspectives Importance of matching observations and data collect to theory Importance of matching observations and data collect to theory Interventions based on established efficacy Interventions based on established efficacy Where medication is used it is on the basis of a clear hypothesis that the challenging behaviour may wholly or partly be related to the presence of a co-morbid disorder known to respond to such medication Where medication is used it is on the basis of a clear hypothesis that the challenging behaviour may wholly or partly be related to the presence of a co-morbid disorder known to respond to such medication Anticonvulsants (epilepsy) Anticonvulsants (epilepsy) Anti-depressants and mood stabilising medications (depression, bipolar disorder, anxiety) Anti-depressants and mood stabilising medications (depression, bipolar disorder, anxiety) Anti-psychotic medication (psychotic illness) Anti-psychotic medication (psychotic illness) Treatments for physical illness, pain etc Treatments for physical illness, pain etc

3. Complexity of developmental disabilities Aetiology and developmental trajectories: Aetiology and developmental trajectories: Nature and extent of impairment and associated disabilities; Nature and extent of impairment and associated disabilities; Associated ‘developmental’ impairments Associated ‘developmental’ impairments Personality Personality Autism spectrum conditions Autism spectrum conditions Neurodevelopmental syndromes Neurodevelopmental syndromes Associated co-morbidities Associated co-morbidities Sensory Sensory Physical health Physical health Mental health Mental health Past and present life circumstances Past and present life circumstances Individual differences and gene/environment interactions Individual differences and gene/environment interactions

4. Complexity of challenging behaviour and psychiatric disorder Terminology Terminology Descriptive Descriptive Aetiological Aetiological Conceptual models Conceptual models Applied behavioural analysis Applied behavioural analysis Acquired disorders (psychiatric; medical) Acquired disorders (psychiatric; medical) Developmental Developmental Systemic factors Systemic factors Family and carer responses Family and carer responses ‘Emotional’ environments ‘Emotional’ environments

5. Matrix Biological Biological Developmental Developmental Psychological Psychological Environmental Environmental Onset and continuation of ‘behaviour’ and/or abnormal mental state Predispose Predispose Precipitate Precipitate Maintain Maintain

6. Applied behavioural analysis Delayed or atypical development Co-morbidities Autism spectrum conditions Behavioural phenotypes Physical illness Psychiatric illness Sequelae of abuse Triggering events Setting events Wider physical and emotional environment

7. Identification of index problems DATA COLLECTION AND ORGANISATIONAL PHASE Data collection Initial formulation Investigations & observations Final formulation Intervention & evaluation INVESTIGATION & INTERVENTION PHASE For example: Onset of new problem behaviours Change in general well-being Loss of skills Deterioration in frequency/severity of long-standing behaviours History, mental state and physical examination from patient and informant Differential diagnosis Identification of possible factors that predispose, precipitate and/or maintain behaviours and/or abnormal mental state. e.g., ABC charts, psychometric assessments, monitoring of mental state, blood tests, scans Developmental psychopathology Co-morbid diagnoses (if present) Identified functions of behaviours aetiological and maintaining factors Specific interventions & treatments Monitoring outcomes ASSESSMENT PROCESS

8. Approaches to intervention Emerson, Hatton et al, 1998 Formulation of the problem should reflect contemporary scientific knowledge Empirical testing of hypotheses Review and revision of ‘model’ in the light of data collected Intervention based on a) understanding of individual; b) scientific evidence of effectiveness of proposed intervention Scientifically sound evaluation of outcomes

9. Behaviour in PWS Population-based study Prevalence (%) of specific behaviours (n=65) Definite sometime none Definite sometime none Excessive eating 78 21 1 Obsessional 70 23 7 Tempers 6727 6 Skin picking 59 22 19 Mood swings 3819 43

10. Mechanisms linking the genotype to the ‘PWS behavioural phenotype’ Propose that different mechanisms link genotype to phenotype in PWS: Eating disorder – direct effect of dysregulation of expression of paternally expressed maternally imprinted gene; Repetitive and ritualistic behaviours – arrested development – inability to switch tasks leads to temper outbursts; Mood disorder- shift in liability threshold in PWS Psychotic illness excess expression paternally imprinted maternally expressed gene

11. Graph to show the number of people with at least one psychotic symptom (all ages 18years+) Fishers Exact test; p<0.001

12. Management of CB affecting people with PWS Understand the ‘mechanisms’ that underpin the behaviour; Understand the ‘mechanisms’ that underpin the behaviour; Different for different behaviours or mental illnesses; Different for different behaviours or mental illnesses; Eating Eating Repetitive Repetitive Mood disorder Mood disorder Effective intervention requires combining knowledge about the individual and the syndrome Effective intervention requires combining knowledge about the individual and the syndrome

13. Examples Mr H with ASC – increasing aggressive behaviour over many years starting aged 13. Severe bipolar disorder and psychotic illness – CB resolved with treatment of his illness; Mr H with ASC – increasing aggressive behaviour over many years starting aged 13. Severe bipolar disorder and psychotic illness – CB resolved with treatment of his illness; Mr R with moderate LD - arrested by the police for indecent exposure – undressing part of a complex partial seizure; Mr R with moderate LD - arrested by the police for indecent exposure – undressing part of a complex partial seizure; Ms C with mild LD and ASC – periodic problematic behaviour mainly at times of unexpected change when associated with severe anxiety – various strategies including SSRI for anxiety. Ms C with mild LD and ASC – periodic problematic behaviour mainly at times of unexpected change when associated with severe anxiety – various strategies including SSRI for anxiety.