The Use of diagnosis in Looked After Children

1. The Use of diagnosis in Looked After Children Dr Margaret DeJong Great Ormond St Hospital 10.6.2011 NHS Great Ormond Street Hospital for Children NHS Trust

2. Outline of talk • An introduction to psychiatric diagnosis • Diagnosis as applied to LAC children – particular difficulties • Case example • Attachment • Complex trauma • Quasi-autism • Diagnosis and service provision

3. What is diagnosis for? • Classification of diseases and disorders for statistical analysis and epidemiological study • Provides an agreed definition of conditions as a focus of study • An accurate description of a child’s difficulties to aid communication and a shared understanding • Provides a rationale for treatment

4. DiagnosticSystems • DSM-IV (American Psychiatric Association – APA). Used in America and world-wide for research • ICD-10 (World Health Organisation – WHO). Used in Britain • DSM-V and ICD-11 currently in preparation. Consultation, field trials and panels of experts

5. What are diagnostic criteria? • May specify conditions for the diagnosis to apply (e.g. Criterion A in PTSD) • Sets out groups of criteria, one or more of which is required from each category • Specifies impairment and duration • Specifies exclusion diagnoses

6. What are we measuring? Diagnoses are largely descriptions of phenomenology. Few diagnoses imply a specific aetiology. Exceptions are PTSD and Attachment Disorder

7. Diagnostic Dilemmas • How to deal with co-morbidity? (Note that ICD-10 and DSM-IV often do this differently). Classic example is hyperactivity and conduct disorder. ICD-10 – ‘Hyperkinetic Conduct Disorder’. • Diagnosis is a categorical description, whereas diagnostic traits (such as ASD) are dimensional – follow normal distribution. Where is the cut-off?

8. Diagnoses in LAC children • Most research based on traditional psychiatric questionnaires (e.g. CBCL) • Diagnosis poorly captures the complexity of presentations and the range of symptoms exhibited by this population. • Does not sit easily with developmental psychology and neurobiology research • Historically research in LAC children has been neglected

9. Children with at least 1 ICD-10diagnosis: Data source: Ford et al (2007) Psychiatric disorder among British children looked after by local authorities: comparison with children living in private households. Br J Psychiatry 2007;190;319-25

10. What sorts of disturbance? • LAC status associated with almost all types of psychiatric disorder, but most strongly associated with disorders where environment has a leading role – PTSD, conduct disorder. • Prevalence of disorder higher where many recent placement changes • Neurodevelopmental disorders higher in LAC

11. Pre-natal influences • Maternal stress during pregnancy appears to affect aspects of infant development • Effects of substance abuse • Research into cocaine – physiologic dysregulation at 13 months • Foetal alcohol syndrome

12. Sub-threshold presentations • Clinical presentations may be very impairing but not reach threshold for diagnosis • Follow-up over time shows that many do eventually reach threshold • Children that we see may be sub-threshold on a number of diagnoses such as ADHD, Conduct Disorder, PTSD. Impairment much greater than suggested by a lack of diagnosis.

13. Case Presentation 1 • 15 year old boy presenting with sexualised behaviour • Severe physical abuse in 1st year of life • Three placements before adoption at 2.5 years.

14. Early History • Crying, difficult to soothe, “depressed” • Breath holding attacks & temper tantrums • Distressing nightmares until age 7 • Mild initial language delay • Enuresis until late age

15. School history • Poor peer relationships in primary school • Class clown and scapegoat • Incidents of extreme aggression • Fighting, swearing, confrontational behaviour in secondary school • Increasingly detached and unresponsive to discipline • “pressed everyone’s buttons”

16. School outcome • Inability to tolerate mainstream state school led to other attempted educational placements, then small tuition centre. • Educational Statement not obtained until we identified poor executive function (despite average IQ) and complex needs

17. Diagnostic picture • ? ASD (lack of empathy, egocentricity, poor understanding of emotional issues, poor reading of social context BUT good reciprocal interaction. Sub-threshold on ADOS) • Mild attentional difficulties but not ADHD • Low self esteem, poor emotional regulation, impulsivity, mood mildly depressed • Met criteria for Conduct Disorder

18. Outcome • Poor outcome does not match diagnostic profile, which does not capture the extent or quality of this young man’s difficulties • Attachment difficulties interacted with family dynamics leading to rejection • Extent of cognitive difficulties and pervasive impact of early trauma

19. Atypical presentations • “nosological orphans” (Carlson 1998 re SMD) • Leibenluft – criteria for severe mood dysregulation (SMD): “developmentally inappropriate increased reactivity to negative emotional stimuli at least 3 times a week, as well as sadness or anger most days..” • SMD probably common in LAC but is not in DSM-IV

20. Quasi-autism • Investigated in relation to post-institutionalised children (Hoksbergen et al 2005, Rutter et al 1999) • Atypical autistic features which may diminish over time in adoptive placement. • Links to Reactive Attachment Disorder? • Is this same phenomenon seen in children with a background of maltreatment?

21. Symptoms that do not fit a diagnosis • Sexualised behaviour • Smearing faeces • Resistance to change Many symptoms require a contextual understanding, such as disturbed behaviour related to attachment needs. May not be seen at school.

22. Abnormal eating patterns Tarren-Sweeney (2006) in a review of 400 children in kinship or foster care found: • 25% ate excessively and 23% gorged on food while maintaining normal weight • Hiding or storing food (14%) • Stealing food (18%) • Pica – associated with LD

23. Unusual and complex aetiology • Trauma relating to primary care giving relationship, affecting attachment processes • Abuse/neglect often occurs at a formative time of development and has neurobiological consequences (McCrory et al 2010) • Exposure to known risk factors (MH problems, criminality substance abuse, DV) • Highly unusual social adversity – removal from family, disrupted placements.

24. Social deficits • Looked after children present a range of social deficits inadequately captured by diagnosis • Distorted social cognition (hostile attribution) • Lack of trust based on experience • Deep sense of shame • Low self-esteem • Poorly developed social skills

25. Attachment-related? • Disinhibited or controlling behaviour may be attachment-related • Other social deficits may reflect adverse social environment and distorted social development • Need a more fine-grained approach to assessment

26. Reactive Attachment Disorder • Has its origins in observations of institutionalised children • Implies lack of capacity to form a selective attachment • In clinical practice we see children who generally can attach but albeit in a distorted and problematic way

27. Unresolved issues re RAD • Relationship between inhibited and disinhibited form • Relationship with categories of attachment classification, e.g. disorganisation • Diagnostic boundaries of RAD are unclear, made more unclear by tendency to include co-morbid conditions • Difficult to apply in children over 5

28. Definition of complex trauma Involve traumatic stressors that are: • Repetitive and prolonged • Involve direct harm-neglect by caregivers • Occur at developmentally vulnerable stages of life (early childhood) • Have great potential to severely compromise a child’s development

29. History of concept • PTSD – DSM-III (1980) • Terr (1991) Type 1 and Type 2 trauma • Complex PTSD (J Herman 1992) • DESNOS – DSM-IV (1994) • Proposed diagnosis of Developmental Trauma Disorder (van der Kolk, 2005) • DSM-V - Unlikely proposal will be accepted

30. Developmental Trauma Disorder Criteria • Exposure • Multiple or chronic exposure to one or more forms of developmentally adverse interpersonal trauma (e.g. abandonment, betrayal, physical assaults, sexual assaults, threats to bodily integrity, coercive practices, emotional abuse, witnessing violence and death). • Subjective experience (e.g., rage, betrayal fear, resignation, defeat, shame).

31. Triggered pattern of repeated deregulation in response to trauma cures. • Dysregulation (high or low) in presence of cues. Changes persist and do not return to baseline; not reduced in intensity by conscious awareness. • Affective. • Somatic (e.g. physiological, motoric, medical). • Behavioural (e.g. re-enactment, cutting). • Cognitive (e.g. thinking that it is happening again, confusion, dissociation, depersonalization). • Relational (e.g. clinging, oppositional distrustful, compliant). • Self attribution (e.g. self-hate, blame).

32. C. Persistently Altered Attributions and Expectancies • Negative self-attribution • Distrust of protective caretaker • Loss of expectancy of protection by others. • Loss of trust in social agencies to protect. • Lack of recourse to social justice/retribution. • Inevitability of future victimisation.

33. Functional Impairment • Educational • Familial • Peer • Legal • Vocational

34. Critique of the concept • Widely used by clinicians because it provides a coherent conceptualisation of presenting symptoms in abuse/neglect • Emphasises pervasive impact on development • Provides rationale for treatment • Usefully includes dissociative symptoms within diagnostic criteria (unlike PTSD)

35. Critique (2) • A focus on traumatic aetiology may not encompass all maltreatment effects, such as those that occur in neglect • Some criteria reflect attachment more than trauma • Debate over the definition of ‘traumatic’ and the perceived dilution of Criterion A • Relative paucity of research data

36. Impact of diagnosis on service provision • CAMHS sometimes organised around diagnosis-led clinics (ADHD, ASD) • Fragmentation of service provision, failure to understand the whole child in the light of their experience • Caregivers experience too narrow a focus and poor understanding of child’s needs

37. Diagnosis as communication • Too often serves as a barrier to communication • Inadequate language to describe what we see may impair recognition of high level of mental health need in LAC population • Psychiatric diagnosis may be seen as obscure, specialist and remote. Alarmingly, it may be seen as irrelevant

38. The Way Forward • Good clinical description and formulation should underpin diagnosis • Emphasis on aetiology as well as phenomenology • Use of questionnaires developed specially for this population (ACC, Tarren Sweeney 2007)

39. References (1) Cook, A., Spinazzola, J., Ford, J., et al (2005) Complex Trauma in Children and Adolescents. Psychiatric Annals, 35, 390-398. Ford T, Vostanis P, Meltzer H & Goodman R (2007) Psychiatric disorder among British children looked after by local authorities: Comparison with children living in private households. Br Journal of Psychiatry, 190,319-325 Herman J. (1992) Complex PTSD: a syndrome in survivors of prolonged and repeated trauma. J Traumatic Stress, 5,377-391 McCrory e, De Brito SA, & Viding E. (2010) Research Review: the neurobiology and genetics of maltreatment and adversity. J of Child Psychology and Psychiatry, 51(10), 1079-1095 Van der Kolk BA, (2005). Developmental Trauma Disorder: A rationale for diagnosis in children with complex histories, Psychiatric Annals, 35, 401-408

40. Rutter M et al (1999). Quasi-attachment patterns following severe early global privation. J of Child Psychology and Psychiatry, 40, 537-549 Rutter M et al (2007). Early adolescent outcomes of institutionally deprived and non-deprived adoptees. III Quasi-autism. J of Child Psychology and Psychiatry, 48, 1200-1207 Tarren-Sweeney M (2006). Patterns of aberrant eating among pre-adolescent children in foster care. J of Abnormal Child Psychology, 34, 623-634. Tarren-Sweeeny M (2007). The Assessment Checklist for Children – ACC: A behavioural rating scale for children in foster, residential and kinship care. Children and youth Services Review, 30,1-25 Zilberstein K (2006). Clarifying core characteristics of attachment disorders: A review of current research and theory. American Journal of Orthopsychiatry, 76, 55-63