A follow up study of emotional and behavioural problems in young people with intellectual disability*

1. A follow up study of emotional and behavioural problems in young people with intellectual disability* • Bruce Tonge, Stewart Einfeld, Trevor Parmenter, • Kylie Gray, & Elizabeth Evans • Monash University, Centre for Developmental Psychiatry & Psychology • University of New South Wales, School of Psychiatry • University of Sydney, Centre for Developmental Disability Studies • National Health & Medical Research Council of Australia • *Tonge, B.T. & Einfeld, S.L. (in press). Psychopathology and intellectual disability: The Australian Child to Adult longitudinal study. In L.Masters Glidden (ed.) International Review of Research in Mental Retardation, Vol. 27.

2. Time 21995-6 Time 31999-2000 Time 42001-2002 Longitudinal study Time 11991-2 Epidemiological sample (592) Down (74) Prader-Willi(61) Williams(67) Fragile X(64) Autism (124)

3. Epidemiological Sample Ryde (44) Grafton (31) Sutherland (141) SYDNEY Murray Murrumbidgee (189) Wollongong (123) Representative sample of young people (4-18 years) with intellectual disability Dandenong-Westernport (64) MELBOURNE

4. Age (years)

5. Data collection • Postal questionnaire • Psychiatric interview of selected sample • Medical and genetic history, investigation & examination • Cognitive assessment

6. Outcome variable: Psychopathology Developmental Behaviour Checklist • 96 item carer completed questionnaire (DBC-P) or teacher (DBC-T) • assesses behavioural & emotional disturbance in children, adolescents & young people with intellectual disability • Total Behaviour Problem Score (TBPS) & five subscale scores • scores >46 indicate a clinically significant level of disturbance (psychiatric ‘caseness’)

7. Outcome variable: Psychopathology Developmental Behaviour Checklist • Disruptive / Antisocial: manipulates, abusive, tantrums, irritable, kicks, hits, noisy, lies, steals, hides • Self-Absorbed: eats non-food, preoccupied with trivial items, hums, grunts • Communication disturbance: echolalia, perseveration, talks to self, talks in whispers • Anxiety: separation anxiety, distressed if alone, fears, phobias, cries easily • Social relating: doesn’t show affection, resists cuddling, aloof, doesn’t respond to other’s feelings

8. Potential risk & protective factors associated with psychopathology • Biological variables • genetic evaluation (cause of ID) • other medical conditions (eg epilepsy) • Psychological variables • cognitive assessment (level of ID) • temperament

9. Potential risk & protective factors associated with psychopathology • Individual psychosocial variables • social networks • daytime activities & living arrangements • injury • life events • Family psychosocial variables • family functioning (FAD) • parental mental health (GHQ-28) • SES

10. Participation rate No significant differences (age, sex, IQ level, or degree of psychopathology) between participants and non-participants

11. Prevalence of psychopathology (Time 1) • 43.3% had severe emotional and behavioural problems (‘psychiatric caseness’) • no significant effect of age or sex on prevalence of psychopathology • level of ID had a significant effect • profound ID - lower reported levels of disturbance • mild ID - more likely to have antisocial and disruptive behaviours • severe ID - more self-absorbed and social relating problems

12. ‘Caseness’: Epidemiological sample Significant reduction in overall level of psychopathology over approximately 9 years

13. ‘Caseness’: Epidemiological sample • 57.2% of ‘cases’ at Time 1 remained ‘cases’ at Time 3 • 42.8% of ‘cases’ at Time 1 were classified as ‘non-cases’ at Time 3 • 19.7% of ‘non-cases’ at Time 1 were ‘cases’ at Time 3 • 80.3% of ‘non-cases’ at Time 1 remained ‘non-cases’ at Time 3

14. Overall psychopathology Time 1 Time 3

15. Disruptive / Antisocial Time 1 Time 3

16. Self-Absorbed Time 1 Time 3

17. Communication Disturbance Time 1 Time 3

18. Anxiety Time 1 Time 3

19. Social Relating Time 1 Time 3

20. DBC-P: Depression Mean Depression Score

21. DBC-P: Hyperactivity Mean Hyperactivity Score

22. Family functioning across samples Mean FAD score Clinical Sample Sample of 55 Australian adolescents, with DSM-IV diagnosis of anxiety disorder. Ontario Child Health Study (Byles et al 1988) General population epidemiological survey of emotional & behavioural disorders among children aged 4-16 in Ontario.

23. Change in family functioning: Epidemiological sample Mean FAD total score

24. Parental mental health Mean GHQ score Mean GHQ score Normative sample (Cox & Wichelow, 1993): GHQ was completed by a nationwide sample of adults in England, Scotland and Wales in 1984/5 Normative sample (Cox & Wichelow, 1993): GHQ was completed by a nationwide sample of adults in England, Scotland and Wales in 1984/5 One-way analysis of variance revealed significant group differences at p <.05

25. Change in parental mental health: Epidemiological sample Mean GHQ total score

26. Conclusions • high levels of behavioural & emotional disturbance • psychopathology 2-3 times more common • some decrease over time, but still high • importance of psychiatric assessment • early intervention • burden on the family - family functioning & parental mental health

27. Advantages of multilevel modelling • Multiple data collection waves (>=2) are accommodated • Number and spacing of data collection schedules can vary across individuals • Shape of growth curves (slope & intercept) can vary across individuals • Individual change can be represented by linear, curvlinear or discontinuous trajectories • Time varying and time invariant predictors are accommodated • Multiple predictors of individual change can be modelled Willett, 1997; Hox, 1999

28. Multi-level model sample sizes

29. IQ 25% severe 43% moderate 32% mild Gender 58% male 42% female Demographic information

30. Child-related predictors of psychopathology • Data at three time points • Variables: Demographic Information: age, sex, IQ Social Networks EAS Temperament, 4 subscales: • Emotionality • Activity • Shyness • Sociability

31. Family-related predictors of psychopathology • Variables: • family functioning (Family Assessment Device FAD) • parental mental health (General Health Questionnaire GHQ) • living arrangements • stressful life events

32. Predictors of high Time 3 psychopathology • Child variables: • high Time 1 DBC total score • Temperament (EAS) high Emotionality & Activity, low Sociability • restricted social networks • younger age

33. Predictors of high Time 3 psychopathology • Family variables: • high General Health Questionnaire (GHQ) total score • high Anxiety score (GHQ factor 2) • high Depression score (GHQ factor 4)

34. Predictors of high Time 3 Disruptive/Antisocial scores • Child variables: • high Time 1 Disruptive/Antisocial score • Temperament (EAS) high Emotionality & Activity scores • higher IQ

35. Predictors of high Time 3 Disruptive/Antisocial scores • Family variables: • high GHQ total and Anxiety scores • poor family functioning • ‘non-intact’ family

36. Predictors of high Time 3 Self-Absorbed scores • Child variables: • high Time 1 Self-Absorbed score • Temperament (EAS) high Emotionality & Activity scores • Temperament (EAS) low Sociability • lower IQ

37. Predictors of high Time 3 Self-Absorbed scores • Family variables: • high GHQ parental Anxiety scores • low number of stressful life events

38. Predictors of high Time 3 Communication Disturbance scores • Child variables: • high Time 1 Communication Disturbance score • Temperament (EAS) high Emotionality & Activity • Temperament (EAS) low Sociability & Shyness • higher IQ • restricted social networks

39. Predictors of high Time 3 Communication Disturbance scores • Family variables: • high parental GHQ total score • high parental Anxiety score (GHQ factor 2)

40. Predictors of high Time 3 Anxiety scores • Child variables: • high Time 1 Anxiety score • Temperament (EAS) high Emotionality, Shyness, & Activity (trend) scores • restricted social networks

41. Predictors of high Time 3Anxiety scores • Family variables: • high parental GHQ total score • high parental GHQ somatic symptoms & depression scores

42. Predictors of high Time 3 Social Relating scores • Child variables: • high Time 1 Social Relating score • Temperament (EAS) high Emotionality & Shyness scores • Temperament (EAS) low Sociability

43. Summary & Conclusions • serious psychopathology in young people with ID • more common than in the general population • Age, gender & & IQ level (apart from profound ID) did not influence prevalence of psychopathology • IQ did have some influence on nature of symptoms • tends to persist from childhood through adolescence into early adulthood

44. Summary & Conclusions • around 15% recover their mental health over time, however a similar proportion develop serious mental health problems • disruptive & attention deficit hyperactivity behaviours become less prevalent with maturity • depression increase • continuation of longitudinal study • emergence of adult mental illness • psychosis and affective disorders

45. Summary & Conclusions • study suggests emerging biopsychosocial model of psychopathology in ID • genetic cause of ID clearly influences behaviours and emtional experience • family and environmental factors also interact with psychopathology

46. Conclusions • further follow-up (Times 4 & 5) will explore the causal direction of associations between psychopathology and family and social situations • findings support development of early intervention and prevention programmes • targeted at young people with high levels of disturbance (eg disruptive behaviours, anxiety, autism)

47. CDPP Web page • http://www.med.monash.edu.au/ • psychmed/units/devpsych/index.html