Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD

1. Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors: Prof. Francesca Happé and Dr Essi Viding MRC Social, Genetic and Developmental Psychiatry Centre

2. Background PDA – proposed by Newson for children she would have otherwise termed “atypical autism”. Inability to tolerate having anything imposed on them, social strategies to avoid demands, driven by need for control, outrageous behaviour. Equal gender ratio. Don’t respond to intervention approaches known to work well in ASD

3. Background Not included in official diagnostic manuals (DSM-IV/ ICD-10). Increasingly recognised in the UK – c. 300 clinicians/ professionals attended recent NAS conference. No research. Poor prognosis – great parental concern, particularly about managing adolescents/ adults.

4. Outline of the talk Part 1: Main features of PDA – anecdotal descriptions. Part 2: Findings of a questionnaire study exploring the behavioural profile in PDA, compared to children with conduct problems/ callous unemotional traits and children with ASD. Heritability analysis.

5. Part 1: What is PDA? Resist ordinary demands using social manipulation “Superficial sociability” (e.g. no sense of responsibility, acceptable behaviour, or social boundaries) Lability of mood & impulsivity Pre-occupation with role play & pretend Passive early history Newson, Le Maréchal & David (2003) Arch Dis Child 2003;88:595-600

6. Unable to comply with even simple requests. Becomes obvious when the child starts at nursery – parents get used to handling the child with “velvet gloves”. Social nature of the demand is the problem. 1. Avoiding demands

7. 1. Uses social manipulation to avoid demands Example of social manipulation from a commentary by D. Tantam: “Richard, for no apparent reason, seemed to target one particular teacher at school. He made slighting remarks about her at first, and then became increasingly crude in his language until she became so distressed that she said to the head-teacher that either he went, or she did”

8. Avoidance tactics: rages or meltdowns repetitive questionning ignoring changing the subject, making excuses or threats slipping into a borrowed persona extreme behaviour (e.g. shouting swear words, becoming violent, removing clothes, urinating on the floor, dialling 999) praise and reproof don’t work. 1. Uses social manipulation to avoid demands

9. Disinhibited/ socially inappropriate behaviour over and above demand avoidance, are not put off by others’ reactions. Lack of sense of acceptable limits on behaviour - Do not seem to realise that the rules apply to them. May humiliate parents in public, call the police, make false accusations etc. 2. ‘Superficial sociability’

10. Unable to negotiate with others their own age: see themselves as an adult. Bossy and domineering towards peers. Peers perceive that they are infantile or are put off by unpredictable and dis-inhibited behaviour. Prefer 1:1 with adults, but only on their terms. One sided/ controlling relationship with parents, but do need them. 2. ‘Superficial sociability’: social relationships

11. 2. ‘Superficial sociability’: social persona May not seem socially unusual at first – gradually becomes clear that their social persona is a combination of roles. Lack social understanding of their own but realise that they should behave in a certain way and able to copy.  Social behaviour is “unsubtle or ill-judged” – roles don’t blend in – it is “learned behaviour”.

12. Very extreme emotional responses to small events. Sudden switches from loving to aggression. Very impulsive & unpredictable (e.g. prone to self injury/ attacking others). Meltdowns and panic attacks 3. Lability of mood – led by need to control

13. 4. Role play “Lives the part, not the usual pretence”. Often used to avoid engaging socially/ as an adaptation to social interaction. Some don’t seem aware of the distinction between reality & fantasy. In adulthood: 6/18 engaged in fantasy communications such as poison pen letters, fantasy love letters, hoax phone calls and letters.

14. 5. Passive during infancy & other characteristics. Passive, does not play with other children, becomes “actively passive”. Language delay, but catch-up often rapid. “He only crawled when he thought no-one was looking….” Other Obsessions: centred on people or inappropriate topics.

15. In adulthood (age 16-32: Newson et al., 2003) Parents concerned about aggression and violence (to self and others) Social vulnerability (many are easily led or an easy target) Their child’s sense of right and wrong.

16. Questionnaire study: new data from parents of children with PDA (aged 9-16yrs) Compared with existing data from parents of 5,000 12yr olds, where we identified: Conduct problems/ callous unemotional traits (CP/CU; N=28) Autism Spectrum Disorders (ASD; N=39) Typical levels of key behaviours in >4,000 ‘TD’ children Part 2: What do PDA look like on child behaviour questionnaires?

17. Outcomes Nature of difficulties in PDA vs. ASD and CP/CU Autistic-like behaviours Social interaction problems Difficult behaviour Anxiety • Severity of difficulties in PDA

18. Score on “Childhood Autism Spectrum Test” for PDA (& ASD) top 1% of distribution Autistic traits

19. Social interaction problems • Similar to individuals with ASD – most affected 1%

20. Score on the Anti-Social Process Screening Device top 1% (like CP/CU). Conduct problems/ CU traits

21. Anxiety/ emotionality Score on the Anxiety/ emotionality subscale of the SDQ in top 1% of population distribution (significantly higher than ASD and CP/CU).

22. Twin1 score Twin 2 score Twin study • Assigned a “PDA score” – a composite of items. • Were identical twins more similar in PDA traits?

23. Heritability NON-IDENTICAL IDENTICAL • Substantial genetic influences, plus some shared environmental effects.

24. Future directions

25. Emotion recognition Research plans • Experimental research into PDA to investigate... • ToM • Empathy/ detachment • Social reward

26. Development of questionnaire to measure PDA traits... The “Extreme Demand Avoidance” Questionnaire developed with assistance of Phil Christie. Currently collecting data on this and the SDQ from parents of children aged 6-17. If you are a parent of a child with ASD/ ADHD etc. or a typically developing child, please take part in the study!

27. Supervisors: Francesca Happe & EssiViding ENC: Phil Christie, Dorinda Miller, RukhsanaMeherali, Kayleigh Storey, Carrie Munroe PDA website: Margaret Duncan Clinicians: Lorna Wing, Judy Gould, Francesca Scanlon, Rosalyn Proops, Betsy Brua, Liz Savage, Jacqueline Morgan. KCL:CorinaGreven, TEDS team Parents: In particular Neville Starnes, Sam Parsons & Paula Webb Acknowledgements