Pathological Demand Avoidance PDA exploring the behavioural profile

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

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

Background • Not included in official diagnostic manuals (DSMIV/ 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.

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.

Part 1: What is PDA? 1. Resist ordinary demands using social manipulation 2. “Superficial sociability” (e. g. no sense of responsibility, acceptable behaviour, or social boundaries) 3. Lability of mood & impulsivity 4. Pre-occupation with role play & pretend 5. Passive early history Newson, Le Maréchal & David (2003) Arch Dis Child 2003; 88: 595 -600

1. Avoiding demands – 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. 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”

1. Uses social manipulation to avoid demands 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.

2. ‘Superficial sociability’ 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’: social relationships 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 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”.

3. Lability of mood – led by need to control • 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

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.

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.

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.

Part 2: What do PDA look like on child behaviour questionnaires? • Questionnaire study: new data from parents of children with PDA (aged 9 -16 yrs) • Compared with existing data from parents of 5, 000 12 yr 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

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

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

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

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

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

Twin study Twin 1 score Twin 2 score • Assigned a “PDA score” – a composite of items. • Were identical twins more similar in PDA traits?

Heritability • Substantial genetic influences, plus some shared environmental effects. NO NID ID EN TI CA L EN TIC AL

Future directions

Research plans u Experimental research into PDA to investigate. . . • To. M • Emotion recognition • Empathy/ detachment • Social reward

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!

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