pathological demand avoidance (pda): exploring the behavioural profile & overlap with asd liz...

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Pathological Demand Pathological Demand Avoidance (PDA): Avoidance (PDA): exploring the behavioural exploring the behavioural profile & overlap with ASD profile & overlap with ASD Liz O’Nions, PhD Student [email protected] Supervisors: Prof. Francesca Happé and Dr Essi Viding MRC Social, Genetic and Developmental Psychiatry Centre

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Page 1: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

Pathological Demand Avoidance Pathological Demand Avoidance (PDA): (PDA):

exploring the behavioural profile & overlap exploring the behavioural profile & overlap with ASDwith ASD

Liz O’Nions, PhD [email protected]

Supervisors: Prof. Francesca Happé and Dr Essi Viding

MRC Social, Genetic and Developmental Psychiatry Centre

Page 2: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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

Page 3: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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.

Page 4: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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.

Page 5: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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

Page 6: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

– 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

Page 7: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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”

Page 8: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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

Page 9: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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’

Page 10: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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.

Page 11: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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”.

Page 12: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

• 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

Page 13: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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.

Page 14: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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.

Page 15: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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.

Page 16: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

• 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?

Page 17: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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

Page 18: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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

Autistic traits

Page 19: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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

Page 20: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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

Conduct problems/ CU traits

Page 21: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

Anxiety/ emotionality• Score on the Anxiety/ emotionality subscale of the SDQ

in top 1% of population distribution (significantly higher than ASD and CP/CU).

Page 22: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

Twin studyTwin study

Twin1 score

Twin 2 score

• Assigned a “PDA score” – a composite of items.

• Were identical twins more similar in PDA traits?

Page 23: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

Heritability• Substantial genetic influences, plus some

shared environmental effects.

Effects of genetics on population variance in PDA traits

Genetic

Shared environment

Non-shared environment

IDENTICAL

NON-IDENTICAL

Page 24: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

Future directions

Page 25: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

•ToM •Empathy/ detachment

•Social reward

•Emotion recognition

Research plansResearch plans Experimental research into PDA to investigate...

Page 26: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

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!

Page 27: Pathological Demand Avoidance (PDA): exploring the behavioural profile & overlap with ASD Liz O’Nions, PhD Student elizabeth.onions@kcl.ac.uk Supervisors:

AcknowledgementsAcknowledgementsSupervisors: 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