Pathological Demand Avoidance
Pathological Demand Avoidance (PDA) is a pervasive developmental disorder separate from but related to autism, first identified by Professor Elizabeth Newson at the University of Nottingham in 1983. Children with this syndrome resist and avoid all the ‘demands’ that are made on them during their normal daily life. The disorder appears to be shared equally between girls and boys, compared with autism (about 1 in 4 is a girl) and Asperger Syndrome (less than 1 in 10). A provisional diagnosis may be possible at around the age of four, but this is not easy. The child will show more social interest, imaginative skills and normal language development than a child with autism.When Professor Newson first started writing about PDA, she described it as a “failure to code social identity and hence social obligation”. This compares with her description of autism as a “failure to code all first communicative modes: speech, gesture, facial expression, other body language, and the timing of these”; dysphasia: a “failure to code spoken messages”; dyslexia: a “failure to code written messages”.
The Diagnostic Criteria of PDA: (see www.pdacontact.org.uk for a comparison with autism / Asperger Syndrome):
1. Passive Early History in first year
Often doesn’t reach, drops toys, ‘just watches’; often delayed milestones. As more is expected of him/her, child becomes ‘actively passive’, i.e. strongly objects to normal demands, resists. A few actively resist from the start, everything is on their own terms. Parents tend to adapt so completely that they are unprepared for the extent of failure once a child is subjected to ordinary group demands of nursery or school; they realise their child needs ‘velvet gloves’ but don’t perceive it as abnormal. Professionals too see the child as puzzling but normal at first.
2. Continues to resist and avoid ordinary demands of life
Seems to feel under intolerable pressure from normal expectations of young children; devotes self to actively avoiding these. Demand avoidance may seem the greatest social and cognitive skill, and most obsessional preoccupation. As language develops, strategies of avoidance are essentially socially manipulative, often adapted to adult involved; they may include: · Distracting adult: e.g. ‘Look out of the window!’ ‘I’ve got you a flower!’ ‘I’m going to be sick’ · Acknowledging demand but excusing self: e.g. ‘I’m sorry, but I can’t’ ‘I’ve got to do this first’ ‘can’t make me’· Physically incapacitating self: hides under table, curls up in corner, goes limp, dissolves in tears, drops everything, seems unable to look in direction of task (though retains eye contact), removes clothes or glasses, ‘I’m too hot’ ‘I’m too tired’ ‘It’s too late now’ ‘I’m handicapped’ ‘my hands have gone flat’. · Withdrawing into fantasy, doll play, animal play: talks only to doll or to inanimate objects; appeals to doll, ‘My girls won’t let me do that’ ‘But I’m a tractor, tractors don’t have hands’; growls, bites. · Reducing meaningful conversation: bombards adult with speech (or other noises, e.g. humming) to drown out demands; mimics purposefully; refuses to speak. · (As last resort) Outbursts, screaming, hitting, kicking; best construed as panic attack.
3. Surface sociability, but apparent lack of sense of social identity, pride or shame
At first sight normally sociable (has enough empathy to manipulate adults as shown in 2. but ambiguous (see 4) and without depth. No negotiation with other children, doesn’t identify with children as a category: the question ‘Does she know she’s a child?’ makes sense to parents, who recognise this as a major problem. Wants other children to admire, but usually shocks them by complete lack of boundaries. No sense of responsibility, not concerned with what is ‘fitting to her age’ (might pick fight with toddler). Despite social awareness, behaviour is uninhibited, e.g. unprovoked aggression, extreme giggling/inappropriate laughter or kicking/screaming in shop or classroom. Prefers adults but doesn’t recognise their status. Seems very naughty, but parents say ‘not naughty but confused’ and ‘it’s not that she can’t or won’t, but she can’t help it’ - parents at a loss, as are others. Praise, reward, reproof and punishment ineffective; behavioural approaches fail.
4. Lability of Mood, impulsive, led by need to control
Switches from cuddling to thumping for no obvious reason; or both at once (‘I hate you’ while hugging, nipping while handholding). Very impetuous, has to follow impulse. Switching of mood may be response to perceived pressure; goes ‘over the top’ in protest or in fear reaction, or even in affection; emotions may seem like an ‘act’. Activity must be on child’s terms; can change mind in an instant if suspects someone else is exerting control. May apologise but re-offend at once, or totally deny the obvious. Teachers need great variety of strategies, not rule-based: novelty helps.
5. Comfortable in role play and pretending
Some appear to lose touch with reality. May take over second-hand roles as a convenient ‘way of being’, i.e. coping strategy. Many behave to other children like the teacher (thus seem bossy); may mimic and extend styles to suit mood, or to control events or people. Parents are often confused about ‘who he really is’. May take charge of assessment in role of psychologist, or using puppets, which helps co-operation; may adopt style of baby, or of video character. Role play of ‘good person’ may help in school, but may divert attention from underachievement. Enjoys dolls/toy animals/domestic play. Copes with normal conventions of shared pretending. Indirect instruction helps.
6. Language delay, seems result of passivity
Good degree of catch-up, often sudden. Pragmatics not deeply disordered, good eye-contact (sometimes over-strong); social timing fair except when interrupted by avoidance; facial expression usually normal or over-vivacious. However, speech content usually odd or bizarre, even discounting demand-avoidant speech. Social mimicry more common than video mimicry; brief echoing in some. Repetitive questions used for distraction, but may signal panic.
7. Obsessive behaviour
Much or most of the behaviour described is carried out in an obsessive way, especially demand avoidance: as a result, most children show very low level achievement in school because motivation to avoid demands is so sustained, and because the child knows no boundaries to avoidance. Other obsessions tend to be social, i.e. to do with people and their characteristics; some obsessionally blame or harass people they don’t like, or are overpowering in their liking for certain people; children may target other individual children.
8. Neurological Involvement
Soft neurological signs are seen in the form of clumsiness and physical awkwardness; crawling late or absent in more than half. Some have absences, fits or episodic dyscontrol or apparent generalised over-arousal.
Problems:
The behaviours listed above are going to cause problems in many social contexts, during home and school life. These children are different from children with autism and other autism spectrum disorders. They may not be popular with their peers and may not elicit sympathy; they have a limited supply of humour and shame for teachers and parents to use as a tool. They will try to shock you – and if this works, they will do it again. They will mimic you and others and will often become the class scapegoat. They will not be able to handle these situations and may often end each episode or confrontation with an outburst.
They have no respect for ‘authority’. Because of their social identity problems, they see no difference between adult/child, teacher/pupil. As they fail to commit to the other children in their year group, they will tend to lean towards you, the adult.
To all intents and purposes they may seem to become compliant and well behaved: but this may be a ‘role’ they are playing because it produces the right result as far as they are concerned: they are left alone.
Remember:
Professor Newson recommends -
1. keep her on task
2. check repeatedly and over time that what she appears to be learning is being absorbed
3. ensure minimum degree of disruption to others in the class
4. try to promote good peer relationships
5. a keyworker approach involving a minimum of 1:2 staff:pupils is the ideal.
Useful Contacts:
Contact a Family
209-211 City Road, London EC1V 1JN
Tel: 0808 800 5793
If your child has a rare disorder or a learning disability, CAF can help with information and support groups.
Web: www.cafamily.org.uk
The Elizabeth Newson Centre (formerly Early Years Diagnostic Centre)
Tel: 01623 490879
272 Longdale Lane, Ravenshead, Notts NG15 9AH.
A diagnostic centre which produces its own publications, useful articles and booklets on PDA, AS and other disorders.
Web: www.sutherlandhouse.org.uk
E-mail: ravenshead@sutherlandhouse.org.uk
The PDA Contact Group
Website: www.pdacontact.org.uk
E-mail: jan.seaborne@pdacontact.org.uk
Tel: 0208 715 6179
24 Daybrook Road, London SW19 3DH. A parent support group set up by a parent in 1997.
Reading:
Children with Pathological Demand Avoidance Syndrome: a booklet for brothers and sisters. Author: Julie Davies. Available from the Elizabeth Newson Centre (see above).
Educational and Handling Guidelines for Children with Pathological Demand Avoidance Syndrome is a paper by Professor Newson downloadable from the PDA Contact Group website or paper copies available from the Centre above.
Cambian Education Services run seven residential special schools and colleges for young people with autistic spectrum disorders, Asperger Syndrome/HFA, severe learning difficulties. OAASIS can give you advice on the schools and send you their prospectuses.
OAASIS produces 8 chargeable publications entitled ‘First Guide to…’; wallet sized cards explaining 9 learning disabilities and a wide range of free Information Sheets. Please contact OAASIS for the full list, or view them on the website at www.oaasis.co.uk. All the information sheets are checked annually, please ensure you have the current version.
Note: This OAASIS Information Sheet uses ‘she’ and ‘her’ rather than the cumbersome ‘he / she’ ‘his / her’ ‘him / her’. No sexism is intended. The sheets are checked annually, please ensure you have the current version.
Acknowledgements: This Information Sheet has been produced using Prof Elizabeth Newson’s papers as displayed on the PDA Contact Group website, with her full permission.
© OAASIS (Office for Advice Assistance Support and Information on Special needs) This article can be freely reproduced with due attribution of authorship.