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Wednesday, 30 March 2011

Rays of Sunshine

Dear Friends and Colleagues,

Under pressure from my daughter Maisie, I have stupidly agreed to run the Lincoln 10k (i've not really done any serious running since 1985). If anybody would like to pledge any money for me to run (and finish) the Lincoln 10k, they can do so by emailing me at my hotmail:

Any money raised will be given to the children's charity rays of sunshine: (see link on the right of this page).

You may be aware that Leah, one of the little girls that attends Nursery with my son Reuben is very ill. Last week Rays of Sunshine put on a wish party for Leah. This was a beautiful and joyous event where Leah arrived dressed as a princess in a beautiful horse and carriage. The party had clowns, a disco, a magician, and of course fabulous cakes. This party was a wonderful way for Leah to spend time with her friends and was completely organised by Rays of Sunshine. Inspired by this, I am sure that we would all love to see other brave children have their wish turned into a happy memory for all that love them.

My very best wishes to all


Thursday, 24 March 2011

The 4 types of sentences used to present information in a Social Story

Outline situation
Age appropriate
Level of understanding

The 4 types of sentences used to present information in a Social Story:
Descriptive sentences

Address the “wh” questions: where the situation takes place, who is involved, what they are doing, and why they may be doing it.
 ‘I am attending a workshop’
 ‘Normally I have toast for breakfast’

Perspective sentences

Give an insight into the minds of those involved in the story; they provide details about the emotions and thoughts of others.
 ‘Teacher will like it if I put my hand up to ask a question’
 ‘The other children will be happy if I share the ball’

Directive sentences

Suggest desired responses tailored to the individual.
 ‘I will put my plate in the dishwasher’
 ‘I will share the football’

May also contain affirmative sentences

 ‘This is an intelligent thing to do’
 ‘Sensible children always walk in the school corridor’

Insurance words
 It is often useful to make the story literal by using insurance words.
 ‘Usually’
 ‘Sometimes’
 ‘Normally’
 ‘Often’

Saturday, 12 March 2011

City Academy Hackney

A big thank you to all the staff who attended the ADHD training at the City Academy Hackney on Wednesday night. A most inspiring school!

Wednesday, 2 March 2011

Pathological Demand Avoidance (PDA)

Pathological Demand Avoidance (PDA)

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
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. Liability 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.

• she needs good role models
• she needs clear boundaries
• handling should be indirect: do not confront
• routine and sameness do not work (unlike autism
and Asperger Syndrome)
• soften your firmness with humour
• be flexible and imaginative – what works today might
not work tomorrow … but may next week!
• see ‘aggressive’ behaviours/outbursts as anxiety/panic
attacks: reassure rather than blame
• if she manages to control herself while at school, she
will ‘blow’ when at home, either verbally or
physically. And sometimes vice versa.

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 are the ideal.