National Autistic Society Robert Ogden School

1. National Autistic Society Robert Ogden School

2. Outline of the presentation Key features of Pathological Demand Avoidance (PDA) PDA is a relatively new term being used as a clinical description. Demand Avoidance can be seen in children with Autistic Spectrum Disorder (ASD) but when the avoidance reaches a pathological level major difficulties arise.( rarity) PDA /EDA Implications for managing and teaching young people with PDA The key differences in working with young people with ASD and children with ASD with a PDA profile. It is not true that there is one list of strategies exclusively for children with autism and another separate list for children with PDA. Lots of children need a combination of the two, with individualised adaptations. Effective teaching and everyday approaches These young people are identified as very complex and it is a whole package of measures that makes the difference rather than isolating a few key issues .There are no absolute or clear guidelines but a repertoire of approaches that can make a difference.( Altered Approach).

3. Pathological Demand Avoidance (PDA) History PDA was originally developed from the work of Elizabeth Newson in the early 1980s PDA is not currently recognised in the diagnostic manuals International Statistical Classification of Diseases (ICD-10) or the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) as a separate diagnosis At present there is no specific diagnostic tool or assessment that enables a diagnosis of PDA to be made, rather a combination of ASD specific assessments and expert clinical judgements. The National Autistic Society now recognise PDA as part of the Autism Spectrum. A checklist has been devised. (EDA-Q) PDA ( The Extreme Demand Avoidance Questionnaire: O’Nions , Viding , Greven , Ronald & Happe, 2014 :

4. The assessment of adults with PDA Dr Vincent Egan( Dept. Psychiatry and Applied Psychology, University of Nottingham, uk The research proposes to examine whether a recently develop observer-rating instrument used by carers and of children with PDA ( The Extreme Demand Avoidance Questionnaire: O’Nions , Viding , Greven , Ronald & Happe, 2014 : EDA-Q ) can be used as a similarly reliable and valid self-report in adult populations.

5. Diagnostic Interview for Social and Communication Disorders.

7. Research ( Liz O’Nions et al 2013) completed her PhD 2010 -14 focus: social processing and empathy in people with ASD and in particular PDA “…. Individuals with PDA have the same level of “Autistic Like Traits” as other individuals with a more typical presentation of ‘ASD’ …”Individuals with PDA experience higher levels of emotional stress, parental anxiety and overall childhood behavioural difficulties than those with typical ASD”…. …”Individuals with PDA are the only group who have an ‘anxiety driven need’ to avoid the demands of everyday life regardless of personal consequences”…

8. The main features of PDA include: • resists and avoids the ordinary demands of life, which might include getting up, joining a family activity or other day to day suggestions. This may be the case even when the person seems to want to do what has been suggested. • using social strategies as part of the avoidance e.g. distracting, giving excuses • appearing sociable on the surface, but lacking depth in their understanding. Tuned into might prove effective as a strategy with a particular person • excessive mood swings and impulsivity • being comfortable in role play and pretence, sometimes to an extreme extent and often in a controlling fashion • ‘obsessive’ behaviour that is often focussed on other people.

9. Sufficient social understanding to use a level of social strategic behaviours’ C…parents described how at six years old , he wouldn’t co-operate with simple day to day tasks such as getting dressed. The smallest of demands would initiate ‘avoidance mode’. C.. would offer an escalating amount of resistance . Initially he would giggle , tease and run away . If his parents weren’t distracted , the resistance would become more definite and he might offer excuses such as ‘I’m busy’,.. I’ll do it in a minute .. I want to do this first . His next level would be to say, ‘I feel sick,…my tummy hurts, and so on . He would give reasons , such as ‘it is too hard , too stiff or too heavy . If compliance was still pushed , then he became upset and tearful , followed by anger , shouting and throwing , finally throwing himself to the floor if the demand was not withdrawn.

10. He has a wide variety of strategies to avoid obeying direct demands. He acts as if he has not heard, carrying on with what he’s doing with a blank expression on his face. He distracts by starting to talk about something else and he will go on until you have forgotten what you wanted him to do. He makes excuses such as ‘I’ve just got to’ ….

11. During the early years, it is typical for the parents to feel they have a rather difficult and eccentric child who needs to be, as many put it ‘ handled with kid gloves’ However these children do not usually come to serious medical attention early on because families manage to make them seem relatively normal by making heroic adaptations to their behaviour. Often parents do not even realise to what extent they have conformed to the child’s idiosyncrasies, and provided a protective and undemanding environment for them.

12. Why a separate diagnosis ? A reason for needing the separate diagnostic term are the different needs of the child with PDA. Specialist schools for “autistic” children, which include one or two with PDA, immediately discover the enormous difficulties posed by a child who is deeply threatened by educational demands and organisational rules. The guidelines that are successful with autistic children need major adaptations for PDA children if any progress is to be made; these children hate routine and thrive best on novelty and variety. If perceived as ASD children, the wrong advice will be given: PDA children suffer a high exclusion rate if educated on autistic guidelines, as do young adults. http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

13. ……Several parents stressed how they had to “fight” to get their child’s difficulties recognised by the school and to gain access to appropriate support. One mother stated that even when she finally convinced the school of her child’s need for support, having a teaching assistant “actually made it worse ‘cause having somebody with him all the time telling him to get on with his work was even more pressuring, it was more of a demand. The person obviously didn’t understand PDA, it’s a complicated condition and they didn’t understand it”. Another mother also felt that her child’s refusal to attend school was due to their PDA profile, explaining that the demands placed on the child “caused distress and massive anxiety…..

14. …..One parent felt that labels could help – or hinder – her child in the future: “[child] doesn’t actually have a diagnosis of PDA, he’s only got a diagnosis of his Asperger’s and, which is why his last school didn’t work, there’s a big difference with how you approach someone with Asperger’s and how you approach someone with PDA … so the future worries me because unless somebody says, ‘look you’re going to have to approach this from a different angle’, a part of me feels that he needs the diagnosis of PDA for people to understand or to take him seriously”.

15. The importance of a distinctive diagnosis Julie Daunt , an adult with PDA helping us in developing a clearer insight “For those in the know, PDA does describe a complex mix of strengths and difficulties that has a flavour of several other conditions. To me I expect a pinch of ADHD/ADD and ASD traits, some compulsive/obsessive behaviours and symptoms of anxiety as well as an appearance of attachments/separation issues. For most too, I would expect extreme behaviours that others might see as ODD……… …….All these conditions MAY be helpful to paint a picture of what your child is like, but few (if any) really help understand your child. I would argue that this is where PDA is so helpful, it provides insight and explanation, and with this knowledge there comes a way of interacting and approaching problems that can make a significant difference.” thepdasource.com.

16. “My PDA diagnosis was a signpost for the information that I required to finally understand me, to find others like me and to belong in a community that understood me.” www.memyselfandpda.com “light bulb moment… a whole paper describing my child .. there were other children like M.. …a reason why he behaved the way he did.. ..strategies to try.. ..we could at last move forward.. “ www.pdasociety.org.uk To better understand the young person

17. .. Friends are trying to help get a diagnosis of PDA. Regarding work he can manage only voluntary work ( he’s reasonably high functioning) because he cannot cope with rules of the workplace. His theory is that if he isn’t paid , he doesn’t have to turn up and he isn’t expected to do anything that he doesn’t want to do , then he can cope. Friends are also helping with some life skills – at his request. For me .. PDA has explained everything about my dad’s behaviour and everything about my own too. Discovering PDA has been incredibly useful and empowering thing . Me and my dad are all extremely demand avoidant, neither of us has a diagnosis but waiting to be seen by a paediatrician . Ask either of us to do anything and we immediately resist , what ever the request or even suggestion.

18. ..My parents were told I wasn’t sixth form material and I (gladly) left that school and went to sixth form college for A levels. I did much better there because the pressure was reduced. Fortunately , I chose a degree with few lectures , it was pretty much self- directed learning and in the end I got a 2:1. It was definitely the case that the less teaching I had the more I learnt. For the last 15 years though I have been successfully running my own business and I truly believe that I could not work for anyone else. ..It took until I was eighteen for anyone to take my family seriously… would not get a diagnosis ..lack of funding.. Too bright to be special needs , because I was simple rude , arrogant and lazy, because ‘there is nothing wrong with your daughter.’ When I was nineteen and a half I finally received my diagnosis. Because I have a diagnosis of PDA I have been able to access cognitive behavioural therapy to help me with emotion regulation. I have a full time job which I do very well.

19. Individuals with PDA share difficulties with other people on the autism spectrum in terms of social aspects of interaction and communication, together with some repetitive patterns of behaviour. People with PDA often seem to have better social understanding than others on the spectrum, which means some of their difficulties may be less obvious at first.

20. RESISTS AND AVOIDS ORDINARY EVERYDAY DEMANDS OF LIFE • (pathologically ) • Avoidance may seem the greatest social and cognitive skill • Strategies can include: • Distracting adult. “I like your hair”, I’m going to be sick • Acknowledging demand but excusing self. I’m sorry but …. It’s too late now, I’m handicapped, it’s too hot. • Quotes from Julie Daunt regarding excuses • These are things I say quite regularly. I often just say them to myself. • “ the cat doesn’t like it when I tidy my bedroom” • “ I can’t vacuum because the cats are asleep” • “I have just painted my nails and I don’t want to chip them”

21. RESISTS AND AVOIDS ORDINARY EVERYDAY DEMANDS OF LIFE ..My reaction depends on so many different factors like my mood at the time, who is demanding something of me , why they are doing it and how often they’re made demands of me before. All these factors ,and more,play a role. .. Feeling anxious about demands is as normal a reaction as crying when in pain or laughing at a joke. A scenario I’ve used in the past is this: you and I are both given a bucket and someone keeps pouring in equal amounts of water ( demands/ anxiety) into each bucket so consequently the buckets begin to fill up, the only difference is that your bucket has tiny holes in it so it never reaches the top and spills over unless the water in was to become greater than the water out. My bucket doesn’t have these holes an so can therefore only ever spill over so I must try and reduce the water in so it doesn’t overflow but at some point my bucket will be full and I will go into meltdown. That is a fact. It really is a daily balancing act. Some days are better than others.

22. RESISTS AND AVOIDS ORDINARY EVERYDAY DEMANDS OF LIFE ..every day I must make choices on what ‘demands’ I can cope with. On a bad day that might mean even brushing my teeth is a demand too far. If I am having a bad day I just do what I can and I won’t push myself because if I do it will make matters worse. If I’m having a good day then I am able to push myself and I will have a fairly ‘normal’ day. “ if I’m in a bit of a stressful situation . like Morrison’s on Christmas Eve , then I simply walk out and sit in the car because if I had stayed then I would have completely lost it and I couldn’t face doing that in public.” Work ..I’ve never worked. I’ve volunteered in charity shops and in playgrounds and I’ve done odd jobs for friends. I’ve also had a market stall twice, I’ve also been a Body Shop home rep. I’ve tried to dip my toe into work but it’s something that I don’t think I will ever be able to do this as it causes me way too much anxiety which leaves me unable to function at any level…

23. Procrastination and negotiation: “he spends a huge amount of time and energy fighting off the demand, when a fraction of that time and energy would have accomplished the request”. • Physically incapacitating self: “my hands won’t work”, my knee hurts. • Withdrawing into fantasy: Good imaginative play. At times the imagination can be so strong that the boundaries between reality and imagination can become blurred. • “ but I’m a car, cars don’t have hand’s”. My rabbit doesn’t like this game. Pretend to be the family pet. Play-acting but have difficulties breaking out of the role. The child seems to believe that they really are the character of their imagination. • Physical outburst or attacks. Referred to as anxiety/panic attacks

24. I often “lived in my own little world’ – I liked it there. One of my closest friends growing up was my soft toy, ALF. I would feed , wash ,dress him, teach him to read, talk to him and make other do so too. When I am asked now about ALF , whether I really thought he was real or if I knew deep down he was a toy, I have to say that in all honesty I really thought he was real. He was the perfect friend for a child like me. He never judged me, never made me do things that upset me, was never upset or hurt by my actions , never answered back and loved me unconditionally. ALF played a big role in my life until my teens. I still have him now.

25. RESISTS AND AVOIDS ORDINARY EVERYDAY DEMANDS OF LIFE • Unable rather than unwilling • Problem behaviours include: • Oppositional ,does not admit responsibility , blames others, • does not care about disciplinary actions , chooses not to follow through with • directives and directions, engages in avoidance over small things . Chooses not to follow school rules, routines. • Demand avoidance techniques experienced with children include : • I don’t do work / you can’t tell me what to do • Ignoring you • Say the work is ’boring!’ • ‘Say they have done the work before

26. Give a reason why they can not comply • Loosing property/ Breaking equipment • Doing jobs for staff • Using their charm to distract you • Using their vivid imagination to distract/shock you • Starting an activity. • Changing the subject • Sleeping

27. AVOIDS DEMANDS USING SOCIAL STRATEGIES led by need to control unable to accept reasonable limits. “ As a young child, E.. was passively resistant ( e.g. claiming to have forgotten PE kit or be poorly as an excuse). During secondary school E.. behaviour become more extreme, she had tantrums and refused to go to school. E was excluded due to extreme defiant/provocative behaviour and bullying. She often refuses to come out of her bedroom ,stays in bed, threatens, takes her clothes off when at home, breaks things,” Need to control, unable to accept reasonable limits E.. Threatened her mum’s boyfriend with a stick whilst he and her mum were sleeping, forcing him to leave.

28. SUPERFICIALLY SOCIALLY SKILLED Children with PDA are often very sociable and can display degrees of empathy previously not thought to be consistent with autism. Sometimes it seems that they are able to understand other people at an intellectual level but not at an emotional level. However , despite their use of social niceties, their social interaction is very often flawed by their inability to see the bigger picture, their lack of boundaries and their desire to be in control of the situation .They often understand rules, but don’t feel they apply to themselves. Often hypersensitive to others voices, facial expressions etc.

29. SURFACE SOCIABILITY,BUT APPARENT LACK OF SENSE OF SOCIAL • IDENTITY, PRIDE OR SHAME • Lack of concern about age group or social hierarchy. They don’t know their place in the social hierarchy , and may identify him/herself in an adult role. Over familiar with adults and or peers. • At first sociable and ‘people orientated’ • Wants other children to admire, but usually shocks them by complete lack of boundaries • Behaviour is uninhibited. No sense of responsibility. Unaware of impact of behaviour • E.. Is good at playing people off against each other. She has also used socially astute strategies to avoid or get control ( e.g. saying to a policeman” you could be a paedophile for all I know”.) She does not accept the authority of the police. • A.. Appears to have no concern for authority. • She has a history of making threats that her parents meet her demands. At school, she was defiant of staff to the point of walking out , swearing, ignoring sanctions.

30. although he has an intellectual understanding of social rules and is able to see how these might apply to others , he shows no motivation to apply them to himself and appears unable to establish an emotional empathy for others.’ ….To other children he will happily act as if he were their mother…”have you washed your hands ?..” don’t put your elbows on the table “…. But he doesn’t have a sense of himself to follow basic table manners. “Can be a friend to younger children, often taking the role of teacher” “She has been banned from dance/drama club – she wants to do her own thing in her own specific way and even criticises the teacher. She has been known during dance performance to try and stop the group in front of the audience so that she can tell them where they are going wrong and how to do it, but of course it is her way”.

31. LABILITY OF MOOD • Led by the need to control • Switches between loving and violent behaviour often for no apparent reason or perceived pressure • Activity must be on child’s terms: can change mind in an instant if suspects someone else is exerting control • Different levels – children are usually in control of their behaviour but NOT their anxiety.

32. COMFORTABLE IN ROLE PLAY AND PRETENDING • Some appear to lose touch with reality • B.. Will talk about things which never actually happened. • May take over second hand roles as a convenient ‘way of being’, i.e. coping strategy • M.. Enjoys taking the role of a Hollyoaks character copying exactly from TV. She always takes on the male role. She may be in role for hours or just adopt it for a few phrases. • May mimic and extend styles to suit mood, or to control events or people • C.. Mimics odd or violent behaviour from console games/ DVD’s, accents • Fantasises, tells tall tales • My child was so cross that I banned him from Mine-craft for bad behaviour that he told his school that I had hit him and hung him upside down in the shower!!!! • A.. My parents locked me out of the house….

33. OBSESSIVE BEHAVIOURS • Much or most of the behaviours described is carried out in an obsessive way • Other obsessions tend to be social , i.e. to do with people and their characteristics. • “ ….My obsessions tend to be of a social nature. I can become obsessed with being with certain people or become obsessed with negative feelings about others. I am also obsessed with avoiding any demands or suggestions placed on me. If I can’t follow my obsession I can have a meltdown which is best seen as a panic attack”.

34. Other characteristics • Good eye contact and may use this to manipulate others • Difficulties interacting with peers- bossy and domineering • Lack of social obligation/ need to comply as opposed to not knowing it was appropriate to do so • Sensory Processing Issues- May be overlooked or underestimated as it can be hard to distinguish between behaviours that are driven by sensory factors and those that are primarily acts of demand avoidance • .. one thing I’ve found extremely helpful when I’m in a smelly place, such as a hospital or airport, and that’s to carry with me a small scented candle that I don’t light but I do sniff it. It helps block out the nasty smells and helps to focus my thoughts a bit more so I’m able to stay in control. It’s not only useful for smelly situations but also for anywhere where my anxieties are up and I need to stay in control and be “normal”…

35. Try to view the behaviours as a defensive strategy that is borne out of deep anxiety about the demands that they fear will be made of them and a need to control their environment to prevent this. It is important to remember that these children do not choose to behave in these ways. It is their inability to cope with what they perceive as the stress of everyday demands. REMEMBER DEMAND CAN BE A THOUGHT OR A ROUTINE

36. Anxieties Even at the ripe old age of 32 I still don’t think I have that good a control of the anxiety.

37. Comparing PDA children with Asperger’s/ Autism PDA Children are less likely : To have caused anxiety before 18 months To show stereotyped mannerisms To have shown echolalia To have problems with pragmatics ( how they use language ) To show compulsive adherence to routines

38. PDA children are more likely : To resist demands obsessively (100% ) To be socially manipulative ( 100% by 5yrs) To have normal eye contact To show excessive liability of mood (0 - 60 ,60-0 ) To show social mimicry and role play

39. How does PDA differ from other • Autistic Spectrum Disorders? • Individual with PDAIndividuals with ASD • Have better eye contact than individuals May find appropriate eye contact difficult • with ASC • May ’learn to socialise’ or are comfortable Can be anti-social and unemotional • socialising in small familiar groups • Likes spontaneity and dislikes routine Likes routine, structure. Finds spontaneity hard • May not respond well to rewards/rigid Usually responds well to rewards and sanctions • behaviour management plans • Are imaginative Lacks empathy and imagination • Shows empathy • Have better conversation skills than those Finds reciprocal conversation difficult • with ASC • 50% male 50% female Are 75% more likely to be male • Pathological avoids demands Do not ‘pathologically ‘ avoid demands

40. As an adult: I’ve become good at hiding my PDA that I think people often forget that I have it and then when I do act strangely or say something that offends them then they act surprised or get mad at me. I’m not saying that I deserve special treatment or anything but it would be nice if people just tried to remember that I am different , that I don’t see things the same way as they do , that I might misinterpret things that they say and that when I mess up that they remember that I have PDA. Even though I was diagnosed at age 12.5 I wasn’t really aware of PDA properly until I was about 16. It wasn’t until I was messing about on Google and typed it in and was pleasantly surprised at just how much information there was out there!

41. ….I wouldn’t say that my life is perfect but it’s a far cry from the days when I hated myself and wanted to die. I’m in a place now where I’m able to see my PDA traits and behaviours and I’m able to self-regulate and try to modify or reduce the negative effects of them. I’ve all but eliminated my violent outbursts by reducing my generalised anxiety- I’ve achieved this by reducing the day-to-day demands that I, and others place on me. This has led to a massive reduction in my anxiety and in turn means that I’m now much less likely to become violent. I truly believe that self- awareness is the key with PDA. I live happily with my partner of 11 years. I wouldn’t change a thing about my past or the journey it’s led me on, after all, it’s made me who I am today. PDA is what makes me me.

42. Implications for managing and teaching young people with PDA Any learning has to be child led in order for progress to be made

44. Key differences in working with young people with PDA profile

45. www.meandmypda.org “I don’t like routines to get boring but I do like to know what to expect. I like it when my day is explained so I’m prepared for any changes or choices in that day”. This I can completely relate to. Routines bore the hell out of me and do in fact hinder rather than help me. I find that something too structured actually increases my anxiety and becomes too much of a demand. Nothing in my routine is ever set in stone. Flexibility is definitely the keyword here.” No strategy works for long and unlike the other autistic children it is better if we keep changing the routine all the time with J…We found the more routine there is the worse he is.. You need to catch him unawares. We have tried using behavioural approaches with him but they have not worked . He doesn’t seem to understand rewards…do this and then you can have that…he will snatch the reward and then not do the task. He has his set agenda and he is always in control of the situation.”

46. Key characteristics that impacts on learning • The young person as a learner • A need for control • Explosive behaviour when things go wrong • May articulate threats of violence , grudges • Very poor self esteem (I’m rubbish/can’t do /don’t like) • Very poor self-regulation • Ambivalent about succeeding and enjoying an activity • Lack of permanence and transfer of acquired skills

47. Variability across times and settings • High standards – wish to be equal or better than peers • Emotionally exhausted ( due to constantly looking out for /avoiding demands) • Sociable desire for friends but sabotage • Blame/victimise others • Good at drawing out people’s attitude “ we will do this” • Try to maintain and finish each activity in a way that something is achieved. You move goal posts

48. Children with complex difficulties may: • Be working at any level of the NC including P levels • Have conditions that co-exist with one or more SEN that overlap and interlock • Show inconsistent attainment and an uneven profile • Have a combination of ‘layered needs’ e.g. mental health , social behavioural, sensory and communication • Require a personalised learning pathway that recognises the unique and possibly changing learning patterns.

49. What sort of adult is ideal? • To have certain personal qualities, not necessarily experience: • The adult has to understand that PDA is anxiety driven to be in control and to avoid other people’s expectations and to accept that however the children appear to be they have little control over their actions. • To recognise and accept that the children are generally ’not trying to get away with things’ or trying to be ‘ devious • Teaching is a transactional process • Empathy ( can’t help won’t) • Resilience (Typical strategies are often ineffective so it’s easy to feel de-skilled and discouraged)

50. Stamina - Requires constantly flexible problem solving • Calm in a crisis • Confident enforcing boundaries when necessary • Less directive and more intuitive than would be the case with typical autism • The quality of relationship is fundamental to co-operation and making progress. • A reflective team approach as will need to be innovative and creative in your approach.