SSAT Research Project. Outline of Presentation. Children with complex difficulties may:

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1 Education and support needs of children with Pathological Demand Avoidance Ruth Fidler Education Consultant Complex autism, interactive approaches and emotional wellbeing Phil Christie Consultant Child Psychologist As with any child educational provision is about attempting to match the curriculum, approach and support that is required to the child s individual needs PDA is a dimensional disorder that impacts differentially on individual children and interacts with other factors and circumstances Outline of Presentation Background and Context Whole School Issues Child as Learner Adult as Teacher Collaborative Approach to Learning Principles Strategies SSAT Research Project Reports a massive increase in the number of children with disabilities The number of families with a disabled child has risen from 700,000 to 950,000 since 2004 Thank you to all involved in Fran s assessment we are already experiencing a better home life with Fran. It seems by simply having a better understanding of her difficulties there is a tangible drop in tension surrounding our interactions Children with complex difficulties may: Be working at any level of curriculum attainment Have conditions that co-exist with one or more SEN that overlap and interlock Show inconsistent achievement and an uneven profile

2 cont Have a combination of layered needs eg. mental health, social behavioural, sensory and communication Require personalised learning pathways that recognise their unique and possibly changing learning patterns Exclusions 43% of parents reported that their child with autism had been formally excluded within the previous 12 months 55% of parents surveyed reported that their child with autism had experienced illegal exclusion Disobedience or disability? The exclusion of children with autism from Education. The Constructive Campaigning Parent Support Project (2008) A new group of learners includes pupils who do not simply require a differentiated curriculum but who at times require further adaptation to teaching if they are to make progress From think-piece series for special education. Carpenter 2010 complexld.ssatrust.org.uk Whole School Issues Children with PDA may be provided for in the full range of education placements available: Mainstream Area Special Schools BESD Specialist ASD Individual packages To be successful, an educational setting will need to meet the particular needs of the individual child according to their profile Research into Educational Experiences of Children with PDA (2013) Emma Gore Langton UCL 20% had experienced four or more fixed term exclusions 25% had experienced at least one permanent exclusion 51% had experienced at least one move due to their SEN Characteristics of school Genuine commitment to inclusion of the child Strong support from school leadership team Positive, creative and flexible outlook Commitment to working with family in supportive and open partnership (sample of 48 children)

3 Key issues for any educational placement Enabling access to learning (both in terms of the curriculum and socially) Managing the child s anxiety and subsequent behaviour Supporting positive relationships with their peers Maintaining an effective team of adults who can support the child and their family The child as a learner A drive to be in control May use explosive or shutdown behaviour when things go wrong Slipping under the radar to avoid expectations/demands AET Good Practice Report 2011 I suppose my message to schools is, you're there for the children, they're not there for you. And therefore, actually you do what you can to adapt to the children you ve got, and not expect the children to become the children you want them to be. The child as a learner May articulate threats of violence, damage or harm Very poor self esteem An expressed desire to be on a par with or better than others Sensitive to real and perceived demands Meeting the educational needs of pupils with PDA Understand the Recognise experience of + the perspective the child of the adult The child as a learner Ambivalent about succeeding and enjoying an activity Lack of permanence and transfer of learning Variability across times and settings Develop strategies which integrate

4 The child as a learner Very poor emotional regulation Desire to have friendships (though may inadvertently sabotage relationships) Difficulties with social repair The adult as teacher Confrontation should be avoided where possible. Expectations should be disguised and reduced to a minimum Ground rules need to be reduced as far possible but then maintained The adult as a teacher Teaching is a transactional process Pupils may be confusing or frustrating in their variability Understand that demand avoidance is anxiety driven There are days when it s not as simple as can t or won t because it s actually that the child can t help won t Child as a learner Adult as a teacher The adult as teacher The quality of relationships is fundamental to co-operation and to making progress Publications Highly individualised style Less directive and more intuitive than would be the case with typical autism

5 Principles of Collaborative Approaches to Learning Observe and listen Work together towards negotiated solutions Personalise learning experiences Modify teaching style: be flexible, indirect and adjust expectations Minimise anxiety to maximise learning opportunities Monitor, reflect and review Foster emotional resilience and independence proactively Recognise the needs of supporting adults How important is it that this pupil? How important is it to Priority Rationale, strategies, comments Change into PE kit Low Parents will try to send wearing trainers on PE days/ indoor PE optional barefoot Sit on a chair in class Medium Alternatives are beanbag/stool/standing/ physio ball/office chair. Matters more to be part of the group Not hurt self, others or seriously damage property Attend school every day available Record work in own handwriting High High Low Non negotiable and will always need intervention Flexibility used re uniform, delayed arrival time and amended timetable. The aim is to achieve sustained attendance and to build relationships Can dictate work, use a scribe, photograph it or use digital media. Variety of motivating pens available but no pressure to use them. Key strategies of Collaborative Approaches to Learning Choosing priorities picking your battles Being indirect using an invitational approach Depersonalising requests and behaviour Adjusting expectations Using novelty and variety Using visual clarification to underpin negotiations Building positive relationships Using drama and role play Allowing more processing time Minimising anxiety Promoting self awareness and emotional understanding Indirect invitations to collaborate : I wish I knew someone who could help me with Oh look at that, now it s time to do. Do you want to do A,B or C first? Who s left this here? You choose, which job should I do in this task/experiment? That would be a great idea for another day It would really be helpful if you can find a way to Choosing priorities Which are priorities for the child? For the group? For the parents? For right now? For the near future? Who needs to be involved in discussions identifying priorities? Socially complex language can sometimes be effective as a deliberate strategy If a direct request is part of a normal conversation, it s easier for me to co-operate with. If it feels a gentle question mixed in with a friendly chat it is much easier than having an instruction.

6 Depersonalising the demand United nations rights of the child Health and safety manual Government policies Novelty and variety Hey look what I ve found at the back of the cupboard! Mr Dawlish is hoping someone can organise the younger pupils moving the outdoor PE equipment to the new shed this afternoon Are you interested in being the first pupil to try out this new game and let Mrs Atkins know what you think of it? Giving indirect praise to children with PDA For some children this is not an issue and they may thrive on praise, indeed seem to need a higher degree of praise and positive acknowledgement For others, praise can be significantly uncomfortable. For these children and young people it might be helpful to praise them in a conversation with a third party but in their hearing. For me, it s the implied demand to be able to do the same thing just as well every time, which for me and others with PDA, is at times unachievable. (Julia) Missions, projects and challenges Adjusting expectations Sometimes the goalposts need moving to help everyone reach a satisfactory conclusion The end point does not need to be the same as the starting point Build positive relationships Donny shows clear preferences for certain staff members and responds well to these people. It has been crucial to build on these positive relationships as they are fundamental to helping him co-operate, negotiate, stay calm and learn. It has been important to try to widen the number of adults he is comfortable with so that the team supporting him can achieve a balance of making him feel secure whilst sharing the load of working so intensely with him. It is worth noting that common features these members of staff share are a creative, imaginative way of presenting tasks, a nondirective approach and an ability to move on from any difficult incidents without judgment.

7 Visual clarification Visual clarification methods needs adapting to offer choice in an indirect way Ned PDA is irritating because most of the time I want to do stuff but something gives me the urge not to. If I say I m not going to do it then I CAN T do it because I ve said I won t and I can t back down. My new technique now I m older is to think try not to say anything when I m asked to do something. If I can stop myself saying I won t do it then I can leave my options open. That means I can get used to the idea of co-operating and I MIGHT be able to do it Drama and roleplay I am currently enjoying a degree of success by communicating with Katie via Lamby, her stuffed toy. She has recently acquired a stuffed lion called Luke. Now everything I try to do with Katie eg. Brush her hair, I also have to do with Luke the Lion. She wants him to have a lead and to be treated like a real pet she wants a real dog basket for him not a toy one. Minimise anxiety Avoid raising anxiety may need to think about free time, PE, queuing for lunch, assembly Any strategies that reduce anxiety may include exercise, music, art activities, makeup/nails/hair, hobbies (ie activities that are not usually on school timetables) Allow more processing time For the pupil: Gives opportunity to process all incoming information as well as to accept co-operation For the adult: Gives opportunity for reflection or collaboration if you feel you are being out-manouvered Provide regulating activities that are not linked to earning rewards

8 Provide a forum for promoting emotional wellbeing Additional considerations: Think about how many simultaneously difficult things are being asked of a child Think about sensory sensitivities If some strategies that were working become ineffective shelve them and re-use them again in the future Government response to the review of CAMHS (2010) Schools play a pivotal role in promotion, prevention and early detection of emotional well-being and mental health issues, bringing in other professionals as appropriate staff in all services (should) recognise the contribution they can make to emotional well-being, social skills development and mental health Factors in collaborating with families Working with professionals who understand the character of a family Developing a healthy balance of control and choice Getting a helpful and appropriate diagnosis Getting support to understand the diagnosis and how it applies to their child s profile Accessing training and support services Helping others in the family understand how the diagnosis makes sense of their child Working with school professionals to help their child learn and attend school Promote social & emotional understanding & self awareness Understanding emotions in themselves Understanding emotions in others Recognising emotional consequences in themselves and in others Understanding and predicting social consequences Understanding and expressing choices and preferences Problem solving skills Developing self awareness Promoting self regulation Risk taking Key points Understand PDA as a profile within the autism spectrum Understand this is an anxiety driven need to control and avoid everyday demands Promote emotional wellbeing and self awareness Recognise the impact of perceived demands as well as actual demands Prioritise issues to address and collaborate regarding strategies and rationale Use flexible, creative and indirect approaches Allow more processing time Build and maintain positive social relationships Support the adults who support the children