Flourishing Futures: Strength’s Based Autism Development Parent Workshops

1. Flourishing Futures: Strength’s Based Autism Development Parent Workshops Ruth Howard PhD Student, Bucks New University Research: Autism: Enhancing Wellbeing Using Positive Psychology Approaches. Supervisors: Dr Piers Worth, Dr Matthew Smith, Professor Colin Martin

2. Background & Influencers • Poor outcomes reported, high level of mental health problems & high economic cost of £32billion per year • Develop a programme for parents to enhance outcomes and wellbeing for autistic children • Many factors to take into consideration, including austerity, focus group suggestions, Autistic Development theory • Aim to teach principles of PP for parents to bring their own ideas. Not prescriptive • Cover some difficult issues with parents; parental stress, limiting beliefs and expectations may affect outcomes • Employ a high degree of respect and care for the families and children.

3. Autistic Development Theory Interests & Savant Abilities (Mottron et al, 2009) Provides Positive Emotions & Motivation to engage in special interest. Flow Autistic Presentation Social & Communication Delays Restricted, Repetitive Behaviours Distress & Stress Fight or Flight / Tend or Befriend • Lead To: • Behaviours that challenge • Stimming & Self-Soothing Behaviours • Wigham et al (2015), Jones et al (2016) • Chronic: Potential for Toxic Stress • (Shonkoff et al, 2012) Lead To: Anxiety (Pugliese et al, 2013) Intolerance of Uncertainty Boulter et al., (2014) Rumination (overthinking) Hare et al (2015) Fear of Failure Dana et al (2010) Individual Coping Strategies: Learning from experience and adult response (adaptive behaviours) Insistence on Sameness Gotham et al., (2013), Wigham et al (2015) Avoidance Ozsivadjian et al (2012) Control Newson et al (2003) • Functional Skill Delay • (Kerns et al., 2015) Potential Positive and Negative External Influences: Expectations Limitations Pygmalion Effect (Rosenthal, 1973) Misunderstanding Exclusion Bullying Sensory Overload Intolerable experiences (Green & Ben-Sasson, 2010) Difficulty Performing Tasks when over-loaded. Enhanced Perceptual Processing Mottron et al (2006, 2009) Co-morbid Mental Health Difficulties Development: Social-emotional, communication & attention delays and differences. Thorup et al (2016) Male/Female differences (Lavelli et al, 2013) Parents Stress (Osborne, 2007) Anxiety (Connor, 2013), Over-responsive (overly involved) (Drahota, 2010) Disrupted Interactions Ruth Howard 2019

4. Workshop Aims for Parents – in no particular order! • Recognition and support of parents feelings about diagnosis • Shift thinking from ‘bereavement’ to journey through change • Decrease stress and uncertainty about the future • Increase hope and expectations • Feel more empowered • Increase resilience & bounceability • Understand ADT • Skills and competence to support child’s development • Focus parenting on developing child’s strengths • Draw concepts together to generate a strengths based development plan

5. Shift Concept of Bereavement to a Process of Change “This has been me for the last couple of years!” EG03

6. Reaching Potential & Flourishing Apply the Pareto Principle! Slowly Breath Out Slowly Breath In Managing Today Teaching, strategies to manage stress, anxiety, sensory overload. ABC Model to develop optimistic thinking and decrease rumination which can lead to anxiety and other problems. Goal Setting Identifying, planning and doing. Small steps create a sense of achievement and should deepen motivation. Help child understand how life skills link to reaching aspirations. High expectations for child’s ability to develop. Positive psychology to buffer against anxiety and other mental health problems and build resilience. Strength based parenting to use interests and strengths to create a flourishing life Hold for Two Parents may model for children to mirror Normal Overfed Starving AWESOME Model for goal setting Adversity Beliefs Consequences Dispute Energise 80/20 Rule Good Bad Good Stuff Rubbish Stuff 3 2 1 Rule Reward charts Stickers Premise: we may expect the child to have developed strategies to limit uncertainty, intolerable experiences, and other fears. Expect the child to be able to learn new skills through concrete experiences and explicit teaching Goals Process Praise Intrinsic motivation Instant gratification rewards Plutchik Emotion Wheel (2001)

7. Applied Positive Psychology PERMA How to generate in child’s life

8. Identifying & Expanding StrengthsProcess praise: learning that failure is an option! Broaden & Build: 3-2-1

9. Gratitude: Thankful dinnersLettersThree good thingsGratitude jarGratitude treeEngagement Doesn’t really need visiting! Positive RelationshipsSocial storiesIdeas for promoting positive relationshipsActs of kindness MeaningGroup ideasAccomplishmentUsing special interests

10. Evaluation • Evaluation group & waiting list controls • Recruitment challenging • Drop outs before commencement • No drop outs after workshops began • Next phase underway • Reduced from 3 days to 2 days

11. Measures Parents: Stress measures Scale of positive and negative experience Trait hope scale Flourishing scale Child: Spence children’s anxiety scale Autism treatment evaluation checklist Currently gathering data

12. Researcher ExperiencesNeed to be flexible and pragmatic Very difficult recruiting participantsCare and consideration around ‘difficult’ issuesParticipants appeared to need a week to ‘sit’ with ADTParticipants with younger children appear more readily accepting of strategies that those of older.

13. Feedback after 6 weeks EG03 Child Age 8yrs “It opened my eyes to another way of helping, he will get there, just maybe later. I look more positively at the diagnosis and us as a family. Before I was obsessed with the world around me, of other people’s views, I have closed the negativity I projected. Now we are surrounded with people we love, positive. I am not people pleasing anymore.” [impact?]“Only at home and not at school so not as much impact on him as I had hoped. The impact on us, we are calmer, more positive and that is having a better effect on R. He still has his moments but helping him to move on is helping his self-esteem.” “It was the 80/20%. He can do this 80%, now a bubble of support of things he is good at and capable of. It was put into my head by professionals he can’t do that, but they are wrong.”

14. Feedback EG03 “The old theories made me think there would be no quality of life. ADT says you have ASD, but you can do it and the family can do it.” “When I came from university [autism course] they teach you it’s gospel truth. They are more able. No theory of mind, that he doesn’t understand, we show him now, empower him to understand and it works. It may be true of adults [ToM] who have not had the scaffolding.” “I’ve got fight in my belly now. I am very empowered!”

15. Feedback EG12 Child Age 7yrs “I can see it works, slow progress with N as he doesn’t like change. After school he would focus on bad things that was his focus, had to dig really deep to find the good, he would say 5or6 bad things, now it’s just one or two. Yesterday the worst thing was that his sausage was late at lunch time, so he is getting better as there are not as many bad things.” “Workshops are brilliant! Everyone should do it. It makes you think, it doesn’t contradict others, but it makes sense of the little things that we pick up on, from when he was younger that people were saying were nothing to worry about.” “It has massively helped me to understand him, he’s not having us on, he is struggling with things. I understand him more.” “It has helped me know how to deal with things, also helped me speak to school about his needs. Now school are listening to suggestions and putting in place, they are doing more.”

16. Feedback EG12 “It gave me more confidence, I knew more after doing it. I feel more confident telling people what my child needs. I always thought that I knew and researched but it’s my confidence, I am even looking forward to his EHCP meeting. More confidence to put him 1st and that I can do it.” “321 [activity] is good. It helps him to work out the day. In bed he’s calmer and not stressed without being able to express what was wrong cos we have talked about the good and bad throughout the day.” “We have started using different words, bigger words, and for emotions, school has noticed and they have said it has helped with his reading, I don’t know why. I mentioned bigger words to the deputy head and she said that I would be amazed. School have said, this has proved it. N is flying now.”

17. Feedback EG12 “Me and my husband are surprised how much progress he has made, his reading has surprised us. We have always known he needs to learn to read. Just seems the last 2-3 weeks reading is phenomenal. Don’t know where it’s coming from, is it because we are using bigger words with him?” “There are not as many outbursts ‘cos we are talking about things. It has had an impact on the whole family, his brother doesn’t lose his temper with him so much. I am calmer and definitely, the belonging thing. We have started going to church, and he has spoken there. He loves it.

18. Feedback EG12one final comment… “I hope he will go on to do whatever he wants to do.”

19. Conclusions & Next Steps • Parents empowered/confident • Variety of strategies parents placing high value on different strategies (person activity fit) • Decreased parental stress – reporting calm is impacting on children • Parents report children are developing • Early findings are promising of providing a cost effective intervention to enhance development & family wellbeing

20. Thank you 