Development and trial of an ACT workshop for Parents of a child with ASD

1. Development and trial of an ACT workshop for Parents of a child with ASD Associate Professor Kate Sofronoff School of Psychology University of Queensland

2. Acknowledgements • Workshop developed by Dr Jeanie Sheffield, Dr Koa Whittingham and Dr Kate Sofronoff (University of Queensland) • Workshop evaluated by Melissa Smith (University of Queensland) • Randomised controlled trial conducted by Dr Celia Bird and Dr Lize Andrews (University of Queensland)

3. Why ACT for Parents of a Child with Autism • Frequently ask parents to participate in effortful programs for their child • Do not account for parent’s own distress • Many parents report that they struggle to accept the challenges faced by their child • Many parents report that they continue to be angry and/or sad about the challenges faced

4. Development of Workshop • Workshop developed based on the Blackledge and Hayes (2006) 2-day workshop for parents of children with ASD • Used a measure of Acceptance/Experiential Avoidance developed for ASD as suggested by Blackledge and Hayes (2006) • Workshop – 1 day • Delivered by 3 psychologists

6. OVERVIEW OF THE WORKSHOP • 9.00 am • Welcome and introduction to the workshop and a brief explanation that we would be doing some things that are a bit different • Introductions – therapists and participants • Stress and parenting -> battlefield metaphor • Weapons used – how workable – creative hopelessness • Values – as distinct from goals • Exercises completed and group discussion • Morning Tea 10.15 – 10.45 • The struggle – quicksand metaphor + others • Letting go of the struggle – bus metaphor • Lunch 12.45 – 1.30 • Mindfulness and acceptance • Exercises – breath, emotions, thoughts • Afternoon Tea 3.00 – 3.15 • Making a plan – acts towards values • Group discussion – acts, barriers and possible solutions • Finish 4.30

8. Sample Characteristics • Child characteristics as described by parent report on the SDQ indicated that 82.4% were placed in the abnormal range (Muris et al., 2003) • Parent distress scores indicated that 63.6% of these parents were in the range for adjustment problems • Significant correlation between difficult child behaviour and parenting distress .48 • Significant inverse correlation between parenting distress and acceptance (AAAQ) -.77 – i.e. experiential avoidance

9. Parent Adjustment-DASS Total

10. Parent Adjustment- Depression

11. Qualitative Data • Values identified were across various domains • 31% personal growth • 27% health and physical well-being • 19% friendship and social relationships • 11% family relations • These parents reported that they focused heavily on child-related activities to the exclusion of many other domains

12. Post and Follow-UP • Asked parents to identify 1-2 goals that they would like to move towards that would bring them closer to the values they had identified • Goal Achievement Scale • At 4 weeks after the workshop • 52% of the parents reported that they had moved 50% - 100% closer to achieving goals related to their stated values • At 3 months after the workshop • 85.8% reported that they had moved 50% - 100% closer to achieving goals related to their stated values

13. Aids to Change • Time management • ‘Using time more wisely’ • Acceptance • ‘Thoughts, feelings regardless of whether or not they are wanted’ • Commitment • ‘Increased motivation to move in direction of what is important’ • Personal growth • ‘changes in views about what is important’ • Family and children • ‘knowing I need to take care of myself to take best care of my children’

14. Most Helpful Strategies • Acceptance (33%) • ‘Accepting the situation not avoiding’ • Mindfulness (22%) • ‘Breathing exercise where you bring your thoughts back’ • Commitment (11%) • ‘Being aware of values and making achievable goals’ • Cognitive diffusion (11%) • ‘Thoughts come and go, no extra effort to try to stop them’

15. Most Used Strategies • Mindfulness (39%) • Using breathing to stay in the present • Emotion passing (22%) • Letting thoughts come and go • Acceptance (26%) • Accepting autism • Room for emotions (13%) • Visualising fear, making room for it as an object

16. Conclusions • Results were promising but not as good as we had expected • Qualitative results better than quantitative • Parents said they would like to do this in the context of a program for their children • So…..

18. A Randomised controlled Trial • Two ACT parent sessions prior to child and parent participation in an intervention to increase child use of appropriate affection and friendship behaviours • Same content as the workshop – 2 x 2 hour sessions • Groups randomised to intervention or wait-list • 57 parents in the trial • No significant differences found on any measure pre to post or follow-up in the RCT • Feedback from parents was very positive

19. Pooled data from total sample • Significant change pre to post • Depression Anxiety and Stress Scale – total • Depression • Anxiety • Stress • Parenting Stress Index • AAAQ

20. DASS

21. Qualitative data - rct • Very similar to that of the workshop • Most used strategies • Mindfulness (35%) Values (23%) Cognitive defusion (19.7%) • Most helpful strategies • Mindfulness (28.3%) “mindfulness breathing exercise” • Values and goals (25%) “parenting multiple kids with ASD can mean we’re always in reactive mode and can lose sight of the big picture” • Cognitive defusion (22%) “silly voice breaks the authority of negative thoughts” • Goal attainment • At post intervention – 67.8% rated between 50% and 100% - had achieved goals that moved them closer to values. Another 35% had achieved 25% of where they wanted to be with goals towards values

22. Conclusions • We have continued to include the ACT components in trials with parents of children with a disability, both ASD and other disabilities • Parents relate very positively to the content and the processes of the ACT material • Qualitative data continues to be strong • We are possibly not measuring the right outcomes to demonstrate the benefits of the ACT work in this context