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