The Incredible Years Autistic Spectrum and Language Delay programme Margiad Elen Williams

Background Estimated UK prevalence 1.7% (Russell et al., 2014) Associated behavioural challenges are common (National Autistic Society, 2015) They cause more distress than core symptoms (Hastings et al., 2005)

Parent programmes Recommended by National Institute for Health and Care Excellence (NICE, 2013) Group-based programmes effective for range of outcomes (e.g. Whittingham et al., 2015) Provide social support (Dababnah & Parish, 2014)

Incredible Years (IY) Basic Parent programme Evidence-based, NICE-recommended intervention (e.g. Hutchings et al., 2007) Delivered with adaptations for parents of children with ASD (Dababnah & Parish, 2014, 2015) Decreased parental stress High acceptability and satisfaction with content

IY Autistic Spectrum & Language Delays programme New addition to IY suite Uses same core delivery components Targets parent-child relationship and broad developmental outcomes e.g. communication, social skills, other adaptive skills, and behaviour problems

Initial pilot study Nine parents (8 mothers, 1 father) Children had been, or being assessed, for ASD by local services

Measures Strengths and Difficulties Questionnaire (SDQ) Arnold-O’Leary Parenting Scale (PS) DPICS observation Satisfaction

Results High rates of attendance High levels of satisfaction Mean (SD) Programme overall 5.74 (0.37) Teaching format 6.14 (0.35) Parenting techniques 6.27 (0.39) Group leader 6.71 (0.19) Parent group 6.84 (0.18)

Results Significant change in SDQ Interpretation This was a significant improvement p=.020 but the cut off for very high level of pro-social difficulties is a score of 4 or less so these children were, as expected, still demonstrating a very high level of prosocial difficulties Interpretation –This was a significant improvement (p= .035) but a score 4 is high and 5+ is very high so these children were, as expected, still experiencing challenges

Parental feedback “Meeting the other parents was the number one thing. All the tips have been brilliant. Knowing what to focus on especially using positive suggestions rather than commands.” “Has shown me how to change my behaviour which in turn has an effect on my child’s behaviour.”

Dissemination Results published in Good Autism Practice (Hutchings et al., 2016) DVD about parents’ experiences of the IY Autism programme

Parenting for Autism, Language, And Communication Evaluation Study (Williams et al., 2017) Pilot randomised controlled trial Explore feasibility and initial effectiveness 4 centres (NW Wales, Central North Wales, Flintshire & Newtown, Powys)

Measures Child behaviour (CBCL) Parental mental health (PSI, BDI) Parenting (PS) Child adaptive skills (VABS) Social communication (SCQ) Sibling behaviour (SDQ) Partner relationship (Family APGAR) Parent-child observation (DPICS) Cost data

Data collection Baseline, 6-month follow-up for all families Additional 12-month and 18-month follow-up for intervention families 10-minute parent-child observation videotaped

Participants - Children Demographics Whole sample (N=58) Child age, months: M (SD) 67.98 (16.14) Child gender, male: n (%) 41 (70.7) Child diagnosis, ASD: n (%) 48 (82.8) Siblings: n (%) 40 (69.0)

Participants - Parents Demographics Whole sample (N=58) Parent age, years: M (SD) 36.48 (8.52) Parent gender, female: n (%) 52 (89.7) Married/cohabiting: n (%) 48 (82.8) Large family: n (%) 14 (24.1) Unemployment: n (%) 12 (20.7) Teenage parent: n (%) 6 (10.3)

Child Behaviour Problems CBCL scales Whole sample (N=58) Internalising: n (%) 48 (82.8) Externalising: n (%) 42 (72.4) Both: n (%) 40 (69.0)

Next steps Programme delivery due to finish by Easter Finish scoring, inputting baseline data Code parent-child observations 6-month follow-up due in June

Further follow-up Jess Bibby funded by KESS and CEIT to undertake a PhD alongside the trial Explore impact on other family members Collect longer term follow-up data at 12 and 18 months for intervention families only

References Dababnah, S., & Parish, S. L. (2014). Incredible Years program tailored to parents of preschoolers with autism: Pilot results. Research on Social Work Practice. Advance online publication. doi:10.1177/1049731514558004 Dababnah, S., & Parish, S. L. (2015). Feasibility of an empirically based program for parents of preschoolers with autism spectrum disorder. Autism. Advance online publication. doi:10.1177/1362361314568900 Hastings, R. P., Kovshoff, H., Ward, N. J., Espinosa, F. D., Brown, T., & Remington, B. (2005). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Development Disorders, 35, 635-642. doi:10.1007/s10803-005-0007-8 Hutchings, J., Bywater, T., Daley, D., Gardner, F., Whitaker, C. J., Jones, K., … Edwards, R. T. (2007). Parenting intervention in Sure Start services for children at risk of developing Conduct Disorder: Pragmatic randomised controlled trial. British Medical Journal, 334, 678-684. doi:10.1136/bmj. 39126.620799.55 National Autistic Society (2015). Autism facts and history. Retrieved from http://www.autism.org.uk/aboutautism/myths-facts-and-statistics/statistics-how-many-people-have-autism-spectrum-disorders.aspx National Institute for Health Care and Excellence [NICE] (2013). The management and support of children and young people on the Autism Spectrum. Retrieved from: www.nice.org.uk/guideance/cg170 Russell, G., Rodgers, L. R., Ukoumunne, O. C., & Ford, T. (2014). Prevalence of parent-reported ASD and ADHD in the UK: findings from the Millennium Cohort Study. Journal of autism and developmental disorders, 44, 31-40. doi: 10.1007/s10803-013-1849-0 Whittingham, K., Sofronoff, K., Sheffield, J., & Sanders, M. R. (2009). Stepping stones triple P: An RCT of a parenting program with parents of a child diagnosed with an autism spectrum disorder. Journal of Abnormal Child Psychology, 37, 469-480. doi:10.1007/s10802-008-9285-x Williams, M.E., Hastings, R.P., Charles, J.M., Evans, S., & Hutchings, J. (2017). Parenting for Autism, Language, And Communication Evaluation Study (PALACES): protocol for a pilot randomised controlled trial. BMJ Open, e014524. doi:10.1136/bmjopen-2016-014524

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