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Working with Parents and Carers to Help Autism Development

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Working with Parents and Carers to Help Autism Development Health and Medicine ︱ Dr Catherine Aldred & Professor Jonathan Green Guas/Shutterstock.com PACT:Working with parents and carers to help autism development Autism is an enduring condition utism is a common Newcastle, have over 15 years developed affecting over 1% of people neurodevelopmental disorder and tested a new approach, using video- worldwide but with a lack of A affecting over 1% of children feedback techniques with parents to help evidenced therapy to reduce and young people globally. It arises early them understand and respond to the its symptoms. PACT is an in development with often profound particular communication style of their PACT helps adults to interact in different ways to more effectively improve the communication skills of children who early social communication effects on social understanding and young child with autism. The Paediatric have different communication resulting from their autism. intervention working through communication and patterns of Autism Communication Therapy (PACT) parents and carers that is the thinking and behaviour; effects that aims to help autistic children to develop first to have demonstrated long- usually endure through the lifespan. their early social communication skills. to usual care, as well as improved term improvements in autism Additionally, a quarter of people with A not-for-profit community interest PACT aims to help autistic children to develop everyday language. symptoms after therapy within autism go through their lives with company called Interaction Methods a clinical trial. This relatively low no or very little language. All this for Paediatric Autism Communication their early social communication skills. Importantly, these relative improvements intensity approach is referenced inevitably affects social skills, education, Therapy (IMPACT), has been set up to were still apparent when the children in UK national guidance confidence, and ability to find a job. deliver PACT training to professionals, with the child. This way therapists are in addition to usual care, and half usual were followed up six years after the for autism treatment and is Not only is this stressful for the individual so as to help extend implementation of able to encourage and empower parents care only (Green et al., Lancet, 2010). end of the original intervention (Pickles being disseminated through and family, but providing treatment evidence-based interventions for children and carers, allowing them to develop key Taken as a group, children who received et al., Lancet, 2016). 80% of the original professional training in the UK, and support for people with autism for with autism in the UK and internationally. skills shown to improve the child’s social PACT showed greater improvement 152 trial participants were assessed in and worldwide through the their whole life is expensive. Estimated communication outcomes. Professionals in social communication and repetitive middle childhood by researchers who IMPACT training programmme. lifetime costs, including medical costs, WHAT IS PACT? are trained to identify both the child’s restricted behaviour symptoms when did not know if a child had had the PACT education, social care, and productivity PACT aims to improve communication and the parent’s existing abilities and compared to those who had usual therapy or not. The children were still losses, are estimated at around £1-1.5 and interaction skills in children on the build on them to extend communication care alone. Significant gains in parent- autistic, but the relative improvement million per individual in the UK and autism spectrum along with patterns skills to the highest possible level. child interaction (shown in other in autism symptom severity, child social between $1·4 to $2·4 million in the USA. of restrictive and repetitive behaviour. analysis to mediate the child symptom engagement, meaningful communication An important feature of this method is In practice, the therapy consists of change) were seen at six months. initiations, and reduced restricted Ideally, children diagnosed at an early the way it links the familiarity and skills twelve 1.5 hour fortnightly sessions Researcher-rated language skills was repetitive and stereotyped behaviours was age would benefit from immediate and of adults who know the child best – their over six months, with optional monthly an area that did not improve. Parents sustained. This is a striking result, since in effective support to develop their social parents or carers – with the specialist maintenance sessions over a further reported fewer difficulties in all the core autism often the effects of intervention are communication and development. There knowledge of therapists. six months. In comparison with other symptoms associated with autism: social found to ‘wash out’ over time. is some evidence to show short-term treatments that may require up to 30 interaction, social communication, Alena Ozerova/Shutterstock.com benefits from a range of interventions, The process involves recording sessions hours per week, PACT is therefore repetitive behaviours and restricted This trial was selected by the UK National including parent-child engagement, between parents or carers playing or relatively low intensity and may be interests in the PACT group, compared Institute for Health Research (NIHR) symbolic play and social imitation. interacting with their child. They then feasible for working parents. Between However, effective early treatments that watch the videos and, with the help of sessions, parents are asked to practice alter the long-term course of the disorder the therapist, learn to recognise subtle PACT strategies for at least 30 minutes have been more difficult to demonstrate. moments of interaction with their child. daily during play or natural interactions The idea is to help parents to be able with their child. In this way, PACT is Dr Catherine Aldred, a consultant to create opportunities for communication gradually introduced into everyday speech and language and adapted interaction in their day- family life. therapist, and Professor to-day lives. As one parent reflects ‘… Jonathan Green, the video was like looking through a EVIDENCE-BASED APPROACH Professor of Child and magnifier, I could see so much more, PACT is the only intervention of this Adolescent Psychiatry now I feel I know him better, I’m more type to date to have shown sustained at the University of skilled in interacting and communicating symptom improvement in children with Manchester, in with him. You have changed our lives.’ autism over the long-term on rigorous collaboration with testing. A multi-centre randomised colleagues in A key feature of PACT is the way it uses controlled trial involved 152 autistic Manchester, video-feedback to work through parents children in Manchester, Newcastle and PACT is an early social communication intervention working through parents and carers. It is the first London and and carers, in contrast to working directly London, aged two to four years old, half treatment to have demonstrated long-term benefits in autism symptoms. receiving a 12 month PACT intervention www.researchoutreach.org www.researchoutreach.org Impact ‘Train the Trainer’ a clinical setting or in research studies. (UK/International) Registration for this stage can be done via the PACT website (www.pacttraining. Behind the Research PACT Training NHS co.uk); it involves attending a two-day 20% Pre-course (1/2 day, valid 12 months) 10 trainees 20 children group training session followed by Face-to-face (2 days) discount Post-course (2½ days over 3-12 months practice supervision in which trainees submit two case studies for assessment, Catherine Jonathan 10 cases per including the videos of the adult-child PACT Certification 100 children trainee play and feedback to the parents/carers. Aldred Green NHS 40% PACT Local Lead discount Later, to be able to teach the method E: [email protected] T: 079671 48321 W: www.pacttraining.co.uk; http://research.bmh.manchester.ac.uk/pact/about/ to others, participants may progress to W: https://www.hogrefe.co.uk/e-learning/pact-e-learning-information PACT Associate become a UK PACT lead or international PACT, 2019 trainer. Progress to this can come from References successfully completing at least five Research Objectives clinical cases, plus co-training a PACT Pre-school PACT has been rigorously Professional training and service implementation of PACT Aldred C, Green J, Adams C. (2004). A new social tested as to its sustained benefits on two-day live group course and co-rating therapy, to help address the gap in evidenced-based early communication intervention for children with autism: two post-course videos. To find out more intervention for children with autism, both in the UK and pilot randomised controlled treatment study suggesting autism symptoms into middle childhood. about PACT training, please visit https:// internationally. effectiveness. J Child Psychol Psychiatry. 45(8):1420-30. pacttraining.co.uk/. https://doi.org/10.1111/j.1469-7610.2004.00338.x as a ‘Signal Study’ for its “high quality and feedback from parents, carers Green J, Charman T, McConachie H, Aldred C, Slonims V, design and relevance to UK decision and professionals. GLOBAL REACH Detail Howlin P, et al. (2010). Parent-mediated communication- makers” (doi: 10.3310/signal-000381). The evidence for PACT is named in focused treatment in children with autism (PACT): a PACT was recently added to the PACT training is offered for healthcare and national guidance for autism treatment Bio randomised controlled trial. The Lancet. 375(9732):2152-2160. recommended curriculum for the Children other professionals who have experience in UK and Netherlands. PACT research Directors of IMPACT are Dr Catherine Aldred, a Speech and https://doi.org/10.1016/S0140-6736(10)60587-9. Language Therapist who initiated the PACT approach, and and Young People’s Improving Access of working with families of children with studies in other countries are ongoing. Professor Jonathan Green, a Child Psychiatrist, based at the Pickles A, et al. (2016). Parent-mediated social communication to Psychological Treatment (IAPT) autism.
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