Pre-school autism intervention and autism development: a longitudinal follow up of the Preschool Autism Communication Trial (PACT)

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Autism is a severe and persistent developmental disorder, starting in childhood and often extending throughout life and affecting about 1% of children in the community. Autism is diagnosed from about 2 years of age onwards. Parents find adjustment to diagnosis and the management of their child with autism very challenging; use of health, social care, and specialist education resources increases progressively through the pre-school and early school years with costs of supporting children with autistic spectrum disorders in the UK estimated at £2.7 billion per year. However, the additional impact of autism on families is probably far higher than this in terms of intense parental involvement and stretching of resources to care for other children and to sustain employment. Rates of family breakdown are higher than the average. Early intervention is thought to be most beneficial and there is increasing evidence that programmes of appropriate advice and training improve child communication and behaviour. However, there has been a lack of research into the longer term effects of early intervention, if any, on the development and wellbeing of children with autism and also on family stress and family function.We have conducted the largest early intervention trial to date of a treatment with parents to help them communicate better with their child with autism. This study (Green et al 2010) showed that, parents who took part in the intervention, were successful in adapting their style of interacting with their child, and in turn the child communicated more with the parent. In spite of these improvements in parent-child communication, children who received the intervention did not improve more than those who had the usual services in how they interacted with adults outside the family, that is the communication improvements did not seem to generalize. However our initial follow up was only at the end of the 13 month intervention - a very short time in the context of development for a child with autism. Therefore in this current study we wish to follow-up the same children about 3 years further on to see how our early intervention has affected longer term developmental outcomes. We will be doing the follow-up in the early school years which is a key time in the development of a child with autism, when many associated difficulties of social integration, and mental health problems such as anxiety, come to the fore. We will be looking at the child's language and communication, other symptoms of autism and social integration. We will also look at parent perceptions of their child's functioning and family life. We are interested in whether parents who took part in the intervention feel more confident and optimistic than those who did not. This study will be to help us understand, for the first time, the impact of early intervention on later child communication, the presentation of autism in the early school years and family life, school adjustment and family need for services. This will help clarify how development proceeds into middle childhood, and give an indication of any necessary additional intervention required either in the pre-school years or later, to maximise the best developmental outcomes in autism. The findings will potentially impact the way early intervention and intervention in the pre-school and early school years is organised, ideally with the integration of medical, social care and education, and methods of supporting families as their children grow older. Green J. Charman, T,. McConachie, H. et al (2010). Parent-Mediated Communication-Focused Treatment for preschool children with Autism (PACT); a randomised controlled trial. The Lancet, 375(9732), 2152-2160.