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

自闭症是一种严重和持续的发育障碍，始于儿童时期，通常贯穿一生，影响社区中约1%的儿童。自闭症从两岁开始被诊断出来。父母发现适应自闭症的诊断和管理他们的孩子非常具有挑战性；健康、社会关怀和专业教育资源的使用在学前和学龄早期逐步增加，在英国，支持患有自闭症谱系障碍的儿童的费用估计为每年27亿英镑。然而，自闭症对家庭的额外影响可能远高于此，因为父母的强烈参与和照顾其他孩子和维持就业的资源延伸。家庭破裂率高于平均水平。早期干预被认为是最有益的，越来越多的证据表明，适当的建议和培训方案可以改善儿童的沟通和行为。然而，对于早期干预对自闭症儿童的发展和健康，以及对家庭压力和家庭功能的长期影响，如果有的话，一直缺乏研究。我们进行了迄今为止最大的早期干预试验，对父母进行治疗，帮助他们更好地与自闭症儿童沟通。这项研究（Green et al . 2010）表明，参与干预的父母成功地调整了他们与孩子互动的方式，反过来，孩子与父母的交流也更多。尽管在亲子交流方面有了这些改善，但接受干预的孩子在与家庭以外的成年人互动方面并没有比那些接受常规服务的孩子改善得多，也就是说，沟通的改善似乎并没有普遍化。然而，我们最初的随访只是在13个月的干预结束时进行的——对于自闭症儿童的发展来说，这是很短的时间。因此，在目前的研究中，我们希望对同样的孩子进行3年的随访，看看我们的早期干预是如何影响长期发展结果的。我们将在儿童的早期学龄阶段进行后续研究，这是自闭症儿童发展的关键时期，许多与社会融合相关的困难，以及焦虑等心理健康问题都会出现。我们会观察孩子的语言和交流，自闭症的其他症状和社会融合。我们也会看一下父母对孩子的功能和家庭生活的看法。我们感兴趣的是，参加干预的父母是否比没有参加干预的父母更自信、更乐观。本研究将帮助我们第一次了解早期干预对儿童后期沟通的影响，早期学龄期自闭症的表现和家庭生活，学校适应和家庭对服务的需求。这将有助于阐明发展是如何进入儿童中期的，并指出在学龄前或以后需要的任何必要的额外干预，以最大限度地提高自闭症的最佳发展结果。研究结果将潜在地影响早期干预和学前和早期教育干预的组织方式，最好是将医疗、社会关怀和教育结合起来，以及在孩子长大后支持家庭的方法。格林J.查曼，T .，。McConachie， H. et al（2010）。学龄前自闭症儿童父母介导的以沟通为中心的治疗一项随机对照试验。《柳叶刀》，375(9732),2152-2160。

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.