Flexible scheduling to prevent the development of disabling resistance to change

几种神经发育障碍，包括自闭症谱系障碍、脆性X综合征和Prader-Willi综合征，都与处理常规或期望的改变(以下称为“改变阻力”)的巨大困难有关。这种对改变的抗拒代表了这些障碍的一个高度致残的方面，因为它通常会导致行为问题，对患有障碍的个人及其家人的生活产生重大的负面影响。来自实验研究的证据表明，这种对改变的抗拒与认知灵活性(任务切换)的限制有关，认知灵活性是根据不断变化的需求以不同的方式思考情况的能力。此外，关于认知灵活性的典型发展的研究表明，从理论和经验的角度来看，接触具有特定特征的环境，即包括灵活性的环境，可能会促进这一点。最后，我们自己对PWS患者的研究表明，暴露在更僵化的例行公事中可能会损害个人随后应对变化的能力，特别是当这种暴露发生在学龄早期时。综合来看，这一证据表明，在儿童在学龄期(认知灵活性迅速发展)所暴露的环境中增加灵活性的干预策略，可能有效地防止与抵抗变化有关的残疾的发展。本项目旨在利用当前的最佳实践来开发这样一种干预策略，该最佳实践提倡使用可视化时间表来构建环境(以避免可能导致当代行为问题的变化)。因此，还将解决上述证据所暗示的最佳做法的内在局限性。关键是，本项目的目的是与利益攸关方合作，制定干预战略和相关的执行监测工具，以最大限度地提高可接受性。此外，还将评估实施干预和监测的可行性；干预增加儿童日常生活灵活性的能力；以及在今后的试点工作中评估干预所需措施的可行性。目前的工作是制定新的干预战略的重要一步，该战略可以预防与抗拒变化有关的残疾的发展，这与患有几种神经发育障碍的个人有关。重要的是，对变革的抵制与对许多家庭的特别高的负面影响(大多数使人丧失能力)有关，但在现有的预防办法中没有得到很好的解决。因此，目前的战略将是第一个系统地针对抵抗变化的预防。这项工作将使未来的试点随机对照研究成为可能。未来计划的试点研究将评估在儿童早期，在目前开发的灵活视觉计划照顾者领导的干预下，在多大程度上接触到日常生活中增加的灵活性，可以通过提高认知灵活性来防止与抵抗变化有关的残疾的发展。由于在本项目中，将合作开发干预措施，以最大限度地提高可接受性；如果试点研究的结果表明其有效性，则可以立即进行大规模评估，旨在使干预措施能够用于广泛减少残疾。

Several neurodevelopmental disorders, including autism spectrum disorder, fragile X and Prader-Willi syndrome are associated with strong difficulties in dealing with changes to routines or expectations ("resistance to change" henceforth). Such resistance to change represents a highly disabling aspect of these disorders because it commonly precipitates behaviour problems that have a major negative impact on the lives of individuals with the disorders and their families.Evidence from experimental studies shows that this resistance to change is associated with limitations in cognitive flexibility (task switching), which is the ability to think about situations differently depending on changing demands. Furthermore, work on the typical development of cognitive flexibility suggests that - from both theoretical and empirical perspectives - this may be facilitated by exposure to environments with specific characteristics, namely those comprising flexiblility. Finally, our own work with individuals with PWS suggests that exposure to more rigid routines can be detrimental to an individual's subsequent ability to deal with changes, perhaps particularly when this exposure occurs during early school years.Taken together, this evidence suggests that an intervention strategy which increases flexibility in the environments that children are exposed to during early school years (when cognitive flexibility is developing rapidly), may be effective in preventing the development of disability linked to resistance to change. The present project aims to develop such an intervention strategy capitalising on current best practice, which advocates use of visual schedules to structure environments (to avoid changes that may precipitate contemporary behaviour problems). Thus, the inherent limitations of best practice implied by the evidence outlined above, will also be addressed.Critically, the present project aims to develop the intervention strategy and an associated implementation monitoring tool, collaboratively with stakeholders to maximise acceptability. Furthermore, the feasibility of implementing the intervention and monitoring; the capacity of the intervention to increase flexibility in children's routines; and the feasibility of the measures needed to evaluate the intervention in future pilot work will be assessed.The present work represents an essential step in the creation of a new intervention strategy that can prevent the development of disability linked to resistance to change, which is relevant for individuals with several neurodevelopmental disorders. Importantly, resistance to change is associated with particularly high negative impact (most disabling) for many families but is not well addressed in existing prevention approaches. Thus, the present strategy would be the first to systematically target prevention of resistance to change.The work will enable a future pilot randomised controlled study. The future planned pilot study will evaluate how far exposure to increased flexibility in routines during early childhood - mediated by the presently developed flexible visual scheduling caregiver led intervention - can prevent the development of disability linked to resistance to change, via increases in cognitive flexibility. Since in the present project, the intervention will be developed collaboratively to maximise acceptability; if the outcome of the pilot study suggests its efficacy, this can be immediately followed by a large evaluation, designed to enable the intervention to be used to decrease disability on a wide scale.