Flexible scheduling to prevent the development of disabling resistance to change

一些神经发育障碍，包括自闭症谱系障碍、脆性X染色体和普瑞德-威利综合征，都与应对常规或期望变化的强烈困难有关（从此称为“抗拒改变”）。这种对改变的抗拒是这些疾病的一个高度致残的方面，因为它通常会引发行为问题，对患有这些疾病的个人及其家庭的生活产生重大的负面影响。来自实验研究的证据表明，这种对改变的抵制与认知灵活性（任务切换）的限制有关，这是一种根据不断变化的需求以不同方式思考情况的能力。此外，对认知灵活性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，即那些包含灵活性的环境，可能会促进认知灵活性的发展。最后，我们自己对PWS患者的研究表明，接触更严格的日常生活可能对个人随后应对变化的能力有害，尤其是当这种接触发生在上学早期时。综上所述，这些证据表明，在儿童上学早期（此时认知灵活性正在迅速发展）所接触的环境中增加灵活性的干预策略，可能有效地预防与抗拒变化有关的残疾的发展。目前的项目旨在开发这样一种干预策略，利用当前的最佳实践，提倡使用视觉时间表来构建环境（以避免可能导致当代行为问题的变化）。因此，还将讨论上述证据所暗示的最佳实践的固有局限性。至关重要的是，本项目旨在与利益相关者合作，制定干预策略和相关的实施监测工具，以最大限度地提高可接受性。实施干预和监测的可行性；增加儿童日常活动灵活性的干预能力；并将对今后试点工作中评估干预措施所需措施的可行性进行评估。目前的工作代表了创造一种新的干预策略的重要一步，这种策略可以防止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体有关。重要的是，对变革的抗拒与许多家庭特别高的负面影响（大多数致残）有关，但在现有的预防方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以防止对变革的抵制为目标的战略。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幼儿时期增加日常灵活性的程度-由目前开发的灵活的视觉调度护理人员主导的干预-可以通过增加认知灵活性来预防与抗拒变化相关的残疾的发展。由于在目前的项目中，干预措施将协同开发，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，旨在使该干预措施能够在大范围内用于减少残疾。

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.