Psychology, University of Amsterdam, Amsterdam, The Netherlands
Leo Kannerhuis (Youz), Amsterdam, The Netherlands.
BMJ Open. 2021 Mar 31;11(3):e040943. doi: 10.1136/bmjopen-2020-040943.
Autism spectrum conditions (ASC) develop early in life and are thought to last a lifetime. However, ASC research has two major knowledge gaps that hinder progression in understanding the concept of ASC and in providing proper support for autistic adults: (1) the majority of knowledge about ASC mainly stems from childhood studies so little is known about older autistic adults and (2) while it is broadly recognised that ASC is a heterogeneous condition, we do not yet understand the differences in trajectories leading to their future outcome. We aim to fill both knowledge gaps.
A multistage overlapping cohort design assessing (cognitive) ageing in ASC is designed to obtain an accelerated longitudinal data set. Data, including a multitude of questionnaires, diagnostics and cognitive tests, are collected over four waves within a 10-year time frame. This will provide information regarding actual changes in quality of life, co-occurring health conditions and cognition as well as the possibility to test external validity and temporal stability in newly formed behavioural subtypes. Participants consist of three groups of adults aged 20-90 years: (1) with a clinical diagnosis of ASC, (2) with a clinical diagnosis of attention deficit hyperactivity disorder (ADHD) but no ASC, (3) no ASC/ADHD (ie, comparison group). The sample size differs between waves and instruments. Detailed analysis plans will be preregistered in AsPredicted or at the Open Science Framework.
Ethical approval for this study was obtained from the ethical review board of the Department of Psychology of the University of Amsterdam (wave 1 2011-PN-1952 and 2013-PN-2668, wave 2 2015-BC-4270, waves 3 and 4 2018-BC-9285). In line with the funding policies of the grant organisation funding this study, future papers will be published open access.
自闭症谱系障碍（ASC）在生命早期发展，被认为会持续一生。然而，ASC 研究存在两个主要的知识空白，这阻碍了对 ASC 概念的理解和为成年自闭症患者提供适当支持的进展：（1）大多数关于 ASC 的知识主要来自儿童研究，因此对老年自闭症患者知之甚少；（2）虽然人们普遍认识到 ASC 是一种异质的疾病，但我们还不了解导致其未来结果的轨迹差异。我们旨在填补这两个知识空白。
采用多阶段重叠队列设计评估 ASC 中的（认知）衰老，旨在获得加速的纵向数据集。数据包括多种问卷、诊断和认知测试，在 10 年内分四个波次收集。这将提供有关生活质量、并发健康状况和认知的实际变化的信息，以及测试新形成的行为亚型的外部有效性和时间稳定性的可能性。参与者包括三组年龄在 20-90 岁的成年人：（1）有 ASC 的临床诊断，（2）有 ADHD 的临床诊断但没有 ASC，（3）没有 ASC/ADHD（即对照组）。样本量在波次和仪器之间有所不同。详细的分析计划将在 AsPredicted 或开放科学框架中预先注册。
该研究已获得阿姆斯特丹大学心理学系伦理审查委员会的伦理批准（第 1 波 2011-PN-1952 和 2013-PN-2668，第 2 波 2015-BC-4270，第 3 波和第 4 波 2018-BC-9285）。根据资助本研究的资助组织的资助政策，未来的论文将以开放获取的方式发表。
