Hus Bal Vanessa, Szatmari Peter, Georgiades Stelios, Gentles Stephen J, Girault Jessica, Howlin Patricia, Lai Meng-Chuan, Carter Leno Virginia, Lord Catherine, Madgett Katie, Sheinkopf Stephen J, Simonoff Emily, Williams Zachary J, Zwaigenbaum Lonnie, Halladay Alycia
Rutgers University, USA.
Rutgers Center for Adult Autism Services, USA.
Autism. 2025 May 22:13623613251341012. doi: 10.1177/13623613251341012.
Longitudinal research in autism has contributed a wealth of knowledge about etiological factors, development from childhood through adulthood, life course changes and needs, as well as longer-term adult outcomes for individuals on the spectrum and their family members. This research is essential to better understand the needs of individuals as they age. However, along with the as yet unrealized opportunities to understand an individual in more nuanced ways across time, there are challenges to utilizing this research design that should be considered. These include sample and measurement diversity, retention, outcome measures, analysis, and funding considerations. This article outlines some of the most pressing challenges together with potential solutions to maximize the value of longitudinal research designs that can help address questions that are of high priority to the autism community.Lay AbstractLongitudinal research has been critical to understand the life course of people with autism, including factors which increase the probability of an autism diagnosis, the emergence of early markers, co-occurring psychiatric conditions, predication of future educational and support needs across childhood and adulthood, and understanding what makes each person unique and contributes to the well-being of autistic people and their families. However, these studies take time, patience, investment of families and individuals, scientists and are challenging to all involved. This article will outline some of the issues that have occurred in the past and provide potential solutions to improve the quality of these studies to both the scientific and autistic communities. They include sample and measurement diversity, retention, outcome measures, analysis, and funding considerations. This understanding of the field is important for both scientific research and community engagement in the studies that include the autistic community.
对自闭症的纵向研究已经积累了大量关于病因因素、从童年到成年的发展、人生历程变化与需求，以及谱系中的个体及其家庭成员的长期成人结局等方面的知识。这项研究对于更好地理解个体随着年龄增长的需求至关重要。然而，在有尚未实现的机会以更细致入微的方式随时间了解个体的同时，利用这种研究设计也存在一些应予以考虑的挑战。这些挑战包括样本和测量的多样性、留存率、结局指标、分析以及资金方面的考量。本文概述了一些最紧迫的挑战以及潜在的解决方案，以最大化纵向研究设计的价值，这些设计有助于解决自闭症群体高度关注的问题。
纵向研究对于理解自闭症患者的人生历程至关重要，包括增加自闭症诊断可能性的因素、早期标志物的出现、共病的精神疾病状况、预测儿童期和成年期未来的教育及支持需求，以及理解使每个人独特并有助于自闭症患者及其家庭福祉的因素。然而，这些研究需要时间、耐心，需要家庭、个体以及科学家的投入，并且对所有相关方来说都具有挑战性。本文将概述过去出现的一些问题，并提供潜在的解决方案，以提高这些研究对科学界和自闭症群体的质量。这些问题包括样本和测量的多样性、留存率、结局指标、分析以及资金方面的考量。对该领域的这种理解对于科学研究以及包括自闭症群体在内的社区参与研究都很重要。
