Autistic children and adults who are non-verbal/minimally verbal or have an intellectual disability have often been excluded from Autism Spectrum Disorder research. Historical, practical and theoretical reasons for this exclusion continue to deter some researchers from work with this underserved population. We discuss why these reasons are neither convincing nor ethical, and provide strategies for dealing with practical issues. As part of a randomised controlled trial of an intervention for children with profound autism, we reflected as a multi-disciplinary team on what we had learnt from these children, their families and each other. We provide 10 strategies to overcome what appeared initially to be barriers to collecting data with this population. These hurdles and our solutions are organised by theme: interacting physically with children, how to play and test, navigating difficult behaviours, selecting suitable outcome measures, relating with parents, managing siblings, involving stakeholders, timing interactions, the clinician’s role in managing expectations, and recruitment. The aim of this article is to provide researchers with the tools to feel motivated to conduct research with children with profound autism and their families, a difficult but worthwhile endeavour. Many of these lessons also apply to conducting research with non-autistic children with intellectual disabilities.

Lay abstract

Autistic children who speak few or no words or who have an intellectual disability are the most in need of new understandings and treatments, but the most often left out of the research that can bring these benefits. Researchers perceive difficulties around compliance with instructions, testing, challenging behaviours and family stress. Although research with these children can indeed be difficult, their continuing exclusion is unethical and unacceptable. Drawing on our experiences testing a possible treatment for children with profound autism, we provide 10 practical guidelines related to (1) interacting physically, (2) combining play and testing, (3) responding to challenging behaviour, (4) finding suitable tests, (5) relationships with parents, (6) relationships with siblings, (7) involving stakeholders, (8) planning the testing times, (9) the role of the clinical supervisor and (10) recruiting and retaining participants. We hope that these guidelines will prepare and embolden other research teams to work with profoundly autistic children, ending their historical exclusion from research. These guidelines also could be useful for conducting research with children with intellectual disabilities.

中文翻译：

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克服对患有严重沟通困难的自闭症儿童及其家人进行干预研究的障碍

自闭症儿童和不会说话/很少说话或有智力障碍的成年人经常被排除在自闭症谱系障碍研究之外。这种排斥的历史、实践和理论原因继续阻止一些研究人员与这个服务不足的人群合作。我们讨论为什么这些原因既不令人信服也不符合道德，并提供处理实际问题的策略。作为对重度自闭症儿童进行干预的随机对照试验的一部分，我们作为一个多学科团队反思了我们从这些儿童、他们的家人和彼此身上学到的东西。我们提供了 10 种策略来克服最初似乎是收集该人群数据的障碍。这些障碍和我们的解决方案是按主题组织的：与孩子进行身体互动，如何玩耍和测试、应对困难的行为、选择合适的结果衡量标准、与父母联系、管理兄弟姐妹、让利益相关者参与、时间互动、临床医生在管理期望中的作用以及招聘。本文的目的是为研究人员提供工具，让他们有动力对患有严重自闭症的儿童及其家人进行研究，这是一项困难但值得的努力。其中许多课程也适用于对智障非自闭症儿童进行研究。本文的目的是为研究人员提供工具，让他们有动力对患有严重自闭症的儿童及其家人进行研究，这是一项困难但值得的努力。其中许多课程也适用于对智障非自闭症儿童进行研究。本文的目的是为研究人员提供工具，让他们有动力对患有严重自闭症的儿童及其家人进行研究，这是一项困难但值得的努力。其中许多课程也适用于对智障非自闭症儿童进行研究。

摘要

很少说话或不说话或有智力障碍的自闭症儿童最需要新的理解和治疗，但最常被排除在可以带来这些好处的研究之外。研究人员认为在遵守指示、测试、具有挑战性的行为和家庭压力方面存在困难。尽管对这些儿童进行研究确实很困难，但继续排斥他们是不道德和不可接受的。借鉴我们为重度自闭症儿童测试可能的治疗方法的经验，我们提供了 10 条实用指南，涉及 (1) 身体互动，(2) 游戏和测试相结合，(3) 应对具有挑战性的行为，(4) 寻​​找合适的测试， (5) 与父母的关系，(6) 与兄弟姐妹的关系，(7) 涉及利益相关者，(8) 计划测试时间，(9) 临床主管的作用和 (10) 招募和留住参与者。我们希望这些指南能够让其他研究团队做好准备并鼓励他们与严重自闭症儿童合作，结束他们历史上被排除在研究之外的局面。这些指南也可用于对智障儿童进行研究。