Greaves-Lord Kirstin, Alma Manna, de Graaff Benjamin, Landsman Jeanet, van der Weide Klaske, Jagersma Gabrine, Beskers Theo, Wubs Marieke, Mandemaker Henri, van Daalen Emma, van der Linde Joost, Stapert Anne Fleur, Bekius Jeroen, Piening Sigrid, Landlust Annemiek, van Balkom Ingrid D C
Jonx, Department of (Youth) Mental Health and Autism, Autism Team Northern-Netherlands, Lentis Psychiatric Institute, Groningen, Netherlands.
Department of Psychology, Clinical Psychology and Experimental Psychopathology Unit, University of Groningen, Groningen, Netherlands.
Front Psychol. 2023 Sep 14;14:1229596. doi: 10.3389/fpsyg.2023.1229596. eCollection 2023.
Getting 'stuck', literally and figuratively, is a common experience for autistic people. Literally 'stuck' means exhibiting limited response initiation due to immobility with tense muscles and inability to move. Figuratively 'stuck' means loneliness, passivity or captivity in activities that do not offer long-term satisfaction. To further conceptualize this complex phenomenon of limited response initiation in autistic individuals, we performed qualitative interviews and focus groups with autistic people and their family members, followed by brainstorm sessions and a Delphi study with input from a larger panel of experts from multiple backgrounds. We aimed to co-create the outline of an integrative approach to support autistic people in moving away from this 'stuck state' to more flexible, limber 'supple states' in order to live freer, more meaningful, satisfying and peaceful lives. Over time, in interaction with all participants, our shared insight grew. Based on this, we here stipulate a conceptual framework, in which the described 'stuck state' at the micro-level of the muscles/behavior of one individual, probably is caused by feeling/being 'stuck' or 'cramped' at several overarching (i.e., meso and macro) levels. For instance, stuck in relationships with unhealthy dynamics, stuck at home creating short-term calm, trance-like states (e.g., gaming), stuck at an educational level that might fit the individuals' current social-emotional state rather than their potential cognitive level, stuck in a job that pays the bills but does not feel meaningful, nor contributes to a satisfying life with opportunities for personal development. Stuck in a mental/public health care system where ever ongoing changes in policies hinder sustained support to suit care-needs. Stuck in a regulated societal system making it likely to repeatedly get stuck. Is this phenomenon specific to autism? Formally we have only conducted interviews with this population, but in another smaller, related project we also spoke to people from the general population with careers that are considered successful in the general society. These people actually voiced similar experiences. Therefore, we hypothesize that this numbing state of being or feeling 'stuck' may be a prevalent phenomenon that needs to be addressed. In this article, we discuss several types of interventive approaches (i.e., language-based talking therapies, affective experiential expressive therapies, physical therapies and systemic therapies), prevention as well as intervention programs, directed at different primary stakeholders, that can complement and enrich each other in an integrative policy, that leads to tailor-made, personalized trajectories of interdisciplinary support to enable people to live satisfying, meaningful, dignified and peaceful lives.
从字面和比喻意义上来说，“陷入困境”是自闭症患者的常见经历。字面意义上的“陷入困境”是指因肌肉紧张而无法活动，导致反应发起受限。比喻意义上的“陷入困境”是指在无法带来长期满足感的活动中感到孤独、被动或受困。为了进一步理解自闭症个体反应发起受限这一复杂现象，我们对自闭症患者及其家庭成员进行了定性访谈和焦点小组讨论，随后开展了头脑风暴会议，并进行了德尔菲研究，有来自多个背景的更多专家参与提供意见。我们旨在共同创建一种综合方法的框架，以支持自闭症患者从这种“被困状态”转变为更灵活、更柔韧的“柔韧状态”，从而过上更自由、更有意义、更满足、更安宁的生活。随着时间的推移，在与所有参与者的互动中，我们共同的见解不断加深。基于此，我们在此提出一个概念框架，其中所描述的个体肌肉/行为微观层面的“被困状态”，可能是由在几个总体层面（即中观和宏观层面）感到“被困”或“受限”所导致的。例如，陷入具有不良动态关系中，困在家里营造短期平静、恍惚状态（如玩游戏），困在适合个体当前社会情感状态而非其潜在认知水平的教育阶段，困在一份仅能维持生计但毫无意义、也无助于过上有个人发展机会的满足生活的工作中。困在一个精神/公共医疗系统中，政策的不断变化阻碍了持续提供符合护理需求的支持。困在一个受监管的社会系统中，导致可能反复陷入困境。这种现象是自闭症特有的吗？正式来说，我们只对这一群体进行了访谈，但在另一个规模较小的相关项目中，我们也与普通大众中从事在一般社会中被认为是成功职业的人进行了交谈。这些人实际上也表达了类似的经历。因此，我们假设这种麻木的“被困”状态可能是一种普遍现象，需要加以解决。在本文中，我们讨论了几种干预方法（即基于语言的谈话疗法、情感体验表达疗法、物理疗法和系统疗法）、预防措施以及针对不同主要利益相关者的干预项目，这些方法和项目可以在一项综合政策中相互补充和丰富，从而形成量身定制、个性化的跨学科支持路径，使人们能够过上满足、有意义、有尊严且安宁的生活。
