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一名非二元性别的年轻成年人的临床表现以及身份认同、伪装和自我诊断自闭症的问题。

Clinical Presentation and Questions of Identity, Camouflaging, and Self-diagnosed Autism in a Nonbinary Young Adult.

作者信息

Sharma Aanchal, Fogler Jason, Van Scoyoc Amanda, Phelps Randall, Augustyn Marilyn

机构信息

Division of Developmental Medicine, Boston Children's Hospital, Harvard Medical School, Boston, MA.

Dogwood Psychology Center, Hillsborough, NC.

出版信息

J Dev Behav Pediatr. 2025 May 13;46(4):e425-e427. doi: 10.1097/DBP.0000000000001375.

Abstract

Vee is a nonbinary (sex assigned at birth: female) 16-year-old 11th grader presenting for their initial multidisciplinary team assessment (including developmental-behavioral pediatrics and psychological assessment). Vee's family first became concerned about their development when they were in pre-kindergarten. The school had concerns related to autism and provided Vee with an Individualized Education Plan (IEP) for autism-related services, although a formal medical diagnosis was never made. Vee "lost" the autism classification and associated services when they were in the first grade and no longer qualified for an IEP. However, concerns regarding social skills and identity persist 10 years later, and Vee is now questioning whether they are on the autism spectrum. Vee has carried historical diagnoses of obsessive-compulsive disorder (OCD), anxiety, depression, attention-deficit hyperactivity disorder, and specific learning disabilities-none of these diagnoses entirely explaining or satisfying Vee's long-standing sense of neither understanding nor being understood by others. Although symptoms of OCD, including intrusive thoughts, have significantly improved with therapeutic intervention, Vee still struggles with mood and anxiety. Their anxious tendencies include hair pulling and storing the hair in boxes. They "hate" school and often engage in school refusal; this has notably worsened since Vee entered middle school. Upon the start of high school, Vee disclosed that they identify as nonbinary to their parents, best friends, and school counselor.Vee struggles with social interactions, especially in novel social situations, and there is a history of bullying. They have 2 best friends, who both recently moved away. Most of their friends are in the online community. Vee has always preferred independent play, loves anime and rescuing animals, and is very imaginative and artistic. Vee has an early history of lining up items, toe-walking, and sensory sensitivities to loud noises, aesthetics of rooms and clothing, and textures of clothing. Vee can be aggressive toward their mother when they are frustrated and may even punch walls. They are not aggressive with any other individuals. Her mother wonders where "nonbinary begins and neurodiversity ends, never mind just being a teenager!"During the course of the assessment, which included Module 4 of the Autism Diagnostic Observation Schedule, Second Edition, Vee used little to no eye contact to manage their social interactions. They spoke in a flat monotone, and their use of gestures was greatly reduced for age; their gestures were also stiff and poorly coordinated. During the course of the assessment, Vee narrated their thought process in what they characterized as their "vocal stim": silly voices, catch-phrases and blurted swear-words. Vee explained how they use their vocal stim at different times to discharge nervous energy, entertain friends, and cope with challenging situations. Vee and their family are desperately seeking an answer to why they are so "different" from other young adults. Ultimately, the team conferred a diagnosis of autism spectrum disorder, much to the relief and expressed appreciation of Vee and their family. How can the team proceed from here and support Vee and their family?

摘要

维伊是一名16岁的非二元性别(出生时被认定的性别:女性)十一年级学生,前来接受首次多学科团队评估(包括发育行为儿科学和心理评估)。维伊的家人在他们上幼儿园前就开始担心他们的发育情况。学校曾担心他们患有自闭症,并为维伊提供了一份与自闭症相关服务的个性化教育计划(IEP),尽管从未做出过正式的医学诊断。维伊在一年级时“失去”了自闭症分类及相关服务,不再符合获得IEP的条件。然而,十年后,关于社交技能和身份认同的担忧依然存在,维伊现在开始质疑自己是否属于自闭症谱系。维伊曾有过强迫症(OCD)、焦虑症、抑郁症、注意力缺陷多动障碍和特定学习障碍的既往诊断——但这些诊断都无法完全解释或满足维伊长期以来那种既不理解他人也不被他人理解的感觉。尽管经过治疗干预,强迫症的症状,包括侵入性思维,已经有了显著改善,但维伊仍在情绪和焦虑方面挣扎。他们的焦虑倾向包括拔头发并把头发装在盒子里。他们“讨厌”学校,经常拒绝上学;自从维伊进入中学以来,这种情况明显恶化。上高中后,维伊向父母、最好的朋友和学校辅导员透露自己是非二元性别。维伊在社交互动方面存在困难,尤其是在新的社交场合,并且有过被欺负的经历。他们有两个最好的朋友,最近都搬走了。他们的大多数朋友都在网络社区。维伊一直更喜欢独自玩耍,喜欢动漫和救助动物,并且非常有想象力和艺术天赋。维伊早年有排列物品、踮脚尖走路的习惯,对噪音、房间和衣服的美感以及衣服的质地有感官敏感性。维伊沮丧时可能会对母亲有攻击性,甚至可能会打墙壁。他们对其他任何人都没有攻击性。她的母亲想知道“非二元性别从哪里开始,神经多样性又在哪里结束,更不用说只是做个青少年了!”在评估过程中,包括《自闭症诊断观察量表第二版》的模块4,维伊在社交互动中几乎没有眼神交流。他们说话语调平淡,与年龄相比,手势的使用大幅减少;他们的手势也很僵硬,协调性很差。在评估过程中,维伊用他们称之为“发声刺激”的方式讲述自己的思维过程:滑稽的声音、流行语和脱口而出的脏话。维伊解释了他们如何在不同时间使用发声刺激来释放紧张能量、逗朋友开心以及应对具有挑战性的情况。维伊和他们的家人迫切地想知道为什么他们与其他年轻人如此“不同”。最终,团队做出了自闭症谱系障碍的诊断,这让维伊和他们的家人松了一口气,并表达了感激之情。团队从这里该如何继续,以支持维伊和他们的家人呢?

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