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

Abstract

Case presentation: 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?