John F Strang, Abigail L Fischbach, Sharanya Rao, Ann Clawson, Megan Knauss, Sarah N Bernstein, A. V. D. van der Miesen, Anne P Inge, Kenia Alonzo, Julia Zeroth, Lauren Kenworthy, Colleen I Morgan, Abigail Brandt, Christina C Moore, Kaitlyn Ahlers, Mary K Jankowski, Lucy S McClellan, Shane B. Henise, Caitlyn J Cap, Shannon L Exley, Amy Youmatz, Minneh Song, Jennifer L McLaren, B. Parchem
{"title":"Gender and Autism Program: A novel clinical service model for gender-diverse/transgender autistic youth and young adults.","authors":"John F Strang, Abigail L Fischbach, Sharanya Rao, Ann Clawson, Megan Knauss, Sarah N Bernstein, A. V. D. van der Miesen, Anne P Inge, Kenia Alonzo, Julia Zeroth, Lauren Kenworthy, Colleen I Morgan, Abigail Brandt, Christina C Moore, Kaitlyn Ahlers, Mary K Jankowski, Lucy S McClellan, Shane B. Henise, Caitlyn J Cap, Shannon L Exley, Amy Youmatz, Minneh Song, Jennifer L McLaren, B. Parchem","doi":"10.1080/13854046.2024.2318155","DOIUrl":null,"url":null,"abstract":"Objective: Situated in Children's National Hospital (CNH)'s Neuropsychology Division, the Gender and Autism Program (GAP) is the first clinical service dedicated to the needs of autistic gender-diverse/transgender youth. This study describes GAP clinical assessment profiles and presents a multi-perspective programmatic review of GAP evaluation services. Method: Seventy-five consecutive gender- and neuropsychologically-informed GAP evaluations were analyzed, including demographics, gender and autism characterization, and primary domains evaluated. Three program-based Delphi studies were conducted and identify: clinician priorities and challenges in providing care, program administrator lessons learned and ongoing barriers, and considerations adapting this model for a rural academic medical center. Results: Nearly two-thirds of referrals were transfeminine. Most youth had existing autism diagnoses; of those undiagnosed, three-quarters were found to be autistic. Five goals of evaluations were identified: Mental health was always assessed, and most evaluations also assessed gender-related needs in the context of autism neurodiversity. Neuropsychological characterization of strengths and challenges informed personalized accommodations to support youth gender-related self-advocacy. Clinicians emphasized frequent youth safety concerns. Administrators emphasized the need for specialized training for working with families. Components for adaptation of the GAP in a rural academic medical center were identified. Conclusions: Since its founding, the GAP has proven a sustainable neuropsychology-based service with consistent referral flow and insurance authorizations. Capturing staff perspectives through rigorous Delphi methods, and addressing the GAP's feasibility and replicability, this study provides a road map for replicating this service. We also highlight GAP training of specialist clinicians, fundamental to addressing the desperate shortage of providers in this field.","PeriodicalId":197334,"journal":{"name":"The Clinical neuropsychologist","volume":"86 18","pages":"1-37"},"PeriodicalIF":0.0000,"publicationDate":"2024-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"The Clinical neuropsychologist","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1080/13854046.2024.2318155","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0
Abstract
Objective: Situated in Children's National Hospital (CNH)'s Neuropsychology Division, the Gender and Autism Program (GAP) is the first clinical service dedicated to the needs of autistic gender-diverse/transgender youth. This study describes GAP clinical assessment profiles and presents a multi-perspective programmatic review of GAP evaluation services. Method: Seventy-five consecutive gender- and neuropsychologically-informed GAP evaluations were analyzed, including demographics, gender and autism characterization, and primary domains evaluated. Three program-based Delphi studies were conducted and identify: clinician priorities and challenges in providing care, program administrator lessons learned and ongoing barriers, and considerations adapting this model for a rural academic medical center. Results: Nearly two-thirds of referrals were transfeminine. Most youth had existing autism diagnoses; of those undiagnosed, three-quarters were found to be autistic. Five goals of evaluations were identified: Mental health was always assessed, and most evaluations also assessed gender-related needs in the context of autism neurodiversity. Neuropsychological characterization of strengths and challenges informed personalized accommodations to support youth gender-related self-advocacy. Clinicians emphasized frequent youth safety concerns. Administrators emphasized the need for specialized training for working with families. Components for adaptation of the GAP in a rural academic medical center were identified. Conclusions: Since its founding, the GAP has proven a sustainable neuropsychology-based service with consistent referral flow and insurance authorizations. Capturing staff perspectives through rigorous Delphi methods, and addressing the GAP's feasibility and replicability, this study provides a road map for replicating this service. We also highlight GAP training of specialist clinicians, fundamental to addressing the desperate shortage of providers in this field.
目标:性别与自闭症项目(GAP)位于国立儿童医院(CNH)的神经心理学部,是首个专门针对自闭症性别多元化/变性青少年需求的临床服务机构。本研究描述了 GAP 的临床评估概况,并对 GAP 评估服务进行了多视角的项目回顾。方法:对 75 项连续的性别和神经心理学 GAP 评估进行了分析,包括人口统计学、性别和自闭症特征以及主要评估领域。进行了三项基于项目的德尔菲研究,并确定了:临床医生在提供护理时的优先事项和挑战、项目管理人员的经验教训和持续存在的障碍,以及将此模式应用于农村学术医疗中心的注意事项。研究结果近三分之二的转诊患者为女性。大多数青少年已有自闭症诊断;在未确诊的青少年中,四分之三被发现患有自闭症。确定了五项评估目标:心理健康始终是评估的重点,大多数评估还结合自闭症神经多样性评估与性别相关的需求。对优势和挑战的神经心理学描述为支持青少年与性别相关的自我主张提供了个性化的便利。临床医生强调了经常出现的青少年安全问题。管理者强调了与家庭合作的专业培训需求。此外,还确定了在农村学术医疗中心调整 GAP 的要素。结论:自成立以来,GAP 已证明是一项以神经心理学为基础的可持续服务,具有稳定的转诊流程和保险授权。本研究通过严格的德尔菲方法收集了员工的观点,并探讨了 GAP 的可行性和可复制性,为复制这项服务提供了路线图。我们还强调了对专科临床医生的 GAP 培训,这是解决该领域医疗服务提供者严重短缺问题的基础。