自闭症的自我认同：为什么一些患有自闭症的成年人没有临床诊断，以及为什么这对融入社会很重要。

IF 5.2 2区心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL

Autism Pub Date : 2024-11-18 DOI:10.1177/13623613241297222

Katherine Ardeleanu, Hillary Steinberg, Tamara Garfield, Samuelle Voltaire, Lindsay Shea, Maci Brown, Kyle Chvasta, Catherine Do Tan

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引用次数: 0

摘要

内容提要：大多数自闭症研究和服务的重点是被正式诊断为自闭症的患者。然而，自闭症活动家和自我倡导者已经提高了人们对阻碍个人寻求或获得自闭症诊断的挑战的认识。我们采访了 65 名同性恋和变性成人，他们或自我认同为自闭症患者，但未得到正式诊断，或得到了正式的自闭症诊断。我们发现，参与者对他们的自闭症诊断和/或身份进行了解释，并从中找到了肯定，他们在接受诊断时面临着巨大的障碍和阻力，并经历了作为诊断的障碍和产物的无效性。鉴于个人在获得诊断方面面临的挑战，我们建议研究人员和倡导者考虑将自我认同的自闭症患者纳入研究和服务中。

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Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion.

Lay abstract: Most autism research and services focus on individuals with formal autism diagnoses. However, autism activists and self-advocates have raised awareness about the challenges that can prevent individuals from seeking or getting an autism diagnosis. We interviewed 65 queer and transgender adults who either self-identified as autistic without a formal diagnosis or who had a formal autism diagnosis. We found that participants made meaning of their autistic diagnosis and/or identity and found affirmation in this, faced significant barriers and deterrents to getting diagnosed, and experienced invalidation as both a barrier to and product of diagnosis. Due to the challenges that individuals face in getting a diagnosis, we recommend that researchers and advocates consider including self-identified autistic individuals in research and services.

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来源期刊

Autism PSYCHOLOGY, DEVELOPMENTAL-

CiteScore

9.80

自引率

11.50%

发文量

160

期刊介绍： Autism is a major, peer-reviewed, international journal, published 8 times a year, publishing research of direct and practical relevance to help improve the quality of life for individuals with autism or autism-related disorders. It is interdisciplinary in nature, focusing on research in many areas, including: intervention; diagnosis; training; education; translational issues related to neuroscience, medical and genetic issues of practical import; psychological processes; evaluation of particular therapies; quality of life; family needs; and epidemiological research. Autism provides a major international forum for peer-reviewed research of direct and practical relevance to improving the quality of life for individuals with autism or autism-related disorders. The journal''s success and popularity reflect the recent worldwide growth in the research and understanding of autistic spectrum disorders, and the consequent impact on the provision of treatment and care. Autism is interdisciplinary in nature, focusing on evaluative research in all areas, including: intervention, diagnosis, training, education, neuroscience, psychological processes, evaluation of particular therapies, quality of life issues, family issues and family services, medical and genetic issues, epidemiological research.