Almog Nitsan, Keren Einat Haya, Gabai Tamir, Kassel Orit
Disability Studies Program, Department of Education and Societal Studies, Ono Academic College, Kiryat Ono, Israel.
Ono Academic College, Kiryat Ono, Israel.
J Autism Dev Disord. 2024 Jul 24. doi: 10.1007/s10803-024-06468-2.
Being diagnosed with autism has multiple implications for a person's life and self-identity. Although learning about autism at a younger age is correlated with quality of life, only a few studies have addressed parental disclosure thereof. This study conceptualizes autistic adults' perspectives on parental disclosure. The methods combine grounded theory with the emancipatory research paradigm, drawing on autistic people's personal knowledge. Eighty-five autistic adults participated in six focus groups (51 male, 33 female, 3 non-binary; M = 25); and 41 autistic adults were interviewed (22 male, 17 female, 2 non-binary; M = 28). Both focus groups and individual interviews addressed the way participants learned about their diagnosis from their parents, and their recommendations to other parents on how to disclose. Based on these findings, we developed autistic-driven recommendations for parental disclosure process. The participants viewed the diagnosis as validating their experienced otherness, helping them overcome shame, and promoting their self-understanding and self-advocacy skills. They recommended disclosure as soon as possible after diagnosis and stressed the importance of gradual disclosure according to the child's abilities. Furthermore, they suggested focusing on how autism manifested in the child's own life, rather than "autism" in general. Finally, they recommended presenting autism as a neutral or positive quality, highlighting its strengths and networking the child with other autistic individuals. In conclusion, this study reveals that parental disclosure is an ongoing and spiral process. The proposed model contributes significantly to post-diagnostic support for parents, providing a framework for effective communication about autism with their children.
被诊断患有自闭症对一个人的生活和自我认同有多重影响。尽管在较年轻时了解自闭症与生活质量相关，但只有少数研究涉及父母对自闭症的告知。本研究对成年自闭症患者关于父母告知的观点进行了概念化探讨。研究方法将扎根理论与解放性研究范式相结合，借鉴了自闭症患者的个人知识。八十五名成年自闭症患者参加了六个焦点小组（51名男性、33名女性、3名非二元性别；平均年龄 = 25岁）；41名成年自闭症患者接受了访谈（22名男性、17名女性、2名非二元性别；平均年龄 = 28岁）。焦点小组和个人访谈都涉及了参与者从父母那里得知自己诊断结果的方式，以及他们给其他父母关于如何告知的建议。基于这些发现，我们制定了由自闭症患者驱动的关于父母告知过程的建议。参与者认为该诊断证实了他们所经历的与众不同，帮助他们克服羞耻感，并提升了他们的自我理解和自我维权技能。他们建议在诊断后尽快告知，并强调根据孩子的能力逐步告知的重要性。此外，他们建议关注自闭症在孩子自身生活中的表现方式，而不是泛泛地关注“自闭症”。最后，他们建议将自闭症呈现为一种中性或积极的特质，突出其优势，并让孩子与其他自闭症患者建立联系。总之，本研究表明父母告知是一个持续的、螺旋式的过程。所提出的模型对父母诊断后的支持有显著贡献，为与孩子就自闭症进行有效沟通提供了一个框架。
