Ayyash Marwa, Ayyash Mariam, Saad Fatima, Alaouie Mona, Blackwood R Alexander
Department of Emergency Medicine, Henry Ford Health System, Detroit, MI; Arab American Health Initiative, Dearborn, MI.
Arab American Health Initiative, Dearborn, MI; Department of Obstetrics & Gynecology, Henry Ford Health System, Detroit, MI.
J Natl Med Assoc. 2023 Apr;115(2):254-262. doi: 10.1016/j.jnma.2023.01.017. Epub 2023 Feb 23.
Most research on autism has targeted White Americans. Although challenges and coping mechanisms are present for all parents, some aspects are influenced by culture. This study aims to compare the experiences, challenges and coping strategies for parents of children with autism residing in the US and Arab countries. A survey, available in both English and Arabic, was posted electronically on social media support groups for parents of children with autism in Arab countries and the US. The survey covered experiences, challenges and coping strategies for raising a child with autism spectrum disorder. 165 surveys were collected from 15 Arab countries and 235 surveys were collected from 32 US states. On a scale from 1 to 5, with 5 being highest satisfaction, US parents reported a higher satisfaction for the overall diagnostic process with median score of 3.0 compared to 2.5 for parents in Arab countries. Parents in both countries reported information seeking/self-education about autism and acceptance and/or religion as the 2 most valuable coping strategies. Lower satisfaction with all aspects of the diagnosis process was found among parents in Arab countries compared to those residing in the US. Lack of community support for Arab parents was also a more significant challenge compared to US parents. With such poor community support for Arab parents, it is pivotal to expand upon initiatives that minimize the stigma and shame associated with an autism diagnosis to ultimately reduce challenges and allow for better parental experiences.
大多数关于自闭症的研究都以美国白人为对象。虽然所有父母都面临挑战并采用应对机制，但有些方面会受到文化的影响。本研究旨在比较美国和阿拉伯国家自闭症儿童家长的经历、挑战及应对策略。一份提供英文和阿拉伯文版本的调查问卷通过电子方式发布在阿拉伯国家和美国自闭症儿童家长的社交媒体支持群组上。该调查涵盖了抚养自闭症谱系障碍儿童的经历、挑战及应对策略。从15个阿拉伯国家收集到165份调查问卷，从美国32个州收集到235份调查问卷。在1至5分的评分标准中（5分为最高满意度），美国父母对整体诊断过程的满意度更高，中位数为3.0分，而阿拉伯国家父母的中位数为2.5分。两国父母都将寻求自闭症相关信息/自我教育以及接纳和/或宗教视为两种最有价值的应对策略。与美国父母相比，阿拉伯国家父母对诊断过程的各个方面满意度较低。与美国父母相比，阿拉伯父母缺乏社区支持也是一个更显著的挑战。鉴于阿拉伯父母获得的社区支持如此匮乏，扩大相关举措以尽量减少与自闭症诊断相关的污名和羞耻感，从而最终减少挑战并让家长获得更好的体验至关重要。
