Arthur Fleischmann and Carly Fleischmann: Carly’s Voice: Breaking Through Autism
Arthur Fleischmann and Carly Fleischmann: Carly’s Voice: Breaking Through Autism
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亚瑟·弗莱施曼和卡莉·弗莱施曼：卡莉的声音：突破自闭症
DOI：
10.1007/s10803-014-2054-5
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发表时间：
2014
影响因子：
3.9
通讯作者：
E. Vanbergeijk
中科院分区：
文献类型：
--
作者：
E. Vanbergeijk
卡莉的声音：突破自闭症，是一个残酷诚实和原始的弗莱施曼家的家庭旅程，通过她的父亲亚瑟的眼睛和后来，通过卡莉自己的话讲述了他们女儿对自闭症的诊断和治疗。这本书的开头有一个让任何父母都感到恐惧的场景。亚瑟的小女儿失踪了，房子里到处都找不到她。卡莉不会说话，而且似乎不会识别危险，这一事实让情况变得更加复杂。自闭症谱系上的孩子逃跑或流浪，对于自闭症谱系中任何一个孩子的父母来说，都是一件太频繁的事情，是一种可怕的想法。这个故事充满了悲情，并以客观的方式讲述。弗莱施曼透露了他的挫折、缺点和负罪感。他赤裸裸地暴露了自己的灵魂，所有的缺点都没有。尽管他讲述的是不眠之夜和紧张的神经，但这是一个充满希望的故事。卡莉最初被诊断出患有常见的字母汤：一般发育障碍；普遍发展障碍；自闭症；失用症；强迫症；以及可能是最具破坏性的-智力残疾或认知障碍。然而，弗莱施曼和他的妻子在卡莉身上看到了一些东西，让他们认为卡莉身上有更多的东西，而不是她所有的标签所表明的。卡莉的声音对那些正在养育孩子的家庭很有启发意义。通过他们家庭的例子，弗莱施曼夫妇为读者提供了如何应对养育孩子的奇妙技巧。有幽默感可能是弗莱施曼为读者提供的最好的例子，作为一种应对养育发育障碍儿童的要求的方式。他们还开始建立一支由服务提供商、专业人士和其他家庭组成的团队，帮助卡莉取得进步。建立广泛的支助网络对任何家庭的生存都至关重要，特别是在抚养有特殊需要的儿童时。亚瑟和他的妻子塔米开始阅读所有关于自闭症、干预措施和法律的书籍，为卡莉提供适当的教育和行为干预。他们成了女儿的坚定拥护者。然而，他们也能够在家庭生活中保持平衡。他们一对一地介绍了卡莉神经质的双胞胎姐姐和哥哥。弗莱施曼一家在有卡莉和没有卡莉的情况下都进行了家庭度假--这是他们苦恼的决定。在卡莉接触到辅助技术后，取得了突破。她在崩溃中拼出了她的第一个词。卡莉一个人拼出了“救救我”。事实证明，卡莉并没有认知障碍。她的失用症使她无法说话，但她能够进行高度复杂的思考。在书的后面，卡莉开始讲述她那一边的故事。当她描述患有自闭症是什么感觉时，这是一个令人羞愧的故事。她为读者提供了第一手的洞察力，让读者了解当一个人在光谱上崩溃时的感觉，以及她撞击自己、摇晃和撞击头部背后的原因。她指责自闭症专家错误地解释了这种行为。通过她的话，读者或听众会真正感受到她的智慧、个性和敏锐的幽默感。卡莉为自己设定了以任何标准衡量都很高的目标，并实现了这些目标。卡莉与喜剧和脱口秀主持人艾伦·德杰尼勒斯建立了关系。当艾伦在卡莉的成人礼上读到卡莉的演讲时，她把声音借给了卡莉。后来卡莉会
Carly’s Voice: Breaking through autism, is a brutally honest and raw account of the Fleischmann’s family journey through their daughter’s diagnosis and treatment of autism as told through the eyes of her father, Arthur, and later, through Carly’s own words. The book opens with a scene that strikes terror into any parent’s heart. Arthur’s young daughter is missing and cannot be found anywhere in the house. The situation is compounded by the fact that Carly is non-verbal and does not seem to recognize danger. Children on the autism spectrum bolting or wandering, is too frequent of an occurrence and a terrifying thought for any parent of a child on the spectrum. This story is full of pathos and told in an objective manner. Fleischmann reveals his frustrations, short comings and guilt. He bares his soul, warts and all. Even with his narrative of sleepless nights and nerves frayed, this is a story of hope. Carly was originally diagnosed with the usual alphabet soup of diagnoses: General Developmental Disorder; Pervasive Developmental Disorder; Autistic Disorder; Apraxia; Obsessive Compulsive Disorder; and probably the most damaging—an intellectual disability or cognitive impairment. Yet Fleischmann and his wife saw something in Carly that made them think there was more to Carly than what all her labels indicated. Carly’s voice is instructive to families who are raising a child on the spectrum. Through their family’s example, the Fleischmann’s provide readers with wonderful techniques on how to cope with raising a child on the spectrum. Having a sense of humor is probably the best example the Fleischmann’s provide readers as a way to cope with the demands of raising a child with a developmental disability. They also begin to build a team of service providers, professionals, and other families to help Carly progress. The establishment of an extensive support network is critical to any family’s survival, especially when raising a special needs child. Arthur and his wife, Tammy, begin to read all they can about autism, interventions, and laws to provide Carly with the proper education and behavioral interventions. They become fierce advocates for their daughter. However, they also are able to maintain a balance in their family lives. They devote one on one time to Carly’s neurotypical twin sister and older brother. The Fleischmann’s take family vacations both with and without Carly—a decision they agonized over.A break through occurs after Carly is introduced to assistive technology. She spells her first words in the midst of a melt-down. Carly spells ‘‘Help me,’’on her own. As it would turn out, Carly is not cognitively impaired. Her Apraxia prevents her from producing speech, but she is capable of highly complex thoughts. Carly begins to tell her side of the story later in the book. It is a humbling story when she describes what it is like to have autism. She gives the readers first hand insight into how it feels when a person on the spectrum is having a meltdown and what was behind her hitting herself, rocking, and banging her head. She chides autism experts for interpreting the behavior incorrectly. Through her words the reader or listener gets a real sense of her intelligence, personality and sharp sense of humor. Carly sets goals for herself that are lofty by any standards and she accomplishes them. Carly formed a relationship with comic and talk show host, Ellen De Generes. Ellen lent her voice to Carly, when she read Carly’s speech at Carly’s bat mitzvah. Later Carly would