一个家庭的旨在导航儿子的唐氏综合症/自闭症双诊断的故事

2022年3月22日

嗨，我的名字是Chiara，我想分享一下我的儿子，杰克。杰克，14岁，就像他这个年龄的大多数孩子一样。他喜欢在他的Kind上观看音乐视频，是一个美妙的舞者。 He has a good throwing arm, likes to play basketball and loves to swim. Just like anyone else, he has his strengths and weaknesses and learns new things at his own pace. His Down syndrome and autism diagnoses do not define him – they are simply part of who he is.

杰克被诊断患有唐氏综合征和自闭症谱系（DS-ASD）在7岁的时候，当我们收到这个消息时，我很宽容，因为我终于对为什么他似乎与唐氏综合症的其他孩子不同的解释。 The autism diagnosis also made Jake eligible for additional services, such as the state autism waiver, which provides him with community supports. The diagnosis also helped family members and school- and community-based providers to better understand the reason for Jake’s behaviors and how to best address them.

有很多关于自闭症和唐氏综合征的信息，但对双重诊断很少。当我们收到杰克有自闭症的心理评估结果的结果时，心理学家提供了一份建议书清单，包括资源以获取更多信息。 Most were related to autism only. However, the psychologist included two resources for Down syndrome and autism. 

第一个是题为“唐氏综合征和自闭症交叉”的书，该书在杰克诊断之前仅为一年左右发布。这篇宝贵的文本由两名儿童撰写的儿童撰写，提供了有关整个寿命的发展考虑，护理协调，生命计划和遗传影响的信息。 The other was唐氏综合征 - 自闭症连接，非营利性，为家庭提供支持，教育和资源，对DS-ASD的双重诊断，也与临床医生和研究人员合作，以提高意识。

新利luck娱乐在线自闭症发言是当杰克被诊断出患有自闭症时为我们提供的原始资源之一。 What really impressed me about the organization was the volume and depth of resources available with respect to area of need, life stage and geography. The Autism Speaks website is also one of the most comprehensive I have found for insurance information. Although focused on healthcare benefits for autism, the information provided is beneficial to anybody with a developmental disability. I provide resource referrals to families of children with Down syndrome who have insurance coverage questions, and I frequently reference the医疗保健报道着陆页在自闭症上讲网新利luck娱乐在线站。

阅读更多关于Chiara通过她儿子的双重诊断在此Q＆A的旅程：

导致你让儿子评估额外的自闭症诊断吗？

当杰克有点超过1岁时，我们开始关注，因为他的发展率开始缓慢，他表现出一些陈规定型的摇摆行为。 Jake lagged behind his peers with Down syndrome with respect to fine and gross motor development and communication. Over time, the rocking behavior became more frequent and Jake began to develop other repetitive behaviors, including tooth grinding and throwing. He did not show interest in kids his age, nor did he engage in imaginative play. I remember his occupational therapist commenting that Jake did not know how to play with his toys. Jake began hitting peers, and when he was 7 years old, he was asked to leave his daycare. At that time, we initiated behavioral therapy and the therapist recommended we have Jake assessed for autism.

在哪些领域的共同发生的诊断引起了孩子的生命中的斗争？

共同发生的诊断是一种斗争，因为它增加了另一层挑战。杰克仍在致力于日常生活的活动，他的进步非常缓慢。他与唐氏综合征或自闭症的孩子有更多的功能性障碍。  

Down Syndrome-Autism Connection如何影响您作为父母的生活？

在杰克的自闭症诊断后接收到唐氏综合征自闭症连接的联系信息后，我立即伸出了邮件列表和Facebook页面。 It is amazing to connect with parents who completely understand the challenges Jake is having without my needing to explain anything. Any time I have a question, I post to the Facebook page and get multiple helpful responses. I also love to connect with other parents during the monthly Zoom calls that the executive director, Charlotte Gray, launched at the start of the pandemic. It was also through the organization that I learned about and subsequently joined the唐氏综合症医学兴趣集团（DSMIG）DS-ASD委员会，为医疗保健专业人员提供专业知识，他们在寿命中与唐氏综合症患上的个人合作。