Families provide a critical context for the overall growth and development of a child. The health of a family is foundational to the everyday life in which a child and family can flourish. For families raising a child with autism, the chronic, intense nature of everyday life threatens family health in part due to increased parental stress and potential centralization of the child with autism in family functioning. The present study sought to understand how families of children with autism perceived and experienced their own family health and to identify what factors and processes families identified as contributing to their health. Researchers conducted semi-structured interviews with 16 families with a child with autism ages 2-17. Interviews occurred in person and with all members present to the extent possible. Sixteen mothers, eight fathers, and 32 children (18 with autism) participated. Interviews were audiorecorded and transcribed verbatim. Researchers analyzed data using inductive content analyses to generate results. Findings suggest families experience family health as a journey grounded within family identity and marked by five themes: connection, balance, the centralization of autism, stress, and support systems. Findings contribute relevant considerations for service providers working to support children with autism and their families.

Lay abstract

Families are important for the overall growth and development of a child. The health of a family is foundational to the everyday life in which a child and family can blossom. Families with a child with autism have a family life that has challenges for many reasons including that parents can be stressed from trying to figure out how to be a good parent for their child with autism. We wanted to know two things: (1) what is family health for families of a child with autism and (2) what affects families trying to be their healthiest. We wanted to know the answers to these questions from families themselves, including parents (not just moms) and children, because they are the best experts. We talked to 16 families including 16 mothers, 8 fathers, and 32 children (18 with autism). Families shared that being a healthy family was a journey with ups and downs and that families were not always perfect. It helped when families knew about themselves as a family such as knowing what they liked and did not like to do, and knowing what the different people in the family needed. Families said that what affected their family’s health was being together, keeping their days not too busy, stress, autism itself, having helpers like friends, grandparents, therapists, and having money to pay for services. We hope that knowing these answers will guide service providers of people with autism to think about healthy families.

中文翻译：

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探索有自闭症儿童的家庭的健康状况

家庭为儿童的整体成长和发展提供了重要的环境。家庭的健康是日常生活的基础，孩子和家庭可以在其中蓬勃发展。对于抚养自闭症儿童的家庭来说，日常生活的长期性、紧张性威胁着家庭健康，部分原因是父母压力增加，以及自闭症儿童在家庭功能中的潜在集中化。本研究试图了解自闭症儿童的家庭如何看待和体验他们自己的家庭健康，并确定哪些因素和过程家庭被认为有助于他们的健康。研究人员对 16 个有 2-17 岁自闭症儿童的家庭进行了半结构化访谈。采访是亲自进行的，并且所有成员都尽可能在场。十六个妈妈，八个爸爸，和 32 名儿童（18 名患有自闭症）参加了。采访被录音并逐字转录。研究人员使用归纳内容分析来分析数据以生成结果。调查结果表明，家庭将家庭健康视为以家庭身份为基础的旅程，并以五个主题为标志：联系、平衡、自闭症的集中、压力和支持系统。调查结果为致力于支持自闭症儿童及其家庭的服务提供者提供了相关考虑。自闭症、压力和支持系统的集中化。调查结果为致力于支持自闭症儿童及其家庭的服务提供者提供了相关考虑。自闭症、压力和支持系统的集中化。调查结果为致力于支持自闭症儿童及其家庭的服务提供者提供了相关考虑。

摘要

家庭对于孩子的整体成长和发展非常重要。家庭的健康是日常生活的基础，孩子和家庭才能在其中茁壮成长。有自闭症孩子的家庭的家庭生活充满挑战，原因有很多，其中包括父母可能会因试图弄清楚如何成为自闭症孩子的好父母而感到压力。我们想知道两件事：(1) 自闭症儿童家庭的家庭健康是什么；(2) 什么会影响试图成为他们最健康的家庭。我们想从家庭本身，包括父母（不仅仅是妈妈）和孩子那里知道这些问题的答案，因为他们是最好的专家。我们采访了 16 个家庭，包括 16 个母亲、8 个父亲和 32 个孩子（18 个患有自闭症）。家人分享说，健康的家庭是一段有起有落的旅程，家庭并不总是完美的。当家庭了解他们自己是一个家庭时，例如知道他们喜欢和不喜欢做什么，以及知道家庭中不同的人需要什么，这会有所帮助。家人说，影响家人健康的因素是在一起，让他们的日子不太忙，压力，自闭症本身，有朋友、祖父母、治疗师等帮手，以及有钱支付服务费用。我们希望知道这些答案将引导自闭症患者的服务提供者考虑健康的家庭。家人说，影响家人健康的因素是在一起，让他们的日子不太忙，压力，自闭症本身，有朋友、祖父母、治疗师等帮手，以及有钱支付服务费用。我们希望知道这些答案将引导自闭症患者的服务提供者考虑健康的家庭。家人说，影响家人健康的因素是在一起，让他们的日子不太忙，压力，自闭症本身，有朋友、祖父母、治疗师等帮手，以及有钱支付服务费用。我们希望知道这些答案将引导自闭症患者的服务提供者考虑健康的家庭。