孤独症谱系障碍（autism spectrum disorder，ASD）是一种以社会交往障碍、重复刻板行为、兴趣狭窄为核心症状的广泛神经发育性障碍，他们拥有很多典型的外显障碍，例如：重复刻板的行为特征、难以衡量的智力水平、令人奇怪的兴趣爱好、琢磨不定的社会交往缺陷、令人费解的沟通与思维形式等等。孤独症主要以康复行为干预和教育为主，但长期高强度的干预给家庭带来严重的经济负担与心理焦虑。2009年以后，我国孤独症患病群体可能超过1000万。随着诊断水平的提高，这个数字只会越来越大，孤独症已成为我国儿童精神残疾的最大病种。这意味着，在中国，有千百万个在深渊中苦苦挣扎的孤独症家庭。

随着融合教育的推进，孤独症被越来越多的人了解和接纳，孤独症教育和康复也逐渐成为教育学和社会学等研究领域的热点。但是 相比于孤独症而言，与孤独症相伴产生的孤独症家庭却很少得到关注。但是孤独症家长这个群体活跃于各种领域，为自己的孩子发声，为孩子争取更多的权益，这让大家看到了这个群体的力量。的确，孤独症家庭在孤独症儿童成长之路上是至关重要的。在孤独症儿童主干家庭之中，父辈和祖辈的不同成员在家庭面对危机和挑战时都能发挥不同的作用，而且成员之间通过合作可以构筑坚强有力的关系网络，帮助家庭渡过难关。可见，孤独症儿童主干家庭有其内在韧性。

本研究采用质性研究的范式，选择两个孤独症儿童主干家庭为研究对象，运用个案研究的方法收集访谈、观察和实物分析的资料探究孤独症儿童主干家庭韧性的发展过程和特点。在分析资料时，本研究结合角色理论和代际团结理论，透过情景分析和类属分析相结合的方法对资料进行深度分析。研究结论如下：

第一，孤独症儿童主干家庭韧性的发展具有三个阶段，分别为：家庭韧性受损阶段、家庭韧性启动阶段和家庭韧性重整阶段。在受损阶段，家庭遭遇了突然转变的角色期待、身心俱疲的角色压力、一触即发的家庭矛盾几个危机；在家庭韧性启动阶段，家庭成员降低角色期待、突破角色限定、增强角色认同；在家庭韧性重整阶段中，家庭成员间建立平衡型角色关系并合理安排角色分工。

第二，孤独症儿童主干家庭中最下功夫的角色是母亲，她需要在大家庭和小家庭中扮演不同的角色，成为赡养父母的重要实施者、父母间的斡旋者、自我调整者、思虑周全的贤内助、孩子教育的主导者、各类信息的捕捞者、未雨绸缪的铺路者；父亲承担着家庭经济支柱的角色，是养家糊口的主要支持者、妻子情感宣泄的垃圾桶以及家庭决策的重要决定者；而祖辈甘心离开自己生活大半辈子的家乡，跟随子女成为名副其实的“老漂”，全心全意对孙子，不离不弃对子女。

第三，我国孤独症儿童主干家庭韧性有其特有的特征，从角色理论和代际团结理论进行分析可以发现，家庭信念系统表现出受“家文化”的熏陶、受母职主义的影响、现代女性家庭权利强化的特点；家庭组织系统包括性别角色分工和代际角色分工，两种分工都表现出“台前幕后”的特点；家庭沟通系统都表现出传递信念、交换有效信息、坦诚的情感表达的特点。

本研究通过角色理论和代际团结理论的视角，来研究中国孤独症儿童主干家庭韧性的特有特征，并对其进行一定的文化解释，在此基础上，本研究提出了孤独症家庭应对危机的建议，以期提高孤独症家庭韧性，增强其抵抗风险的能力。

Autism spectrum disorder (ASD) is a widespread neurodevelopmental disorder with social communication disorders， repetitive stereotyped behaviors and narrow interests as its core symptoms. They have many typical manifestations of disorders， such as repetitive stereotyped behaviors， incalculable intelligence， strange hobbies， unpredictable social communication flaws， puzzling communication and thinking styles， etc. Autism is mainly based on rehabilitation behavior intervention and education， but long-term high-intensity intervention brings serious economic burden and psychological anxiety to the family. It is showed that there are about 2 million children in China in the second national sample survey of the disabled in 2006， and the number of autistic patients may exceed 10 million. With the improvement of the diagnosis level， this number will only increase， and the autism has become the largest disease of children's mental disability in our country. This means that there are millions of autistic families struggling in the abyss in China.

With the advancement of inclusive education， autism is understood and accepted by more and more people， and autism education and rehabilitation have gradually become a hot spot in the fields of pedagogy and sociology. But compared with autism， autistic families that accompany autism have received little attention. However， this group of autistic parents is active in various fields， speaking for their children， and fighting for more rights and interests for their children， which allows everyone to see the power of this group. Indeed， autistic families are crucial in the growth of autistic children. In the stem family of children with autism， different members of the parents and grandfathers can play different roles in the face of crises and challenges in the family. And through cooperation between members， a strong network of relationships can be built to help the family tide overcome obstacles. It can be seen that stem families of children with autism have inherent resilience.

This study adopts the paradigm of qualitative research， selects two stem families of autistic children as the research object， uses the method of case study to collect interviews， observations and physical analysis to explore the development process and characteristics of the resilience of the stem family of autistic children. When analyzing data， this research combines role theory and intergenerational unity theory， and conducts in-depth analysis of data through a combination of context analysis and category analysis. The research conclusions are as follows:

First， the development of the stem family resilience of children with autism has three stages， namely: the impaired family resilience stage， the family resilience initiation stage， and the family resilience reorganization stage. In the impaired stage， the family encountered a sudden change of role expectations， exhausted role pressure， and a hair-trigger contradiction. In the initiation stage， family members lower their role expectations， break through role restrictions， and enhanced their role identification. In the restructuring phase， family members establish a balanced role relationship， and arrange the division of roles rationally.

Second， the most important role in the main family of autistic children is the mother. She needs to play different roles in the big family and small family， becoming an important implementer of supporting parents， a mediator between parents， a self-regulator， and a thoughtful wife， the leader of children's education， the catcher of all kinds of information， and the paving the way for a rainy day. The father assumes the role of the family's economic pillar， the main supporter of the breadwinner， an emotional catharsis bin of the wife， and the family important decision makers; while the grandparents are willing to leave their hometown for most of their lives， follow their children to become veritable "old drifters"， and treat their grandchildren wholeheartedly and never abandon their children.

Third， the resilience of the main family of children with autism in my country has its own unique characteristics. From the analysis of role theory and intergenerational solidarity theory， it can be found that the family belief system shows the influence of "family culture"， the influence of maternalism， and the strengthening of modern female families’ rights. The family organization system includes the division of gender roles and the division of intergenerational roles， both of which show the characteristics of "before and behind the scenes"; the family communication system shows the ability to convey beliefs， exchange effective information， and express emotions frankly.

From the perspectives of role theory and intergenerational solidarity theory， this study investigates the unique characteristics of the resilience of Chinese autistic children’s stem families， and provides a certain cultural explanation for them. On this basis， this study proposes how autistic families can cope with crisis to improve the resilience of autistic families and enhance their ability to resist risks.