Marquette University, Milwaukee, WI 53201, USA
Clin Child Fam Psychol Rev. 2012 Sep;15(3):247-77. doi: 10.1007/s10567-012-0119-6.
Raising a child with an autism spectrum disorder (ASD) can be an overwhelming experience for parents and families. The pervasive and severe deficits often present in children with ASD are associated with a plethora of difficulties in caregivers, including decreased parenting efficacy, increased parenting stress, and an increase in mental and physical health problems compared with parents of both typically developing children and children with other developmental disorders. In addition to significant financial strain and time pressures, high rates of divorce and lower overall family well-being highlight the burden that having a child with an ASD can place on families. These parent and family effects reciprocally and negatively impact the diagnosed child and can even serve to diminish the positive effects of intervention. However, most interventions for ASD are evaluated only in terms of child outcomes, ignoring parent and family factors that may have an influence on both the immediate and long-term effects of therapy. It cannot be assumed that even significant improvements in the diagnosed child will ameliorate the parent and family distress already present, especially as the time and expense of intervention can add further family disruption. Thus, a new model of intervention evaluation is proposed, which incorporates these factors and better captures the transactional nature of these relationships.
养育患有自闭症谱系障碍(ASD)的孩子对于父母和家庭来说可能是一种压倒性的体验。患有 ASD 的儿童通常存在广泛而严重的缺陷,这与照顾者面临的诸多困难有关,包括育儿效能感降低、育儿压力增加,以及与正常发育儿童和其他发育障碍儿童的父母相比,心理健康和身体健康问题增加。除了巨大的经济压力和时间压力外,高离婚率和整体家庭幸福感降低突出表明,自闭症儿童会给家庭带来负担。这些父母和家庭的影响相互作用并对被诊断的孩子产生负面影响,甚至可能会降低干预的积极影响。然而,大多数 ASD 干预措施仅从儿童的结果来评估,而忽略了可能对治疗的即时和长期效果产生影响的父母和家庭因素。即使诊断出的孩子有显著的改善,也不能认为已经存在的父母和家庭困扰会得到缓解,尤其是因为干预的时间和费用可能会进一步破坏家庭的稳定。因此,提出了一种新的干预评估模式,该模式纳入了这些因素,并更好地捕捉了这些关系的交互性质。