自闭症家庭的社会支持现状与社会服务需求:基于509位家长的调查

Social Support and Social Service Needs of Autistic Families: Based on the Survey of 509 Parents

养育自闭症子女的家长面临更大的经济与精神压力,而社会支持有助于家长形成有效的应对策略和提高生活质量。基于509位家长的调查研究发现:目前养育自闭症子女家长所获的社会支持主要来源于家庭成员、社会关系等,而来自于政府、机构等正式组织的支持不足;无论是正式支持还是非正式支持,都有利于家长的生活质量。家长对各类社会支持有着强烈的需求度,然而,绝大多数家长认为所获的社会支持并不充足;家长需要更多直接针对自闭症子女及家长的服务及经济救助,小龄自闭症子女家庭更需要康复服务,而大龄家长则对子女的就业安置更加迫切。

Parents with autistic children face greater economic and mental stress,and social support helps parents to develop effective coping strategies and improve the quality of life.Based on a survey of 509 parents,the study found that:(1)the social support of parents with autistic children mainly comes from family members,social relations,etc.,while the support from the government,institutions and other formal organizations is insufficient.(2)Both formal and informal support are conducive to the quality of life of parents.However,the vast majority of parents believe that the social support they receive is not sufficient,and parents have a strong demand for all kinds of social support.(3)Parents need more services and subsidies.Families with young children with autism need rehabilitation services and subsidies,while older parents need more employment placements for their children.