Department of Special Education, Stockholm University, 106 91, Stockholm, Sweden.
National Agency for Special Needs Education and Schools, P. O. Box 121 61, 102 26, Stockholm, Sweden.
J Autism Dev Disord. 2020 Jun;50(6):1921-1930. doi: 10.1007/s10803-019-03944-y.
Autism spectrum disorder (ASD), with or without intellectual disability (ID), is common in children with congenital blindness. This complex combination of disabilities often involves many challenges for the family. This study explored parents' experiences of having a child with blindness and ASD (with or without ID), their support needs and experiences of the support provided. Interviews with eight parents, representing six families, were performed. The parents emphasized that assessment and diagnostic procedures must be performed by professionals with expertise in blind children's development, and ASD. The support was often perceived as fragmented and did not correspond to the families' needs. The results suggest that national guidelines should be produced, to ensure a more coordinated and tailored support to these families.
自闭症谱系障碍（ASD），无论是否伴有智力障碍（ID），在先天性失明的儿童中很常见。这种复杂的残疾组合常常给家庭带来许多挑战。本研究探讨了父母养育失明和 ASD 儿童（伴有或不伴有 ID）的经历、他们的支持需求以及对所提供支持的体验。对 8 位父母（代表 6 个家庭）进行了访谈。父母们强调，评估和诊断程序必须由具有盲童发展和 ASD 专业知识的专业人员进行。支持往往被认为是零碎的，不符合家庭的需求。结果表明，应制定国家指南，以确保为这些家庭提供更协调和量身定制的支持。
