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Blindness and Autism: Parents' Perspectives on Diagnostic Challenges, Support Needs and Support Provision.

Authors
  • de Verdier, Kim1, 2
  • Fernell, Elisabeth3
  • Ek, Ulla4
  • 1 Department of Special Education, Stockholm University, 106 91, Stockholm, Sweden. [email protected] , (Sweden)
  • 2 National Agency for Special Needs Education and Schools, P. O. Box 121 61, 102 26, Stockholm, Sweden. [email protected] , (Sweden)
  • 3 Gillberg Neuropsychiatry Centre, Institute of Neuroscience and Physiology, University of Gothenburg, Kungsgatan 12, 411 19, Gothenburg, Sweden. , (Sweden)
  • 4 Department of Special Education, Stockholm University, 106 91, Stockholm, Sweden. , (Sweden)
Type
Published Article
Journal
Journal of Autism and Developmental Disorders
Publisher
Springer-Verlag
Publication Date
Jun 01, 2020
Volume
50
Issue
6
Pages
1921–1930
Identifiers
DOI: 10.1007/s10803-019-03944-y
PMID: 30815772
Source
Medline
Keywords
Language
English
License
Unknown

Abstract

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.

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