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27-02-2019 | Original Paper | Uitgave 6/2020 Open Access

Journal of Autism and Developmental Disorders 6/2020

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

Tijdschrift:
Journal of Autism and Developmental Disorders > Uitgave 6/2020
Auteurs:
Kim de Verdier, Elisabeth Fernell, Ulla Ek
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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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