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

Journal of Autism and Developmental Disorders
Kim de VerdierUlla Ek

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.

References

Jun 1, 1992·Journal of Autism and Developmental Disorders·R L KoegelA J Plienis
Mar 1, 1991·Child: Care, Health and Development·H TrösterA Beelmann
Oct 1, 1989·Developmental Medicine and Child Neurology·S J Rogers, S Newhart-Larson
Mar 31, 1999·Journal of Autism and Developmental Disorders·R P HobsonR Brown
Mar 31, 2005·Journal of Autism and Developmental Disorders·Lisa A RubleRobert C Saunders
Oct 6, 2005·Qualitative Health Research·Hsiu-Fang Hsieh, Sarah E Shannon
May 6, 2010·American Journal on Intellectual and Developmental Disabilities·Naomi Ekas, Thomas L Whitman
Jul 17, 2010·Research in Developmental Disabilities·Christopher Gillberg
Feb 15, 2011·Clinical Dysmorphology·Moira Blyth, Diana Baralle
Jun 15, 2011·Maternal and Child Health Journal·Giuseppina Chiri, Marji Erickson Warfield
Sep 5, 2013·Developmental Medicine and Child Neurology·Marian E WilliamsMark Borchert
Oct 17, 2013·Developmental Medicine and Child Neurology·Carey A Matsuba
Jul 31, 2014·Autism : the International Journal of Research and Practice·Sandra HodgettsDavid Nicholas
Sep 27, 2015·Journal of Autism and Developmental Disorders·Rubin JureIsabelle Rapin
Nov 25, 2017·Acta Paediatrica·Sara DahlKristina Teär Fahnehjelm

❮ Previous
Next ❯

Software Mentioned

ESSENCE

Related Concepts

Related Feeds

Autism

Autism spectrum disorder is associated with challenges with social skills, repetitive behaviors, and often accompanied by sensory sensitivities and medical issues. Here is the latest research on autism.

Related Papers

Psychiatric Services : a Journal of the American Psychiatric Association
Benjamin ZablotskyElizabeth A Stuart
Revista de neurologia
A Díez-CuervoGrupo de Estudio de los Trastornos del Espectro Austista del Instituto de Salud Carlos III
© 2022 Meta ULC. All rights reserved