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Blindness and Autism: Parents’ Perspectives on Diagnostic Challenges, Support Needs and Support Provision
Stockholm University, Faculty of Social Sciences, Department of Special Education. National Agency for Special Needs Education and Schools, Sweden.ORCID iD: 0000-0001-8576-0153
Stockholm University, Faculty of Social Sciences, Department of Special Education.
2019 (English)In: Journal of autism and developmental disorders, ISSN 0162-3257, E-ISSN 1573-3432Article in journal (Refereed) Epub ahead of print
Abstract [en]

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.

Place, publisher, year, edition, pages
2019.
Keywords [en]
Autism, Blindness, Children, Assessments, Parents’ experiences, Support
National Category
Educational Sciences
Research subject
Special Education
Identifiers
URN: urn:nbn:se:su:diva-166573DOI: 10.1007/s10803-019-03944-yOAI: oai:DiVA.org:su-166573DiVA, id: diva2:1293253
Available from: 2019-03-04 Created: 2019-03-04 Last updated: 2019-03-12Bibliographically approved
In thesis
1. Children with blindness: Developmental aspects, comorbidity and implications for education and support
Open this publication in new window or tab >>Children with blindness: Developmental aspects, comorbidity and implications for education and support
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this research is to deepen the knowledge about developmental aspects, comorbidity and implications for education and support provision, regarding children with blindness. Special focus is directed towards children with blindness and autism spectrum disorder (ASD).

The research comprises three different projects, reported in five papers. The studies adopt different designs; one is record-based and explores clinical characteristics and etiologies of Swedish children with blindness, one has a longitudinal design with collection of qualitative as well as quantitative data, and explores the school outcome for braille reading students in inclusive education; and one has a mainly qualitative design and explores diagnostic challenges and support to children with blindness and ASD and their families. Both children’s, parents’ and teachers’ perspectives are included in the research.

The results show that children with blindness are very rare; in average seven blind children per year are born in Sweden. Moreover, isolated blindness is unusual in children, and the rate of multidisability is high. The comorbidity with ASD and intellectual disability (ID) is high, especially in certain etiological groups. Competence about children with blindness is necessary in assessment and diagnostic procedures, to differentiate between effects of blindness and possible additional disabilities. The results also highlight the fact that the support provided to children with blindness, with and without additional disabilities, is perceived as insufficient and does not correspond to the complex needs of the population. Teachers need more competence in braille and teaching methods, especially regarding blindness and additional disabilities such as ASD. Parents ask for a more coordinated support with a life-long scope, provided by professionals with expertise in children with blindness.

The opinions about inclusive education differ in the studies; both students, parents and teachers point to advantages as well as challenges. However, for the schools to be able provide equal educational opportunities for children with blindness in the inclusive setting, the support must be further developed and the national responsibility for unusual disability groups must be extended.

 

Place, publisher, year, edition, pages
Stockholm: Department of Special Education, Stockholm University, 2018. p. 115
Keywords
Blindness, comorbidity, autism, intellectual disability, inclusive education, support, braille, children, parents, teachers
National Category
Educational Sciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-156384 (URN)978-91-7797-328-7 (ISBN)978-91-7797-329-4 (ISBN)
Public defence
2018-08-31, Sal 108, Frescati Hagväg 9B, Stockholm, 13:00 (Swedish)
Opponent
Supervisors
Note

At the time of the doctoral defense, the following paper was unpublished and had a status as follows: Paper 5: Manuscript.

Available from: 2018-06-07 Created: 2018-05-15 Last updated: 2019-03-12Bibliographically approved

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