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Children with blindness: Developmental aspects, comorbidity and implications for education and support
Stockholm University, Faculty of Social Sciences, Department of Special Education.ORCID iD: 0000-0001-8576-0153
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 [en]
Blindness, comorbidity, autism, intellectual disability, inclusive education, support, braille, children, parents, teachers
National Category
Educational Sciences
Research subject
Special Education
Identifiers
URN: urn:nbn:se:su:diva-156384ISBN: 978-91-7797-328-7 (print)ISBN: 978-91-7797-329-4 (electronic)OAI: oai:DiVA.org:su-156384DiVA, id: diva2:1206093
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: 2022-02-26Bibliographically approved
List of papers
1. Children with blindness – major causes, developmental outcomes and implications for habilitation and educational support: a two‐decade, Swedish population‐based study
Open this publication in new window or tab >>Children with blindness – major causes, developmental outcomes and implications for habilitation and educational support: a two‐decade, Swedish population‐based study
2018 (English)In: Acta Ophthalmologica Scandinavica, ISSN 1395-3907, E-ISSN 1600-0420, Vol. 96, no 3, p. 295-300Article in journal (Refereed) Published
Abstract [en]

Purpose

The aim was to describe the population of children with congenital or early infancy blindness in Sweden, with regard to causes of blindness and prevalence of neurodevelopmental impairments.

Methods

Medical, psychological and pedagogical records of Swedish children with congenital or early infancy blindness (total blindness or light perception at the most) born in 1988–2008 were analysed regarding year of birth, gender, cause of blindness, gestational age, associated neurological disorders/syndromes, associated neurodevelopmental impairments, cognitive level and type of school placement.

Results

A total of 150 individuals, 80 girls and 70 boys, were identified, corresponding to a prevalence of 7/100 000. Five causes of blindness dominated, constituting 76% of all represented aetiologies: retinopathy of prematurity (ROP), optic nerve hypoplasia (ONH), Leber congenital amaurosis (LCA), optic nerve atrophy (ONA) and microphthalmia/anophthalmia. Nearly three of four children in the study population had at least one additional disability besides blindness; the most common being intellectual disability (ID) and autism spectrum disorder (ASD). More than half of the population had more than one additional disability. Autism spectrum disorder (ASD) was most common in children with ONH, ROP, LCA and microphthalmia/anophthalmia.

Conclusion

In children born within the last decades, isolated blindness is uncommon and the rate of multidisabilities is high. Autism spectrum disorder (ASD) seems to be more strongly associated with specific aetiological subgroups. Further development of the support to families and schools should be based on knowledge about the considerable heterogeneity of the population of children with blindness, and the common occurrence of coexisting neurodevelopmental disorders, especially ID and ASD.

Keywords
autism spectrum disorder, blindness, causes, children, developmental outcomes, intellectual disability
National Category
Educational Sciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-152093 (URN)10.1111/aos.13631 (DOI)000430912700038 ()
Available from: 2018-01-24 Created: 2018-01-24 Last updated: 2022-02-28Bibliographically approved
2. A Longitudinal Study of Reading Development, Academic Achievement, and Support in Swedish Inclusive Education for Students with Blindness or Severe Visual Impairment
Open this publication in new window or tab >>A Longitudinal Study of Reading Development, Academic Achievement, and Support in Swedish Inclusive Education for Students with Blindness or Severe Visual Impairment
2014 (English)In: Journal of Visual Impairment & Blindness, ISSN 0145-482X, E-ISSN 1559-1476, Vol. 108, no 6, p. 461-472Article in journal (Refereed) Published
Abstract [en]

Introduction: This longitudinal study examined reading development, academic achievement and support in school for six students with blindness or severe visual impairments in inclusive educational settings. Methods: School grades and results from reading observations and decoding skills tests were collected, and interviews were conducted with students, parents, and teachers. Results: The results show that the outcome of these students' schooling varied a great deal regarding both levels of academic achievement and reading development, as well as in the support needed and received. Students with additional disabilities had less positive experiences in school, and the parents of these students were more critical of the support provided by the schools. Discussion: Important aspects of the outcomes concerned the attitudes held by school management and teachers and the competence of teachers. In some cases, teachers lacked sufficient knowledge about braille and teaching methods for students with visual impairments. Implications for practitioners: The findings imply that the support system for students with visual impairments in Sweden needs to be more systematized in order to secure equal educational opportunities for all students.

National Category
Educational Sciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-114764 (URN)10.1177/0145482X1410800603 (DOI)000349189900003 ()
Available from: 2015-03-10 Created: 2015-03-09 Last updated: 2022-02-23Bibliographically approved
3. Inclusion in and out of the classroom: A longitudinal study of students with visual impairments in inclusive education
Open this publication in new window or tab >>Inclusion in and out of the classroom: A longitudinal study of students with visual impairments in inclusive education
2016 (English)In: The British Journal of Visual Impairment, ISSN 0264-6196, E-ISSN 1744-5809, Vol. 34, no 2, p. 132-142Article in journal (Refereed) Published
Abstract [en]

This longitudinal study examined psychological well-being and social relations in school for six students with blindness or severe visual impairment (VI) in Swedish inclusive education. The students were followed through compulsory school, with data collection in Grades 1, 2, 3, and 9. A total of 151 interviews were conducted with the students, teachers, and parents during these years. At the end of ninth grade, the Strengths and Difficulties Questionnaire (SDQ) was also administered to all informants. The results revealed several challenges regarding social inclusion, with a majority of families being critical of the social situation in the schools. During lower school years, many examples of educational interventions aiming to facilitate social inclusion were described. However, as the children grew older, the parents’ and teachers’ possibilities to influence the group dynamics and create organized social arenas diminished drastically. Regarding the students’ general psychological well-being, the SDQ ratings showed minor or no differences compared to sighted norms. However, the interviews revealed that a majority of the students were stressed about school work and keeping up with their sighted peers and described feelings of loneliness. Some displayed emotional symptoms of which parents and teachers were not always aware. Three students had additional disabilities besides their VI. These students reported more overt psycho-social problems than the students with only VI. The students developed different strategies to handle the social challenges, for example, focusing on school work and getting good grades, or withdrawing and seeking friends with VI outside school. The conclusion is that students with visual impairments are a heterogeneous group comprising individuals with different needs, and that many of these students face social challenges in school. Interventions on different levels are necessary in order to improve the possibilities for these students’ social inclusion.

Keywords
Longitudinal, psychological well-being, school, social inclusion, visual impairment
National Category
Educational Sciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-151896 (URN)10.1177/0264619615625428 (DOI)000433688300005 ()
Available from: 2018-01-24 Created: 2018-01-24 Last updated: 2022-02-28Bibliographically approved
4. Challenges and Successful Pedagogical Strategies: Experiences from Six Swedish Students with Blindness and Autism in Different School Settings
Open this publication in new window or tab >>Challenges and Successful Pedagogical Strategies: Experiences from Six Swedish Students with Blindness and Autism in Different School Settings
2018 (English)In: Journal of autism and developmental disorders, ISSN 0162-3257, E-ISSN 1573-3432, Vol. 48, no 2, p. 520-532Article in journal (Refereed) Published
Abstract [en]

The prevalence of autism in children with blindness is much higher than in the general population. There are many challenges regarding the school situation for children with this complex dual disability. This study explored challenges and successful strategies in school for a sample of six Swedish children with blindness and autism, with and without intellectual disability, through qualitative interviews with students, teachers and parents. All students displayed executive functioning deficits, and the teaching situation entailed several challenges. Our research points to the importance of adopting evidence-based practices for ASD, but adapted according to the students lack of vision. For this to be possible, close collaboration between teachers, parents and specialists in the field of visual impairment and autism is necessary.

Keywords
Autism, Blindness, Children, School, Executive functions, Support, Education
National Category
Educational Sciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-152096 (URN)10.1007/s10803-017-3360-5 (DOI)000424669000017 ()
Available from: 2018-01-24 Created: 2018-01-24 Last updated: 2022-02-28Bibliographically approved
5. Blindness and Autism: Parents’ Perspectives on Diagnostic Challenges, Support Needs and Support Provision
Open this publication in new window or tab >>Blindness and Autism: Parents’ Perspectives on Diagnostic Challenges, Support Needs and Support Provision
2020 (English)In: Journal of autism and developmental disorders, ISSN 0162-3257, E-ISSN 1573-3432, Vol. 50, no 6, p. 1921-1930Article in journal (Refereed) Published
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.

Keywords
Autism, Blindness, Children, Assessments, Parents’ experiences, Support
National Category
Educational Sciences
Research subject
Special Education
Identifiers
urn:nbn:se:su:diva-166573 (URN)10.1007/s10803-019-03944-y (DOI)000536416800006 ()
Available from: 2019-03-04 Created: 2019-03-04 Last updated: 2021-11-26Bibliographically approved

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