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Children with blindness - major causes, developmental outcomes and implications for habilitation and educational
Kim de Verdier1,2, Ek Ulla1, Stefan Löfgren3
1Department of Special Education, Stockholm University, Stockholm, Sweden.
Insights
Congenital blindness in children is rarely isolated, often co-occurring with intellectual disability and autism spectrum disorder. This highlights the need for comprehensive support for children with multiple disabilities.
Area of Science:
- Pediatrics
- Ophthalmology
- Neurodevelopmental Disorders
Background:
- Congenital or early infancy blindness affects children, necessitating understanding of associated conditions.
- Prevalence and causes of blindness in this population require detailed investigation.
Purpose of the Study:
- To describe the population of children with congenital or early infancy blindness in Sweden.
- To identify the causes of blindness and the prevalence of neurodevelopmental impairments in this cohort.
Main Methods:
- Analysis of medical, psychological, and pedagogical records of children born between 1988-2008 with severe visual impairment.
- Data collected included birth year, gender, cause of blindness, gestational age, and co-occurring neurological and neurodevelopmental disorders.
Main Results:
- 150 children were identified, with a prevalence of 7/100,000. Top causes included retinopathy of prematurity (ROP), optic nerve hypoplasia (ONH), Leber congenital amaurosis (LCA), optic nerve atrophy (ONA), and microphthalmia/anophthalmia.
- Nearly 75% of children had additional disabilities, most commonly intellectual disability (ID) and autism spectrum disorder (ASD). Over half had multiple disabilities.
- ASD was particularly prevalent in children with ONH, ROP, LCA, and microphthalmia/anophthalmia.
Conclusions:
- Isolated blindness is uncommon in recent birth cohorts; multidisabilities are prevalent.
- Autism spectrum disorder (ASD) shows a notable association with specific causes of blindness.
- Support systems for families and schools must acknowledge the heterogeneity and high rate of co-occurring neurodevelopmental disorders, especially ID and ASD.
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.
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