Sensory substitution and augmentation techniques in cerebral visual impairment: a discussion of lived experiences
Pediatric vision loss due to cerebral visual impairment (CVI) is an urgent public health issue, demanding evidence-based (re)habilitation and educational strategies. As with other neurodiverse populations, research on CVI needs to be directly informed by the lived experiences of those affected—child...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2025-02-01
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| Series: | Frontiers in Human Neuroscience |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fnhum.2025.1510771/full |
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| author | Stephanie L. Duesing Katie Lane-Karnas Sebastian James Adam Duesing Mae Lane-Karnas Nai Y Arvind Chandna Arvind Chandna |
| author_facet | Stephanie L. Duesing Katie Lane-Karnas Sebastian James Adam Duesing Mae Lane-Karnas Nai Y Arvind Chandna Arvind Chandna |
| author_sort | Stephanie L. Duesing |
| collection | DOAJ |
| description | Pediatric vision loss due to cerebral visual impairment (CVI) is an urgent public health issue, demanding evidence-based (re)habilitation and educational strategies. As with other neurodiverse populations, research on CVI needs to be directly informed by the lived experiences of those affected—children, adults, and their families. In this paper, three individuals with early-onset CVI and two parents discuss sensory substitution and augmentation developed in childhood in the absence of early identification of CVI, and they detail the important impact of the empowering, professionally taught non-visual skills–such as braille, orientation and mobility training, and assistive technology–which were acquired later. Efforts to improve visual perception ability and understanding of the visual world, both effective and ineffective, were made through traditional, professionally administered vision therapy, self-taught coping strategies, and from intensive arts participation. The authors discuss the strategies they use to leverage senses other than vision to achieve their daily life, educational, social, and career goals. Nonvisual skills training effective in those with ocular blindness, though received later in life after the delayed diagnosis, proved to be indispensable for these authors’ who have CVI access to all aspects of independent life. It is our hope that these personal experiences may encourage research into how traditional nonvisual skills training used for the ocularly blind, as well as sensory substitution and augmentation techniques, may be used to develop evidence-based multidisciplinary interventions; improved academic and independent life skills; multisensory educational and therapeutic interventions; and successful integration into the community for all CVIers. |
| format | Article |
| id | doaj-art-8c52004ca0bd4fe7af226426489c59a9 |
| institution | Kabale University |
| issn | 1662-5161 |
| language | English |
| publishDate | 2025-02-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Human Neuroscience |
| spelling | doaj-art-8c52004ca0bd4fe7af226426489c59a92025-02-10T06:48:47ZengFrontiers Media S.A.Frontiers in Human Neuroscience1662-51612025-02-011910.3389/fnhum.2025.15107711510771Sensory substitution and augmentation techniques in cerebral visual impairment: a discussion of lived experiencesStephanie L. Duesing0Katie Lane-Karnas1Sebastian James Adam Duesing2Mae Lane-Karnas3Nai Y4Arvind Chandna5Arvind Chandna6Independent Researcher, Naperville, IL, United StatesIndependent Researcher, Calais, VT, United StatesIndependent Researcher, Chicago, IL, United StatesIndependent Researcher, Calais, VT, United StatesIndependent Researcher, San Francisco, CA, United StatesSmith-Kettlewell Eye Research Institute, San Francisco, CA, United StatesAlder Hey Children’s Hospital, Liverpool, United KingdomPediatric vision loss due to cerebral visual impairment (CVI) is an urgent public health issue, demanding evidence-based (re)habilitation and educational strategies. As with other neurodiverse populations, research on CVI needs to be directly informed by the lived experiences of those affected—children, adults, and their families. In this paper, three individuals with early-onset CVI and two parents discuss sensory substitution and augmentation developed in childhood in the absence of early identification of CVI, and they detail the important impact of the empowering, professionally taught non-visual skills–such as braille, orientation and mobility training, and assistive technology–which were acquired later. Efforts to improve visual perception ability and understanding of the visual world, both effective and ineffective, were made through traditional, professionally administered vision therapy, self-taught coping strategies, and from intensive arts participation. The authors discuss the strategies they use to leverage senses other than vision to achieve their daily life, educational, social, and career goals. Nonvisual skills training effective in those with ocular blindness, though received later in life after the delayed diagnosis, proved to be indispensable for these authors’ who have CVI access to all aspects of independent life. It is our hope that these personal experiences may encourage research into how traditional nonvisual skills training used for the ocularly blind, as well as sensory substitution and augmentation techniques, may be used to develop evidence-based multidisciplinary interventions; improved academic and independent life skills; multisensory educational and therapeutic interventions; and successful integration into the community for all CVIers.https://www.frontiersin.org/articles/10.3389/fnhum.2025.1510771/fullCVIsensory substitutioncerebral visual impairmentO&Msensory augmentationbraille |
| spellingShingle | Stephanie L. Duesing Katie Lane-Karnas Sebastian James Adam Duesing Mae Lane-Karnas Nai Y Arvind Chandna Arvind Chandna Sensory substitution and augmentation techniques in cerebral visual impairment: a discussion of lived experiences Frontiers in Human Neuroscience CVI sensory substitution cerebral visual impairment O&M sensory augmentation braille |
| title | Sensory substitution and augmentation techniques in cerebral visual impairment: a discussion of lived experiences |
| title_full | Sensory substitution and augmentation techniques in cerebral visual impairment: a discussion of lived experiences |
| title_fullStr | Sensory substitution and augmentation techniques in cerebral visual impairment: a discussion of lived experiences |
| title_full_unstemmed | Sensory substitution and augmentation techniques in cerebral visual impairment: a discussion of lived experiences |
| title_short | Sensory substitution and augmentation techniques in cerebral visual impairment: a discussion of lived experiences |
| title_sort | sensory substitution and augmentation techniques in cerebral visual impairment a discussion of lived experiences |
| topic | CVI sensory substitution cerebral visual impairment O&M sensory augmentation braille |
| url | https://www.frontiersin.org/articles/10.3389/fnhum.2025.1510771/full |
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