For CVI Awareness Month, Cerebral Palsy Research Newtwork community member Danielle Shealy shares her personal experience living with cerebral/cortical visual impairment and the strategies that help her navigate daily life.

Cerebral/Cortical Visual Impairment (CVI) is a neurological condition that affects how children and adults process visual information. Unlike vision problems that originate in the eyes, CVI is a brain-based cause of visual impairment that affects how the brain interprets what is seen. Thanks to strong advocacy by people with lived experience and their families, as well as growing efforts from clinicians, educators, and researchers, CVI is receiving much-needed attention and resources.

It’s estimated that less than 20 percent of children and young adults with CVI in the US have been formally diagnosed. In fact, people with CVI can have a normal routine eye exam and still have problems with their vision without an explanation. People with CP are at increased risk for CVI because the early disturbance or injury to the brain that affects movement can also affect the visual pathways and areas of the brain responsible for processing visual information. Since traditional eye exams do not typically assess CVI, symptoms may go unrecognized even after visits with vision professionals. Fortunately, awareness, research, and efforts to improve identification of CVI are growing.

People with CVI can experience different kinds of symptoms and difficulties with their visual processing, and in some children and adults who have CVI, related symptoms such as inattention, difficulty with social engagement, or learning difficulties may be attributed solely to other conditions/diagnoses when CVI may also be contributing. Knowing whether someone has CVI can help explain these challenges and identify supports that reduce barriers to participation, learning, and social connection.

For example, someone may easily locate an object on a plain background but struggle to find the same object in a busy or patterned environment. After several tries, they may turn their attention elsewhere appearing disinterested or bored. Other people with CVI may look away while reaching for objects, have difficulty recognizing faces of family members, teachers or friends, or become overwhelmed by visually crowded pages, classrooms, stores, or websites.

This is why it is important to talk with eye care professionals and your care team about concerns you may have related to vision and whether further evaluation may be appropriate. Members of your care team and school professionals, including occupational therapists and other rehabilitation professionals or teachers of the visually impaired, may have experience, resources, and training related to supporting people with CVI. Sharing information and asking questions can help everyone who supports you or your child better understand how CVI may affect daily life.

Because CVI affects each person differently, individual experiences can vary widely.

For me, CVI becomes most noticeable when I am working with large amounts of similar information, such as a spreadsheet. I process information more easily when there is less “visual clutter” or “visual noise” surrounding the information I need to focus on and follow. To make the information easier to interpret, I often zoom in to 200% and add extra spacing between rows and columns. These simple adjustments reduce visual crowding and help my brain process information more efficiently.

My experience highlights an important aspect of CVI: what a person sees with their eyes is only part of the picture. The brain must also organize, interpret, and make sense of that information. When too much visual information is presented at once, that process can become more difficult and tiring. My tools and strategies make it possible for me to more efficiently process visual information and remain engaged in learning, connecting with other people and writing pieces like this blog post!

Understanding CVI can help families and professionals recognize the symptoms, learn more about their source, and in cases where CVI may be the cause or part of the cause, introduce practical supports, strategies, and accommodations that can make the visual world more accessible and meaningful.

Examples of strategies that may help people with CVI include:

• Reducing visual clutter in the environment/simplifying visual elements
• Increasing contrast between objects and backgrounds
• Using larger print, different fonts and additional spacing between letters, words and line spacing
• Using text-to-speech or other audio supports to reduce fatigue: Check out the Bookshare digital library for people with vision impairment and other disabilities
• Allowing extra time to process visual information

Built-in accessibility features on laptops, tablets, and smartphones, as well as programs designed for people with visual impairments, can make information easier to access and process.

Awareness of CVI is growing globally and in the US, and related research efforts are being prioritized. In June 2024, the CP Research Network participated in discussions organized by the National Eye Institute to offer our expertise and support for developing a national CVI registry. The registry is being developed to improve understanding and identification of CVI, advance research and provide data that may help inform future policy and clinical care.

By listening to one another, sharing practical strategies, asking questions, and continuing to learn together, we can build a more informed and supportive community for people navigating life with CVI.

Disclaimer: This article is intended for educational purposes only and should not be considered medical advice. Please consult your healthcare providers or other qualified professionals regarding specific questions about CVI, vision, diagnosis, treatment, or support services.

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CVI resources:

Video overview of CVI from Undivided

National Institutes of Health (NIH) resource page about CVI

Practical resources and information about CVI from Perkins and CVI NOW