You’ve taken an important first step towards an accurate CVI diagnosis: You took your child for a comprehensive eye exam. But now you’re confused because it was completely normal — and your child continues to have visual difficulty.
Remember that a routine eye exam looks at the health of your child’s eyes, not at the health or function of the visual brain. Your doctor may determine that your child’s eyes are completely healthy, but you might know that your child isn’t using his or her vision the way they should.
The central question to ask the doctor: “Is this CVI?”
Diagnosing CVI can be a complex process, and, at this point, there are no clinical tests to “see” CVI, not in brain scanning or in the tests in the ophthalmology office. To be even more challenging some of the symptoms of CVI are similar to other conditions that are more well known. Lack of attention? It could be ADHD. Slowness to respond to visual cues? Maybe it’s autism or a cognitive issue? Many kids with CVI have multiple diagnoses, such as cerebral palsy, retinopathy of prematurity, Rett syndrome and others, making diagnosis even more nuanced.
We understand how confusing this is, but there’s also a lot of hope. CVI is the most common cause of pediatric visual impairment in the developed world. It’s an area of ongoing research and growing interest — and more is being discovered about diagnosing CVI all the time.
Ocular visual impairment refers to vision problems caused because one or more parts of the eye are not working properly. On the other hand, cortical visual impairment/cerebral visual impairment is a brain-based visual condition. It impacts the visual pathways (which bring information from the eye through the brain) and the visual processing centers (the places in the brain that help you locate, attend and understand what you see).
Every child’s experience with CVI is unique, but all children with CVI experience brain dysfunction whether visible in brain scanning or not. There are many well-recognized causes of CVI, and more are being identified as CVI diagnosis evolves. According to Boston Children’s Hospital, causes of CVI can include:
Additional causes include genetic disorders, intraventricular hemorrhage and hemispherectomy surgery. For more information and resources on hemispherectomy surgery, visit The Brain Recovery Project.
It’s estimated that 80 to 90 percent of a child’s knowledge comes from visual information and from the ability to link that visual information to what is heard, felt, smelled or tasted. When this important visual sensory channel is impaired, children miss a significant amount of learning opportunities and miss those linking visual experiences to help understand what the other senses are experiencing. Without visual skills to look around when you hear a sound, a sound is a random sound without meaning. That’s why, if your child has a normal eye exam but continues to display vision problems, it’s critical to press for an accurate diagnosis. An accurate CVI diagnosis will help guide you and your child’s team to create the most effective educational programming to support functional vision skills.
A CVI diagnosis is typically made by a pediatric ophthalmologist, neurologist, neuro-ophthalmologist, optometrist, or clinical low vision specialist who understands the visual behavior of CVI seen in an office visit. The understanding of your child’s difficulties is greatly enhanced by your sharing of the child’s visual history, and descriptions of what your child’s visual skills are across the day, across various tasks and across different settings.
That medical professional should refer the child for a complete CVI functional assessment by a teacher of students with visual impairments (TVI). If the doctor does not recognize CVI, a functional vision report by a TVI can help the doctor understand how your child struggles to use their vision, and this collaboration leads to a diagnosis of CVI. This sets your child on the path to access learning. Early intervention and assessment can help address your child’s vision sooner and set them on the path to fruitful learning through visual access and through compensatory skills access.
No patient is untestable: A conversation with Dr. Barry Kran on evaluating patients suspected of having CVI, diagnosing CVI, and his approach to working with children, no matter their complexities
Diagnosing CVI thoroughly comprises several factors:
Background: This includes a full medical history and birth history; developmental history; and educational history
Evaluations: These could include ophthalmological, neurological, genetic, speech and language, metabolic, neuropsychological exams, and functional vision evaluation by a teacher of students with visual impairments who share evaluation results with the medical professionals.
Observation: Kids with CVI display many characteristic behaviors referred to as “visual behaviors”. An evaluation for CVI will examine:
A medical assessment includes:
An educational (TVI) assessment includes:
CVI affects many aspects of a child’s functioning, not just their vision. That’s why it’s essential to get non-visual assessments from specialists like neuropsychologists, speech-language pathologists, physical therapists, and occupational therapists, always in consultation with a TVI.
Often, children with CVI also have auditory processing issues or overlapping learning disabilities. These specialists will help you get a complete picture of your child’s learning profile, so you can obtain tailored and thorough interventions.
You know your child best. If you suspect that his or her vision is impaired, don’t be afraid to press for answers. Seek out a pediatric ophthalmologist or neuro-ophthalmologist who has experience diagnosing CVI.
Once a diagnosis is made, it’s helpful to:
Remember, you’re not alone. Read about other kids’ CVI diagnosis stories in Family stories. And join our private CVI Now Facebook group to connect and find support from other families.