How is CVI diagnosed?

CVI is the most common cause of pediatric visual impairment. It’s critical to obtain an accurate CVI diagnosis and advocate for your child.

Illustration of a parent and child looking at grid of red and yellow dot

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 leading cause of childhood blindness and low vision. It’s an area of ongoing research and growing interest and more is being discovered about diagnosing CVI all the time.

Ocular vs. Cerebral/Cortical Visual Impairment

Ocular visual impairment refers to vision problems caused because one or more parts of the eye are not working properly. On the other hand, cerebra/cortical 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).

What causes CVI?

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 current research and information from the National Eye Institute at NIH and Boston Children’s Hospital, causes of CVI can include:

Additional causes include intraventricular hemorrhage and hemispherectomy surgery. For more information and resources on hemispherectomy surgery, visit the Pediatric Epilepsy Surgery Alliance.

What are some of the associated conditions with CVI?

According to current research, CVI is common in neurodevelopmental conditions, and a wide range of genetic conditions and variants are associated with CVI.

How to obtain an accurate diagnosis

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.

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CVI evaluation and assessment

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:

  1. Appearance of the eyes
  2. Movement of the eyes
  3. Visual attention
  4. Access to people
  5. Response interval
  6. Upper limb precision
  7. Lower limb precision
  8. Sensory Integration
  9. Visual field abilities
  10. Impact of motion
  11. Impact of spacing/object arrangement/clutter
  12. Form accessibility
  13. Impact of color
  14. Impact of light
  15. Visual recognition
  16. Visual curiosity

A medical assessment includes: 

An educational (TVI) assessment includes:

The importance of transdisciplinary assessments

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. 

Next steps: How to advocate for your child

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.

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