Parenting a child with a disability means being attuned to their unique needs, even when those needs aren’t always easy to identify. So when something looks or feels off — for example, maybe your child avoids crowded hallways, seems overwhelmed by too much visual clutter or noise, or struggles to recognize familiar faces (even yours) — it’s easy to feel like something is being missed. That missing piece might be something many parents (and even medical providers or school teams) haven’t heard enough about: cortical visual impairment, also called cerebral/cortical visual impairment, or CVI.
CVI is the leading cause of childhood blindness and low vision in the US, yet it’s under diagnosed at an alarming rate. Fewer than 20% of kids with CVI have an official diagnosis. That means most parents are left wondering why their child seems to see the world differently, without knowing there’s a name for it. And because CVI is brain-based, not eye-based, it’s not something an optometrist or ophthalmologist will necessarily spot with a quick eye exam.
For insights into CVI, we’ve spoken to Melinda Chang, MD, neuro-ophthalmologist at Children’s Hospital Los Angeles; Rachel G. Bennett, MEd, CCVI, director of CVI Now at the CVI Center at Perkins School for the Blind; Sonja Biggs, PhD, TVI, co-founder and president at Sonja Biggs Educational Services; Sarah Chatfield, TVI, CEO at Sonja Biggs Educational Services; Rebecca Hommer, EdD, an educator and education and technical assistance specialist for the University of Maryland program Connections Beyond Sight and Sound; and Lisa Concoff Kronbeck, Undivided public benefits specialist.
Note that the word “impairment” is part of the diagnostic official language; we at Undivided typically use "low vision, partially sighted, blind, or CVI" for visual impairment.
Note that you might see the terms cortical visual impairment and cerebral visual impairment used interchangeably, but they mean the same thing. The term “cortical” is still commonly used, but clinicians and scientists are increasingly shifting to “cerebral” as a more comprehensive term to describe the brain-based challenges seen in CVI.
Research from the NIH, co-authored by Dr. Chang, outlines five key features of CVI:
Bennett explains that there’s not one model when it comes to CVI; every person with CVI experiences vision differently. “CVI has so many diverse manifestations, and everyone’s lived experience is different,” she says. But here, we’ll share what Dr. Chang and Bennett share with us about experiences they’ve heard from children and adults with CVI:
For actual examples of what this can look like, Perkins School for the Blind has images of what people with CVI might see. CVI Scotland also has CVI simulation videos.
As Perkins explains, CVI is often found in neurodevelopmental conditions, with several common causes including complications from premature birth, lack of oxygen, pediatric stroke, and genetic conditions. Are there risk factors for CVI? Dr. Chang breaks down the common medical conditions that can put a child at risk for CVI. “In order to have CVI, they need to have some kind of underlying neurologic diagnosis that affects the visual pathways in the brain. So most commonly, it’s prematurity with periventricular leukomalacia, or they could have hydrocephalus or hypoxic ischemic encephalopathy or head trauma. So those are all risk factors. Also intractable seizures, especially those that have epileptic encephalopathy, so their brain development is altered by their seizures.” Some of the main causes of CVI are:
When should parents start asking questions about CVI? Is it linked to specific symptoms? What signs should they be on the lookout for? Because CVI can be missed or misdiagnosed, it’s important for parents to be on the lookout for potential behaviors and traits. As we explained earlier, CVI can manifest differently in each person, but there are common visual behaviors and traits.
Dr. Chang shares some signs of CVI in babies. Note that many of these signs overlap with ocular causes of low vision, so an eye exam with an optometrist or ophthalmologist is critical to distinguish between ocular and brain-based vision challenges.
As children get older, other traits and behaviors might start to show up. For instance, how are they using their vision? Do they touch things before looking at them? Bennett explains more of what parents can look out for.
Here are some questions Bennett shares with us to help observe potential signs of CVI:
If you suspect your child might have CVI, check out this full list of behaviors to watch for.
Children with CVI often have multiple co-occurring conditions, especially neurodevelopmental ones. As Bennett explains, CVI “commonly co-occurs with several conditions, such as cerebral palsy. Up to 70% of kids with CP have CVI. You can see [CVI] a lot in rare diseases, especially rare genetic epilepsies. Up to 64% of kids with CVI have epilepsy. We also see CVI in autism and in Down syndrome.” Dr. Chang adds that it can also be seen in Angelman syndrome. Other statistics show that 72% of children with CVI have a developmental delay, 23% have autism, and 20% have genetic anomalies.
Dr. Chang tells us that while there’s not a ton of data, “Kids who have visual impairments have a higher rate of, for example, autism, and we think that if they can’t see well, then they can’t really learn social cues or communication, and so they have difficulty developing in that way. That is, I think, the main area that has been studied, but it probably affects development on many different levels. For example, it may take them longer to learn to walk because they can’t see as well.”
One of the biggest challenges of having a co-occurring condition is that certain CVI symptoms can be misdiagnosed as symptoms of something else, which can affect diagnosis. This might help explain why even though estimates suggest around 180,000 kids in the US have CVI, fewer than 20% of those likely to have it actually receive a diagnosis.
For example, “CVI is often misdiagnosed as autism because of overlapping behaviors or symptoms,” experts say. And according to Perkins research, since both CVI and autism are linked to neurological processing challenges, they both can impact social interactions, communication, sensory processing, visual processing, executive functions, and self-regulation. “Because vision is so complexly involved in one’s global development, it is unsurprising that visual delays may mirror autism-like features. Moreover, the complexity of CVI as a brain-based visual impairment further complicates the diagnostic process due to the similarities between the presentations of CVI and autism, particularly in young children.”
CVI can also overlap with dyslexia or motor difficulties, with studies explaining that “a child can be mistaken for [having] dyslexia if there is consequent difficulty reading, or as having developmental coordination disorder if fine visual-motor coordination interferes with tasks, without recognition that CVI is the origin of the reading or motor difficulties.”
For many families, finding a CVI diagnosis can be a long and frustrating journey. Even after a person visits multiple eye centers and sees tons of specialists, the condition often goes undiagnosed. It’s not until families meet with an optometrist or ophthalmologist with expertise in CVI that they finally get an answer.
While neuro-ophthalmologists, pediatric and adult ophthalmologists, and optometrists can all diagnose CVI, it isn’t as easy as booking that checkup and hoping for them to understand. As Bennett explains, “Parents can go to an ophthalmologist who may not know CVI well. So a key question to ask, ‘Do you know about CVI?’ And if they don’t, keep looking or ask your parents community, or come to our website. That’s one of the greatest challenges — access to a provider who knows about CVI and who can diagnose CVI. And it’s a huge problem.”
Dr. Chang explains that most children are diagnosed by a pediatric or neuro-ophthalmologist, but they’re often referred by specialists such as pediatric neurologists or pediatricians. She explains that with more information about CVI being developed, the hope is that more pediatric ophthalmologists and optometrists can diagnose CVI. “Last year, we published a working definition of CVI with this group through the NIH, and this delineates the characteristics of CVI to help increase awareness about CVI but also help people who don’t have specialized training to be able to feel comfortable making the diagnosis. But there may still be some subtle cases where they might not feel comfortable and they might have to see a specialist.”
She also adds that the age of diagnosis really varies, especially because CVI is often missed or misdiagnosed. For the CVI doctor directory, visit CVInow.org.
Parent tips: ask the right question at eye appointments. If you’re worried about your child’s vision, ask the provider directly: “Do you know about CVI?” If they don’t, that’s a sign to keep looking for someone with more experience — don’t be afraid to advocate or switch providers. Talk to your child’s care team. If you’re struggling to get a diagnosis, ask your pediatrician or neurologist for a referral to a neuro-ophthalmologist. Bringing in more eyes (pun intended!) can help move things forward.
If you’re just starting to learn about CVI or trying to seek a diagnosis for your child, one important thing to know right away is that it’s not the same as being nearsighted or farsighted (although children with CVI can still have ocular eye problems as well). Glasses can help sharpen blurry vision caused by those common eye issues, but CVI is different. So even if a child wears glasses to correct their vision, they might still struggle to make sense of the world visually.
To get the whole picture of a child’s diagnosis, Dr. Chang explains that they have to look at both the eyes and the brain: “We have to get a measure of how well they’re using their vision. So there are some things we can do in the eye clinic, like testing their visual acuity by determining the smallest letter, picture, or toy they can see, or their contrast sensitivity. Then we also need to do functional vision assessments to see how they’re using their vision to do activities in daily life. And then we have to put that together with the eye exam, because if they have an eye exam that shows an eye problem that could explain their visual deficits, then we can’t really make a diagnosis of CVI. For example, if they have a severe retina optic nerve problem, then we would have to say that their visual impairment is due to their eye rather than the brain. So we have to look at the whole picture to make the diagnosis.”
In identifying differences between the two, Bennett adds that glasses won’t solve challenges like visual clutter. A child with CVI might still struggle to process too many things in front of them at once, even if the image is clear. That’s why many kids with CVI need environmental supports, such as fewer objects on a plain background, to help their brain make sense of what they’re seeing. “A lot of kids with CVI need the right environmental and material accommodations to be able to use the vision that they have. But they’re also going to need other sensory access points as well. Some with CVI have refractive errors. My son has myopia. He wears glasses, and so he helps the vision that he has get a little more clear. Because we want as clear as possible — to get that into the brain and be able to visually process what’s even available,” she adds.
Parent tip: watch how your child uses their vision at home. Even if they wear glasses, notice whether they still seem confused by busy environments or miss things right in front of them. This can be a clue that their brain — not just their eyes — is having trouble processing what they see.
As Bennett explains, getting a CVI diagnosis isn’t the same as going to an ophthalmologist who will dilate their eyes and find CVI there. That’s because it’s brain-based. “For some it can show up in MRI. For others, it can’t. And so because it’s something that you can’t see . . . it’s often misunderstood and missed. CVI is one of those conditions where questionnaires, screeners and understanding behavioral patterns are going to help the diagnostic process,” she adds.
Dr. Chang tells us that currently, a child doesn’t need to have an MRI to be diagnosed with CVI. In the past, doctors believed that CVI could be diagnosed only if an MRI showed clear differences in the brain. But now we know that some conditions — such as certain genetic disorders or seizure disorders — can affect how the brain processes vision, even if the brain looks typical on an MRI. That means CVI is still possible, even without visible structural differences.
Diagnosing CVI in children with developmental delays can be especially challenging. Dr. Chang explains that if a child has CVI with very low vision or is nearly blind, doctors can often recognize it based on their visual behaviors. But when a child has decent visual acuity yet struggles with visual processing or attention — especially if they are nonspeaking or have difficulty communicating — it becomes much harder to detect. Researchers are working on ways to make diagnosis more accurate, including using eye-tracking technology. By studying how children look at different images on a screen, they hope to find objective ways to identify CVI in kids with developmental delays. This is why it’s important to find providers who are familiar with the disabilities your child has, even if it takes asking more questions, getting more referrals, and doing some research on your own.
While we discussed many of the challenges facing diagnosis and why CVI is so often missed or misdiagnosed, there are some key points to remember.
As Bennett shares, “My son, who has CVI, had a newborn hearing screening when he was born. There was never a newborn vision screening. And I don’t believe newborn vision screening is standard practice. And so it’s not on our radar, as parents, to look at these visual milestones, to understand what we should be looking at in terms of visual development and how vision can actually be what’s impacting all the other areas of development — gross motor development, speech, all of that. In general, as a society, we need to get vision on our radar.”
Parent tip: vision isn’t routinely screened at birth — so don’t wait for a doctor to bring it up. Start watching for early visual milestones (such as tracking faces or reaching for toys) and trust your gut if something feels off. Vision plays a huge role in speech, movement, and learning — and it’s never too early to ask questions. Find a list of common vision development milestones here.
If you suspect your child might have CVI, here’s what you can do:
So what happens after a diagnosis? Dr. Chang gives parents these steps to follow, which we’ll go into more detail about later.
Before age three, early intervention services, including assessments and therapies, may be available through SELPAs and Regional Centers (if your child also has a developmental disability).
Dr. Biggs explains the process: “If a child has a CVI diagnosis, there should be a teacher of the visually impaired (TVI) and orientation and mobility (O&M) specialist on their initial team that does an evaluation before an IFSP is even put together for the student. I’ve done that multiple times for different SELPAs, different school districts, that have a birth-to-three program. Everybody who’s on the team does an assessment, then we come together to build the IFSP based upon the recommendations of the assessment, and we determine eligibility during that time for the student. There can be multiple people on that team — someone who does AT, someone who does speech and language, someone who is a PT, depending upon how many needs that child has. Children with disabilities are located in a couple different ways. One is Child Find. A lot of schools have a Child Find program. Another way is for the parents to go to the school district and say, 'Hey, I have a child who's blind. How do I receive services for them?' That is what starts the process rolling.”
Work with a teacher for the visually impaired (TVI). TVIs are a central member of your child’s IFPS and IEP teams. They are specially trained and licensed educators who support students who are blind, have low vision, or have visual processing challenges like CVI. Their job is to ensure that students can access the curriculum and learn in a way that works best for them. The TVI will recommend accommodations such as enlarged print, high-contrast materials, or proximity to the board to support learning.
Support their preferred methods of accessing learning. While there is no medical treatment for CVI, therapies can focus on helping children CVI access their world using the sensory channels they prefer. Some with CVI use vision, some with CVI use non-visual skills, and most use both.
CVI support over time. In some cases, Dr. Chang explains, functional vision may improve over time: this is believed to be due to neuroplasticity, meaning the brain adapts over time. However, Bennet explains that most children with CVI will always need tools, supports, and accommodations for their CVI because they will always be on the blindness and low vision spectrums.
Navigating public benefits and services can be especially confusing, especially since CVI is often under diagnosed or misunderstood. While some programs, like Regional Centers, may not cover CVI on its own, many public benefits can still offer essential support for healthcare, education, and daily living — particularly when CVI is part of a broader diagnosis or comes with additional needs. Here’s a list of some available public benefits:
California’s Regional Centers provide services for individuals with developmental disabilities, both under and over the age of three. If your child doesn’t qualify for early intervention services from the school system, Regional Center does provide early intervention services for children with CVI who also have also been diagnosed with or are at risk for developmental delay. If a child’s vision loss — whether partial or total — significantly affects their daily functioning, families can request an assessment to determine eligibility for services.
CCS supports children with complex medical needs, including those who have vision challenges, and may offer funding and support for children with CVI. Concoff Kronbeck shares that CCS is “a program for children in California who have specific medical diagnoses and may be another avenue of support for kids who don’t qualify for Regional Center because they only have physical health issues. But there are income requirements for children who don't have Medi-Cal.” If your child qualifies, they can receive low vision evaluations, orientation and mobility training, and assistive devices such as magnifiers or monoculars. Concoff Kronbeck explains that children with full-scope Medi-Cal automatically qualify financially for CCS, even if their family income exceeds the usual income limits. Children must still meet the medical eligibility criteria.
Medi-Cal, California’s public health insurance, provides a wide range of services for eligible children who are blind or have low vision. Coverage may include eye exams, glasses, referrals to low vision specialists, and medically necessary adaptive tools like screen readers, tactile markers, or white canes.
IHSS helps children who are blind or have low vision (including CVI) by providing assistance with daily activities in the home. Services may include help with mobility and, personal care. Children with significant cognitive impairment may also qualify for IHSS protective supervision hours.. For children with significant vision loss, IHSS can support greater independence and reduce caregiving demands on families. Concoff Kronbeck shares that the IHSS assessment is not solely about the diagnosis: “Every child is assessed based on their individual needs. The hours will be awarded based on that particular child and not based on their diagnosis.”
Funding things like white canes, walkers, or gait trainers depends on where and how the item will be used. For school-based needs, both SELPAs and school districts are responsible for providing services and tools that support access to a free and appropriate public education. This might include items such as screen readers, braille devices, or electronic magnifiers.
For equipment or therapies used at home or in the community, health insurance is typically the first place to turn. Concoff Kronbeck explains, “Health insurance is always going to come first for anything that health insurance covers; regardless of what agency they’re going to, if it’s something that the health insurance is responsible for, the health insurance has to pay first.”
Durable medical equipment (DME) such as white canes might be medically necessary outside of school. While insurance doesn’t cover school-based services, it may fund items that are used both at home and at school. If insurance denies coverage, families can explore alternatives such as CCS, Medi-Cal, or school-based programs — especially if the equipment supports educational access.
For more information on funding, head to our article How Do We Pay For It All?
Whether your child has been diagnosed for a few years now, you’re suspecting your baby might have CVI, or you’re already on the way to seeking out a diagnosis for your child, one important thing to have in your back pocket is support. Friends, family, Facebook groups, organizations — one or all can help you support your child and yourself in this process. Our experts leave us with a few parent tips:
For many parents, making their environment as simple as possible for that child to be able to see is important, Dr. Biggs tells us. And while reworking your home to make it accessible for your child is important, Bennett reminds parents that you can have a “normal” home with rugs, picture frames, things on the walls, etc. The key is keeping the house organized/tidy, safe, and knowing what spaces your child spends the most time in and making those accessible. Here are some examples from Dr. Biggs and Bennett:
Finding a team, whether it’s a medical care team or a school-based team, that truly understands CVI can be tough, but it’s not impossible. “This is the name of the game for CVI parents, who are often the ones on the front lines educating the very people who need to be educating our kids. So it’s a really hard role to play. It’s a role that’s really tiring, exhausting, but is so needed to help our kids get access to their learning,” Bennett says.
Sometimes it might mean finding that one provider who is on board and understands, whether it’s the school TVI or the OT, who Bennett says learns a lot more about the brain and may be able to really help parents understand CVI. Whatever the situation is, Bennett gives us some tips. First, make sure the team in front of you is asking you a lot of questions, because parents have the most observational data of their children across environments, whether they know about CVI or not. So you want them to treat you as a collaborative partner so they can learn about your child and learn about what access is needed for them.
Dr. Biggs tells parents that joining support groups, for example, CVI groups for parents on Facebook, is super helpful. Parents can connect with each other by sharing experiences and asking questions like, “Has anyone else had a child do this?” It creates a supportive space where they can say “I’m going through the same thing” and offer helpful advice like, “Here’s what worked for my child.” It’s a great way for parents to support one another and exchange insights.
It can also help your child if you join groups and communities that have other kids who are experiencing the same thing your child is. Dr. Biggs shares that some organizations hold conferences where your child can meet other children who are blind or have CVI, as well as successful adults who can serve as important role models.
One thing Chatfield stresses is parents being able to advocate for their children but also giving themselves grace. “People always think that parenting is going to look a certain way, and then whatever arrives is your journey,” she says. This is important for both parents and children. One reason why is that children absorb a lot of advocacy skills from their parents, so any skill you can learn on behalf of your child, they will learn as well. “When I see kids that do really great, it’s because you have families — not just moms, but dads, parents, foster parents, etc. — that just have a lot of grace for themselves, know how to get the help that they need, and have a little bit of a sense of humor.”
Next up in our series, our article on supporting a child with CVI at home, school, and in the community. It's filled with expert tips on IEP assessments, accommodations, technology, and more!
Save your favorite resources and access a custom Roadmap.
Get Started
