CVI affects "everything," so why is it still missed so often?: A Q&A with Dr Christine Roman-Lantzy

For children with cerebral visual impairment (CVI), the condition shapes every waking moment—how they learn, move, socialize, and care for themselves—yet because it isn't "worn on the face," its profound impact often goes unrecognized. Christine Roman-Lantzy, PhD, a leading authority on CVI and developer of the CVI Range Assessment, has spent her career working to change that.

“[CVI] affects every single waking moment of their daily life, every single waking moment. It's a really serious condition that is not worn on the face, and so people just don't understand the impact to that child, and it is quite impactful,” Roman-Lantzy said in an interview with Optometry Times. “And I think it's also important to recognize that people with CVI often don't see in their lower field, so they're also very often very afraid to move in new places. They have lots of injuries on descending steps or a curb that they don't notice. They might be in a power wheelchair and completely miss that there's a drop off and down they go. So that just adds to their anxiety and their concern because this is a very complicated thing that affects how they learn, how they move, how they socialize, how they take care of themselves. It affects everything.”

In this Q&A, Roman-Lantzy discusses why CVI is so often misdiagnosed as autism, ADHD, or a behavioral disorder; how functional vision assessment picks up where the eye exam leaves off; why caregivers turn out to be one of the most reliable sources for identifying CVI in infants; and her urgent plea to eye care providers, whom she calls the gatekeepers of the entire story.

What are some of the common signs of CVI that do get misread as something else–whether that’s a behavioral issue, autism, cognitive delay–and how do you get a correct diagnosis?

Christine Roman-Lantzy, PhD: That is a huge question, and one that I've been encountering my entire career. It's something I've worked hard to try to help resolve, though we're not there yet. So, children with CVI are diagnosed based on 3 basic factors. One is they have an eye exam that doesn't explain the way they use their vision. The second is they have a history of some big neurologic condition associated with vision loss, and the third is that they demonstrate this set of behavioral characteristics. That's what I use in my test to test the level and the presence of those so that we can plan an intervention program. But those behavioral characteristics, if they're not well known or not well understood by people who are diagnosticians, they may think, "Well, this child doesn't make eye contact.” Children with CVI find the human face far too complex to be able to interpret. It has nothing to do with their attachment or their social regard. They just can't figure this thing out. But people see that and think, "Oh, that must be autism.” They often have language delays because of injury to their brain, not their ability to learn language, but their speech is often impaired. Language is also impaired based on things that you use your vision for to learn about language, but that's a little deeper.

They sometimes have some behaviors that are looked at as sensory-seeking because they love movement. So the visual system is extremely sensitive to movement, and when there's a moving target, or you can make something move, or you move your body, your visual system alerts to that very quickly. They also may move their own body in ways that people think that they're just having like some kind of stimulation issue, when really they may be actually trying to regulate some part of their vision or satisfy some need that vision would otherwise fulfill. That's another big part. They look like they're not paying attention to other people, but really, most kids with CVI cannot see. They can't really interpret anything beyond a certain distance. Depending upon that child's score on the test that we do, that distance varies. But they don't see at distances that are typical of other children. So people think they're not interested in what's going on. They may be plenty interested; they just don't know what's going on out there. They can't make sense of it.

There's a characteristic in CVI associated with visual novelty. So all human beings that have typical vision alert in favor of novelty, something is different. Something's really distinct. Something's new, and our visual system says better check it out. But for children with CVI who have so little visual scheme built in their brain, everything that's new is just more visual white noise. But the thing that is familiar that they've learned, like Elmo or a favorite Slinky or a favorite cartoon character, that's been built deeply in their memory, and they will want that, but they don't seem to regard other new things. People think that that's autism, for example, and then behavior disorders. I have not met a person yet with CVI who doesn't struggle with things with anxiety, because their world is full of what I call landmines all day long; something happens too quickly and they can't process it. It startles them. Somebody falls off a chair, and the person with CVI doesn't know what that is. They just heard a loud sound, and it startles them. Somebody gives them a worksheet to complete, and there's absolutely no way they can make sense of it, so they reject it and push away. Somebody comes over and just moves their body without asking them, and they can't anticipate that because of their vision. So they often will push that person away or show some kind of resistance. Those are just some examples of the things that are associated with the misdiagnosis of autism, attention deficit behavior disorder that are really solved if we give children with CVI proper access and proper support to interpret what they see. We just don't see those behaviors anymore.

For an eye care provider who's never encountered them, how would you describe what the CVI range and the resolution charts actually measure, and how they would be used in practice?

Roman-Lantzy: In the eye exam, there are some ophthalmologists, some optometrists, some neuro-ophthalmologists who understand CVI and know that there are things they can do and things they can't do, and so it's in the best case scenario. It's a partnership between that medical person and the person like me who take picks up the story after the eye exam. The eye exam is very important because if we don't know the status of that child's vision; we don't have the whole story. If the child has strabismus, or if they need glasses, or if they have a coloboma, cataract, those things have to get figured into the rest of this picture. So the eye doctor is critical in giving us that information. But if they examine the child and say, “Well, the eye exam's pretty normal. Let’s just wait and see,” that advice can be really very frustrat[ing] to parents because they know, as I know, that time is everything. So due to neuroplasticity, we really want to be able to help provide the right supports to a child to help them learn to play and eat and talk as soon as possible before they develop other ways of doing that, and also during that time when they're most flexible in their development. So the eye exam is really, really important.

I think that eye doctors can be careful in understanding that–this would be my ask–they would consider that their eye exam is part 1, but there's a part 2. The part 2 is then the functional vision assessment that probes more deeply into how is this condition impacting your life, and at what level. How do those characteristics of CVI manifest in this child? And once we figure out that level, we can provide interventions at that level–not above, not below–to help them have access and to interpret their world. And in some places that's happening. There are places where, for example, in Los Children's Hospital Los Angeles, where the study was completed on the CVI range.¹ They know exactly this story. I know other places that do the same thing that have these doctors who are well informed and think we are all partners in this, and I can't do it without them. And I hope they acknowledge that they also need people who do the functional vision assessment to help then take the story to the next place.

Your dissertation, Validation of an Interview Instrument to Identify Behaviors Characteristics of Cortical Visual Impairment in Infants, found that caregivers can reliably report on CVI characteristics in behaviors in infants. Why do you think caregiver observation works so well for CVI, specifically when self-report is often considered unreliable?

Roman-Lantzy: I kept noticing over and over and over in my earlier work, in my earlier projects, earlier settings that parents were telling me the same thing over and over and over. They had never met each other. There wasn't much known about CVI, but they kept giving the same reports, and I thought, “This has to be diagnostic. They were either gaslighting me or this is diagnostic,” and it turns out it wasn't gaslighting.

So I found that when we ask the correct questions, that parents will tell they practically diagnose their own child, and I think that's the key. It's not that this has to be a group because in this study, the families were not of any particular SES or our location. They were all referred out of a very large city ophthalmology practice, and then later a large city NICU. And so we had all walks of life, all levels of education and income, all different ethnicities, and yet when I asked certain questions–and I had a great advisor who helped me–the parents would answer those questions in ways that linked directly back to one of those characteristics of CVI, and they did so in a way that was really distinct from children who have eye disorders. They answered the questions completely differently. Very interestingly, the children who had the brain conditions associated with CVI who left the NICU when we interviewed those families before any CVI diagnosis came or didn't come, they divided into groups of families whose children did answer those questions positively for CVI, or those who just didn't. So I think the key is all in how well the interviewer can ask the questions because it's also permitted in this interview to probe a bit. You don't have to just stop. There are other tests like this, like the Vineland [Adaptive Behavior Scales], where you can probe a bit. Then the key is the hardest part was for the research people that were gathering these data was to develop the scoring guide, so they would know what a positive or negative for CVI answer was. Of course I had to check some of them from time to time. So it just turns out that when you ask the right questions, parents will lead you to some of the most critical information on behalf of their child, though they don't even know they're doing that at the time. It’s fascinating. So I'll give you an example: if I asked a parent of a child who had either an ocular disorder or no visual issue at all, regardless of age, even very young babies, "Does your child have a favorite color?”–What a weird question, right?–and parents of kids with without CVI or who had eye disorders had all kinds of wild answers, like, "Oh, she likes pink and purple,” or "She's too little to have a favorite color. What do you mean by favorite? Or do you mean this week?” Parents of children with CVI would answer 1-word answers: red, yellow, orange. It was just that distinct. Again, I have to say that if I hadn't listened intently and with every bit of reciprocity I could pull to what they were saying, I would have missed that completely.

But it was always been very important to me what parents say about their children, and that's true. I even had a person in my study who was incarcerated, a parent who was incarcerated. She hadn't been away from her child very long. She answered the questions perfectly aligned with the CVI answers. So I like to always take the opportunity to say parents are a great resource. They are our greatest resource if we really want to start to understand CVI.

I also want to say I believe passionately that the interview has to be a face-to-face or phone-to-phone or Zoom-to-Zoom interview because it's parents will answer very differently if you give them a written inventory. If they have time to think about it and they wonder what are you really getting at and is this going to be a problem, they may answer in a skewed way. So the key was that it was a face-to-face, casual, no-stress interview.

If you had 1 message for eye care professionals about CVI, something you wish they understood, what would it be?

Roman-Lantzy: Please notice that children have CVI. It's still underdiagnosed, grossly underdiagnosed. There's a panel at the NIH that I have the honor of sitting on, looking at CVI and creating a registry. One of the problems is, we know that even the children who are diagnosed with CVI represent a small amount, and there are so many children who are misdiagnosed and getting the wrong intervention, like the interventions for autism, ADD. Behavior issues are all so different than what we do for children with CVI, and the gatekeeper of the entire story is the eye care specialist. So please, please, please notice this, and please refer these children to those who can then take the story forward. That would just be the best thing ever.

Reference

1. Chang MY, Reid MW, Roman-Lantzy C, et al. Validity and reliability of the CVI range for clinical research: Baseline and 1-year results. Ophthalmol Sci. 2026;6(7):101233. doi:10.1016/j.xops.2026.101233