What are the signs of CVI in adults?

CVI Now is the trusted source for answers and resources about Cerebral/Cortical Visual Impairment (CVI). If you’re an adult questioning your vision or diagnosis, we’re glad you found us. We’re here to help.

What is CVI, and can adults have it?

CVI is the leading cause of blindness and low vision. CVI is a lifelong, brain-based visual impairment, caused by damage to the brain’s visual pathways or visual processing areas.

While we don’t know how many adults currently live with undiagnosed, brain-based blindness, we do know that only 20% of people 22 and under with likely CVI have received a diagnosis. We also know that children with undiagnosed CVI become adults with undiagnosed CVI—and that this has been going on for decades, affecting generations of people.

Additionally, adults can develop problems with their vision after a traumatic brain injury (TBI), such as a head injury or stroke, that damages the brain. This includes veterans and military personnel, high-impact athletes, first responders, and construction workers. Illness or infection, lack of oxygen, and tumors can also cause acquired CVI, as well as dementia.

Nicola McDowell, an educator and researcher who was diagnosed with CVI in adulthood after a teenage brain hemorrhage, shares the unique nuances of adult-acquired CVI in her blog series.

“Even though I acquired CVI, including a right hemianopia, almost 26 years ago now, when I am going about my daily business, I simply forget that my visual world is different to others and that I can’t always trust what I think I am seeing,” she writes.

Does CVI occur with other conditions?

Yes, but not always. For example, Irlen Syndrome may have come up in your search about visual processing disorders, but there is not enough research to link Irlen’s to CVI yet.

We do know that CVI commonly co-occurs with cerebral palsy, epilepsy, autism, developmental delay, rare diseases, and other conditions that affect the brain. Sometimes, common indicators of CVI are first attributed to more commonly known conditions.

Here are some stats about people with CVI, based on research from Perkins School for the Blind using medical data from McKinsey & Co.

65% have a cerebral palsy diagnosis.
64% have epilepsy.
72% have developmental delays.
23% have autism spectrum disorder.
20% have genetic anomalies.

CVI also occurs alongside both ocular visual impairments and 20/20 vision. When CVI is overshadowed due to another known condition, it can delay a CVI diagnosis and critical access to learning and education.

What are common indicators of CVI in adults?

We’ve spoken with adults who have been diagnosed with CVI later in life. They think that the following symptoms and behaviors are associated with their CVI. Do any of these seem familiar?

Reduced visual field or fluctuating visual field. You might need to tilt your head or lean forward or backward to put objects in your eyeline.
Visual distortions. This includes visual snow, squiggly transparent lines in peripherals, seeing swirls of color instead of defined shapes, or seeing afterimages (or hallucinatory palinopsia).
Compensating for loss of vision. You might rely on your memory to navigate spaces, tilt your head or keep it down to maneuver through certain spaces, or use move your whole head when visually scanning an area.
Tendency to only notice objects that are illuminated or backlit
Sensitivity to light or sunny environments that affect the ability to identify things. You might avoid sitting directly under lights or walking outside on sunny days or in bright environments like the beach.
Experiencing sensory overload. This might manifest as zoning out, staring off, or closing your eyes when visually overwhelmed. You might need “blinders” like a hat or hoodie to block visual fields and reduce visual clutter.
Trouble finding things in clutter or crowds. This might look like losing things that drop on the ground, having a hard time finding food on a plate, or having a hard time with papers that have words and pictures on them.
Depth perception issues. You might use caution when going down steps, drag your heels, pause, or tap your toes.
Sudden vision loss. This can happen when ill; tired; overheated; anxious; or in new, busy, and loud environments.
Tendency to only notice brightly colored objects or text. This might look like not knowing where your paper ends and your desk begins. You might use your arms to create a boundary at the edges of your paper to avoid writing beyond it.
Difficulty identifying people. You might mistake a stranger for a family member, only recognize someone by their voice, have trouble finding familiar people in photos, and miss gestures or visual social cues.
Difficulty recognizing things. You might not notice new items, lose things that drop on the ground, have trouble finding something in a new or cluttered spot, miss things in certain visual fields, or need verbal cues to find something.
Visual fatigue. You might put your head down, become fatigued, or grow irritable after using your vision for a certain amount of time. You might get overwhelmed, upset, or anxious in new, loud, or busy places.
Trouble at meals. You might have a hard time finding food on a plate or eating in a busy environment.
Trouble navigating space. This might look like only crossing the street at the same time as someone else, tripping over clearly visible things, bumping into furniture, walking in front of moving objects, or not knowing familiar routes,
Trouble following a narrative. You might need audio descriptions when watching TV or a movie or the need for tactile stimulation (like braille) in order to understand a storyline.
Chronic migraines. Like many adults with CVI and parents of children with CVI, you might experience migraines and headaches as a consistent part of your life. These migraines seem to be caused by any type of overload to the brain—hunger, overexertion, overheating or too cold, and overstimulation.

Learn more about common CVI behaviors with our When to Suspect CVI guide.

Silas’s CVI Strategies

Silas is an adult in Pennsylvania with suspected CVI. Here’s how he navigates his world.

Socializing: I can’t recognize people, so my friends and I made bracelets with different colors and shapes of charms for each person. I can just gesture to my own bracelet to ask them to show theirs if I’m not sure who I’m talking to. If we’re in a big crowd, at least one of them tries to stay next to me.
Media: I use audio descriptions for TV shows because a lot of them change scenes too quickly for me to follow along. This also helps with figuring out who’s talking, since I can’t recognize faces.
Gaming: I read the Wiki or watch slowed-down gameplay videos on YouTube to memorize menu icons and what each sound means before I play anything new. I also usually play on the easiest difficulty so that there’s less stuff to focus on at once. I prefer games with maps in the corner because I can just watch the different colors of dots and arrows if the rest of the screen is too confusing.
Safety: I try to either cross the street at the same time as someone else or find somewhere with a bird or stray cat sitting in the middle of the road, because they’re usually smart enough to get away from cars.
Shopping: Online shopping is much easier, because in-person stores seem to move stuff around every other week and never organize much beyond “this thing is in a can.” Thank goodness for search bars.

Learn more firsthand strategies with our adult CVI’ers panel.

Is there a test for CVI?

Not exactly. If you suspect CVI, the first step is getting a comprehensive eye exam to see if the problem is with your eyes. If the exam doesn’t find eye problems that explain your symptoms, it might be a neurological issue such as CVI.

At this point, there are no clinical tests to “see” CVI. Some MRIs can show damage to the visual systems of the brain that may result in CVI, but CVI can be present without evidence from brain scanning. There are ophthalmologists, neuro-ophthalmologists, and optometrists who can evaluate and diagnose CVI. Refer to our growing doctor directory to see if there’s one near you.

There are also promising CVI screeners. These include:

Do I need a diagnosis?

Yes. In order to qualify for disability services and supports, a CVI diagnosis is important.

But it’s also essential to remember that the diagnosis process is deeply emotional–and, often, incredibly validating. Take it from Nai, who was diagnosed with CVI in adulthood.

Nai’s advice

“Sometimes seeking a diagnosis can be very psychologically healing, especially for the vast majority of adult CVIers who have usually spent most of their lives being medically gaslit by everyone, including doctors. Having a “stamp of approval” that your condition is real can feel empowering and can create a sense of confidence in being able to speak with authority on your own experiences. Other professionals and laypeople often give more credibility to those with a formal diagnosis as well, which can help tamp down skepticism,” they say.

That said: If you haven’t been diagnosed yet, rest assured that your experiences and symptoms are valid and real. Just because you haven’t gotten a diagnosis doesn’t mean that you don’t have CVI: Again, it is alarmingly underdiagnosed.

“Unfortunately, as disabled people, we often face more frequent demands to prove our medical reality to access many everyday aspects of life that non-disabled people take for granted. And for this reason, as frustrating and unfair as this reality is, having a diagnosis on file definitely comes in handy if there is anyone in your life you have to answer to like an employer, university disability office, social security administration, or program that you receive services from,” Nai says.

Ultimately, a diagnosis enabled Nai to request braille and tactile sign language interpreters in college, but it wasn’t simple because CVI is still so poorly understood.

“My eye doctor had to complete thorough paperwork and even had to speak to the disability office staff on the phone for over an hour explaining to them that my neurological visual impairment was not psychogenic. The disability office staff hadn’t heard of it before, and because there was a lot of money on the line, they approached my request with a high level of scrutiny,” they recall.

Trust your instincts

Or, in the words of an adult CVI’er in the U.K.: “I searched for lots of different terms. Vision problems without eye problems, sight conditions, is it possible to have healthy eyes and lose your sight, sight loss with healthy eyes, etc. I searched for anything and everything I could think of. CVI only came up once in a long list of eye conditions, and it was referred to as being caused by significant brain damage in kids with cerebral palsy. I thought to myself, ‘I’d know if I had brain damage, right?’ which isn’t the case at all.”

Ultimately, you know yourself best. If you suspect something is amiss, trust your instincts.

In the words of Percy, an adult CVI’er: “For so long, I felt broken because I knew I was different but I didn’t know why. I was shamed because I couldn’t find things and was clumsy and ran into and fell over things. But I’m not broken. I have CVI, and I’m blind.”

Meet more adult CVI’ers

You’re not alone! There are so many adult CVI’ers who navigate their worlds and thrive. Their stories are instructive and inspiring.

Additional resources

To learn more about the lived experience of adulthood CVI-–from the logistical to the emotional, from the perspective of a TVI—we love Nicola McDowell’s blog at CVI Scotland.

To read more about life as an adult with CVI, check out these two blogs written by adults with CVI, The CVI Perspective and My Vision – Living With CVI. Screening and assessment in adults with suspected CVI is not yet widely practiced. For more CVI screening information, contact our team at [email protected].