For adults with CVI

You’re not alone, and you’re not late

A lot of adults find out they have CVI after years of being called clumsy, rude or not paying attention.

• Nai was diagnosed at 18.
• Tina Zhu Xi Caruso was diagnosed at 19.
• Dagbjört Andrésdóttir was diagnosed at 26.

All three now speak and write publicly about CVI. Tina put it plainly: “I feel like we’re missing a huge population of CVIers like me because there aren’t any resources for us.” (Perkins)

That gap is real. We found no US service built just for adults with CVI, and few doctors who assess adults for it. Here’s what does exist.

Where adults with CVI find each other

• The CVI Perspective, by Nai, an adult with CVI. Candid posts about passing as sighted, fatigue, braille and getting believed. Still posting in 2026. Free.
• Nicola McDowell’s blog on CVI Scotland. Nicola has CVI and researches it. She writes about self-advocacy, crossing roads, mental health and asking for help. Free.
• My Vision: Living with CVI, by Dagbjört Andrésdóttir. Short posts on what not to say to someone with CVI, and on people who don’t believe you. Free. Last post July 2025.
• CVI Scotland. A free course and practical guides for all ages, not just children. Free.
• The CVI Society (UK). For people of all ages with CVI. Runs a closed Facebook forum for parents, carers and people with CVI. Free to join the forum.
• Smith-Kettlewell CVIers Discussion Group. A Zoom group for parents and older kids. Adults with CVI who want to share their experience are welcome. Its rule: no one may deny or reinterpret what a person with CVI says about their own experience. Free. Email seelab@ski.org to ask about the next meeting.
• PCVIS. A US society, mostly about children, with a cheaper membership for self-advocates with CVI.
• Facebook: “Adults with CVI, NVI”. A small public group for adults. We couldn’t open it to check it in October 2026, so search for it by name.

Explaining it

At work or college. Keep it short and practical.

“I have a brain-based visual impairment called CVI. My eyes can test fine, but my brain struggles with clutter, crowds and finding things. What helps me is ________.”

Then ask in writing for the changes you need. Colleges have a disability services office. At work, ask HR how to request accommodations. The details depend on the place.

With family. “I’m not lazy and I’m not making it up. CVI is a real vision problem in the brain, and it was missed for a long time. Here’s one thing that would help.” Then name one thing, like “Say your name when you come in” or “Don’t move my stuff.”

Send them the three-minute film first. It does some of the work for you.

Tools that help day to day

• Seeing AI and Be My Eyes. Free apps that read text and describe what’s in front of you.
• Your phone’s built-in settings. Screen reader, zoom, larger text, reduced motion.
• Shutting your eyes. Nicola McDowell: “When I’m feeling really overwhelmed and it’s a very busy environment, I simply shut my eyes.”
• Pacing. Tina’s “spoons” idea: you start the day with fewer spoons than other people, and every task costs some. Plan the day around that.
• A hat or hood to cut down what’s in view when a place is overwhelming. Perkins lists this among strategies adults use.
• Orientation and mobility training and a cane, if they help you. Adults can ask their state vocational rehabilitation agency about blindness and low-vision services. Waits and rules vary by state.

More in Books, apps and tools.

Getting assessed as an adult

It can be hard. There’s no single test for CVI. Perkins says screening and assessment for adults with suspected CVI is “not yet widely practiced.” Most CVI clinics we found are in children’s hospitals.

1. Get a full eye exam first. If your eyes don’t explain what you experience, say so out loud.
2. Ask: “Could this be cerebral or cortical visual impairment?” A neuro-ophthalmologist (a doctor for vision problems that start in the brain) is often the right person.
3. Check the Perkins CVI Doctor Directory. Most names are pediatric, so call and ask whether they see adults.
4. Bring a written list of everyday examples. “I can’t find my friend in a crowd.” “I miss steps.” “I get exhausted in busy stores.”

Perkins also has a plain article for adults wondering about CVI: Unexplained vision issues and chronic fatigue? It could be CVI.

What’s still missing

No US service just for adults with CVI that we could find. Few clinicians who assess adults. Very little research on adult life with CVI. If you write or speak about your CVI, you’re helping fill that gap. And if a parent asks you for help, it’s fine to point them to Where to find real help instead of answering at 11 pm.