• Skip to main content
  • Skip to header right navigation
  • Skip to site footer
  • Who we are
    • Our Vision, Mission, and Values
    • Meet the Trustees
    • Meet the Staff
    • Regional Parent Supporters
    • Our Professional Board
    • Policies and Documents
    • Annual Reports
  • How We Help
    • Carer Support Service
    • Education Support Service
  • Get Involved
    • Family Membership
    • Professional Membership
    • Donate
    • Regular Giving
    • Fundraising & Events
    • Volunteering
      • Become an SMS Awareness Ambassador
      • Become a Regional Parent Supporter
      • Become a Project Volunteer
      • Become a Community Supporter
    • Corporate Support
    • Trusts & Foundations
  • News & Events
Donate
Contact Us
SMS Foundation UK logo

SMS Foundation UK

Supporting SMS families for a positive future

  • What is SMS?
    • New Diagnosis
  • Support & Advice
    • Support for Parents & Carers
    • Support for Professionals
  • Information & Resources
  • SMS Stories
  • Home
  • Contact Us
  • Who we are
    • Our Vision, Mission, and Values
    • Meet the Trustees
    • Meet the Staff
    • Regional Parent Supporters
    • Our Professional Board
    • Policies and Documents
    • Annual Reports
  • How We Help
  • News & Events
  • New Diagnosis
  • SMS Explained
  • Support & Advice
    • Support for Parents & Carers
    • Support for Professionals
  • Information & Resources
  • SMS Stories
  • How You Can Support Us
    • Family Membership
    • Professional Membership
    • Donate
    • Become a Regular Donor
    • Fundraising & Events
    • Volunteering
      • Become a Regional Parent Supporter
      • Become a Project Volunteer
      • Become a Community Supporter
      • Become an SMS Awareness Ambassador
    • Corporate Support
    • Trusts & Foundations
  • Family Membership

We are a small charity that supports families living with Smith-Magenis syndrome (SMS)

Never feel isolated or alone. Call our helpline and leave a message: 0300 101 0034 (we aim to respond to messages within 48 hours).

Newly Diagnosed?

Cortical or Cerebral Visual Impairment

Topic: Vision

What is Cortical Visual Impairment (CVI)?

Cortical visual impairment (CVI) is a brain-based visual impairment. The processing of visual information is impaired as a result of a neurological problem in the areas of the brain responsible for visual function. As many areas of the brain are responsible for visual function, some areas process movement, colours and even forms. This demonstrates the convoluted nature of visual impairment; each experience is unique – as one (or more) of these different areas of the brain may not be fully functioning. I will be exposing this visual impairment not with a scientific eye, but with an eye that will emphatically uncover the visual world of cortical visual impairment.

There are many characteristics in cortical visual impairment, so many of these will be stated and explained to hopefully develop a deeper understanding. Furthermore, suggested guidance will be on adaptations and sources for further support if you feel like a lot of these are familiar with your children or adults.

Symptoms

The experience may be unique or differ slightly, so some of these characteristics may be similar but not exact. However, that does not diminish the importance to adapt and access potential support. So here are how the symptoms may present.

The below images are taken from a CVI-SIM (virtual reality progress video) on the CVI Scotland website. The videos are the result of students’ work from the Department of Computer Studies of the University of St Andrews (2020/21 academic year) in partnership with the Department of Medicine.

CVI example of normal vision
Example of normal vision in a classroom simulation (courtesy CVI Scotland)
CVI example of lower visual field impairment
Example of CVI (lower field impairment) in a classroom simulation (courtesy CVI Scotland)
Find out more and watch the CVI-SIM videos on CVI Scotland

Variable Vision

Vision may be variable, someone with this condition may experience poorer vision when tired or ill. This could well be a common occurrence as eye fatigue is an inevitable experience throughout the day. However, another characteristic is sitting closer than 30cm to the television. This in conjunction with being able to see less when tired may cause an intensified experience.

Speaking as a visually impaired person I find that it’s never just one problem that the biggest issue, it’s the combination of multiple problems which amount to a more overall hindrance to the daily experience of living with a disability. Using the two characteristics stated before, sitting closer to the TV for anyone will cause a level of fatigue potentially due to the brightness of the TV. Combine this with a decreased sense of vision when tired, the two characteristics influence one another.

Adaptations maybe not so obvious, but they can be made. Unfortunately, the nature of some disabilities is that they will never go away, despite that fact it doesn’t mean it will disable the person from living a functional life. With the characteristic of sitting closer to the TV, the obvious answer would be sitting further away from the TV. However, someone with cortical visual impairment may react angrily when being distracted from a task, so a suggestion could have allowed them to sit close to the TV but enable a blue light mode on devices. That will minimise the potential tiredness which could cause further vision issues based on the characteristics.

With CVI, the experience is unique to the individual and every person should be treated as an individual, having adaptations that cater to those unique experiences.

In summary, it is the multiple attributes of CVI that influence one another to intensify the one seemingly copiable characteristic. Although this may be the case small adaptations and understanding go a long way to providing whoever is in need with the ability to function in the new normal.

Summary of Symptoms

  • Specific preferences for certain colours/textures. It’s hard to pinpoint exactly what these preferences are, however, there would be a clear distinction for visual preferences based on how that item/object is presented.   
  • Specific need or preference for movements, some objects may be easier to see based on its movement.  
  • Delayed visual responses to objects/faces, there may be a sense of latency to look at an object/face and be able to recognise it. 
  • Struggling with visually complex situations. The visual world for a person with CVI should preferably be as simplistic as possible. This could be incorporated through solid colours and minimising a visually busy environment. 
  • Preference of visual fields. Someone with CVI may have different preferences on how they would like to interact visually with objects. Some people may prefer seeing objects in their peripheral vision rather than centrally. 
  • Difficulties with visual distance. Many people with CVI have difficulties seeing objects from a greater distance. This is reminiscent of short sightedness and having issues with depth perception. 

With CVI the list of characteristics and symptoms could keep on going on, demonstrating the complexity of this visual impairment. Despite this, the ones listed above should reflect the majority of CVI characteristics. 

CVI Clusters

Often with CVI, those who have one symptom generally present with a reduction in visual acuity. For some people CVI is not singular, but a pattern resulting in several CVI symptoms. These patterns are called CVI clusters, and relate to different parts of the brain affected. Further information about CVI clusters can be found here.

The 10 Characteristics of CVI

The Pediatric Cortical Visual Impairment Society (PCVIS) has published a really good article on the 10 characteristics of CVI. Pediatric Cortical Visual Impairment Society

Getting a Diagnosis

If you suspect your child, or adult with SMS, may have CVI you should seek advice from your doctor or optician who can refer you to a specialist ophthalmologist.

Interview (podcast)

Living with Cortical Visual Impairment (CVI)

Liam talked to Hazel Wotherspoon about living with Ellen who has been diagnosed with CVI, and Smith-Magenis syndrome.

As mentioned above, cortical visual impairment is unique to the person. This video clip shows Lily, who is diagnosed with Smith-Magenis syndrome, and her challenge with processing depth perception and descending a staircase. Lily’s mum says:

Lily requires a lot of support coming down steps and has to ‘feel’ her way down, especially if the stairs are unfamiliar to her. Typically, there is a queue of people waiting at the top for her to reach the bottom and this can make it difficult in public spaces. It usually takes a very long time for Lily to reach the bottom and causes her a huge amount of anxiety.

Leeann Stevenson, mum to Lily

Strategies and Tips to help someone with CVI

Even though many people with CVI learn to adapt to their disability, there are a few simple things that can be done to provide extra safety and support for that person. Patience, understanding, and, conscientiousness are vital to supporting the needs of someone with CVI. Making simple adaptations around the home, or workplace, to ensure the environment is made as safe and comfortable as possible will also help. Some ideas may include:

  • Sensitive use of Illumination within the environment, i.e. ensuring the rooms are well lit to avoid dark areas. Also, avoiding any glaring or very bright lights that could cause distraction and/or discomfort.
  • Ensure there is no clutter/debris on the floors and/or surfaces.
  • Use of handrails on stairs, or in the shower/bath.
  • Avoiding busy patterns on furnishings or home decor to minimise visual stimulation, particularly in areas where there are high levels of interaction.
  • Avoid moving furniture or large objects around a room. Many people with CVI rely on memory.
  • Try to plan visits to busy public places like supermarkets, or cinemas, when it is likely to be quieter. Many of the large supermarket and cinema chains have introduced ‘Autism Friendly’ times which are quieter and have reduced lighting to minimise visual stimulation.

Strategies for Interacting with a Child Who Has CVI (The University of Nevada, Reno)
https://www.unr.edu/ndsip/english/resources/tips/cortical-visual-impairment

What does my child with CVI see?
Perkins School for the Blind – What does my child with CVI see

Support for CVI

The CVI society 
The CVI Society Website

Royal National Institute of Blind People (RNIB)
Supporting children with cerebral visual impairment

Resources

Sim-Sight (CVI Scotland)

Sight-Sim is a computing programme that lets you see how different things look like for people with reduced clarity of vision (visual acuity), with reduced contrast sensitivity or with both.

Sight-Sim was developed by a team of Scientists, Engineers, Computer Programmers and Ophthalmologists in Glasgow. It is a world-leading and award-winning software which has also inspired Peek Vision’s smart phone apps (see below). Click here for Sight-Sim Instructions

Peek Acuity (Mobile Simulator by Peek Vision)

As mentioned above, Peek Acuity is a mobile phone app that simulates visual acuity, and was inspired by Sight-Sim. Click here to find more about Peek Acuity.

Talks and Lectures by CVI Scotland

CVI Scotland have published a range of talks and lectures about CVI on their website.

Scientific Paper (published on the Wiley Online Library)

Identifying and characterising cerebral visual impairment in children: a review

University of Nevada, Reno

There are some excellent resources and tips shared by the University of Nevada, Reno in their ‘Nevada Dual Sensory Impairment Project‘.

Disability Legislation around CVI

Document submitted by Professor Gordon Dutton to a Scottish Parliamentary enquiry on visual disability in children.

Access to Services and Support for Children with VI (NHS Scotland) – Visual Impairment Network for Children & Young People

References

CVI Scotland
Royal National Institute of Blind People (RNIB)
The CVI Society
The Pediatric Cortical Visual Impairment Society (PCVIS)

Topic: Vision
Previous Post:Annual Review illustration graphic of books and a laptopWebinar: Navigating the Annual Review (PAST EVENT)
Next Post:Understanding Cerebral Visual Impairment (Webinar Recording)Webinar - featured image
SMS Foundation UK logo

Never feel isolated or alone. Call our helpline: 0300 101 0034

Please note: This is an answer phone service that will alert us as soon as a message is left. A member of the team will call you back as soon as possible – we aim to respond to messages within 48 hours.

  • Facebook
  • Twitter
  • LinkedIn
  • Instagram
  • YouTube
  • Mail

Become a Member of The SMS Foundation UK

Connect with SMS families in your region and be the first to receive updates on any social meetings, conferences, and fundraising events going on!

Family & Carer Membership
Professional Membership

Registered UK Charity (CIO) 1186647

Scottish Charity (SCIO) SC050921

Registered with the Fundraising Regulator

Copyright © 2021 Smith-Magenis Syndrome (SMS) Foundation UK CIO · Registered Charity Address: 61 High Street, Pewsey, Wiltshire SN9 5AF  
Privacy Policy · SMS Disclaimer · Terms and Conditions ·  Media and Logo Usage Guidelines ·  Social Media Usage and Policy · Policies and Documents