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Blogs & News

Issue 12 - 21 August 2018

Hi,

Which of the CVIs do you imagine is the most common?

In fact no one knows the answer to that question, but with what we know, we suggest it is likely to be simultanagnostic vision.

Simultanagnostic is a long word (six syllables!) - let's break it down...

Agnostic - is two words combined:

'a' meaning not, and

'gnostic' meaning know

Simultan - from simultaneous, means at the same time

So, someone who has simultanagnostic vision can only see a small amount at once.

Simultanagnostic vision is difficult to understand. We have edited some images, starting with typical vision, in a supermarket (Supermarket with Simultanagnostic Vision, link below), to show how even mild simultanagnostic vision can create difficulties.

Getting to understand the experience of simultanagnostic vision takes time. The best way is to practice, when out and about, anywhere, by just imagining only seeing one, or two, or three things at once, then imagining what might be difficult to see and do as a result. If it is shopping, how hard would it be for you to find your favourite breakfast cereal (see Lucy, Shopping for Porridge, link below).

Some people think of simultanagnostic vision as being something very rare.

We don't think there is anything rare about simultanagnostic vision, we just think that in most affected people, it is hiding behind labels like autism, attention deficit disorder, developmental coordination disorder, dyslexia and learning / global developmental delay.

How does simultanagnostic vision manage to hide so well if it is common?

Well, there are a few reasons. The first is that it results from a non-conscious part of the brain not working so well. Imagine driving a car, there are functions you have full control over, like steering, indicating and braking.

Then there are the bits that run without your control, or even knowledge or understanding, like the exhaust system or the fuel injection system.

The brain is similar. There are parts we can control (typically in the 'control centre' of the brain, the frontal lobes), and parts that we can't control, because they run automatically - which is, most of the rest of the brain.

The second reason, is that simultanagnostic vision is neither well understood nor recognised, so it is hard to diagnose. We often find labels like 'low vision and multiple disabilities' 'low vision and learning delays' 'visual processing difficulties' and even just 'CVI' used as a generic term. Note, none of these descriptions has meaning beyond the label. Children with 'low vision' can only be helped when all visual processing difficulties have been found and measured, along with what they mean for the child and what needs to be done about them.

The third reason is that for many, a standard vision test has been passed, and so, any issues due to vision that the person may have, are not thought to be visual in origin.

We know of projects and research around the world, to help identify simultanagnostic vision, and in the future we are confident that it will be more widely embraced, tested, diagnosed and supported. But what about now?

The CVIs are medical conditions, so in most countries need an initial diagnosis by a doctor. We have seen lots of reports describing CVI, but have only seen the terms simultanagnosia or simultanagnostic vision used in a tiny handful. So how is a parent, or non-medical professional supporting a person with CVIs to know if they do or do not have simultanagnostic vision, if the term has been omitted, or even hidden by a generic term like 'visual processing difficulty'.

At CVI Scotland we have discussed this, as we are impatient for the support needed to reach the people who need it, because we have direct personal experience of the correct adjustments (that allow for an understanding of simultanagnostic vision), quite literally changing lives.

So, we are proposing a bold initiative. Rather than wait for a diagnosis of simultanagnostic vision, assume simultanagnostic vision is present until shown otherwise. We are calling this initiative Default CVI. We know that simultanagnostic vision is only one of many CVIs, but we know simultanagnostic vision is a factor for many who do not have known issues with vision, including adults who have acquired brain conditions, especially stroke and dementia.

We would go as far as to suggest that anyone of any age, who is affected by any behavioural or learning challenges, or has had any sort of event or injury affecting the brain, then take a Default CVI position.

What's the worst that can happen? - Nothing! The accommodations for simultanagnostic vision described below will benefit all, but for those with simultanagnostic vision, the benefits could well be profound.

Default CVI - what to do?

  • 1. Start looking at clutter - don't make drastic changes, but slowly start to reduce clutter, including patterns on wallpaper, carpets, bedding etc (see Cluttered Classroom Paper, link below).
  • 2. Think of that word simultaneous - if there is too much going on, the brain quite literally can't cope. Think across all five senses, not just visually, and think about the experience from the person's perspective. You might not realise it, but you holding their arm, or talking to someone, may be taking up the processing power needed to concentrate on a learning activity.
  • 3. Some will benefit from the single sensory environment of being inside a coloured tent for short periods (see Suzanne Little's work, link below), others may just need a quiet corner, some may not realise they are affected by noise and clutter, but are completely stressed or exhausted at the end of a day - this is a sign of an exhausted brain.
  • 4. Plan regular quiet breaks throughout each day.

These suggestions are all about nurturing the brain, which is not evolving fast enough to keep up with our world. We still have hunter gatherer brains, as we explain in our introduction to a paper on the benefits of reducing clutter in classrooms (link below).

Those affected by simultanagnostic vision, whether diagnosed or undiagnosed, can benefit enormously from changes - but with every day their condition is not catered for, life becomes harder and harder. They can't wait, and we don't think those affected should wait because the knowledge exists to help them, and is available for free. We have dedicated more time and space to explaining simultanagnostic vision on the CVI Scotland website than any other CVI, for this reason - understanding changes lives - Default CVI!

Best wishes

The CVI Scotland Team

PS Everything new can be found in our Updates section, and via Twitter @scotlandcvi and our Facebook page.

In this issue...

  • Supermarket with Simultanagnostic Vision Storyboard
  • Lucy Shopping for Porridge Storyboard
  • CVI Facts - Visual Processing Difficulties
  • Cluttered Classroom Paper
  • Suzanne Little's Tents
  • Brain Reorganisation Paper
  • Developmental Dyslexia Paper
  • Blindsight Newspaper Feature
  • Guide for Parents
  • Visual Acuity Free Tool

Supermarket with Simultanagnostic Vision Storyboard

First in new series, using multiple images (storyboard) to explain the experience of different CVIs, here varying levels of simultanagnostic vision.

Lucy Shopping for Porridge Storyboard

Following our character Lucy, who has simultanagnostic vision, as she struggles to visually locate her favourite porridge.

CVI Facts - Visual Processing Difficulties

A short explanation of why terms like 'visual processing difficulties' without understanding what they are or what they affect, tell us very little.

Cluttered Classroom Paper

Our introduction to this paper, written by Nicola McDowell, considers the demands we place on our brain, and whether it can keep up. It includes Nicola's Blog 20 and a link to the paper.

Suzanne Little's Tents

Suzanne Little invented and is developing the use of single coloured tents to help the most profoundly affected people, as she explains in her work, shared on the CVI Society's new website.

Brain Reorganisation Paper

Our introduction to an extraordinary paper explaining the remarkable recovery in a child following the removal of a significant part of their brain, showing the brain's capacity to reorganise itself is astonishing!

Developmental Dyslexia Paper

Our introduction to this comprehensive and clear paper, explaining the history of our understanding of dyslexia, and where it went very wrong, with lessons for us all.

Blindsight Newspaper Feature

We follow the researchers looking at Blindsight, where a person is able to recognise moving images, when the occipital lobes do not create a picture (due to damage following a stroke). This is called the Riddoch Phenomenon.

Guide for Parents

Our Guide for Parents is relevant to anyone involved with CVIs, not just parents. In Scotland we are distributing printed copies through our many partners, but a pdf is available to view or download and print, with no charge, for those outside of Scotland.

Visual Acuity Free Tool

We have a number of free visual acuity tools, and this new one allows images to be altered, to a person's visual acuity, to see how their world is different.

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About Us

At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.