What is CVI?

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Pick & Mix, Labels

You only need to look at topics relevant to the child.You only need to look at topics relevant to the child.

This section is written mainly for parents and carers, but is relevant for all affected by CVI too.

If your child has limited language and can struggle to understand explanations or instructions, please also see our page Labels - Non Verbal Children.

If your child uses a wheelchair regularly or sometimes, please also see our page Labels - Wheelchair Users.

We are using the term label as the name given to different groups of behaviours or difficulties. Some of these labels, for example, Developmental Coordination Disorder (DCD), are diagnosable medical conditions. Others, for example Sensory Processing Disorder, whilst assessed and supported in some countries, have not been 'officially' recognised. That does not make them any less 'real'.

Official recognition from the medical community requires that the condition be accepted and listed on the International Classification of Diseases (ICD), which is managed by the World Health Organisation. But even at this ICD level, medical conditions are not 'fixed', for example Aspergers Syndrome was previously listed and has now been removed from the ICD (see Autism, below). Like our knowledge, the understanding of all these labels is an evolving process.

In this section we are going to look at the labels most commonly associated with CVI relating to your child's development in the following areas:

  • Learning
  • Social
  • Developmental
  • Behavioural

This is not going to be a list of every medical condition associated with CVI, as that would be too long, as potentially any children's medical condition can occur in a child with CVI. For more information on medical conditions there are many on-line resources, please click here for the UK NHS A-Z of Conditions information pages. For a list of conditions relating specifically to the eyes and vision, please click here.

Labels - Causes, Effects & Assessments
For many of the labels, the underlying causes are not known. Where there is no known cause, assessment can only be based on behaviours and difficulties.

In many cases, as we will explain, part of the assessment process involves ruling-out other conditions that could cause the difficulty. For example if a child is very uncoordinated, but has cerebral palsy affecting their motor skills, then they would not meet the criteria for Developmental Coordination Disorder, as their difficulties are explained by their cerebral palsy. Other frequently used 'ruling-out' criteria are a visual impairment and learning difficulty. This is when it gets really tricky, because many of these labels look at areas affecting learning, like dyslexia affects literacy skills, yet to qualify for this label, learning abilities must be typical.

It is confusing, that is why we have written these sections.

Labels - Purpose
The purpose of labels is a good thing - ideally they are meant to help people understand the challenges, so that support and resources can be appropriately directed to the child to help them.

Labels - Limitations
We have heard many accounts of the label being treated, rather than the child. Every child is different, if they have been assessed as needing extra support around a certain area, then that is great, but the child is still the most important source of information about the child, and those closest to them. There are no perfect fits for labels, and we must never stop looking at what else we can learn from the child, so that we can use this knowledge to help them.

Labels - Negative
Most of the labels are about things a child cannot do as well as other children can, or cannot do at all. In most cases the difference in abilities are not the fault of the child. These are not our labels. We have listed these labels because these are the labels given to children, like them or not.

Labels - Incorrect?
Sometimes a child with CVI has previously been given a different label, maybe autism or dyslexia, or an attention disorder. If your child was assessed and met the criteria at that time, then the label was not incorrect, but when the underlying cause is discovered this gives added useful knowledge. As you learn more, like for the many who learn later that their child had undiagnosed CVI, everything needs to be reviewed and re-evaluated in the light of this new understanding.

The processes in the brain are vast and complex, and many different causes and combinations can cause what looks like the same challenges, like clumsiness, illegible handwriting or difficulties with social skills. It can be a very difficult process trying to work out what is going on, and why, especially if the underlying cause is unknown, as is the case with many of the difficulties.

So remember...

  • A label is never a full stop! Even when the label is officially recognised by the WHO, there is always more to learn.
  • A label should help your child, if you feel it doesn't, then you need to review this and think why - maybe there is something else, which means...
  • You need to understand the label your child has been given, don't just accept it, learn about it and decide if you think it is right for your child.
  • A label is just one part of the journey of learning about your child, because...
  • Your child is an inordinately complex being, like we all are, and can't be explained just with a label, so...
  • It may need reviewing, or altering, or removing altogether as something else is discovered, and never forget...
  • The greatest authorities in the world on your child, are your child themselves and those who know them best (you!).

So, labels are a bit of a messy business. The criteria to meet the condition can be confusing, especially where the person has a condition like CVI.

Label - CVI
CVI is a label too.

We have explained that many labels do not have known causes.

CVI is a medical condition and can cause learning, social, developmental and behavioural difficulties. With CVI, the cause and their locations in the brain are often known.

Next page: A-Z Labels

See also Newsletter 24 introducing this section.

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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.