CVI & Behaviour

Many people with CVI are unaware that they have it. They find endless challenges performing basic tasks, that other people seem to find so simple, for example:

• not recognising people and appearing to ignore them, causing offence
• not reading facial expressions and appearing to lack empathy
• not being able to put things away and appearing untidy or lazy
• bumping into people, appearing clumsy
• striking people (when feeling physically threatened, especially younger children) appearing aggressive
• dropping and smashing things, appearing careless
• not concentrating in work / class, appearing inattentive, distracted or bored
• coming across as uptight or grumpy, because it's hard to relax and enjoy themselves
• always seeming tired appearing lazy or uninterested
• not having much energy appearing as a reluctance to do physical activity

Whether CVI has been present from birth, or was due to an event or injury sustained later in life, the period where the visual impairment was unknown (agnostic period) will be challenging. This includes where there has been possible labelling (for example of autistic spectrum disorder, attention deficit disorder, dyspraxia), no diagnosis, or a correct behavioural diagnosis, but without the required level of understanding or support.

Written below is a short account of how certain behaviours can evolve with CVI, whether combined with other considerable learning and medical challenges, or alone in an intelligent and articulate individual. This information has been compiled from first hand experiences, and we are very interested to hear your stories.

The Evolution of Behaviours in Relation to CVI and the Individual

Starting Point

The starting point is when the CVI occurred, not when it was first noticed, reported or diagnosed, which will be one of either

1) Birth
2) Following an Event / Injury

Agnostic Period

This is the period from the starting point (above) to the point when the CVI is fully understood in relation to the individual.

During the agnostic period, the individual, and those closest to them, are unlikely to best understand the challenges they face. It is likely that they will have no idea that their 'reality' is different to that of anyone else.

This period for many will stretch years, and cover key stages of social development.

During the agnostic period, behaviours fall into two categories. Those formed from 1) a fear of injury, and those formed from 2) a fear of social embarrassment.

1) Fear of Injury

The behaviour starts when the brain thinks there is an imminent physical threat. For many reasons due to CVI, the threat may not be real, however it is real to the person. When we feel physically threatened we will automatically protect ourselves in a number of ways:

• Run away
• Stand still and close our eyes
• Protect our head with our arms
• Curl up in a ball
• Strike / attack
• Scream
• Panic
• Cry

These behaviours will not make sense to someone in the same situation who does not have CVI, because to them there may be no physical threat.

2) Fear of Social Embarrassment

This only applies to those with self-awareness, but by proxy can apply to carers and parents, which would have an impact on their charge.

For all people with CVI, the challenges of developing healthy social relations with other people presents unique challenges. The examples are endless, but to demonstrate how these can affect our behaviours let us use a few examples.

These true stories are heartbreaking. With CVI the biggest challenges are people:

• People move
• People change
• People are unpredictable

Social relationships are as important to people with CVI as anyone else, they can just be harder. Without understanding their condition, people with CVI can become:

Socially Isolated and

Socially lacking in confidence

Enlightened Period:

Only with a complete understanding of your condition can you start to change the direction of your behaviours, which to this point have been constantly reinforced, creating deep rooted subconscious anxieties. This requires:

1) An understanding of how behaviours have related to your visual impairments, which means you first have to understand CVI. This understanding is ongoing and evolving.

2)Strategies to help you manage more effectively. These may include:

• mindfulness to help manage anxiety
• visualisation, to help prepare for events and activities.
• Confidence building
• Helping parents and loved ones understand the person's alternative reality, and different needs, and not to apply what is 'normal' and 'expected'
• A strategy for personal space, where anxieties can be more effectively managed.
• Understand the behaviours as fears

3) Support - primarily from those who love you most, but ideally with caring professional input.

4) A plan, using baby-steps of controlled exposure "move from the known, to dip a toe into the knowable unknown".

5) An understanding that the plan is ever evolving and constantly needs to be adjusted in line with

• the individual,
• their life and challenges,
• their confidence
• their ambitions and aspirations
• their growth and development
• their improving vision (related to slowly progressing improvement where there is delayed visual maturation, especially in childhood)

In this section...

• CVI Meltdowns
• Safe Places

• Contents