Cerebral visual impairment: ‘look, but could not see’, a group of people who are being misunderstood
Keywords: cerebral visual impairment, cortical visual impairment, brain damage related visual dysfunction (BVD), visual characteristics of CVI, behaviors, performances, raising understanding of CVI, children and adolescents, students with CVI
In Chinese, the idiom ‘turning a blind eye’ (literally meaning: looking, but couldn’t see) is used to describe that some people neglect something, but literally, it means that people could not see although they try to look. This term’s literal meaning could also be used to describe the people with cerebral visual impairment or cortical visual impairment (CVI). Individual differences exist among CVI, thus the ten characteristics listed in the CVI assessment designed by Dr. Christine Roman Lanzy cannot fully describe their situations. Moreover, not every CVI case has all the ten CVI characteristics listed in the assessment. Furthermore, CVI is not confined to any age group, thus CVI is not limited to children. On the other hand, there are also CVI cases in adults and the elderly.
I have been in contact with approximately 20 CVI children and adolescents. Each CVI case has different abilities and performances. From their behaviors and performances, I could then really understand what CVI is!
The factors that account for the great individual differences among CVI cases include: causes of the cerebral visual impairment, extent of the visual impairment, onset (e.g., congenital, postnatal, two years old, six years old, adolescent, adult...), growth background and process, experiences, personality, emotional behavior, preferences, social experiences, intelligence, concept development, language communication skills, listening ability, motor and mobility, other disorders or diseases (e.g. Melas Syndrome has a unique developmental situation). Of course, the factors behind individual differences also include the caregiver/trainer's care, observations, communication and guidance methods, etc. It is really impossible to list out all the factors.
However, almost all CVI cases have one similar characteristic, i.e. under normal circumstances, they would not close their eyes for most of the time like the totally blind. Therefore, in daily life, most of the CVI people will keep their eyes open if they still have usable residual vision, except for the following situations: lack of visual training for a long period of time ever since childhood, sleepy, tired, suffering from drooping eyelids, or have problems in physical conditions, etc.
In some CVI cases, their eyes have no focus when they are looking at other people; or they don’t have eye contact with other people. Even for some CVI people who know how to look at others, yet they don't have real eye contact or interact with others through eye contact. Their eyes appear ‘seeing through’ people.
On the other hand, some CVI cases with better ability can actually have normal eye contact with other people. They seem to be no different from ordinary people, but this would rather give other people an impression that they have no problem with their vision, so they are regarded as normal vision. People will not provide them with adequate care and protection. As a result, they may have troubles at any time in their lives, such as bruises, pinching, confusing the appearance of different people, take away the wrong things, touching other people’ bodies inappropriately with their hands. Subsequently, they would be misunderstood, scolded, or even punished.
Some CVI cases have higher abilities and have little problem with mobility. However, they still have unique difficulties. For example, they cannot identify other people from their appearances; there was even a case in which the child cannot identify his parents. In some CVI cases, they cannot identify objects or pictures. For example, table and the chair have four legs, so it is difficult for them to discriminate the photos of table vs. chair, or find the carton of a drink on the shelf; or consider a large bathing towel as a towel (the small towel for cleaning the face).
Some CVI cases have difficulty in reading and writing. For example, they don’t know where to begin writing, so they often write outside the boundary and the connection of strokes and the structure of the characters are not neat, which is similar to SpLD cases.
I have encountered a very weak CVI student who seemed often closing her eyes or drooping her eyelids. She didn’t have any response or the motivation to learn. But after testing, I found that she could see the small pieces of food in white color that were placed on a white table. When food in white color was placed on the white table, in fact, the color contrast is poor. But if she could still see the food, how amazing! She was diagnosed as blind (ophthalmologist’s report stated that she was blind), but she just needed a glance and she could see the smallest pieces of marshmallow place on the white table within several feet away. Once she saw it, she would immediately reached for it in high speed, and she would not search with her hands like a student with severe visually impairment. Her action of taking objects did not need teacher’s training. It was her spontaneous behavior, so the assessment report really underestimated her visual function. This girl who was reported to be blind by the ophthalmologist’s report still have residual vision for practical use!
The author also found that many CVI students with walking ability can easily enter the room without hitting the door frame, and do not need to reach out to touch the door frame position, and the strange environment that has never been visited is also the same; some people can avoid people/furniture when walking / Wall, or stop in front of obstacles without colliding. These abilities do not require special training. There is another boy who seems to be blind. When he sees the light coming out of the door, he says, "God makes light" and will also imitate the face of the family sitting opposite (this has made his parents know that he still has vision, although they have thought he was totally blind) There are children see someone they look outdated in her front row to follow the characters move (Visual Tracking), also pointed out that people can hand after hiding in furniture.
In short, the performance of these CVI students varies and varies greatly; but these are their spontaneous performances, which have been shown without training.
Therefore, CVI students are easily misunderstood. Some cases’ behaviors are similar to autism or dyslexia (SpLD) and are consequently misdiagnosed and being misunderstood!
If CVI children undergo intelligence tests e.g. WISC (Wechsler Intelligence Scale for Children), since some testing items have a lot to do with the use of vision, their visual performance may affect their total score of their IQ tests. In other words, their intelligence might be underestimated, especially if the CVI children’ visual problems are not obvious and that the children have not undergone visual functioning tests, then the psychologists might not know that the children have problems in visual functioning and usage when they are conducting the IQ tests.
Conclusion
People who work in the fields of special education and rehabilitation services should have a more thorough understanding of the visual functioning and visual performance of the children or clients that they work with, and understand what is meant by ‘cerebral visual impairment’ (CVI) or furthermore, the broader category called ‘brain damage related visual dysfunction’ (BVD), because brain damage may result in abnormal visual functioning and visual performance, depending on the location of the damage.
Whether the visual loss of a child who has brain damage has reached the level of ‘visual impairment’ or not and consequently classified as ‘brain damage related visual dysfunction’, CVI cases are easily misdiagnosed, misunderstood, and their abilities are thus underestimated. Consequently, they are likely to miss the opportunity of appropriate training so that their residual visual functioning could not be fully developed and thus become ‘look, but could not see’. If that’s the case, it would be a great loss.
In this IT era, an expert said that more than 90% of the concepts that we have learnt are through visual input. Therefore, if CVI children try to look but couldn’t see, this would surely have a great influence on their quality of life.
The longer I have contacted them, the more I understand them, and of course I sympathize with them more.
In those areas where functional magnetic resonance imaging (fMRI) is not commonly used in brain functioning diagnoses for patients with brain damage, the actual number of CVI or BVD cases must be more than those who have already been diagnosed. Therefore, this issue surely needs more concern from professionals in the fields of medical, educational and rehabilitation services. More appropriate services should be provided to people who suffer from CVI or BVD.
Remarks
Another article in this blog explains the learning characteristics, methods, teaching strategies, and general guidelines for the care of CVI children with multiple disabilities:
‘Methods to enhance the learning of CVI (cerebral/cortical visual impairment) children with multiple disabilities’:
https://lowvisionvisualimpairmentandcvibvd.blogspot.com/2019/09/methods-to-enhance-learning-of-cvi.html
https://lowvisionvisualimpairmentandcvibvd.blogspot.com/2019/09/methods-to-enhance-learning-of-cvi.html
