The effects of childhood brain trauma may not be apparent for many years, but they can be severe and life-long
When a child acquires a brain injury as a result of a major accident or illness, such as a brain tumour, meningitis or stroke, you are likely to be aware of the incident and their admission and treatment in hospital. However, there are also thousands of children and young people whose disability is hidden and undetected because they did not go or were not admitted to hospital, or their injury was long ago and has been forgotten. No one is aware that they too may have acquired a brain injury.
It is estimated that between 40,000 and 50,000 children and young people in the UK acquire a brain injury each year. An acquired brain injury (ABI) is an injury to the brain that occurs after a period of normal development and can be a result of an accident (including “shaken babies” and medical negligence), illness (such as meningitis or encephalitis), stroke, tumour, poisoning (including brain injury as a result of substance misuse – directly or indirectly), or non-surgical interventions (such as radiotherapy and chemotherapy).
Approximately 89 per cent of these children and young people will have no physical sign of their disability, and may initially appear and present in the same way as other children in their peer group. Many parents may not even be aware that their child has acquired a brain injury, or may not have read the “bump on the head” letter given to them on discharge from the emergency department. When the accident or illness happened long ago, it is often perceived by clinicians and parents to be of little importance, yet problems may start to occur weeks, months or even years after the initial incident.
Brain development happens over a long period of time and a person’s brain does not finish fully maturing until they are in their early 20s; indeed, a great deal of brain development happens in adolescence as a child develops into an adult. What if the brain was damaged years previously, though? Imagine buying a computer and months later going to use a programme, only to discover that it does not work properly and you cannot find out where the problem is or how to fix it. With brain injury, it can often be impossible to say what damage may have been caused until the brain is fully mature and the young person is in their early 20s.
Many professionals will say that they have worked with a child who had learning or behavioural difficulties, but they just could not put their finger on exactly what the diagnosis could be. Many symptoms of an acquired brain injury are similar to those of children with attention deficit hyperactivity disorder (ADHD) or those on the autistic spectrum, and this can sometimes lead to misdiagnosis. This in turn brings about greater problems, as the support that a child or young person with an ABI needs in school is very different to children with other special needs.
An acquired brain injury can lead to a complex set of difficulties that are often hard to diagnose or identify. Some of the most prevalent manifestations of an acquired brain injury include:
- difficulties with social skills, such as being unable to make and keep friends, not understanding jokes and not understanding the unwritten rules of social interactions
- perceptual difficulties – visual difficulties can occur as a result of an ABI, and may even go undetected for some time, especially if the child acquired the brain injury during early childhood. The child may be misdiagnosed as having dyslexia or dyspraxia
- attention and concentration problems – similarly to those with ADHD, children and young people with an ABI often have difficulty concentrating for long periods of time and they can find it difficult to initiate tasks
- communication difficulties – the child may have difficulties in processing different types of communication, and may, therefore, not write down homework correctly, or misinterpret what is required. The brain can take so much longer to take in, process, think about and respond to information following an ABI, so the child might appear to be slow and not motivated when compared to his/her peers
- problems planning and organising – for many children with an ABI this can manifest most often after the transition to Key Stage 3. During their time in Key Stages 1 and 2 they are in a very organised and structured environment, which is ideal for a child with an ABI. Often these children will get a glowing report from their previous school and not show any signs of difficulties. However, Key Stage 3 students are required to plan what books they need, know where they have to be, and prepare and organise themselves to get tasks such as homework done on time. A young person with an ABI could find this very difficult and may present as being disorganised, badly behaved or lacking in motivation
- fatigue – the brain is responsible for everything we do, and if it is damaged, then even the simplest task can be a battle for the child, using up enormous amounts of energy. This results in the child tiring more easily despite sleeping well at night. This chronic tiredness suffered by the child may mean a slow decline in performance as the day, week or term goes on, which can be misinterpreted as a lack of engagement and motivation or a disinterest in lessons
- memory problems – children and young people with an ABI may have difficulties with their short term memory and in retaining new learning. This means that, over a period of time, the child may gradually fall further behind expected attainment levels within the National Curriculum and struggle to keep up with their peers academically. They may also have difficulty in remembering where to go if there has been a room change or even remembering simple instructions
- behaviour issues – for some children there can be a significant change in their behaviour following an ABI, which is often misdiagnosed as a particular form of social, emotional and behavioural difficulty. Additionally, the loss of ability, compared to pre-injury, can lead to tremendous difficulties with a decreased lack of self-esteem and a lack of confidence. The child may also find him/herself in trouble for the first time because s/he is missing deadlines or getting tasks wrong. For the child who has never been in trouble at school before, this can, in turn, lead to greater behavioural difficulties, sometimes resulting in exclusion.
It is important to remember that the child may have some or all of these difficulties to differing levels of severity; there is no check list for a child with an ABI and the individual’s symptoms can manifest as a mixture of many different difficulties that are hard to diagnose.
It is also important to be aware that the child’s prior learning and past experiences may influence their eventual outcome. The child will have had a period of prior learning before acquiring their brain injury, during which time they will have been able to learn at their optimum level. The age of the child at the time of injury will influence their ability to adapt to their potentially reduced cognitive ability. It is a fallacy that young children have a better chance of making a full recovery following an ABI, for two reasons: first, because the cells of the brain, once damaged, do not regenerate and therefore a full recovery is just not possible; second, the older the child is, the more learning and development s/he will have acquired and the more s/he will have to fall back on. Following an ABI, the child’s ability to learn new information and processes may be impaired.
For many children and young people, there will be noticeable differences in their behaviour and character following an ABI, but these differences may be so subtle that it is hard to detect exactly what the issues are.
Many children in school today could have acquired a brain injury in their early childhood that has been forgotten or undetected; these children may present as disobedient, disaffected and lazy pupils who “must try harder”, but the truth is that they are trying their best and need appropriate support to reach their full potential.
An adult who acquires a brain injury will often have some kind of community rehabilitation carried out by a team of specialist therapists and support workers; for children and young people who acquire a brain injury, school is where they will get their main rehabilitation. However, professional training for general and specialist teaching professionals does not include acquired brain injury, which means that those who are responsible for rehabilitation in school may not even be aware of the child’s difficulties, or have the specialist knowledge to support them.
There is, however, much that can be done to support these children and young people, and SEN practitioners can help them achieve their potential by:
- educating themselves about acquired brain injury
- undertaking assessments of concentration and memory
- asking appropriate questions of parents if there is a suspicion that a child’s difficulties may be as a result of an ABI acquired in early childhood
- understanding that these children and young people need a very different approach to supporting them in an education environment than other children with SEN.
It is also crucial that practitioners pass on their knowledge and understanding of ABI to colleagues and other professionals working with children and young people, to help raise awareness of this hidden and often disregarded disability.
Louise Wilkinson is from the Child Brain Injury Trust, a charity which provides support, information and training on the effects of traumatic injury on the developing brain to families and professionals: