Factsheets
These factsheets provide information and practical advice about some of the disabilities you will encounter when volunteering with KEEN. This list is not exhaustive, and every person is different so the suggestions made may not be applicable to every case.
ADHD
ADHD stands for Attention Deficit Hyperactivity Disorder. It is normally used to describe children who have three main kinds of problems:
- overactive behaviour (hyperactivity)
- impulsive behaviour
- difficulty in paying attention
Young children usually have lots of energy and like to be active, but children with ADHD are not just very active but have a wide range of problem behaviours which can make them very difficult to care for and control.
Because they are overactive and impulsive, children with ADHD often find it difficult to fit in and get involved. This impulsive behaviour can show itself during KEEN sessions when the athlete:
- Fails to wait in lines or wait for their turn in games or group situations.
- Interrupts or intrudes on others, e.g. butts into others conversations or games.
- Talks excessively without appropriate response to social restraint.
They may also have problems getting on with other children. These difficulties can continue as they grow up and will some times be more pronounced in adolescents.
Some children have significant problems in concentration and attention, but are not necessarily overactive or impulsive. These children are sometimes described as having Attention Deficit Disorder (ADD) rather than ADHD. ADD can easily be missed because the child is quiet and dreamy rather than disruptive. ADHD is not related to intelligence. Children with all levels of ability can have ADHD.
Autism
Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. Children and adults with autism have difficulties with everyday social interaction. Their ability to develop friendships is generally limited as is their capacity to understand other people's emotional expression.
People with autism can often have accompanying learning disabilities but everyone with the condition shares a difficulty in making sense of the world.
There is also a condition called Asperger syndrome, which is a form of autism used to describe people who are usually at the higher functioning end of the autistic spectrum.
What are the characteristics of autism?
People with autism generally experience three main areas of difficulty; these are known as the triad of impairments.
- Social interaction (difficulty with social relationships, for example appearing aloof and indifferent to other people)
- Social communication (difficulty with verbal and non-verbal communication, for example not fully understanding the meaning of common gestures, facial expressions or tone of voice)
- Imagination (difficulty in the development of interpersonal play and imagination, for example having a limited range of imaginative activities, possibly copied and pursued rigidly and repetitively).
In addition to this triad, repetitive behaviour patterns and resistance to change in routine are often characteristic.
Tips for working with people with Autism
1. Be careful with metaphors, irony, sarcasm, etc.
People with Autism Spectrum Disorders have a very literal understanding of language. Many misunderstand expressions such as "toast the bride" and are very confused by teasing and sarcasm. Keeping language concrete and to the point will assist with comprehension.
2. Gestures
Autistic children with limited verbal communication can benefit by a demonstration in non verbal terms of what is expected from them. This can take a variety of forms, from a simple hand gesture to a full acting out of the action to be performed.
3. Allow extra processing time
People with Autism often take longer than others to process verbal instructions. Allow extra time before you repeat the instruction. Repeating an instruction too soon can interrupt the processing of the person's response.
4. Don't demand eye contact
Some people with Autism cannot process visual and auditory input simultaneously. They can look at you OR they can understand what you are saying. The fact that they are not looking at you does not mean that they are not listening or attending.
5. Keep your eye on the "big picture"
While involvement with the structured sessions is the primary goal, individual athletes will react in different ways to group activities. Some athletes will refuse to become involved in group activities and this should not be construed as failure on the part of the volunteer. An athlete can have a meaningful session through interaction with the volunteer on a one to one basis. Our primary goal is that they should enjoy their recreational time.
6. Use a team approach
Autistic children can become very easily frustrated. They cannot communicate their frustration in a way which others can easily understand. Remember that other volunteers may have had more experience with particular athletes, and they will be available to help if you encounter difficulties. Do not be afraid to ask for help and advice.
7. Don't take it personally
People with Autism Spectrum Disorders have a deficit in social understanding and at times they may appear to be rude or self-centred. This does not spring from a desire to cause difficulties, but simply from a lack of social understanding. People with Autism will often need to be taught explicitly what other people simply know from being in social situations. It is important not to assume that the person understands how they "should" behave. Very often they do not. There are many reasons why things may go wrong with autistic children, and should not be taken as a reflection upon your ability as a volunteer.
Cerebral Palsy
Cerebral palsy, also known as CP, is a condition caused by injury to the parts of the brain that control our ability to use our muscles and bodies. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. Often the injury happens before birth, sometimes during delivery, or, soon after being born.
CP can be mild, moderate, or severe. Mild CP may mean a child is clumsy. Moderate CP may mean the child walks with a limp. He or she may need a special leg brace or a cane. More severe CP can affect all parts of a child's physical abilities. A child with moderate or severe CP may have to use a wheelchair and other special equipment. Sometimes children with CP can also have learning problems, problems with hearing or seeing (called sensory problems), or learning difficulties. Usually, the greater the injury to the brain, the more severe the CP.
Down's Syndrome
Down's or Down syndrome is a condition which arises at conception. In its commonest form each cell in the body has an extra chromosome 21, making 47 in all. This affects the growth of the developing baby. Approximately 1 in 1000 children in the UK are born with Down's syndrome which is the largest single cause of learning disabilities.
Children born with Down's syndrome vary widely in terms of their abilities, although only a minority will have severe learning disabilities. Because people with Down's syndrome have particular physical characteristics, a diagnosis is usually made at or soon after the birth. However, it is not really possible to predict future development. Many children with Down's syndrome have exceeded other people's expectations in terms of their skills and abilities. Many lead ordinary lives, for example, holding down a job and living in their own homes.
There is a popular belief that children and adults with Down's syndrome are sociable, happy and co-operative and while this may be the case for many people, this does not necessarily apply to everyone. People with Down's syndrome are individuals and their characters and personalities vary and will be shaped by many different factors.
The characteristic physical features of people with Down's syndrome are a smaller rounder face, an extra fold over the eyelids, floppy muscles and looser joints. Children with Down's syndrome are often not as tall as their peers and may have a tendency to be overweight.
Coaches should remember that many of our athletes have conditions in addition to Down's syndrome, so profile cards should be studied carefully.
Fragile-X Syndrome
Fragile X is an inherited condition in which a defect in the X Chromosome may cause a learning disability. It is named after the "fragile" site on the X-chromosome.
About 1 in 3000 males and 1 in 6000 females have Fragile-X syndrome, with females generally being less severely affected than males. It is the second most common identifiable cause of moderate and severe learning disabilities in males and the most common form of learning disabilities that can be directly inherited. Many Fragile X children and adults remain undiagnosed because they only have mild learning disabilities. This means that they don't get the help and support they need.
A recent study of children and young people with Fragile-X syndrome found that they had certain strengths as well as difficulties. This information can be used to ensure that children with Fragile-X are encouraged to build on these strengths in order to reach their full potential.
Some of the difficulties associated with Fragile-X are found in males and females. Both groups may be restless, may find it difficult to concentrate and may find it difficult to hold on to information. Their verbal skills (eg vocabulary and comprehension) are often better than their non-verbal skills (eg understanding emotions).
Other difficulties are more common in one gender. Boys tend to have more behaviour problems. Girls, on the other hand, are more likely to be shy and socially withdrawn, and more likely to suffer from anxiety and depression. They also have problems at school with subjects such as arithmetic, geography and physical education.