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When children are very young, parents understand their needs from the way they behave. If children cry, they could be hungry, thirsty, lonely, frightened or in need of clean clothes. As they get a little older, children learn to express their needs through facial expressions, gestures (such as nodding and pointing) and sounds. Between 12-18 months of age, they begin to use words. From a very early age, children also learn to understand other people. They learn that words, voice tone, facial expressions and gestures are all part of the messages other people give them.

Sometimes children do not develop speech as easily as others. Sometimes, they do not find it easy to understand the meaning of words or gestures. These problems are examples of communication difficulties. When a child has a communication difficulty, it may be necessary to get help from teachers, speech pathologists and other professionals.

What is communication?

The word ‘communication’ is used to talk about how people share information (including their thoughts and feelings). Often when people think about communication, they think about talking and listening. However, people also send information by:

• the tone of their voice
• the look on their face (facial expression)
• the way they use their hands (gestures)
• the way they move and hold their body (body language).

What is a communication problem?

A communication problem occurs when children have difficulty with:

• speech sounds (saying the words clearly or correctly)
• speaking fluently (without hesitating too much or stuttering)
• using words and grammar (rules about word order and use)
• putting words together to let others know what they think or want
• understanding what others say.

Learning to understand and talk occurs gradually. Most children have learned basic talking and understanding skills by the ages of 3 to 3½ years. By the time they start school (around age 5 years), their speech will also have more formal structure, including full sentences and descriptive language. Opportunities to practise talking and listening with adults and other children help children to develop their communication skills.

Communication problems may affect a child’s ability to speak (speech disorders/impairments) and/or the ability to understand and use spoken language (language disorders/impairments). Professionals talk about these as expressive and receptive communication difficulties.

Children with an expressive communication or language problem have trouble giving (or expressing) information to other people in a way that other people can easily understand. They may have trouble learning and remembering:

• words, such as the names of things
• the rules of grammar and how to connect words to make sentences
• how to use language to meet their needs (such as to ask questions, describe events, give instructions or tell a story).

A receptive communication problem means that children have trouble understanding (or receiving) the meaning of information being given to them. There may be difficulty with understanding:

• individual words, including words that describe things (such as big/little, all, different)
• phrases
• information when it is put into sentences
• questions
• longer instructions
• descriptions.

(Note: receptive communication problems can be due to hearing problems)

Many children with receptive communication problems rely on facial expressions, tone of voice, gestures or body language to understand what they are told. They may also gain understanding from watching other people and from the use of routines.

There are many types of communication difficulties. These include:

• speech delay/disorder/impairment
• language delay/disorder/impairment
• expressive language disorder
• receptive language disorder
• stuttering or dysfluency
• verbal dyspraxia (difficulty in making muscle movements that are needed for speaking clearly and quickly)
• semantic/pragmatic disorder (this affects a child’s use of language for social purposes)
• Central Auditory Processing (CAP) disorder (this affects a child’s listening and understanding of language)
• dyslexia.

Communication problems can be mild, moderate or severe. Sometimes, a communication difficulty will happen as part of a syndrome or disability. Your child’s support needs will depend on the type of communication problem and how severe or complicated it is.

Causes of communication problems

Parents often want to know why their child is having difficulty learning to understand and/or talk. It can be difficult to pinpoint a particular cause.

In some cases, there are reasons for a child’s communication problems that can be related to one or more of the following:

Physical factors

• Children with low muscle tone (hypotonia) have trouble coordinating (moving) the muscles of the mouth and tongue to produce clear sounds.
• Structural problems in the mouth, throat and nose, such as cleft palate prevent clear speech sounds.
• Conditions that affect nerve and muscle control, such as muscular dystrophy or cerebral palsy, may make speech difficult or impossible.
• Repeated ear infections, affecting hearing.

• Some syndromes or disabilities, such as autism, affect the development of communication skills.
• Hearing impairment may make it more difficult for children to develop speech and language. They may require extra support or specialised teaching.
• Intellectual delay and disability will slow the development of speech and language.
• When we speak with each other, much of what we ‘say’ is actually communicated in our facial expression, hand gestures and body language. Vision impairments may reduce the amount of information that a child receives during a conversation. This can lead to communication difficulties.

Acquired brain injury

• Acquired brain injury may hurt parts of the brain that deal with communication.
• Children with an acquired brain injury may lose the ability to speak or understand language. This loss may be temporary or permanent, depending upon the type of injury.
• Children with an acquired brain injury may develop specific learning difficulties that make it harder to learn to organise and express their thoughts.

• lack of experience or stimulation
• limited opportunities to talk with others.

What you can do

• Parents know their children better than anyone. If you feel that your child is struggling to talk or understand what you say, speak to your doctor or local community health centre, child care, child health nurse, preschool or school staff or make an appointment with a speech pathologist.

Colds, infections, allergies and flu can temporarily reduce hearing. However some children have permanent hearing loss. This may be due to serious illness (such as meningitis), genetic problems (such as Usher’s syndrome) or untreated ear problems. In many cases, the cause of a hearing loss is not known.

There are a range of professionals who can help children with hearing loss develop their skills and talents. These include your local family doctor, paediatrician, ear nose and throat specialist, audiologist, speech pathologist and teachers. Staff at local community health centres and early intervention services for children with additional needs can also provide help.

Sometimes, special teaching methods may be needed to develop communication skills. There may be local centres and services especially for children who are deaf or hearing impaired.

Alert:
Consult your doctor or an audiologist if there appears to be a sudden change in your child’s hearing. Some conditions require prompt treatment to prevent permanent damage.

What is hearing loss (impairment)?

Having a hearing loss (impairment) means that a child has lost some hearing in one or both ears. Hearing impairments are described according to how much hearing has been lost. Loss is usually explained as mild, moderate, moderate to severe, severe or profound.

• Mild hearing loss (impairment)
  The child can hear normal conversation but may not hear whispers or soft sounds.
• Moderate hearing loss (impairment)
  The child does not hear normal speech. However, he will hear if a person speaks in a loud voice. A moderate hearing impairment will affect a child’s language and/or speech development because not all words and sounds are heard clearly.
• Moderate to severe hearing loss (impairment)
  Speech must be very loud to be heard. Even when speech is loud, not all words and sounds will be heard clearly. Speech and language development will be affected and the child will benefit from specialised professional help.
• Severe hearing loss (impairment)
  The child will not hear normal conversation and will only be able to pick out a few loud sounds and words. Speech and language development will be affected and specialised professional help will be needed.
• Profound hearing loss (impairment)
  No sounds can be heard without the help of a hearing aid. In some cases, a cochlear implant will be used to increase the amount of sound a child can hear. Speech and language development will be affected and professional assistance will be needed.

Deafness is another name for profound hearing loss. However, people who call themselves ‘Deaf’ usually are identifying themselves as members of the Deaf Community. This means that they use Auslan (Australian Sign Language) as their first language. Not all people with a severe or profound hearing loss use Auslan.

Different types of hearing loss (impairment)

Professionals usually talk about three different types of hearing loss.

• Conductive hearing loss happens when there is some block to the transfer of sound from the outer ear to the inner ear (cochlea). In some types of conductive loss, hearing levels may change gradually over time or they may change from day to day. Middle ear infections cause conductive hearing loss.
• Sensorineural hearing loss happens when there is damage to the inner ear (cochlea) or to the auditory (hearing) nerve. This type of hearing impairment may affect:
  • how loud the sound seems
  • how clear the sound seems.
• Combined conductive and sensorineural hearing loss (sometimes called mixed loss) happens when sound is not transferred from the outer to the inner ear (cochlea) and there is also damage to the inner ear or auditory (hearing) nerve.

In addition, professionals talk about whether the hearing loss is in one (unilateral) or both ears (bilateral).

There are also disorders that involve listening and understanding, such as Central Auditory Processing (CAP) Disorder. CAP Disorder is also referred to as Auditory Processing Disorder.

Causes of hearing loss (impairment)

There are many causes of hearing loss. These may include:

• repeated middle ear infections
• holes in the ear drum
• disorders that damage nerves involved in hearing (degenerative disorders)
• inherited condition or genetic cause, such as Usher’s syndrome
• infections that occur during pregnancy such as rubella (german measles) and toxoplasmosis
• infections after birth, such as meningitis, mumps
• exposure to very loud noise over long periods
• abnormalities of the head and face that affect the structure of the ear
• premature birth, especially when the birth weight is less than 1500 grams
• head injury including loss of consciousness or skull fracture.

However, in some cases it may not be possible to identify the cause of deafness or hearing loss.

Treatment

• The treatment for hearing loss depends on the reason for the impairment, and the severity of the impairment.
• Most conductive hearing losses can be improved by medication or surgery.
• Sensorineural hearing loss usually cannot be treated. Different types of technology are used to help children with permanent hearing loss. Hearing aids and cochlear implants are used most often to improve hearing in children with permanent disabling hearing loss.

Hearing aids
A hearing aid is a device that makes sounds louder. Hearing aids are fitted to match the hearing loss of your child. Hearing aids will increase your child’s hearing but will not make hearing normal.

Different types of hearing aids are named according to where they are worn. Hearing aids can be:

• in-the-ear (ITE)
• in-the-canal (ITC). This is the passage between the outer and middle ear.
• behind-the-ear (BTE)
• body level hearing aids that clip on to a belt or clothing
• hearing aids that are built onto the ear pieces of spectacles (eye glasses).

In school classrooms, FM soundfield amplification systems can be used to make the teacher’s voice louder for students with a hearing loss or who are deaf.

Cochlear implants
A cochlear implant is sometimes called a bionic ear because it uses technology to allow the person to hear. A cochlear implant is designed to stimulate the surviving nerve cells in the inner ear (cochlea). This allows messages about sound to be sent from the inner ear to the brain.

Some parts of the cochlear implant (the speech processors) are worn in a pocket, belt pouch or body harness. Other parts are surgically fitted into the head and inner ear.

Methods of communication

People with hearing impairments may communicate in different ways.

• Many use speech as their main method of communication. However, they usually rely on hearing aids or cochlear implants to help them do this.
• Other people use a type of signed or written language.
• Some people use a combination of signing and talking known as Total Communication.
• In Australia, people with hearing impairment may learn Auslan, the language of Australia’s Deaf Community.

Auslan
Auslan is the sign language that has developed in the Australian Deaf Community. Auslan is a unique language that uses hand signs, body movements, facial expressions, mime and gestures. It is not another form of English.

Methods to support use of English
There are different ways that people with hearing impairments can communicate using English.

• Signed English is a way of communicating in English using signs for each English word. Often, a person speaks in English and signs the same message while she speaks. This is an artificial system used in schools to teach English to hearing impaired children.
• Fingerspelling uses set hand positions for each letter of the English alphabet. This way, words can be spelled out using the fingers and hands. In Australia, the fingerspelling alphabet uses both hands. In other countries, like the United States, this alphabet requires only one hand.
• Lip Reading or Speech Reading is used by some people with hearing impairment when speaking with people who do not sign, fingerspell, etc. Usually, a person will watch facial expressions and body language as well as lip movements.

Using the telephone

People with hearing impairments can use a special telephone called a teletypewriter (TTY). A TTY is a typewriter or computer that is connected to a telephone or modem. This means that people with hearing impairments can use the telephone by sending and receiving typed messages to other people with TTY connections. Sometimes you will see a TTY telephone number listed for some services.

When people with a hearing impairment wish to contact someone who does not have a TTY connection, they can use:

• a fax
• e-mail
• the Short Message Service (SMS) – text messages sent between mobile phones
• the National Relay Service.

The National Relay Service can help by providing:

• Voice Carry Over (VCO). VCO is for people with hearing impairment who are able to use their voice to speak but cannot properly hear what is said to them over the telephone. When Voice Carry Over is used, the relay officer at the National Relay Service translates information spoken to the person with hearing impairment into typed messages and sends it to their teletypewriter.
• Hearing Carry Over (HCO). HCO is for people who can hear but who cannot speak clearly enough to communicate over the telephone. Messages from the person with speech impairment are typed and sent to a relay officer from the National Relay Service. The relay officer then reads the message for the other caller.

Dual sensory loss or deafblindness

• The combination of hearing and vision loss is often referred to as ‘dual sensory loss’.
• Most children will have some degree of hearing or sight. Very few are both profoundly deaf and totally blind.
• The term ‘Deafblind’ is used for children who are totally blind and profoundly deaf. Some people also use this term when speaking about children who have both a significant hearing loss and a significant vision loss but may have some degree of hearing or vision.
• Individuals will have different needs depending upon the combination of hearing and vision impairments affecting them.

What you can do

• See a doctor promptly if you feel that your child is not responding to sounds, and ask to be referred for a hearing test.
• In some places, you can visit your doctor or local health clinic for a hearing screening.
• There may be an audiology service or clinic in your local area. Many audiologists do not require a referral from a doctor.
• However, if you are not sure about your choices, your doctor or the staff from local community health services can advise you. They can help you make an appointment with an audiologist (hearing specialist) in your area.
• See a doctor if your child complains of pain in the ears. (Young children may cry and pull on their ears if they are not yet able to talk.)
• If your child wears hearing aids or has a cochlear implant, keep the equipment clean and cared for. Teach the child to do this as well.
• Even if your child has a recognised hearing impairment, he will still need regular hearing checks, at least once a year.
• Some parents find it helpful to join support groups. Some groups are listed at the end of this topic.

Preschool and school

At preschool or school, teachers will think about seating and classroom acoustics.

• Teachers will also think about special needs for sound amplification, communication devices and changes to their teaching.
• Depending on the needs of your child, teachers may get extra help in the classroom or advice from visiting specialist teachers.
• Parents can assist teachers by giving them all necessary and up-to-date information about their child’s hearing.

There are different ways to teach communication to children with hearing impairments. These include the:

• Bilingual/bicultural approach using Auslan
  In this approach, children are taught the two languages of English and Auslan. They learn the different cultures and concepts that are part of each language.
• Oral/aural method
  This approach concentrates on developing spoken language in the child with hearing impairment.
  • The child is able to listen to and understand what others say by using hearing aids or cochlear implants.
  • Usually, this method requires intense teaching on a one-to-one basis, especially if the hearing loss is severe.
  • Auditory/Verbal Therapy is one method of Oral/Aural teaching that is used to help children with hearing impairment learn listening skills.

• Total communication
  Total communication is an educational philosophy that uses all types of communication including signed language and speech.

The approaches selected will depend upon your child’s degree of hearing loss, personality, age and general abilities.

Finding out that your child has a disability, whether at birth or after an illness or accident, is one of the most shattering things that can happen to parents. You may go through all of the emotions that people feel after a major loss – the loss of the child you expected to have, the loss of your dreams for your child’s future, the loss of the your child’s quality of life, the loss of your way of life.

When these losses happen unexpectedly there is the added shock of things going wrong at a time of life when you expect every thing to go well. There are such big adjustments for parents and families to make that it is no wonder it causes stress and puts pressure on your relationships.

Coping with disability

Every child is different and every disability is different so how you cope will depend on your own particular situation. There are differences in the kind and severity of disability and also differences in experience of grief and ways of coping. Families can have children with very similar disabilities but learn to cope very differently depending on their own situations, finances, and the support they get from other family and friends.

Quality of life

• Children with a disability can lead positive, happy lives and bring joy to themselves and many people.
• Quality of life is not about ability – we all have different abilities.
• Quality of life is about your child feeling well, being safe and comfortable, having experiences to enjoy, feeling that she is a lovable person, and having some things that she can feel proud of being able to do.

Parents’ feelings

At first you may go through the stages of grief that everyone experiences after a loss. These can include shock, disbelief, anger, blame, guilt, questioning of why it happened to you and your child, and panic or fear that you will not be able to cope.

These feelings can (but not necessarily) come back at different stages through your child’s life as new losses happen. For example, the loss of ability to go to the local school or have friends, or become independent. So while you can achieve some healing, there is not just one loss but losses that happen over and over.

Take time to grieve when you need to. You do not have to bear this burden alone; there is much help available to you in the community.

How well you cope and heal depends on lots of things. These include:

• what sense you are able to make of what happened (what you tell yourself about it) – this can be related to how well it was explained to you and what the cause was.
• the amount of support you have from family and others, including service providers and other parents.
• the relationship you are able to build with your child.
• the quality of life your child is able to have (even children with very big problems can have enjoyment of their lives).
• the effect it has on your family life.
• the effect it has on your working life,
• and, for some people, support from their religious faith.

Sometimes it is hard to realise how far you have come in healing. Think about when you first found out your child had a problem. How did you feel then? How were you coping? Then think about how you feel and are coping now. You might find you have come a long way.

Grief that does not heal

If your grief does not get better over time it will affect the way you care for your child, your other children, yourself and your relationships. If this happens to you it is important to get some help to work through your feelings. Some signs that grief is not resolving include:

• if you are stuck with memories of the crisis and can’t seem to get away from them
• if you can’t really accept your child as he is, but still believe that he will have great achievements in ways that he cannot
• if you continue to be very angry or feel very guilty
• if you are still looking for a reason why it happened, after you have had all the possible information
• if you still, after time, cannot see anything positive about your child’s life (or if you cannot see any of the problems but think of it all as a blessing).

If you still have any of the above feelings after a year or so, it is worth talking it over with someone.

Parents’ needs

This is your child and you have the right to say what you want for your child and to be heard. Here are some of the rights you have.

• To go through the process of looking for a cure if you want to, even if your doctor says there is nothing that can be done. If your doctor does not support you in this, then maybe you need a different doctor. (However if you feel the need to keep on looking when you have had the same news several times, you may need some help to move on to how best to help your child rather than looking for a ‘cure’).
• An explanation of what has happened and why, as often as you need to hear it.
• Information about your child’s condition and how it will be managed, and to feel you can have some control of this.
• Encouragement.
• Respect.
• For your child and you to be treated with dignity.
• Privacy.
• Some breaks from caring for your child (respite).
• Continuity of care from a team of care providers.
• The support of others who have had similar experiences, such as a support group of parents.

What your child needs

• Information about what has happened and what is going to happen in day to day care and treatment.
• To be able to ask questions.
• To be treated with respect.
• To know the words about his disability.
• The opportunity to achieve as much as he can.
• The opportunity to have as much say as possible over what happens to his body.
• To be valued as a person.
• The opportunity to have friends if possible.
• To be helped to deal with being seen as different by other people. To be helped to overcome discrimination.

Your relationship with your partner

Having a child with a disability can put stress on the parents’ relationship. It is important to take time to care of your relationship for your children’s sake as well as your own.

It is easy, especially at first, to be so overwhelmed by the challenges that you devote all your time and energy to the child with the disability and neglect other family relationships. Investing time in the other relationships in your life is just as important to the child with the disability as it is to care for that child.

• Share your feelings with your partner and listen to his/hers.
• Sharing the daily tasks can be as important as the emotional support – it says “we are both in this together”.
• Make time for your own relationship – this may seem hard to do but it is very important.
• Do not forget about other children you may have. They have as much right to your love and affection as your child with disability. Time spent with them will help prevent them from feeling ignored and result in less ‘acting out’ behaviour. See the topic Disability – brothers and sisters.

Many parental relationships do break down after the birth of a child with a disability, or when a child becomes disabled. It is important not to see this as a failure, but seek support for yourself and your relationship.

Grandparents

The support of grandparents can make a great difference. However there can be special challenges when a grandchild has a disability.

• Sharing feelings and grief so you can support each other will usually help parents and grandparents. This can enable the grandparents to be a very real support to you and often to the other children in the family. The emotional support that grandparents can give if they can accept the child can make a great difference.
• Grandparents feel pain both for their own children and their grandchild and may worry about the future. They may not want to accept that the child has a disability and may act as if it has not happened to try to avoid the pain.
• Grandparents are suffering from the loss at the same time as parents are, and may not be able to offer you the support you need.
• Sometimes the grandparents may blame one of the parents – especially the mother.
• Grandparents may feel that they have made their contribution to child rearing but that they are now obliged to help because of the need.
• Make sure that they have information about the disability and the treatment available.
• Respect their feelings about what they can reasonably do to help.
• Grandparents from some cultures may find it harder to accept disability. It could be helpful to get support from a community leader.

Coping with prejudice

People who have a disability are at greater risk of being teased, bullied or ill-treated. You can help your child to deal with this.

• Choose childcare, preschool and schools with policies and active practices to deal with discrimination. Ask what the policies are before you enrol your child.
• You might ask the teacher for the opportunity to tell the class about your child and answer any questions.
• Give your child information about her condition so she can answer questions openly and clearly.
• Help your child to find children to play with who can do the same sorts of things that she can (even if she is in a ‘normal’ school) so she can develop friendships on an equal basis.
• Give your child some ways to respond to teasing. You might practise them with her, eg hold her head up and ignore it, pretend there is a magic screen around her so it can’t hit her, stay near a group etc.
• Let your child know that if she is being bullied it is important to tell an adult.

Sometimes people with a disability are not included in activities that they are able to do. Others may not notice what they can do, or make assumptions that the person can’t do anything. Make sure your child’s teachers are aware of her abilities as well as her ‘problems’ and that they encourage others to include her.

What you can do

• Take care of your health. Make sure you get breaks when you can – caring for a child with a disability can be very demanding. Accept offers of help.
• Try to focus on the things that are positive about your child – what he can do, rather than what he can’t.
• Try to let go worries about the future and think about the day to day small successes.
• Value your own personal strengths for coping, especially a sense of humour.
• Make the effort to keep in touch with supportive family members and friends.
• Try to find the balance between protecting your child and allowing him to be as independent as he can. All children need the opportunity to be the best that they can. Parents need to have the faith to let them experience some risks.
• Remember your other children.
• The more you can teach your child how to fit in with others, eg. be helpful and a good friend, the happier the child is likely to be as he grows older.
• Remember children and young people with disabilities can have happy and fulfilling lives.
• Expect the same standard of health care and support for your child with a disability as for any other child.
• If you do not feel able to love your child, get professional help. It will benefit both you and the child if you can work through these feelings. Remember all parents feel this way occasionally. Sometimes parents try not to care too much about babies who may die, in order to prepare themselves, and this can make it harder if the child lives.

Teaching your child to care for himself

It is often easier and much quicker for parents to do things for children with a disability, rather than to teach them to do things for themselves. However feeling able to do things for themselves (even small things) is one of the ways children learn to feel capable and good about themselves. Children who have a disability may have fewer things they can do than other children do so it is worth the effort and time it takes to teach them to do what they can.

Some things to remember about teaching all children to care for themselves.

• Show your child how to do things. You may have to show them over and over. Talk about what you are doing as you do things with your child eg dress her.
• Use short sentences and only give one suggestion at a time at first.
• Break down tasks into small parts so your child gets a sense of being capable even before she can do the whole thing. Help your child to learn one step at a time. For example, pulling up her pants may be the first step that she can be proud of towards toilet training.
• Try not to criticise mistakes. It is much more helpful to be encouraging for the bits your child gets right. Just try again when things go wrong.
• Don’t expect too much or too little. If your child is getting upset and frustrated, maybe you are expecting too much. On the other hand give the opportunity to try things without rushing in to help too quickly.
• Allow your child to help you. Everyone feels better if they feel they can contribute. Find things your child can do to help. Even if she just holds the bowl while you peel the vegetables, let her see that you appreciate her help.
• Children and young people with disabilities may go on learning new basic skills well after their peers can do the same things. Even as teenagers and young adults, they may go on learning new basic skills.
• For children with a disability an occupational therapist can often help with tasks that seem too difficult to manage.

Have faith in your child – and show her that you have faith in her.

Teaching your child about safety

All parents want their children to be safe and if your child has a disability you might want to be especially careful because your child is not as able as other children to be able to keep himself safe. Many parents try to look after their children so well that they are never in an unsafe situation. It is important to protect children but you cannot be there all the time, especially as they grow, so it is also important to teach them how to keep themselves safe as far as they are able to. Even if they can only learn a few rules about safety it will help them, and help you to worry less.

Teaching about safety if your children have problems in understanding needs time and patience. Try to teach them rules for what to do to keep safe rather than teaching through fear of what might happen to them. Give lots of encouragement with each small step that they learn along the way.

Some things you can teach about safety

• Make sure your child carries his phone number and address in some way.
• Teach him how to use the phone if he can, and how to call home or an emergency number for help.
• Teach him what is safe to eat and what is not – this includes medicines. You may be able to teach your child by playing a game of what to eat and what to say “No” to. For example “Can you eat soap?”… Answer “No”. “Can you eat carrots?”…Answer “Yes”. When it comes to medicine you might want to make a rule that your child can only take medicine if you (or named other people) give it to him.
• Teach your child other safety rules eg about not going with strangers, about unsafe touching, about road safety, about fire etc, according to what he can understand.

Your child at school

Many children with disabilities now go to an ordinary school, but whether they go to an ordinary school or a special school, schooling is a large part of their lives and it is important that it works well for them.

Some school difficulties can be:

• not having appropriate physical needs eg ramps for wheelchairs, suitable desks or computers
• teachers not understanding the condition
• missing school and losing touch with friends
• having to spend a lot of  ‘free’ time catching up with work
• bullying and teasing. (See the topic Bullying)

Some things you can do to help

• Check out the school first and make sure it is suitable for your child. Take your child with you.
• Check with the school about extra resources which might be available for your child from education, health or other agencies eg support staff, physical needs like computers etc.
• Help your child to learn to manage her own clothes and needs as far as possible so she can feel and be independent.
• Find out what school activities your child can take part in eg drama, music and outings. Being part of things can make children feel much happier and more confident.
• Talk to the teachers so they understand your child’s needs and abilities. Let the teachers know if tiredness or pain or coordination problems make it hard for her to do some of the tasks. All her teachers need to know about this, not just classroom teachers. Support from teachers is very important.
• Keep regular contact with the teacher so that any problems can be sorted out and you can both share successes too.
• It may help to have a health professional come to the school and talk to the children and the staff about your child’s health problem.
• Try to arrange health/medical appointments during school holidays so your children miss as little school as possible.
• Friends can be very important for your child in many ways so encourage friendships where you can and make it easy for your child’s friends to visit you.

Growing up

As your child grows up there will be new challenges to face. Some parents try to avoid these by keeping their children young and avoiding new situations. You can help prepare for the process of growing up and eventual letting go by giving your child all the resources you can.

• Teach your young people about sexuality and keeping safe – get help if you need to. Young people with disabilities usually have the same sexual feelings and needs as other young people, but some may need more help to cope with them and express them appropriately. They may also be at more risk of abuse. Teach them how to say “No”.
• Involve them in making decisions about their care and taking responsibility for it as much as they can.
• Give your child practice in doing things independently where possible – eg weekends in respite care, trips away, belonging to groups.
• Adolescence can present emotional problems for young people, as they want to be part of the group, but many find it impossible, or have many restrictions on what they can do. They will realise more and more the differences between them and their friends.
• Find out the options for future care and try to arrange for future living plans while you are still able to support your child through the change.
• If you have devoted a lot of years to caring for your child, think about where you can spend that energy and interest from now on. There may some grieving about these changes, as well as positive new directions.
• Most services encourage continuing family contact either by day or with overnight stays. Apart from not losing contact it allows you to help staff maintain your child’s care as it was at home.
• Services that have supported your child may appreciate some voluntary help, you may want the chance to get back into the workforce, or you may take up a hobby you didn’t have time for before.

Reminders

• Every child is different and every child with a disability is different. You are the person who knows your child best.
• Think of yourself as a partner with professionals and ask questions about what you can do to help, what else might be available to you and your child.
• Children and young people with disabilities can have happy and fulfilling lives.
• The more you can teach your child how to fit in with others, the happier your child is likely to be as he grows older.
• You have the right to expect the same standard of health care and support for your child with a disability as for any other child.
• Find a support group of parents with similar experiences – this can be helpful.
• Build into your life time for you to do things for yourself.

Some children and adults may be able to hear sounds well, but have difficulty understanding what the sounds mean, especially when there are a lot of other sounds around them. For example, they may not be able to understand what someone is saying in a noisy classroom, but they may find it easier to understand when they are in a quiet place.

Some of these people may have a Central Auditory Processing Disorder (CAPD).

• This means that the brain (central) has difficulty (disorder) working out (processing) the meaning of the sounds that they hear (auditory).
• This topic will attempt to give an introduction to CAPD, with links to other sites if you want to know more.

CAPD can affect adults as well as children - it is a difficulty that people have for the whole of their life, but this topic focuses on school age children.

Why do people have trouble understanding what is said?

There are many reasons why someone may have trouble understanding what someone else has said.

• The words may have been said very fast, or too quietly, or with an unusual accent.
• There may be a lot of noise around.
• The person may not be able to hear well (hearing loss).
• The person may have a developmental delay and not be able to understand what is being said.
• The person may have problems with attention (ie. Attention Deficit Disorder, or ADD)
• The person may be too young to understand.
• The person may have CAPD.

Signs that a child may have CAPD

Some of the things that children with CAPD find difficult are:

• listening to one voice when there are many people talking
• remembering instructions
• noticing the small differences between similar words (such as boat/coat, which/wish)
• concentrating in a noisy place.

They may also be very sensitive to noise, and prefer to be in a quiet place.

At school, almost everything that is done depends on the child being able to listen and work out what is being said by the teacher or other children. This can be very difficult for a child with CAPD, and the child may give up trying. It can appear like the child is being ‘lazy’ or ‘disobedient’, when in fact the child cannot manage to understand what is happening.

Is the difficulty CAPD?

There are some tests of hearing and understanding which can be done when a child is over about 9 years old, but these can be expensive, and there may be long waiting lists to have them.

Having a diagnosis of CAPD may help you and the school get extra support for your child, but a diagnosis is usually not needed. What is needed is assessment of whether the child has any other problem that may be the cause of attention and understanding problems. Your doctor, a speech pathologist, an audiologist and your child’s teacher will be able to help you work out whether CAPD may be the problem your child has.

You need to make sure that the child does not have:

• hearing loss
• any other type of learning problem
• attention problems such as ADD (Attention Deficit Disorder)
• other language problems
• major developmental problems such as autism.

There are topics about these listed in ‘Related topics’ next to the beginning of this topic.

What causes CAPD?

• CAPD tends to run in families (ie. it can be inherited)
• It may be due to brain injury
• It may be related to long lasting hearing difficulties.

Many children with CAPD also have ADD.

What can be done to help children with CAPD

The main type of help for a child who has CAPD involves making it easy for the child to understand what he hears, by:

• recognising that the child has a difficulty, and is not just being naughty.
• having his learning place (eg. classroom) as quiet as possible when the teacher is giving instructions. Many classrooms (especially junior primary classrooms) are very noisy much of the time.
• sitting the child close to the teacher, so that the teacher’s voice is loud compared to the voices of other children.
• giving the child other ways of ‘getting the message’, such as written instructions.
• allowing the child to ask the teacher to repeat what has been said, or to ask other children.
• breaking instructions into simple steps, and giving the next instruction when the child has done the first one, eg. asking the child to stop what she is doing, then when she has stopped, telling her to take the book to the shelf, etc.
• having quiet study places at home.

Each of these may be helpful for any child who has a learning problem.

If these changes are not enough, and testing has been done to be sure that CAPD is the child’s problem, an amplifying system may be helpful. The teacher may wear a microphone and the child may wear an earphone. The teacher’s voice is then louder than other voices. These systems can be quite expensive, so the other ways of helping are usually tried first.

The term ‘Autism Spectrum Disorders’ refers to a group of disabilities that affect a child’s development. The most well-known Autism Spectrum Disorders are autism and Asperger syndrome. When children have an Autism Spectrum Disorder, they have trouble with communication and social skills and they have particular repetitive behaviours.

Early intervention programs and special education programs can help children with Autism Spectrum Disorders and their families. Parent support groups can also help families living with autism and Asperger syndrome.

What is an Autism Spectrum Disorder?

• Autism Spectrum Disorders are a range of disorders that affect a child’s
  • communication
  • social skills
  • behaviour.
• The most well-known types of Autism Spectrum Disorders are autism and Asperger syndrome.
• Other types of Autism Spectrum Disorder include atypical autism and non-verbal learning difficulties.
• The term ‘autism spectrum’ means that children will vary in the pattern of problems they have.

Causes of Autism Spectrum Disorders

• There is no one cause for an Autism Spectrum Disorder. The causes can be different in different people.
• Researchers are looking at several possible causes. These include a combination of genetic factors, viral infection, complications during pregnancy and chemical imbalances in the brain.
• Many researchers are studying different parts of the brain that they know are affected by Autism Spectrum Disorders.

How is it diagnosed?

A diagnosis for an Autism Spectrum Disorder is based on a child’s behaviour and development. There are no easy medical tests to prove that a child has an Autism Spectrum Disorder (including autism or Asperger syndrome). However, there are a number of recognised standards that are used in many countries to help professionals decide about a diagnosis.

Usually, a diagnosis is made by a multidisciplinary team. This is a group of people who have different professional backgrounds. People who diagnose Autism Spectrum Disorders can include a:

• paediatrician
• speech pathologist
• psychologist
• psychiatrist.

Usually, two of these professionals are required to be involved in the diagnosis. These people should be experienced in recognising Autism Spectrum Disorders and other developmental disorders. (For more information on the criteria for diagnosis, see the topics on Autism and Asperger Syndrome.)

What you can do

If you think that your child is having problems with development, see your doctor, community health nurse or staff at your local community health centre. They can help you decide what is the best plan for you and your child.

These professionals may send you to see a paediatrician, speech pathologist, occupational therapist or psychologist. You may also be referred to a specialist assessment centre.

Autism occurs in people from all cultures and countries. It was first named by Professor Leo Kanner in 1943 and is sometimes called Kanner’s Syndrome.

Autism is a lifelong developmental disorder that affects at least 1 in 1000 people. It affects more boys than girls (approximately 4 boys for every 1 girl). People with autism have problems with communication, social interaction, imagination and repetitive activities. Parents do not cause autism.

Autism is part of a group of disorders called ‘Autism Spectrum Disorders’. Asperger Syndrome is another type of Autism Spectrum Disorder.

What is autism?

• Autism is a type of developmental disorder. This means that children with autism develop their learning and thinking skills in unusual ways and at different ages to other children.
• Autism always affects the development of communication skills and social skills.
• People with autism have repetitive behaviour patterns and obsessive interests. They have trouble accepting changes in their life. This can affect their thinking skills, especially reasoning and imagination.
• Autism is not a disease or an illness. People do not ‘catch’ it nor do they ‘recover’ from it. People with autism are affected throughout their lives. However, the effects change as people get older, especially if they are helped with their learning.
• Autism is usually present from birth but may take a long time to be recognised and diagnosed.
• Some children with autism will also have other problems.
• About 30% may develop epilepsy.
• About 75% of children with autism also have intellectual disability.

Causes of autism

• There is no one cause for autism. The causes can vary in different people.
• It is possibly caused by a combination of genetic factors, viral infection and/or complications during pregnancy.
• Current research is looking at how the brain works in people with autism. In some cases, individual areas of the brain (including the cerebellum and frontal lobes) seem to function differently.
• Research looking at genes is starting to show differences in the genes of children with autism.  These differences are probably small and they probably need to interact with other genes to cause the disability.
• If there is autism in the family, there is an increased risk of someone else in the family having autism, Asperger syndrome or a language disorder. The risk is increased from about 1:1000 to 2-3 in 100.
• Immunisation is not a cause of autism. Many very large research studies have been done and these clearly show there is no causative link between any immunisation and autism.
• You may hear a number of theories about what may trigger autism. If you have any questions, contact your local doctor or paediatrician.

How is autism diagnosed?

A diagnosis for autism is based on a child’s behaviour and development. There are no easy medical tests to prove that a child has autism. However, there are a number of recognised standards that are used in many countries to help professionals decide about a diagnosis.

Often, a diagnosis is made by a multidisciplinary team. This is a group of people who have different professional backgrounds. People who diagnose autism can include a:

• paediatrician
• speech pathologist
• psychologist
• psychiatrist.

Usually, two of these professionals are required to be involved in each diagnosis. These people should be experienced in recognising autism.

A diagnosis is made by looking at how children communicate, their social interactions (behaviour with other people) and any repetitive behaviours that may be present.

Communication

• Children with autism have a language disorder.
• They have difficulty understanding verbal language (what is said) and do not notice or understand the non-verbal communication of other people (how people show their feelings eg by smiling or frowning).
• They also have difficulty using language (expressing themselves) and using non-verbal communication. This means that they do not often:
  • gesture with their hands, especially to point at things
  • make eye contact (look other people in the eyes)
  • show expression on their face
  • change their voice tone or volume
  • show how they feel by the way they walk or stand.
• Many children with autism do not learn to talk. Some may begin to talk and then stop. Others may have good speech but they may use language in unusual ways.
• Some children with autism seem to be deaf because they do not react to sounds around them, for example, they do not answer to their own name. Others may be especially sensitive to certain types of sounds (such as music from their favourite television program).
• Many children with autism have echolalia. This means they repeat what is said to them like an echo. For example, if you say, ‘Hello, Johnny.’ the child with autism may reply, ‘Hello, Johnny’.
• Children with autism take what you say literally. They do not understand that words can be used in many ways. If you tell children with autism that you could eat a horse, they might think that you will.
• These communication problems make it harder for children with autism to interact with others.

Social interaction

• Many children with autism do not have a need for social interaction and prefer to be alone.
• It is difficult for children with autism to make friends.
• They need help to learn social skills because they do not understand the rules that control how people should act in different situations.
• Children with autism are often said to be ‘egocentric’. This means that they think of themselves first and do not think about how they are affecting other people.
• They usually seem unaware of other people’s feelings.
• They rarely share interests with other people.

Repetitive behaviours

Children and adults with autism often have many unusual and difficult behaviours. They may:

• insist on a number of routines, as routines can help them feel less confused. They may also be very distressed if a routine is changed. For example, a routine could be disturbed if a parent uses a different route when taking the child to kindergarten.
• have tantrums and be aggressive at times, especially if they have to cope with a change to their routine. Sometimes they will deliberately hurt themselves.
• have obsessive interest in objects, activities and places and not be willing to talk about or do other things.
• make unusual body movements which seem to offer comfort, such as hand flapping, finger wriggling, stiff walking movements, walking on their toes, body rocking, head banging and hair twirling.
• be very sensitive to sound, colours, tastes, smells and textures. Because of this, they may be unwilling to try any new foods or they may refuse to wear some clothes because of the feel of the clothes.
• be sensitive to being touched and held by other people (even their parents).
• be very good at drawing, music, calendar calculation or memory. But only a few people with autism have these special skills. Sometimes these people are called ‘savants’.

Play skills

Most young children, even before they use words, will know how to play with toys such as a car (you push it along and make engine noises) or a tea set (you pretend to drink). Children with autism do not develop these play skills. Parents may notice that their child:

• does the same thing over and over like spinning the wheels of the doll’s pusher
• is not able to pretend during play
• is destructive with toys.

How is autism treated?

• Many different ‘therapies’ have been used to help children with autism. Autism associations recommend that any therapy is thoroughly investigated before you commit to it as some ‘therapies’ are very expensive and have been shown not to work.
• Special education and behaviour management programs can help children improve their social skills and behaviour.
• Some children with mild difficulties will be able to live independently, but others need support all of their lives.
• People with autism have a normal life expectancy (they will live as long as other family members do).
• There is no medical treatment for autism, but some medication can help with anxiety and concentration. What works for one child may have a very different effect on another child.
• Support groups and examples of what other families have done can be helpful to parents. However, there is so much variation in autism that what works for some families may not work for others.
• There is no cure for autism.

What you can do

• Parents do not cause autism. Autism is a developmental disorder that is caused by the way your child’s brain develops.
• Children with autism will act differently from your other children. You will have to learn new and different ways to help and teach this child.
• If you think your child has autism, or one of the other disorders within the autism spectrum, it is best to have an assessment as soon as possible. There may be a waiting time for an assessment.
• You do not have to wait for a diagnosis before you can get help. You can seek support from other early intervention services for speech pathology, occupational therapy and educational support.
• A full assessment by a paediatrician (specialist in child medicine) can rule out some of the other reasons why a child could have difficulty with development, speech and behaviour, such as hearing and vision problems.
• Support from other parents can be important.

Preschool and school

Children with autism have different educational support needs. Additional support may be provided for your child while at childcare, preschool or school. Some of this support may come from specialist agencies. This is organised through the childcare or preschool director, or school principal.

When you enrol your child at a childcare, preschool or school, the staff will talk to you about his needs. They will want to know about any special routines or interests that your child has and how he communicates. They will also want to know about the ways that you have learned to manage the child’s behaviour. Teachers will think about the best way to teach your child and may make changes to the classroom that will help your child. You should let childcare, preschool or school staff know if your child is sensitive to certain sounds, smells or being touched. This will help them develop appropriate plans for your child.



Asperger syndrome is a developmental disability related to autism. It was first identified by Dr Hans Asperger (a paediatrician in Vienna) over 50 years ago. Asperger syndrome and autism are both types of Autism Spectrum Disorder. People with an Autism Spectrum Disorder have problems in the development of communication and social skills and with particular repetitive behaviours.

See the topics ‘Autism’ and ‘Autism spectrum disorders’ for more detailed information about these disorders.

What is Asperger Syndrome?

• Asperger syndrome is a developmental disability. This means that children with the syndrome develop their learning and thinking skills in unusual ways and at different ages to other children.
• Asperger syndrome affects brain functioning (how the brain works).
• People with Asperger syndrome find other people confusing and find forming friendships very difficult.
• They may talk fluently about the things they are interested in, but have problems communicating appropriately with other people.
• They do not understand the feelings of other people and they do not seem able to read body language. For example a person with Asperger syndrome may not know that people are showing that they are cross when they are frowning. However, with time, they can learn a lot about ‘reading’ others.
• They are often unable to understand that communication involves listening as well as talking. Again, with time they can often learn more about this social skill.
• Asperger syndrome is not a disease or illness. A person does not ‘catch’ it, nor does someone ‘recover’ from it. It affects people all of their lives. As people get older, they can improve their behaviour, social and coping skills.
• Parents are usually aware that their child is developing differently from other children for some time (often several years) before other people recognise how different the child is.
• Some babies who later are diagnosed as having Asperger syndrome are ‘difficult’ babies who cry a lot. Others however, are placid, ‘easy’ babies
• Often a child will be school-age before Asperger syndrome is diagnosed.
• The effects of Asperger syndrome can vary from mildly unusual behaviour to quite aggressive and difficult behaviour.
• Some people who are said to be eccentric loners may have Asperger syndrome.

Causes of Asperger Syndrome

• Like autism, Asperger syndrome is probably caused by a combination of factors.
• Most research indicates that family genetics play a part in Asperger syndrome. In many families where children have Asperger syndrome, there are other family members who have similar behaviours or who have autism.
• Asperger syndrome has been related to problems during pregnancy or birth in some people.
• There is some evidence that a certain part of the brain may work differently in people with Asperger syndrome.
• Currently, about 10 times more boys than girls are diagnosed with Asperger syndrome. It seems likely that more girls than this have Asperger syndrome, but their behaviours may not be so difficult and they are not diagnosed as having the syndrome.

How is Asperger syndrome diagnosed?

A diagnosis for Asperger syndrome is based on a child’s behaviour and development. There are no easy medical tests to prove that a child has the syndrome. However, there are a number of recognised standards that are used in many countries to help professionals decide about a diagnosis.

Usually, a diagnosis is made by a multidisciplinary team. This is a group of people who have different professional backgrounds. People who diagnose Asperger syndrome can include a:

• paediatrician
• speech pathologist
• psychologist
• psychiatrist.

Two of these professionals are generally required to be involved in the diagnosis so that the family can access special services. These people should be experienced in recognising Asperger syndrome.

A diagnosis is made by looking at how a child communicates, his/her social interactions (behaviour with other people) and any repetitive behaviours that the child may have.

Communication

• Most children with Asperger syndrome learn to speak, read and write at the usual age (or only a little earlier or later than usual).
• They are often very literal in what they say and how they understand what others say. For example, if told to ‘get lost’ (meaning ‘go away’), a child with Asperger syndrome may leave the place and try to become lost.
• They may not show their feelings through facial expressions or actions, and may not pay attention to these things in others.
• They often have poor conversation skills and may talk too much or too little.
• They have poor listening skills.
• They often interrupt others and take over a conversation to talk about their area of personal interest. Usually they will not notice that other people are not interested in what they are saying.
• They may prefer to work with computers rather than with people, because computers are predictable and do not become upset.
• Children with Asperger syndrome may be able to play imaginative games, but usually act these out by themselves or try to direct the actions of other children.

Social interaction

• Children with Asperger syndrome may not understand how to play with other children, and may prefer to play alone, or with younger children or adults.
• They find it difficult to understand the non-verbal language of others (such as facial expressions, gestures and body movements) or the rules of social behaviour. They often appear rude or uncaring because they interrupt, have trouble taking turns, move too close to other people or rarely make eye contact (look someone in the eye).
• They may be extremely sensitive to criticism and need continual reassurance.
• They may have an exaggerated sense of what is right or fair, especially in relation to how other people should treat them.
• They may be unable to predict what other people will do in response to their actions.
• They may think that the things that others do accidentally (such as bumping them) are done deliberately to upset them.
• Some children may not seem to care what other people think. Yet, others may get into trouble because they are desperate to have friends. It is easy for other children to ‘set them up’ by asking them to do the wrong thing because they do not easily understand how to behave in different situations. They may be bullied a lot.

Repetitive behaviours

Children and adults with Asperger syndrome often have unusual and difficult behaviours.

• The world is often very confusing for people with Asperger syndrome, and they may try to make the world less confusing by having rules and rituals (ways of doing things) which they insist upon.
• They may become quite angry and aggressive when things do not happen as they want or expect. They may have prolonged tantrums.
• People with Asperger syndrome can become overwhelmed by too much noise and movement. Confusing places (such as shopping centres) or confusing events (such as parties) may be very stressful and may trigger inappropriate behaviours, such as tantrums.
• They usually have narrow areas of interest and may learn all there is to know about one special thing (such as cars, trains, computers, astronomy, insects, etc).
  • These narrow interests frequently become obsessions for people with Asperger syndrome.
  • Because of this obsessiveness, some people with Asperger syndrome will become true experts in their area of interest.
• People with Asperger syndrome may seem very bright because they have developed a depth of knowledge in one area. However, they may have limited abilities in other areas.

Treatment for Asperger Syndrome

• There is no cure or specific treatment for a person with Asperger syndrome, but individually tailored educational programs can be helpful.
• Specific training (such as social skills training or relaxation therapy) can also be helpful.
• A diagnosis of Asperger syndrome may help a family or a school to access special services, such as teacher support time or disability allowances.
• People with Asperger syndrome can develop to their full potential when others understand the effects of the syndrome on behaviour and learning, and provide a supportive environment.
• Sometimes medication can be useful to manage anxiety, depression and aggressive outbursts that may be caused by the stress of social and communication difficulties.

What you can do

• Parents do not cause Asperger syndrome and should not blame themselves.
• Children with Asperger syndrome will act differently from your other children. You will have to learn new and different ways to help and teach this child.
• Your child will probably need clear routines and if there have to be changes he will need lots of warning.
• If you think your child has Asperger syndrome, or one of the other disorders within the autism spectrum, it is best to have an assessment as soon as possible. There may be a waiting time for an assessment.
• You do not have to wait for a diagnosis before you can get help. You can seek support from professionals such as a psychologist, paediatrician, speech pathologist or behaviour therapist.
• Stress management techniques may be helpful to control anxiety in older children and adults.
• If anxiety is so overwhelming that it is interfering with your child’s ability to manage normal activities, medication may be helpful. You will need to see your doctor to arrange this.
• Support from other parents can be important.

Siblings (brothers and sisters)

It can be difficult for siblings to have a brother or sister with Asperger syndrome.

• Their behaviour can be difficult to live with because they don’t relate to others well.
• They may have frequent tantrums when things don’t go the way they want them, and this can be embarrassing.
• Parents often have to spend a lot more time with the child who has Asperger syndrome, so that siblings can feel they are missing out.
• Siblings may have to watch out more for their brother or sister to protect them from others, such as protecting them from being bullied.
• Some siblings may need to learn how to keep themselves safe if the child with Asperger syndrome is having difficulty controlling frustration or anger.

Understanding more about Asperger syndrome may help a sibling interact more successfully with their brother or sister. The topic ‘Disability – brothers and sisters’ may also be helpful.

Some people find peer support groups good. Check on the internet to see if there are support groups in your area.

The books by Tony Attwood and Kate Strohm listed below may be useful.

Preschool and school

Children with Asperger syndrome have different educational support needs. Additional support may be provided for your child while at preschool or school. Some of this support may come from specialist agencies. This is organised through the preschool director or school principal.

• When you enrol your child at a preschool or school, the staff will talk to you about his/her needs.
• They will want to know about any special routines or interests that your child has and how s/he communicates.
• They will also want to know about the ways that you have learned to manage your child’s behaviour.
• Teachers will think about the best way to teach your child and may make changes to the classroom that will help your child.
• You should let preschool or school staff know if your child is sensitive to certain sounds, smells or being touched. This will help them develop appropriate plans for your child.
• Get to know your child’s teacher and meet regularly, along with your child, to talk about any issues that arise.
• Set strategies and routines in place for your child which can be followed at home and at school, eg regarding acceptable behaviour, consequences, dealing with anger and frustration.
• It may be helpful for you to arrange to attend a staff meeting to inform staff about Asperger syndrome and what this means for your child.

Secondary school

• Secondary school can be very stressful for students with Asperger syndrome because of the daily challenges of having several different teachers, having to move between classrooms and have different timetables each day. These changes can cause considerable confusion and anxiety for someone who is very resistant to change.
• As other students become more sophisticated with interpersonal relationships, it can become more difficult for a student with Asperger syndrome to be involved in friendship groups, although they may be able to participate well in special interest groups such as science groups. When managing social interactions is difficult, some solitary time can be needed and should not be seen as a ‘problem’.
• Teenagers are usually able to manage stressors better, and behaviour problems at school may be less of an issue. However the tiredness that comes from this control may lead to the the teenager ‘falling apart’ at home.
• Fatigue after school is often a problem, and facing up to homework at the end of the day can be very stressful.
  • You may need to negotiate with teachers about the learning objectives of homework and what your teenager actually needs to do.
  • Since many students with Asperger syndrome can focus well in some classes (especially those that are built on ‘facts’) they may not need the repetitive learning tasks that other students need for some subjects.

Adult partnerships

• Most people with Asperger syndrome can form strong bonds with significant others, marry and have children.
• Their anxieties and difficulties with the sublteties of relationships can be confusing and distressing to partners and their children. If partners and children are able to learn more about Asperger syndrome, they are often more able to understand the behaviour and live more comfortably with the person who has Asperger syndrome.
• People with Asperger Syndrome also have a need to understand relationships better and learn more about how their behaviour and emotions can affect others.
• Reading Tony Attwood’s book on Asperger syndrome can be a useful start for this.
• Peer support groups can also be helpful for partners and children. Check on the internet to see if there are support groups in your area.

Injuries often occur in childhood. Usually, these injuries heal with time and do not cause lasting problems. However, some injuries to the brain may alter a child’s thinking and behaviour.

Health professionals and educators can help families of a child with an acquired brain injury. There are also support groups and specialist agencies who understand the effects of acquired brain injury.

Alert!

If a child has a hard blow to the head, seems dazed or loses consciousness (even briefly), see your doctor. Also consult your doctor if your child seems unwell or begins to vomit after a hard blow to the head. Call an ambulance if your child is unconscious and do not leave the child alone.

What is an acquired brain injury?

• An acquired brain injury refers to injury to the brain that is caused by something that happens to a person at birth, after birth or during their lifetime.
• This injury is permanent and changes the way the person acts, thinks or behaves.
• An acquired brain injury is not present before birth but can be caused by the birth process.
• It is not caused by developmental delay or disabilities that affect development of the mind but certain types of acquired brain injury may cause intellectual disability and/or physical disability.
• Acquired brain injury can also cause communication problems and mood changes.
• Sometimes, acquired brain injury is called traumatic brain injury when the injury is caused by some type of ‘accident’.

Causes of acquired brain injury

There are a number of causes of acquired brain injury. These include:

Trauma

• Trauma means that an injury to the brain has been caused by a blow to the head, such as falling, motor vehicle accident, bicycle accident or being hit on the head, or by being shaken hard.
• Trauma to the head is the most common cause of acquired brain injury.
• Children may be unconscious for a short time, or if the injury is more severe they may be in a coma for hours, or days, or longer.
• The type and amount of brain injury will depend upon the severity and location of the blow.

Tumour

• Tumours (including cancers) that grow in the brain are another cause of acquired brain injury.
• The type of injury to the brain depends on the size of the tumour, what part of the brain is affected, the age of the child and the treatment needed.
• Treatment for brain tumours such as chemotherapy, radiotherapy or surgery, can also cause brain injury.

Treatment

• Treatment needed for problems in other parts of the body (such as for cancers) may injure the brain.

Neurological events

Neurological events (things that happen to the brain) include:

• stroke
• cerebral haemorrhage (bleeding in the brain)
• hydrocephalus (pressure from too much fluid around the brain)
• aneurysms (dilation of the wall of a blood vessel)
• epilepsy.

Anoxic injuries

• Anoxic injuries happen when the brain does not get enough oxygen.
• This can happen as a result of near-drowning, suffocation, electrocution or heart failure.
• Having a block in important blood vessels can also cause anoxic injuries.

Other causes

• Brain injury may happen as a result of infections (such as meningitis and encephalitis) or from severe drug abuse or poisoning (such as lead poisoning).

Effects of acquired brain injury

An acquired brain injury may affect a child’s normal development.

• The effects of acquired brain injury will depend on how bad the injury was and the part of the brain that has been affected.
• Brain injuries can be mild, moderate or severe.
• The recovery time will vary for each person, but a child may not recover fully.
• In some cases, acquired brain injuries will have a small (subtle) effect on your child’s learning and behaviour. In others, the effects will be more wide ranging and there may be a physical disability.

The age of the child at the time of the injury will affect their future development. There are important factors to consider for any child who has a brain injury.

Younger children

• A brain injury in children under two years may permanently affect the development of speech, language and control of movement (eg causing cerebral palsy).
• A brain injury in young children may affect the development of other important processes that are part of thinking, learning and social skills.
• Problems with the development of important foundation skills (skills that are needed before a child can learn other skills) may lead to general and specific learning difficulties later in life.

Older children

• Older children often lose skills in some areas but not all areas (eg they may lose the control of one leg or arm but not all limbs as in cerebral palsy in a younger child).
• Older children will be more aware of the effects of their injury and will know that they have ‘lost’ skills. Social and emotional problems may happen because of this and because of the length of time spent in hospital away from their friends.
• In children between the ages of nine and fifteen, brain injury may interrupt the development of complex thinking. This may make it difficult for these children to learn to organise and plan ahead or to understand how ideas relate to each other.
• Older children may be more willing to do whatever is necessary to help their recovery.

Changes to thinking and behaviour

Changes to a child’s thinking and behaviour may be evident in many ways. Often parents and teachers will notice changes in a child’s:

• memory (there may be gaps or lapses)
• ability to plan and complete tasks (concentration is poor)
• judgement (working things out)
• ability to think in complex ways
• balance and ability to move skilfully
• sense of time
• self-confidence
• ability to think clearly
• personality (including mood swings, depression and anxiety)
• understanding of speech and language
• health (including the onset of epilepsy and changes to weight or growth rates).

The effects of some brain injuries may not be obvious at first, and they vary from child to child. This means parents, families and teachers will need to think about what changes have happened to each individual child. They may also need to change their expectations of the child because of the brain injury.

Can it be cured?

• Acquired brain injury may have long term effects on what your child can do and how he behaves and feels.
• Recovery from this type of injury can be uncertain and may take a long time.
• Some skills may not come back. This will depend on the severity of the injury, the part of the brain affected and the age of the child at the time of the injury.
• For some children, recovery of individual cognitive (thinking) skills will be patchy and uneven. This may happen to your child’s physical, communication, emotional or social skills as well.

What you can do

You will feel many different emotions as a result of your child’s brain injury. Many parents feel shock and disbelief, anger, self-blame, despair, frustration and sorrow. It is quite normal to have any and all of these reactions and they may last for many years.

There are many things that you can do at different stages of your child’s recovery. However, it is always important to take care of yourself as well as to look after the needs of your child, family and friends.

During hospitalisation

• Some families find it helpful to keep a diary of what happens during their child’s recovery period. Older children with a brain injury can find it useful to read about their recovery at a later time.
• Your child may seem quite different after a brain injury. You may wish to speak to health professionals or other parents about your feelings about this.
• Often you will be asked to provide support and comfort to your recovering child, other children in the family and to friends. This may be at the same time that you are dealing with strong feelings of your own. Ask for help from health professionals. It is part of their job to support parents in your situation.
• Your child may spend a long time in hospital. You can help by bringing familiar toys and posters from home.
• Try to develop a routine between home time and hospital visits.
• Ask hospital staff for information about rehabilitation (the ongoing management of injuries and disabilities after the accident) and support services once your child leaves hospital.
• Be involved in the decisions made about your child.
• Remember that the pattern of recovery is different for each child. Professionals may not be able to give exact answers to all of your questions.
• Keep asking questions.
• Encourage friends to visit. However, in the early stages of your child’s recovery, visits may need to be kept short. Visitors should be asked to follow some predictable routines and should avoid giving your child too much ‘new’ information to deal with.

Once your child is home

• Try to keep in regular contact with friends and family.
• Organise a roster with family members for hospital or therapy appointments.
• Look after your own health and well-being.
• Contact and join support organisations. A number of helpful support groups and specialist agencies in Australia and in South Australia have been listed at the end of this article.
• Remember that your child’s recovery will take time.

Preschool and school

• Preschools and schools should make every effort to meet your child’s support needs.
• Staff can be more helpful if you give them information about the injury and any other relevant medical information.
• Remember to give new teachers this information.
• Update the information every year or when there are important changes to your child’s condition.
• The children in your child’s class may need information about brain injury in order to understand what is happening.

Some parents choose to wrap their babies when they put them down for sleep. Wrapping can help babies to develop a more settled sleep pattern.

Other parents find that wrapping is not helpful. Whether you choose to wrap or not is your choice.

The information and pictures in this topic show a safe and simple way to wrap babies.

You may need to seek advice from your Child and Family Health Service if wrapping an older or more active baby.

Some benefits of wrapping

• Wrapping can help babies develop a more settled sleep pattern.
• Older unsettled babies may sleep better if wrapped firmly.
• When babies are wrapped with their hands close to their face they can comfort themselves more easily.
• Wrapping helps to prevent random arm movements which can disturb a baby’s sleep.
• Babies whose sleep is disturbed by colic or reflux may be more settled when wrapped.
• Babies with stiff or floppy limbs may benefit from being wrapped. Talk with your physiotherapist or child health nurse.

Safe wrapping

• For wrapping to be effective it needs to be firm around the arms but looser around the legs so that babies can bend their legs up at the hips. For normal hip joint development legs need to be bent at the hips with knees apart. Avoid wrapping legs straight.
• The recommended fabrics are muslin or a light cotton wrap. Bigger, more active, babies may need a cotton ‘baby’ sheet.
• Bunny rugs and blankets are not as safe because they may cause overheating.
• Babies must not be overdressed under the wrap. Dress them in a singlet and nappy in warm weather, or a light grow suit in cool weather.

How to wrap

This is one method for safe wrapping.

In most cases the key to successful wrapping and settling lies with holding your baby’s arms firmly. This will give your baby the cue to settle. Some babies settle best when their arms are held with their hands near their face so that they can suck on them to comfort themselves.

Spread the wrap so that you can place the baby’s head at the top of the long side of the wrap, or if the wrap is square, fold one corner of the wrap towards the centre.

1. Place baby on the wrap at shoulder level. Ensure the wrap does not cover the baby’s face.
   
2. Brings arms together on upper chest and hold firmly.
   
3. Bring one side over both arms and tuck under your baby, keeping arms held firmly together.
   
4. Bring the other side over arms and then tuck under body.
   
5. Twist or fold the end of the wrap and place it to the side so that both legs remain bent up.
   

When to wrap

You can choose to wrap your infant from any age. Wrapping may be used throughout the first year of life to help infants relax and settle into sleep. Whether to wrap depends on whether it helps your baby, not how old the baby is. Some babies find it stressful while others find it comforting to be held by a wrap for many months. Some babies do better if they have their arms out, others like their arms wrapped in. Do what helps your baby to feel safe and relaxed and comforted.

Safe sleeping

• Place babies on their back to sleep.
• Make sure your baby’s face is not covered.
• Cigarette smoke is bad for babies.
• Make sure that your baby’s cot or bassinette is safe. The mattress needs to be well fitted.
• Place your baby with feet at the end of the cot.
• The cot should be free of toys and bumpers.

See the topics Sudden unexpected deaths in infancy (including SIDS) and Safe sleep for more information.



The 2007 Australian National Drowning Report showed that 27 infants and toddlers lost their lives through drowning in the financial year ending 30 June 2008. More children die from drowning than from motor vehicle accidents.

Drowning can happen because of:

• the environment – the pool or other risky area is not fenced
• the age of a child – young children are not aware of risks and cannot keep themselves safe
• inadequate supervision.

Many child drownings happen at home in the family pool. Some children drown even when there are adults near. It is important to have swimming pools fenced safely and to supervise young children at all times when they are near a pool or other water.

Alert!
Young children can drown very quickly and quietly. Young children can drown in only a few inches of water. No safety precautions can take the place of adult supervision.

Learn first aid skills – they save lives.

Supervision – keep watch & keep them alive!

This information was developed by the Royal Life Saving Society Australia. For further information visit www.royallifesaving.com.au

What is Supervision?

• Supervision is constant visual contact with your child.
• You should be within arms reach and be in a position to respond quickly.
• It is not an occasional glance while you nap, read or undertake household chores, and it is not looking out at your kids playing outside while you are inside.
• If you have to leave the swimming pool – take the child with you.

Why do I need to supervise so actively?

• The lack of direct adult supervision was the main factor in 70% of toddler drowning deaths.
• Indirect supervision has resulted in the loss of many young lives, proving that when a parent’s or carer’s attention is focused on something else, tragedies can occur.

Can older kids watch younger kids?

• No. Leaving young children in the care of other siblings has been a factor in a number of toddler drowning deaths.
• Older children are not equipped with the skills to perceive and respond to an emergency situation, nor should they be given this responsibility.

How can I best supervise my child?

• By being within arms reach and engaged and interacting with your child when they are in, on or around water.

What is the best way to supervise children at parties?

• If there is a small number of children, make an adult responsible for their care. If this person leaves they should ask someone else to take over.
• If there are a large number of children, leave an adult stationed at different places where the children will play, to monitor the area.

Supervision checklist:

• Have you brought all the clothes, towels and gear, so you do not need to stop watching your child in, or near water?
• Are you prepared to get wet? Active supervision often means getting in the water with the child.
• Have you taken the phone with you? Better yet, turn on the answer machine and let it take the call.
• Are you are within arms reach of your child at all times?
• Do you undertake other activities while your child is in, or near water? Remember that this lessens your attention on the child.

Baths

• Never leave young children alone in a bath.
• Empty the bath tub after use.
• Never leave a baby alone in a bath seat (bath cradle). Some babies have drowned when they slipped through the holes in the bath seat, or when it tipped over (suction cups did not hold it properly).
• If you have to leave the bathroom – take the child with you.

Swimming pools

• Swimming pool owners are responsible for the safety of all people who use the pool, not only family or invited guests.
• Make sure your swimming pool is securely fenced, and the gate is always closed.
  • Fencing a pool correctly has been shown to be the most effective way of reducing drowning of young children.
  • Make sure there is nothing near the pool fence that a child could use to climb over it.
  • A fact sheet about Fencing pools (PDF document) is on the Royal Life Saving Society Australia website.
• When older children can swim well, make some family rules about pool safety, eg. ‘no running on the pool surround’, ‘never swim alone’.
• When the pool is not in use, keep it clear of toys and other floating equipment that might attract children.
• Keep a resuscitation guide for children near your pool. These can be obtained from The Royal Life Saving Society Australia.

Learn first aid skills – they save lives.

Above ground swimming pools

• Since January 2004 in South Australia, all above ground swimming pools deeper than 300mm and with a water filtration system require council approval.
• Councils will then check the details and location of safety barriers, the safety of the pump and the strength of the structure supporting the pool walls.
• Fences and barriers will need to be the same as the ones needed for in ground pools.

Babies in pools

It can be very enjoyable to have a young child sharing family fun in a pool, but it is important to be sure that the water is clean enough to be safe, is warm enough and that there is always an adult close to the baby to keep your baby safe.

Some of the things to think about include:

• Can you be sure that you can keep your baby safe from drowning? No baby, even those who enjoy being in water, can keep themselves safe from drowning. Babies and toddlers have drowned in very shallow pools (ones that have less then 5 cm of water for example). If you take a baby into a pool you must be able to lift the baby out of the water at all times!!
• Is the pool water safe for the baby to drink (as free as possible from germs)? All babies will swallow some water while they are in a pool. If the pool is a small paddling pool, make sure that new water is used each time the pool is used.
• In a larger pool where water is not emptied after each use, is the chlorine level and pH level correct so that it won’t irritate your baby’s eyes? Many children get sore eyes when they get into pool water and some get sinusitis as well from the irritation of chlorine or water that is not the correct pH.
• Is the pool water the correct temperature? Babies can become too cold (or too hot) more easily than older children and adults if the water temperature is too cold or too hot.
• Finally, what risk does your baby pose to other pool users? Babies cannot control their urine or poo. They are very likely to wee or poo in a pool because of the temperature change and the relaxation that can happen when the baby is in water. If your baby has had a recent infection, the infection can easily be passed to other people if they swallow some of the water (and most children do swallow water in a pool). Have a look at the topic Healthy swimming in pools for more information.

Babies can enjoy being in water if they share time in a pool with their family, but there are many risks, and a responsible adult must be with the baby at all times.

Farm water

• If you live in the country make sure that dams, irrigation channels and underground tanks are securely fenced from young children.
• If you cannot fence the dam, make sure that the area that the child plays in is securely fenced so that the child cannot reach the dam.

Water around the house and in the garden

• Do not leave nappy buckets or any other containers with water in them where children can reach them.
• Cover garden ponds and water features with strong mesh or fence them. (Recently there has been an increase in toddlers drowning in garden ponds).
• Empty paddle pools after use.
• Check your garden after rain or watering to make sure water has not collected in any empty containers, old tyres etc.
• If you have a spa make sure that it is securely covered or not able to be reached by children.

Learning to swim

Teaching young children to swim is not enough to protect them from drowning.

• Young children are unable to learn to swim until they are around 5 years old.
  • Under this age they may be able to enjoy and learn some skills, but even when they are 5, children are not old enough to keep themselves safe.
  • Take your children into a pool to help them to get used to the water (water familiarisation).
  • Getting used to the water is an important start to learning swimming and water safety. However, if young children are happy in the water they may be at higher risk of drowning because they want to be in the water.
• All children of school age should be taught to swim and about water safety. Younger children can be taught to swim if they are ready and willing, however this does not “drown proof” them.
• Young children should always be supervised by adults, even if they can swim.

Flotation devices for children

• Flotation devices such as ‘floaties’ will not protect young children from drowning. No flotation device is intended to take the place of parent supervision.
• If children require equipment to protect them from drowning, eg. if they are going out in a boat, they need a life jacket or buoyancy vest with an Australian Standards approval. These can be bought from boating shops.
• There are various types of flotation devices available to support beginning swimmers.
• Most of these are suitable for use with young children if they are well made and used in the intended manner eg. rings, floaties, bubble back packs, flotation suits, buoyancy vests and life jackets.
• All swimming or flotation aids should only be used for the specific age and size of child and the specific intended purposes, eg. a baby should not be using a bubble back pack.
• Check with sales staff and package labels to be sure that what you buy is right for the child who will be using it. Check for age, size and intended use.
• Children must always be supervised when using them, as something could go wrong with the device, eg. rubber could deflate, or the child could slip out of them or turn upside down.
• Check that fasteners fasten securely, and that there are no holes or slow leaks.
• Damaged articles should be replaced.

Spa pools and spa baths

Spa pools are not safe for babies.

• It is easy for a baby to slip out of a person’s arms and drown.
• Also the water in the spa is often too hot for a baby.
• Unless the water is very clean the bubbles and steam can carry germs into the baby’s airways which could cause serious illness. The heated water of spas is a great place for bacteria and yeast bugs (such as tinea to grow).
• If water is left in the spa and reused, the extra treatment needed to keep germ levels acceptable (such as even higher levels of chlorine) makes the water even more irritating to babies’ and children’s eyes.

Spa baths, because of the soap that is used in them, are a special risk because a slippery baby is harder to keep safe from drowning.

Spas should not be used for children until they are able to sit in the spa by themselves with their head well above the water level.

Personal watercraft

• Personal watercraft, such as jet skis, are causing an increasing number of injuries and even deaths.
• Although some of the deaths have been caused by drowning, more often injuries and deaths are caused by colliding with something – either other watercraft or fixed objects such as docks or trees.
• These craft are difficult to handle because they can only be steered when the engine is going so that to avoid hitting something the driver cannot cut the throttle without losing the ability to steer (cutting the throttle is the only way of stopping – there are no brakes).
• The main causes of injuries are lack of experience, excessive speed and inattention.

The American Academy of Pediatrics suggests the following safety rules:

• No-one under 16 years should operate personal watercraft.
• The driver and every passenger must wear an approved flotation device (life jacket).
• Alcohol and drugs should be not be used before operating personal watercraft.
• Safe practices should be used such as not using them at night, not jumping wakes, observing speed limits and keeping away from areas where there are swimmers in the water.
• If the watercraft is towing someone, an extra person on the craft is needed to be facing backwards to check that the person being towed is alright.
• Protective equipment such as wet suits, gloves, boots, eyewear and helmets should be considered.