Basic Guidelines for Parents of Children with an Autistic Spectrum Disorder

Information sheet

It is not always easy for parents or other family members to take in all that a diagnosis of autism or Asperger Syndrome entails. It is with this in mind that these guidelines have been written: they will give you a brief overview of the Autistic Spectrum of Disorders and some tips on communicating with your child and managing his or her behaviour. For more in-depth information please consult the books listed in the recommended reading sections or call the NAS Autism Helpline on 0845 070 4004.

The Triad of Impairments

The Autistic Spectrum of Disorders (ASD) is a huge continuum and children may present their difficulties very differently. However, to have a diagnosis of autism all children will have difficulties in three main areas known as the triad of impairments. These areas are as follows Communication The impairment of communication may show itself in some or all of the following ways Delayed or complete lack of development of spoken language, and no alternative modes of communication automatically developed to compensate for this In those with speech there may be an impaired ability to initiate or sustain a two-way conversation. You can often get the impression that the child is talking at you rather than to you. Stereo typed and repetitive use of language, often centring around childs special interest Child may be able to ask for their own needs but does not understand that words can be used to convey emotional and social information Poor comprehension of non verbal communication Literal understanding of words, no understanding of irony or sarcasm Pedantic speech Pro noun reversal (for example getting terms such as me you and them confused) Make factual comments often irrelevant to situation Impairment affects both expressive and receptive language Poor control of pitch, tone and intonation
The National Autistic Society 2003 Not to be reproduced without permission The National Autistic Society 393 City Road London EC ! N" T# 020 $%33 2299 E# nas&nas'or('u) ***'nas'or('u)

The National Autistic Society produces fact sheets on a wide variety of topics. These are available from our Autism Helpline and on our website.

The National Autistic Society is a Company limited by Guarantee Registered in ngland No. !"#$"%& Registered as a Charity. No. "'%("$

Social Interaction The impairment of social interaction may show itself in some or all of the following ways Impaired use and understanding of non verbal behaviours, for example eye contact, facial expression and body postures Difficulty developing peer relationships Lack of spontaneous seeking to share enjoyment, for example pointing Lack of social or emotional reciprocity Difficulty relating to others Any interaction is often very one sided

There appear to be three main types of impairment in social interaction in children with autism. These are as follows: The aloof child who may appear rather withdrawn and indifferent to other people, and may be difficult to comfort when distressed The passive child who will not make spontaneous approaches to other people but will accept contact if initiated by others. The active but odd child who will approach other children spontaneously but this will often be in an odd or inappropriate manner. Often they may pay little attention to the responses of those they have approached.

Children can move from one interaction style to another as they develop. Social ima(ination The impairment of social imagination may show itself in some or all of the following ways. Inability to play imaginatively with objects, toys or other people Tendency to select for attention minor aspects of things in the environment instead of an understanding of the whole picture. For example focusing on the wheel of a car instead of the whole vehicle. Difficulty empathising with other people or seeing things from another point of view Repetitive and stereotyped activities. These can take many different forms, from a very simple repetitive body movement, for example flicking fingers, to an intense attachment to certain objects, to a fascination with certain topics such as Star Wars, train time tables, dates and astronomy. Children with autism can be extremely rigid in their thinking and can have great difficulty coping with any change. They may insist on certain things being the same, for example people sitting in the same places at the dinner table or in the car, or going the same route to places.

+ther Associated ,ifficulties often seen in Children *ith Autism -otor Coordination Some children with autism have difficulties with motor imitation and control. For example, they may have an odd posture or springy tiptoe walk. Some children may appear clumsy and have difficulty differentiating between left and right and up and down. .y/ersensiti0ity Some children with autism do appear to have unusual responses to sensory experiences. For example, some appear hypersensitive to certain sounds, such as thunder or car alarms. Similarly some may show signs of other sensory hypersensitivities, for example a strong sense of smell or taste. For further information on sensory issues and autism see the fact sheet the sensory world of autism available from the Autism Helpline, from our website at http://www.nas.org.uk/nas/jsp/polopoly.jsp? d=299&a=3766 or in a booklet format (see useful reading section below) 1seful Readin( T. Attwood (1993) Why Does Chris Do That? (NAS: London)* K. Wilkes (2005) The sensory world of the autistic spectrum: A greater understanding(NAS: London) * L. Wing (1996) The Autistic Spectrum: A Guide for Parents and Professionals ( Constable: London)*

Communicating with Children with Autism

Certain styles of communication seem to be particularly effective with children with autism Have your childs full attention when you speak to them. Use their name so they know you are talking to them. Try to reduce any background noise for example the TV or radio when speaking to your child so they can focus on your words. Keep language simple. Only use necessary words. For example instead of saying would you please come over here and sit down on the chair try saying Jack, sit down Dont make promises you may not be able to keep.

Children with autism often have a very literal understanding of language, and therefore can become very confused and sometimes distressed if sarcasm or irony is used. You should also try to avoid using phrases such as frog in your throat I laughed my head off give me a hand etc.. Use concrete terms, particularly with reference to time. For example instead of saying we will go to the shops later try saying we will go to the shops at 3pm, or if the child can not tell the time say we shall go to the shops after lunch.

Be positive, dont just tell your child what they shouldnt be doing but instead tell them what they should be doing. For example instead of saying dont throw your toys all over the floor say put your toys in the toy box

Provide extra thinking time for information to be processed. Some people with autism may process auditory information differently or more slowly than other people. Therefore it may be necessary to allow extra time for a person with autism to respond to a request or question. Use visual supports. Some people with autism appear to have particularly strong visual skills and may understand information that is presented visually to them better than information processed through spoken language. There are a variety of options that can be used to help children to communicate in this way. For example you can use photographs or symbols to communicate what is happening next to ease anxiety. (The following web site has over 300 picture cards which can be printed off http://www.dotolearn.com)

1seful readin( C. Potter & C. Whittaker (2000) Enabling Communication in Children with Autism (JKP: London)* J. Savner & B. Smith Myles (2000) Making Visual Supports Work in the Home and in the Community. Strategies for Individuals with Autism and Asperger Syndrome (Autism Asperger Publishing Co.London)* Information sheets on using visual supports and Communication and interaction are available from the NAS Autism Helpline.

Understanding the Child with Autism

When trying to understand your child with autism it is important to remember the three main areas they have particular difficulty with: Communication, social interaction and social imagination. Another factor that is important to remember is the idea of children with autism lacking a theory of mind. Theory of -ind A theory of mind is the ability to infer mental states such as beliefs, desires, intentions and emotions. This theory states that people with autism have difficulties doing this. For example they have difficulty imagining what someone else may be thinking or feeling. This leads to poor empathic skills and difficulty in predicting what other people may be about to do. Children with autism may think you know exactly what they know and think. Examples of Children with Autism Lacking a Theory of Mind Joanne is very thirsty. In her mind you know she is thirsty and yet you are carrying on as normal and dont seem to realise. Joanne thinks why should she ask for a drink? Mum already knows how dry her throat is and she hasnt offered her anything. Why would saying the words I want a drink make any difference? Jack was playing with Thomas the Tank Engine at his playgroup when another child snatched it from him. Jack hit the girl over the head, and she punched him back. The playgroup supervisor intervened and asked Jack what he had done. He replied that he had hit the girl. Jack was asked if he realised how the girl felt about being hit. He said he didnt know. He was then asked what had happened to him. Jack said he was hit and that it hurt and had upset him. The supervisor again asked Jack how the girl might feel. Jack still didnt know.

Useful Reading and Resources Carol Gray (2002) My Social Stories Books (JKP: London)* P. Howlin, S. Baron-Cohen & J. Hadwin (1998) Teaching Children with Autism to Mind Read: A Practical Guide (John Wiley & Sons ltd.: London)* Mind Reading CD.*

An Autism Friendly n!ironment

Some children with autism are hypersensitive. Where possible use soft lighting and avoid fluorescent and harsh lighting which may be distracting. Children with autism may also be hypersensitive to noise, whilst being quite noisy themselves. Furnishings can help reduce noise levels in your home, for example carpet may be better than laminate flooring. It has been suggested that people with autism find it helpful if furniture is kept to the peripheries of the room, and the middle space kept clear. Using colours that distinguish walls, floors and furniture make rooms easier to navigate for children with autism. Furnishings should be plain in colour, as patterns can be confusing to walk across and may increase anxiety. Cosy chairs, dens, bean bags and duvets can all help to make children with autism feel calmer and safer.

Make sure your house is safe. Some children may try climbing out of windows or running out of the front door into the road as they often have very little sense of danger. If your child does have a tendency to run out of the door there are alarm systems available. For details contact the NAS Autism Helpline. Dont have any poisonous substances in the house, including plants. Have locks on cupboards A child with autism can need their own privacy and personal space like any other child. Try to ensure that there is a safe place for them to be alone. If possible, create space to exercise both inside and out the house. Trampolines in particular are very popular with children with autism. It may be helpful to have visual supports for your child around the house. For example a picture timetable of what is happening during the day. For further information see the NAS fact sheet Using visual supports

Useful Reading

An information sheet on creating an autism friendly environment is available through the Autism Helpline, or on the NAS website at http://www.autism.org.uk/nas/jsp/polopoly.jsp? d=299&a=9610 It is also available to purchase in a booklet format ( see recommended reading at the end of this information sheet)

Beha!iour "anagement
Some children with autism exhibit challenging behaviour. This is a complex issue and it would be helpful to consult books in the recommended reading section for an in-depth look at the subject. Most behaviour problems are as a result of the communication difficulties experienced by those with autism, and therefore it is important to consider what the function of the behaviour is and look at ways to enable the child to communicate this appropriately through words or signs as an alternative to the behaviour. Below are some very general guidelines. Try to incorporate some sort of routine and structure in to your childs day. Make sure your child understands what is happening next. The use of photographs or picture symbols can be particularly effective for this. Keep to your word. Once you have agreed to something with your child it is important to try to keep to it. Extreme anxiety can occur when something they expect to happen does not. Try preventative measures. For example think of things to distract the child from whatever may be upsetting them. Encourage your child to go out in to the garden or somewhere safe when they are becoming angry or upset. Make sure that they can get there easily without encountering too many obstacles on the way. Channel behaviour positively. If your child goes in to the kitchen and smashes the crockery when they are anxious, think of ways to channel this. For example keep cheap crockery from car boot sales in a marked box and set some rules such as you can smash this crockery at the bottom of the garden or may be a visit to the bottle bank could provide a similar output for this energy. Listen to your child. More able children with autism may be able to express in some way to you what is upsetting them. This may occur at the time or in many cases hours or even days later. Observe your childs behaviour and see if you can notice any patterns. What are they trying to tell you? Consider the iceberg effect. You may see a particular behaviour, but the underlying reason may not be clear. When a child starts behaving differently assess if there have been any changes in the childs routine or environment at all. Also consider whether there may be a medical reason

underlying their distress. Head banging for example can sometimes occur when a child has an ear infection and similarly biting can sometimes be due to toothache. Choose the right incentives. Think of things to motivate your child to behave. What things do they enjoy? What will they find rewarding? For some children using whatever their obsessional interest is can be particularly rewarding. So for example if your child really enjoys watching Thomas the Tank Engine videos allow him or her to watch this after they have done something good or behaved well. Be consistent. Whatever strategy you choose to use with your child it is essential that you are consistent. To be successful, all those involved with your child should use the same strategy and language in response to your childs behaviour. It is very important that children with autism have clear boundaries.

1seful readin( J. Clements & E . Zarkowska (2000) Behavioural Concerns and Autistic Spectrum Disorders: Explanations and Strategies for Change (JKP: London)* J.Clements (2005) People with autism behaving badly:helping people with autism move on from behavioural and emotional challenges (JKP:London) * F. May (2005) Understanding Behaviour (NAS: London) * (this is also available free in information sheet format through the Autism Helpline. E. Schopler (1995) The Parent Survival Manual (Plenum Press: London) P. Whitaker (2001) Challenging Behaviour and Autism: Making sense- Making Progress (NAS: London) See the behaviour section on the NAS website http://www.autism.org.uk/nas/jsp/polopoly.jsp? d=1070

Disciplining the Child with Autism

Children with autism need guidance on appropriate behaviour. Does your child understand what they have done wrong? Make sure they know what they have done is wrong and why. So for example instead of saying You have been naughty today say You took your sisters sweets, they are not yours Focus on behaviour not the child. Tell your child if you are unhappy with what they have done, not what they are. So for example dont say You are naughty but make it clear that what they did was wrong. Be aware that your child with autism may not learn from experience. They often have great difficulty applying what they have learnt in one situation to another. Your child may require very clear and consistent instructions. Reinforce good behaviour. Try to reward good behaviour and where possible ignore the bad behaviour. Any attention, even being told off can be rewarding for a child.

Special circumstances. There may well be times, no matter how well behaved your child is, when they misbehave. A deterioration in behaviour may well be seen in times of anxiety, for example if there is a change in routine or in the environment no matter how small.

Getting #elp
Early Bird. (This is a course for parents of pre-school aged children with a diagnosis) For information look at our web site at www.nas.org.uk or call 01226 779218 HELP! (This is a training programme for parents of recently diagnosed school aged children, adolescents and adults running throughout UK) For information call 0117 9748411 or email help.programme@nas.org.uk Local support group (for details contact the NAS Autism Help Line or look at our online database at www.info.autism.org.uk )

NAS Autism Help Line, call 0845 070 4004 (Mon- Fri, 10am 4pm) or email autismhelpline@nas.org.uk

$ecommended reading
T. Attwood (1998) Aspergers Syndrome: A Guide for Parents and Professionals (JKP:London)* L. Hannah (2001) Teaching Young Children with Autistic Spectrum Disorders: A Practical Guide for Parents and Staff in Mainstream Schools and Nurseries. (NAS: London)* C. Hauser ( 2005) Going to the shops: A guide for parents and carers (NAS: London)* Also available as an information sheet through the Autism Helpline. M. Ives & N. Munro (2002) Caring for a Child with Autism (JKP: London)* A. Nguyen (2006) Creating an autism friendly environment (NAS : London) * Also available as an information sheet through the Autism Helpline. Leicestershire County Council and Fosse Health Trust (1998) Autism: How to Help your Young Child (NAS: London) *

If you re2uire further information /lease contact the NAS Autism .el/line

Tel# 0%34 0$03003 autismhel/line&nas'or('u) If an item is mar)ed as a0aila5le from the NAS /lease contact# 6u5lications ,e/artment ,istri5utors#

NA !u"lications
Central 7oo)s Ltd 99 8allis Road London E9 4LN Tel# 0%34 34% 99 9a:# 0%34 34% 99 2 nas&central5oo)s'com ***'autism'or('u);/u5s
Last u/dated# Au(ust 200< The National Autistic Society 2003

10