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Behaviour guidelines

Here, we aim to give you a basic overview of some of the behavioural difficulties that may be encountered by someone with an autism spectrum disorder (ASD) and their parents or carers. People on the autism spectrum of any age or level of ability can experience problems. We've used the word child throughout, but hope that the content will also be useful to those working with adults. However, every single item of information outlined below will not necessarily be relevant to everyone who has an ASD: it's important to bear in mind that each person and situation is unique.

Key points

Before looking at behaviour in more depth, it's important to highlight the key points that parents and carers need to consider when thinking about their child's behaviour:

It's not your fault
Although it may seem that your child's behaviour is always being directed only at you, the behaviour isn't caused by you directly and it isn't the result of bad parenting. You aren't the only ones experiencing this kind of situation. It's just that many parents understandably feel as if they are, especially if the behaviour is only ever seen at home and never at school. For further information please see the 'Questions we are frequently asked' section on our website, www.autism.org.uk

Consistency
Whatever strategies you decide to use to help your child need to be used by everyone involved with him. An inconsistent reaction to behaviour by different people causes confusion, stress and frustration for someone with an ASD, and can result in behaviour becoming more difficult to tackle.

Be patient
Behaviour doesn't generally change in a person with an ASD overnight. You will need to be patient and persevere for a while before you see any differences. Often results aren't immediately apparent. You may find it useful to track your child's behaviour in the form of a diary as then it may be easier to notice small, positive changes gradually (Dickinson and Hannah, 1998).

Punishment rarely works
Punishment seldom works as it doesn't teach new skills or give the person being punished an explanation of what is wanted from them. Many children with an ASD don't necessarily understand the connection between their behaviour and the punishment given (Whitaker, 2001).

Exercise
Exercise can be a fantastic way of relieving stress and getting rid of frustration. Some studies have shown that regular exercise throughout the day can have a more positive affect on general behaviour (Dickinson and Hannah, 1998). Many children with an ASD, for example, enjoy trampolining.

Time out
'Time out' is the term used to apply to the strategy of removing a person altogether from a particular situation. It generally only works when the behaviour exhibited is partially caused by environmental factors eg, a particular noise, or lights flickering. Whatever place the person is removed to should be an uninteresting, safe environment where they can be observed (May, 2005). This should also only last a few minutes and the person should afterwards be redirected to a calm, neutralising activity (May, 2005).

Be realistic
When tackling any behaviour, choose a realistic plan and set achievable goals. You don't want to cause yourself more upset and frustration than the behaviour you're trying to change by setting unachievable targets (Dickinson and Hannah, 1998).

Using new skills in different situations
People with an ASD can find it difficult to transfer or generalise new skills they've learnt from one situation to another. It's important, therefore, that whatever new skills or coping strategies your child learns, he's encouraged to use them in as many different environments as possible.

Checking that skills have not been forgotten
You may find that you need to resort to strategies that have been successful in the past from time to time. This will ensure that the person still remembers to use these skills. You may also need to revisit them at periods of stress, illness or change when old behaviour may return.

Why does my child have behavioural difficulties?

There can be a wide range of reasons why people with an ASD may have difficulties with behaviour. The fact that an ASD is a social and communication disorder means that the world can be a confusing, isolating and daunting place at times. Below are some of the possible triggers you may wish to consider when trying to find the cause of your child's difficulties, although the list is by no means exhaustive.

Communication
People with an ASD experience difficulties with communication in a number of different ways, both in communicating with others (expressive language) and in understanding what's being said to them (receptive language). They also find it hard to understand non-verbal cues, such as facial expressions and body language (May, 2005). As a result, children can become frustrated when trying to communicate their needs, or anxious as they have difficulties understanding. For further information on communication, please refer to our Communication and interaction information sheet, available on our website at www.autism.org.uk/a-z or from our Autism Helpline on 0845 070 4004.
Social situations
Communication difficulties can also have an impact on how people deal with social situations. Stress levels may be higher in an individual with an ASD as communication with others can be more effort and as a result stressful or demanding (Whittaker, 2001). People with an ASD may also not understand social rules, so the environment may be confusing and frustrating for them, especially in new situations. Social situations can be unpredictable. Some people may therefore engage in a particular behaviour to try and avoid any social contact (May, 2005).
Unstructured time
People with an ASD may have difficulty with understanding that other people have viewpoints different from theirs (sometimes called 'the theory of mind'). They may also find it hard to put what's going to happen in a day in a timetabled order in their mind (sequencing). This can therefore make it difficult to predict what's going to happen next, especially in unstructured times and social situations (May, 2005). Abstract concepts such as time aren't easy to understand: people with an ASD may find it particularly difficult to wait. Unstructured time is also often noisy and chaotic. You may find as a result behavioural difficulties occur more in transitional times between different lessons or activities (Clements 2005).
Sensory processing difficulties
Many people with an ASD can have difficulties processing sensory information, either being hyper (over) or hypo (under) sensitive. This means that certain smells, lights or sounds may cause distress for individuals. Others find it difficult to block out background noise and what they experience as excessive visual information. As a result, sounds, lights and smells seem to be processed all at the same level of intensity and overload the individual. You may find your child starts a repetitive behaviour in particularly stressful environments, such as hand-flapping or spinning, to try and block out all external sensory information. People with an ASD can also be very sensitive to subtle changes in their environment. If there's a sudden change in behaviour it's always worth considering if there has been a recent change in the environment. (For further information on sensory processing difficulties please see our information sheet The sensory world of the autism spectrum available on our website at www.autism.org.uk/a-z or from our Autism Helpline on 0845 070 4004.
Medical reasons
If your child's behaviour has suddenly changed, it's always worth having a medical check-up to make sure there is no medical basis for the distress. Children and some adults with an ASD can find it difficult to tell people how they're feeling or where something hurts, even if their verbal communication is generally good. Some children suffer from seizures which can cause irritability and confusion, or gastrointestinal problems which may be causing pain (Clements, 2005). You can try using different pain charts to help your child indicate where he may be feeling discomfort: to find out more about the paediatric pain profile (PPP) assessment scale see www.ppprofile.org.uk . Alternatively, some parents use different symbols to help their child indicate where the pain is. For information on where you can find free symbols on the internet, please see our useful contacts at the end of this document. You may also find that a particular behaviour returns during periods of illness and you may need to use a tried and tested strategy to overcome it again (May, 2005).
Bullying
Unfortunately, children with an ASD can be at more risk of being bullied than other children and if you notice a sudden change, distress or frustration, then it may be worth investigating to see if there's been bullying or repeated teasing at school. Again, this may be something that your child finds difficult to communicate to you. If you find that bullying has occurred, you may find it useful to have a copy of our Bullying information sheet, available on our website at www.autism.org.uk/a-z or from our Autism Helpline on 0845 070 4004.
Change
People with an ASD can find it difficult to cope with change, whether a temporary change to their timetable at school, or a more permanent change such as moving house. (For tips on preparing your child for such an event, please see our information sheet Moving house, available on our website at www.autism.org.uk/a-z or from our Autism Helpline on 0845 070 4004.) You may find that your child's behaviour alters at periods of change. However, this may be a temporary situation until he becomes more used to his new environment or routine.

Does the behaviour have a purpose? How can you find out?

Important questions to ask yourself when looking at any behaviour:

What is the person trying to tell you by his behaviour?
What is the behaviour doing for the child at that time (May, 2005)?

Philip Whitaker suggests that you should think of the behaviour as an iceberg, ie, whatever the behaviour you're actually seeing, there's a lot more going on under the surface (Whitaker, 2001). People with an ASD don't always show the facial expressions and body language that you'd expect when someone's feeling a certain way. Most of the time a child will be trying to tell you something through that behaviour.

Because of this, it can be useful to use a behaviour diary, in the format of an ABC chart, to try and find out what triggers the behaviour. This chart asks you to record the Antecedent (what was happening before the behaviour occurred, commenting on both the child and the environment, and on who was around at the time), the Behaviour itself and the Consequence (how did the behaviour finish, any changes in the environment and how did the child feel at the end).

By identifying potential triggers for the behaviour, it can then be easier to come up with strategies to prevent the behaviour from occurring again in the future. The strategy is then more likely to be successful as it will be addressing either the cause or the function of the behaviour (May, 2005). An ABC chart can be found in Appendix 1 of this information sheet. There's also a questionnaire in Appendix 2 to help you establish what the purpose of a behaviour may be.

When trying to tackle behavioural difficulties, it's important to select at the most two behaviours to focus on at a time. Giving your child too many new strategies at once may result in none of them working. You may find it useful first of all to write down all the behaviours youre concerned about. Be as specific as possible and then prioritise them, choosing the two most important ones to concentrate on first (Clements, 2005).

Don't worry if things get worse before they get better as this is a normal reaction when children want things to stay the same and try hard to see that they do.

Possible strategies

Below are some of the different skills and strategies often used to help modify behaviour. This is a very brief overview. For further information and examples of applying them in different situations please use the search box on our website www.autism.org.uk to refer to the section 'Questions we are asked about behaviour' which deals with a number of frequently asked questions. Alternatively, ring the Autism Helpline to talk about your particular situation in more detail.

Improving communication
As already mentioned, many behavioural difficulties can be as a result of frustration at being unable to communicate what someone wants. Some people with an ASD have a good grasp of language and can be appear very fluent in their speech. However, they may still find it difficult to find the right words to tell you something when they are anxious or upset, or find it difficult to understand what's being said to them. Use short sentences, with their name at the beginning. This can ensure that the person knows that they're being spoken to. It also means they don't have to work out what information to listen to in a sentence.

It's important to provide alternative means of communication for people who find spoken communication difficult. People with an ASD often find visual forms of communication easier to process. As a result, some people with an ASD use picture symbols or photos to communicate what they want. Others use forms of sign language. For further information on these, please see the useful contacts section at the end of this document.

Using visual support
As previously mentioned, people with an ASD often find visual forms of communication easier to understand. This can include people who have a good grasp of spoken communication. Using visual timetables can make it easier for a person to understand what's going to happen throughout the day. It also provides them with a routine and takes some of the uncertainty out of their environment. You may find it helpful to read our information sheet Using visual support, available from the Autism Helpline on 0845 070 4004.

Social stories
Social stories were developed by Carol Gray in the USA. They offer a short description of a particular situation, event or activity, which includes specific information about what to expect in that situation and why. They can provide an individual with some idea of how others might respond in a particular situation and therefore provide a framework for appropriate behaviour. For further information on social stories, or how to construct one, please see the recommended reading list, or read our information sheet Social stories and comic strip conversations, available on our website at www.autism.org.uk/a-z or from our Autism Helpline on 0845 070 4004.

Emotions identification
Many people with an ASD find it difficult to not only understand how other people are feeling, but also to register how they feel themselves. Emotions are very abstract concepts and require a degree of imagination to understand. You can't simply see anger, for example.

Stress scales can be a good way of helping people with an ASD to identify how they're feeling for both themselves and others. By using a traffic light system, visual thermometer, or a scale of 1 5, you can turn emotions into more concrete concepts in the form of colour of numbers. Green, for example, can be 'I am calm', and red 'I am angry'. You need to work on helping your child understand what angry means and this could be done by referring to physical changes in the body. For example, 'When Im angry, my tummy hurts/my face gets red/I want to cry'. When your child has begun to understand the extremes of what angry and calm are, you can then work on helping him to understand what the emotions between these two extremes are so that he can identify them. This may help him calm himself down or remove himself from the situation before he gets angry.

Please see the reference section at the end of this document for the titles of books aiming to help people with an ASD understand emotions. Details of a number of other resources designed to help people with an ASD understand emotions are also listed in the useful contacts section.

Relaxation
It can be very difficult for a person with an ASD to relax. Some people with an ASD have a particular interest or activity they like to do because it helps them relax. However, this interest or behaviour in itself can be the source of behavioural difficulties at times, especially if they're unable to do the activity or follow their interest at a particular moment. Some individuals may need to be left alone for short periods of the day to help them unwind. Soothing music or homeopathic remedies may also work. Others may find lights particularly soothing, especially those of a repetitive nature, such as spinning lights or bubble tubes. If there's a particular behaviour or interest that you know helps to relax, is it possible to have that built in the daily routine or is there something similar that can be done instead?

Environmental modifications
As previously mentioned, people with an ASD can have difficulties processing different sensory information. As a result, there may be things in the environment which act as severe irritants. Sometimes it can be easier to remove something from the environment thats potentially causing a problem, rather than trying to change a behaviour pattern. Are there flickering lights, humming noises, or smells in a place which may be causing distress? Remember, a person with an ASD may hear/smell/taste things much more strongly than other people. It could therefore be something that you may not have even thought of as being a problem.

Positive reinforcement
It's important that as a person learns a new skill or strategy, they are given as much positive reinforcement as possible. This can be in the form of verbal praise, a sticker on a star chart, five minutes with their favourite activity or video. The important thing here is that the person is given a positive reinforcement that is meaningful to him, and that it is given immediately after the skill is demonstrated. This means that the person will hopefully learn to make an association between the skill and the reward and start to use the skill more often.

When to get help

If the person places themselves or others at risk of injury, the behaviour is occurring in a number of environments and they are resistant to intervention or you are finding it difficult to cope, then you should seek professional support (May, 2005). The Autism Helpline has a database of professionals, some of whom offer follow-up support post diagnosis. Please call 0845 070 4004 to find out if they are aware of anyone in your area, or search www.autismdirectory.org.uk Alternatively, ask your GP to refer your child to a clinical psychiatrist, psychologist or behavioural support team (May, 2005).

We list courses on behaviour for parents and carers run by ourselves and other organisations on our website. Further information on the courses currently running can be found at www.autism.org.uk/courses or by contacting the Autism Helpline.

Other parents can also be a useful source of support and information, and talking to someone else can make the family feel less isolated. Local support groups can be a fantastic source of support and if you would like details of your nearest group, please call the Autism Helpline or search online at: www.autismdirectory.org.uk (For national contacts, please see our useful contacts listing at the end of this information sheet.)

Some families may also seek help from social services for support and to obtain respite and a break for the family. For further information on accessing support from social services for a child please see our information sheet Social services: getting help for your child: For information on accessing help from social services for an adult, please see our information sheet Community care: a guide for adults with an ASD and their carers. These are both available on our website at www.autism.org.uk/a-z or from the Autism Helpline. Details of some respite schemes can also be found at: www.autismdirectory.org.uk

For further information on behaviour, please contact the Autism Helpline to request our information sheet Understanding behaviour or see the recommended reading section.

Useful contacts/resources

A and E Squire Ltd
Bloxwich Road North
Willenhall
West Midlands
WD12 5PX
Tel: 01922 476243
Email: info@nichelocks.com
www.aesquire.com
Sells locks for cupboards and doors.

Raising Horizons
16 Brough Road
South Cave
HU15 2BX
Tel: 01482 651695
Fax: 01482 659281
Email: info@raisinghorizons.com
www.raisinghorizons.com
Sells a number of products to help children understand emotions as well as social situations.

British Psychological Society (BPS)
St Andrews House
48 Princess Road East
Leicester
LE1 7DR
Tel:0116 254 9568
Fax: 0116 247 0787
Email: enquiry@bps.org.uk
www.bps.org.uk
The regulatory body for psychologists in the UK. You can search for details of psychologists on their website.

British Association for Counselling and Psychotherapy (BACP)
BACP House
35-37 Albert Street
Rugby
CV21 2SG
Tel: 0870 443 5252
Email: bacp@bacp.co.uk
www.bacp.co.uk
Can provide you with details of counsellors.

British Association of Behavioural and Cognitive Psychotherapies (BABCP)
BABCP
Victoria Buildings
9 - 13 Silver Street
Bury
BL9 0EU
Tel: 0161 797 4484
Fax: 0161 797 2670
Email: babcp@babcp.com
www.babcp.com
Can also provide you with details of counsellors.

The Challenging Behaviour Foundation
c/o The Old Courthouse
New Road Avenue
Chatham
Kent
ME4 6BE
Telephone: 0845 602 7885
Email: info@thecbf.org.uk
www.thecbf.org.uk
Provides information and support to parents and carers of individuals with severe learning disabilities and challenging behaviour.

Crelling Harnesses
12 Crescent East
Cleveleys
Lancashire
FY5 3LJ
Tel: 01253 852298
Email: jenny@crelling.com
www.crelling.com
Sells safety harnesses for cars and buses.

Cognitive Affective Training
www.cat-kit.com/en/
Email: info@cat-kit.com
Tony Attwood was one of the professionals involved in designing this kit. Its aimed at teaching children to manage emotions and understand different social situations.

The College of Occupational Therapists Specialist Section - Independent Practice
Tel: 0800 398 4873
www.otip.co.uk
Can provide details of private occupational therapists.

Easylink Electronics
Medpage Limited T/A Easylink UK
Units 4 - 7,
Grange Road Ind, Est,
Geddington,
Northants ,
NN14 1AL
Tel: 01536 744788
Email: sales@easylink.uk.com
www.easylinkuk.co.uk
Sells personal alarms, sensor mats, door buzzers.

Epsan Sports
Tel: 01299 829213
Sells an air cushion that some children find particularly comfortable to sit on.

Free symbol websites
www.do2learn.com
www.symbolworld.org/
http://www.enchantedlearning.com/Dictionary.html
http://pdictionary.com/
http://trainland.tripod.com/pecs.htm

Hawkins Bazaar
Tel: 0870 429 4000
Email: sales@hawkin.co.uk
www.hawkin.co.uk
Sells very cheap fidget toys.

Homecraft Rolyan
Nunn Brook Road
Huthwaite
Sutton in Ashfield
Nottinghamshire
NG17 2HU, UK
Tel: 08444 124 330
Fax: 08448 730 100
Email: via website
www.homecraft-rolyan.com
Sells thera tubing for children to bite down on.

In Car Safety
Tel: 01908 220909
www.incarsafetycentre.co.uk
Sells car harnesses.

Incentive Plus
Unit 6 Fernfield Farm
Whaddon Road
Little Horwood
Milton Keynes
MK17 0PS
Tel: 0845 180 01 140 or 01908 526120
Email: info@incentiveplus.co.uk
www.incentiveplus.co.uk
Sells a number of emotional and social skills resources.

Jusonne UK
P.O. Box 2882
Stratford-Upon-Avon
Warwickshire
CV37 7YW
Tel: 0845 1665991
Email: sales@jusonneuk.co.uk
www.jusonneuk.co.uk
Sells safety reins and wander alarms.

Kapitex Healthcare
Kapitex House
1 Sandbeck Way
Wetherby
West Yorkshire.
LS22 7GH
England
Tel: 01937 580211
Website: www.kapitex.com
Sells chewy tubes: select the dysphagia and oral motor exercise tab on the home page for information if viewing online.

Kinderkey
Tel: 01978 820714
Email: contact@kinderkeyinternational.co.uk
www.kinderkeyinternational.co.uk
Sells a range of education toys and equipment including a bed for children who self harm.

LDA Learning
Pintail Close
Victoria Business Park
Nottingham
NG4 2SG
Tel: 0845 120 4776
Email: ldaorders@compuserve.com
www.ldalearning.com/
Sells special educational needs resources, including social skills training.

Makaton
The Makaton Charity
31 Firwood Drive
Camberley
Surrey
GU15 3QD
UK
Tel: 01276 61390
Email: info@makaton.org
www.makaton.org

Natobe Safety
Portsmouth Technopole
Kingston Crescent
Portsmouth
Hampshire
PO2 8FA.
Tel: 023 9271 2293
www.natobe.co.uk
www.natobe.co.uk
Sells wander alarms.

Promedics
Tel: 01254 619000
Sells a number of sensory products including Therabanding Tubing for children to bite on and various pencil grips.

Pyramid Educational Consultants UK Ltd
Pavilion House
6 Old Steine
Brighton
BN1 1EJ
Tel: 01273 609555
Email: pyramid@pecs.org.uk
www.pecs.org.uk/

Reward Board
6 Long Wall
Adderbury
Oxfordshire
OX17 3FD
Tel: 0845 094 1916
Email: orders@rewardboard.co.uk
www.rewardboard.co.uk
This company has designed a portable reward system for a child to carry around.

Safespaces
11 Cleveland Street
Todmorden
Lancashire
Tel: 01706 816274
Email: info@safespaces.co.uk
www.safespaces.co.uk
Sells removable padding that is placed on the floors or walls to minimize injury.

Sandtimer
Available from the education shop online
Email: via the website below
www.the-education-shop.co.uk

Security World Ltd
Tel: 0161 633 1300
Email: sales@security-world.com
www.securityworld.com
Sells child wander alarms and tagging.

Sleepsuits
Tel: 01706 340 682 (children and adults)
www.kcsleepsuits.co.uk
KC sleepsuits.

Racketys
tel: 01538 381430
Email: myorder@racketys.com
www.racketys.com
Specialist clothing suppliers for people with disabilities.

Time timer
Please see the NAS website in the NAS publications section
www.autism.org.uk/pubs and look in the resources section

Winslow
Goyt Side Road,
Chesterfield, Derbyshire
S40 2PH
Tel: 0845 230 2777
Email: sales@winslow-cat.com
www.winslow-cat.com
Sells a number of special educational needs resources, including social skills training materials.

References/recommended reading

* Attwood, T. (1998). Asperger syndrome: a guide for parents and professionals. London: Jessica Kingsley

* Attwood, T. (2006). The complete guide to Aspergers syndrome. London: Jessica Kingsley

* Clements, J. and Zarkowska, E. (2000). Behavioural concerns and autistic spectrum disorders: explanations and strategies for change. London: Jessica Kingsley

* Clements, J. (2005). People with autism behaving badly: helping people with ASD move on from behavioural and emotional challenges. London: Jessica Kingsley

* Dickinson, P and Hannah, L. (1998). It can get better: dealing with common behaviour problems in young children. a guide for parents and carers. London: The National Autistic Society

* Dunn Baron, K. (2003). When my autism gets too big: a relaxation book for children with autistic spectrum disorders. Shawnee Mission, Kansas: Autism Asperger Publishing Company

* Dunn Baron, K. and Curtis, M. (2003). The incredible 5-point scale: assisting children with autism spectrum disorderss in understanding social interactions and controlling their emotional responses. Shawnee Mission, Kansas: Autism Asperger Publishing Company

*Grandin, T. and Scariano, M. M. (1986). Emergence - labelled autistic. New York: Warner Books

Gray, C. (ed.) (1994). The new social story book. Arlington, Texas: Future Horizons

* Gray, C. (2002). My social stories book. London: Jessica Kingsley Publishers

* Jackson, L. (2002). Freaks, geeks and Asperger syndrome. London: Jessica Kingsley Publishers

* Lawson, W. (2005). Sex, sexuality and the autistic spectrum. London: Jessica Kingsley Publishers

May, F (2005). Understanding behaviour. London: The National Autistic Society

Perske, R. (1988). Circle of friends. Tennessee: Abingdon Press

Schopler, E. (1995). The parent survival manual: a guide to crisis resolution in autism and related developmental disorders. New York: Plenum Press

* Thorpe, P. (2003). Moving from primary to secondary school: guidelines for pupils with autistic spectrum disorders. London: The National Autistic Society

* Whitaker, P. (2001). Challenging behaviour and autism: making sense making progress. A guide to preventing and managing challenging behaviour for parents and teachers. London: The National Autistic Society

* Wilkes, K. (2005). Moving house. London: The National Autistic Society

* Wing, L (1996). The autistic spectrum: a guide for parents and professionals. London: Constable

Books marked with a * are available from NAS Publications. Order online or by contact our distributors:

NAS Publications
Central Books Ltd
99 Wallis Road
London E9 5LN
Tel: 0845 458 9911 Fax: 0845 458 9912
Email: nas@centralbooks.com
Order online: www.autism.org.uk/pubs

If you require further information please contact the
NAS Autism Helpline
Tel: 0845 070 4004
Email: autismhelpline@nas.org.uk

Last updated: March 2008
© The National Autistic Society 2008
The National Autistic Society is the UKs leading charity for people affected by autism