How can I best support a person with Autism?

Professionals supporting people with autism must work in a model of person centered practice which takes into account the unique skills, abilities, needs, wants, dreams and goals of the person as well as their individual communication, behavioural, sensory and health needs.

• The person with autism should be directive of their own care as much as possible, making as much choice as they are able.
• Communication and a collaborative partnership between the service provider, the person with autism and their support people is essential.
• Clear and accurate information is needed to make informed choices about care.
• Services should be tailored to each individual according to their needs and wishes.
• Every person has capabilities and is entitled to contribute in any way possible to direct their own care.
• It is important for service providers to collect the information they need to provide support in a safe, supportive and inclusive way.
• Autism affects people in very different ways- some people will need minimal support in some areas, whilst others will need intensive support in most areas.
• Solutions to problems need to be tailored to each unique individual

To effectively meet the person’s needs planning is important. Sit and learn about the person you are working with (include family, friends and other support people)
What are this person’s
• Needs
• Wants
• Goals
• People Places and Things that are important
• Things that are needed to keep the person happy safe and well
• Any noteworthy dislikes
• Behaviour and medical concerns should be considered after initial planning and should not be seen as a restriction on service provision.
• Plans should be dynamic living documents that contain lots of info about the person and include visuals- not a drab document that lives in a drawer
• Update often check on regular progress

Understanding Behaviour

Not all children and adults with ASD have behavioural problems. Those that do are often reacting to a world that is confusing and unpredictable. All behaviour has a purpose or function that produces a result. For people with ASD, the desired result may be to reduce stress.

Children and adults with ASD:

• Can get very frustrated when they can’t do something, but they may not understand that other people can help, so they don’t ask for it. Instead, they might cry out or throw things.
• Have difficulty anticipating future events. When their needs are not met immediately, they might think they will never get what they want. So they might lash out or have a tantrum.
• Can be hypersensitive to sensory stimuli, such as particular sounds or a flickering light. This can increase stress or trigger outbursts of aggression.
• Might lash out or destroy things as a means of communication. The behaviour may be their way of saying, “I’m bored” or “It’s too noisy.”
• -Often lack empathy so they have little understanding of their own mental state and that of others. They don’t understand how their behaviour affects others.
• Might laugh or cry inappropriately when highly aroused or anxious.
• Experience severe stress far more frequently than most people do and they are less able to deal with it effectively. They don’t always recognise signs of stress in its early stages, and they don’t always know what to do about it when they do recognise it.
• Have even more difficulty understanding language and expressing themselves when they are stressed. Their ability to control inappropriate behaviour decreases and their sensory systems can become overstimulated, so they do not cope as well with noise, visual stimuli and other sensations.
• Often have fears and phobias (particularly in young children.) Fears can be based on a single frightening experience.
• Sometimes develop anxiety disorders, ie. panic attacks or obsessive compulsive disorder because they cannot cope with stress.
• Often display repetitive behaviours such as humming or finger flicking. This can be a way of controlling an unpredictable world, thus reducing anxiety. Self-stimulatory and repetitive behaviours may also be a kind of hobby – they enjoy the sensation.
• Have different sensory thresholds. Those with high thresholds will seek out stimulation, ie. stimulate themselves. Those with low thresholds avoid sensory input, ie. by withdrawing.
• Might injure themselves when they are frustrated or in physical pain, ie. headache, stomach pain.

Managing Behaviour

• Remain calm and remind yourself the behaviour is an attempt at communication – don’t immediately assume it is misbehavior.
• Only try to stop behaviours that affect well-being, interfere with others or are socially inappropriate. While the behaviour may seem odd, it serves a purpose, ie. to keep the child or adult calm. If you tell them to stop, they are likely to become even more anxious and upset because they will then have to try to control the compulsive behaviour and cope with their stress at the same time.
• Attempts to stop repetitive or self-stimulatory behaviour are unlikely to succeed. The behaviour serves a purpose so it is important to replace it with something more acceptable or modify it. First, identify causes of stress and make changes to the environment.
• Lecturing, threatening or punishing will not stop difficult behaviour.
• Try to restrict repetitive behaviours to a certain place, or only at certain times.
• Give an alternative. Some people with ASD don’t know what to do when you tell them to stop doing something inappropriate.
• Clearly state the consequences of aggressive behaviour before it occurs. Talk to the parents or carer about dealing with aggressive behaviour. Have a consistent plan of action.
• Make a note of activities that cause difficulty. Encourage them to ask for help before they reach the point of frustration. However, try to avoid doing things that the child or adult can do for themselves.
• Talk to the parents or carer about positive rewards that will motivate the child or adult with ASD and encourage appropriate behaviour.
• Be aware of signs of stress. People with ASD may not show their stress the way other people do. Look for triggers such as body posture, change in tone of voice, more or less talkative, becoming teary or restless.
• Help the child or adult develop self-awareness of their own mental state, to recognise feelings of stress or discomfort, to communicate these feelings and act on them appropriately. This helps them to match feelings / sensations to situations. Talk through their feelings and give them prompts, such as “You look worried, do you need help?” When they become more aware of their own mental state they can start using strategies to cope with their anxiety.
• Physical exercise is a good way of letting go of accumulated stress. Try bike riding, running, trampolining. Stress balls may also be useful.

Understanding Communication Difficulties

People with ASD:
• Lack social awareness, so they sometimes say things that are very blunt or rude.
• Sometimes sound articulate and have an extensive vocabulary but these skills can mask severe language difficulties. This is often the case with a person who has Asperger’s Syndrome or high functioning autism. Their speech may sound very rigid or formal.
• Sometimes repeat words, phrases or questions. This is known as echolalia. It often indicates poor receptive language skills. It is considered positive in young children as it shows they are ‘tuned into’ language. It should not be discouraged. It is often a phase that children go though before they develop more meaningful communication.
• Might feel very uncomfortable looking directly at someone when speaking or being spoken to. Eye contact is a skill that does not develop naturally.
• Have difficulty using and interpreting other non-verbal cues such as gesture and facial expression.- Sometimes ask questions repeatedly because it helps relieve anxiety. They may be reassured by hearing the same response over and over and become distressed if the answer differs in any way from what they want to hear or what they heard the first time.
• Sometimes talk over the top of others or constantly interrupt because they lack the ability to ‘read’ a conversation, take turns and join in when it is appropriate.
• Might talk incessantly about a favourite topic because they don’t have the language skills to simply chat. They usually miss the cues that suggest someone is getting bored with their conversation.
• Often interpret language literally. Figures of speech, humour and sarcasm may also be misunderstood.
• Have difficulty with long verbal instructions. – break tasks down into steps
• The person may need time to respond to a question or to complete a task

Managing Communication Difficulties

When giving instructions:
• Gain attention first.
• Be direct about what/where, ie. ‘put your blocks in the toy box’.
• Be clear and specific.
• Give one instruction at a time and don’t continue to talk afterwards.
• Be constructive. Give the desired behaviour rather than stating the behaviour to be stopped. For example, instead of ‘don’t jump on the couch’ say ‘sit on your bottom’.
• Be patient, allow time to respond to the instruction, then complete the task.
• If they do not do as asked, firmly repeat the instruction once, then help them by modelling (showing) them the task.
• Be aware of phrases that could be interpreted in more than one way.
• For repetitive questioning, answer the question but try varying your answers. Or try to move the conversation on by answering the question, then asking another question.
• Don’t assume that a person with ASD can read your intentions from your body language or facial expression.
• Encourage eye contact in young children, but don’t insist if it causes anxiety, it is better for the person with ASD to learn how to orient their body toward someone to show that they are interested in listening and communicating.
• Be aware that an extensive vocabulary can mask receptive language difficulties.
• Avoid using abstract concepts like ‘in a minute’. These have very little meaning to people with ASD.
• If sign language is used to support communication, ask the parents or guardian to teach you a few basic signs.

Understanding Social Interaction Difficulties

• Social skill deficits are a core characteristic of ASD.
• People with ASD:
• Have difficulty understanding the thoughts and feelings of others, they can also have difficulty understanding and monitoring their own emotions.
• Might misinterpret what is implied by an affectionate gesture such as a pat on the back or touch on the arm.
• Have difficulty with conversational turn-taking, staying on topic and holding eye contact due to their impaired social interaction skills.
• Have difficulty appreciating the feelings of other people, they have trouble showing empathy, and sometimes make comments about the physical appearance of others that are not very tactful.

People with ASD

• Might actually prefer the company of adults because they seek social interaction for what they can learn from the other person, rather than for enjoyment. Adults are also likely to be more understanding of the child’s peculiarities.
• Have difficulty with concepts such as sharing, waiting and taking turns. When playing games, they may always want to win or come first because they like predictability.

Understanding Obsessive Behaviour

• People with ASD:
• -Love routine. They like to know what is going to happen next. When things happen in a set order, they get a sense of comfort and security.
• Can become very anxious when routines are disrupted or something unexpected occurs. This can lead to challenging behaviour. Sometimes even the most minor changes can lead to distress.
• -Tend to have a narrow range of interests. Obsessions can be self-stimulatory; attachment to objects (trains, dinosaurs); verbal obsessions (facts, dates, number plates) or an insistence on sameness and resistance to change (lining up objects).
• Love to talk about or play with their obsessive interest as it reduces anxiety and gives them control over their environment. It provides stability in a world they find ever-changing and unpredictable.

Managing Obsessive Behaviour

• It is essential that service providers understand the need for continuity of care
• Give parents as much warning as possible if the usual carer is unavailable so they can prepare for the change.
• Carers should give a five minute warning prior to a change in activity, especially if moving from a favourite activity to one that is not so enjoyable, ie. bath time.
• Many people with ASD are reassured by knowing what will happen after an event. So if you are taking them on an outing, remind them that they will come home afterwards.
• Rituals and routines may seem odd or bizarre, but they do serve a purpose, ie. to reduce anxiety. It is good for children with ASD to have some spontaneity and flexibility to prevent them becoming too dependent on routines, however not all will be able to cope with this.
• Obsessive interests can really wear down parents and siblings. Children with ASD will enjoy having someone else around to listen to them talk about their preferred topics or play their favourite game over and over. Be enthusiastic!

Understanding Sensory Issues

People with ASD:
• Have sensory processing difficulties. They may seek or avoid sensory stimulation. They may be overly sensitive or very slow to register sensory input. This can be in the areas of tactile, visual, auditory, taste, smell, body movements and positions. Sensory processing varies greatly from person with ASD to another.
• Can suffer from noise overload. This might be too much noise or just some noises in particular, ie. Unexpected sounds like a telephone ringing or dog barking.
• Have difficulty coping with a large amount of visual stimuli and often don’t know where to focus, ie. The colors and lights in a shopping mall. Some are unable to tolerate bright sunlight.
• Often have a heightened sense of touch. They may prefer physical affection to be on their terms.
• Sometimes have a strong reaction to perfume or deodorant, leading to avoidance of physical contact.

Managing Sensory Issues

• Familiarise yourself with each person’s particular sensory issues.
• Ask parents/guardian whether strong perfume or deodorant may cause problems. Keep noise to a minimum in the home if this is an issue.
• Remember that common calming techniques such as cuddling or sitting the child on your knee will not have the desired affect if the child dislikes physical contact. Check with parents/guardian for the most appropriate calming techniques.

Understanding Toileting Issues

People with ASD:
• Sometimes need a very clean toilet and bathroom environment in order to be comfortable using the toilet. Public toilets may be very different and frightening compared to the one at home.
• May not tell someone they need to go to the toilet or may not ask for assistance
• May need prompting to use the toilet and will need to be shown where the toilet is in a new environment.
• These issues need to be approached discreetly with sensitivity

For more information about person centred practice see

http://www.helensandersonassociates.co.uk/