There have been a number of pieces of research undertaken in the past 20 years about the impact of supporting a young person with autism at home, and it’s consistently highlighted how parents primarily need help to understand and manage behaviours which challenge them.
Key issues around behaviours include the development of functional spontaneous communication, development of social relationships and acquisition of functional abilities in meaningful activities. The development of these skills reduces anxieties and avoids the "meltdowns" that parents find such a challenge.
Young people with autism need to be taught how to gain pleasure from relationships as this is not an inherent skill. Typically, developing children seek out verbal and non-verbal communication at an early age and endorphins are released making the experience one that they will repeat. Young people with autism are not wired to get this "pleasure rush" from interaction and so have to be rewarded with more tangible reasons to want to repeat this experience; in other words, they need to understand how interacting with a person is a good thing.
Interactions can be made rewarding by using areas of special interest, giving the young person a tangible reward such as an item that they want and supporting them to understand that interaction can bring pleasure.
There are other ways that parents can help their children with autism to manage their anxieties, which are at the foundation of most anti-social or unwanted behaviour.
Structure, Routine and Predictability
Young people with autism tend to lack prediction skills and do not cope well with change. Establishing routines that are fixed can be very helpful in aiding the young person to understand what's happening now and what will happen later. This can be done using a schedule of what will happen during the day and can be ticked off as it is achieved.
Provide information either in written or pictorial form to show the steps required to complete an activity. This reinforces the order that a task needs to be completed in and provides an aide memoire if the young person forgets what comes next.
For more able young people this can take the form of a list in a filofax to make it more age appropriate.
The physical environment can be a huge challenge for young people with autism because of their sensory issues, and having an organised space can be very helpful. Clear, uncluttered rooms can offer a calm space which is predictable and non-threatening. Cupboards which are labelled with the contents can be really helpful to give information and this also keeps worktops clear which can prevent young people from ‘sweeping’ items on to the floor.
Beware of strong smells which can be omitted from air fresheners and make sure that the environment is not a constantly changing one. If you plan on changing the layout or contents of a room then prepare the young person for this before it happens.
Giving rooms a structure can allow the young person to retreat to a "safe space", such as a bean bag in the corner, when they are not coping and want some time away from the rest of the family.
Understanding the reasons behind behaviours
All behaviour exists for a reason, there is no such thing as an autistic behaviour. There are two key points to remember when trying to manage behaviour; teach tolerance or remove the cause. The behaviour might be occurring because of a situation, scenario or item that the young person simply cannot tolerate. In this instance you can either remove the offending item or situation or start to teach tolerance of it. To teach tolerance it may require giving very short exposure to it and slowly increase this. This could be supported by visual or written information.
By getting to the core of why behaviour is occurring parents can be pro-active and try and stop it occurring in the first place. It is important to look back when problem behaviour has occurred and ask the following questions:
- Where did the behaviour occur?
- What happened just before?
- What was being asked of the young person?
- Who was there?
- What did the young person do?
- What was the outcome?
This should give some indication of why the behaviour is happening, and armed with this it may be possible to stop the behaviour from being repeated in the future.
Further questions should guide thinking on how to manage in these situations:
- Is the behaviour because of impairment in social interaction or communication (could the young person be using their behaviour to communicate a want or a need?). If so then give them the means to communicate more effectively
- Is the behaviour because of a change in routine? If so then make sure that advanced warning of this is given
- Is the behaviour around wanting to engage in special interests? If so put some boundaries around this
- Is the behaviour due to skewed sensory issues? If so modify the sensory environment
- Is the behaviour to pain? It is well documented that ear ache can lead to self-injurious behaviours.
Young people with autism can struggle to understand their emotions and the emotions of others and it can be useful to talk about this and strategies that they can use when they are upset or angry, such as moving to a safe space to calm down.
It is also very important that there is an understanding that some days will be more of a challenge to young people with autism than others and on these days reducing requests may help.
Strategies for dealing with increased levels of agitation and anxiety
Parents and carers will be an expert on their child, and will know the way that they usually respond and behave. It can be useful to use the following guide to try and stop behaviour from occurring in the first place:
- Avoid situations which are known to be stressful
- Use a timer or a countdown to support less favoured activities
- Identify signals which indicate increased levels of stress such as noises, words or actions
- Be calm and compassionate. It is important that the young person knows that you will be supportive
- Offer suggestions as to what might make the situation better
- Avoid using too much complex language
- Organise a distracting activity or use some de-escalation techniques such as relaxation or vigorous physical activity
- Say what you want to happen rather than commenting on the behaviour
- Back off if required and make the immediate environment safe and wait until the young person is able to feel more in control
One of the most important things is consistency. Try to respond in the same way each time so that the young person can get a sense of knowing what will happen if they behave in certain ways. It's important to set limits and boundaries around certain dangerous behaviours and that the young person knows what they are.
Finally, do not forget to celebrate when the child manages to tolerate a situation for the first time, or attempts to self-manage their behaviour.
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