For someone with autism, who may have difficulty in regulating their responses to sensory information, the world can feel particularly intense.This can sometimes lead to anxiety and distress, and behaviour that might feel challenging to others around them.
As a carer of someone with autism, one of the most demanding aspects of your role may be to support the person you care for to manage triggers and regulate their emotions, before, during and after these episodes. Here we explore ‘behaviour that challenges’ and ‘stimming’ in a general way, and share some practical strategies you might consider to support the person you care for.
Most behaviour that others experience as challenging is simply a form of communication. It takes place when someone wants to soothe themselves, or isn’t able to express their discomfort or distress in any other way in a situation where they feel overwhelmed. Someone with autism might behave in ways that others around them feel is challenging to them in some way, but for the person expressing that behaviour, it is often their only way to communicate a feeling or need. ‘Behaviour that challenges’ might also be called ‘distressed behaviour’, or ‘challenged behaviour’, which describes how the person with autism feels, rather than how it feels for those around them.
For someone with autism, this might also include actions that range from being viewed as unusual or mildly disruptive, to more serious and intense behaviours that put them and others around them at risk of harm, affecting everyone’s quality of life in a significant way. These might include angry and aggressive outbursts, spitting, biting or any other behaviour that you as their carer and the other people find challenging.
Someone with autism is not considered to be born with ‘behaviours that challenge’, however they are most likely triggered into expressing certain behaviour that challenges others due to situations they find distressing within their environment.
‘Stimming’ is short for ‘self-stimulatory behaviour’ and describes the repetitive movements or sounds that anyone might use to regulate their sensory experiences, focus their concentration or manage their emotions.
Everybody stims at time, people who are neurotypical might bite their nails if they are anxious, tap their foot if they are bored or suck on a pencil during an exam. For someone with autism, stimming might be hardly noticeable or very obvious. Stims might include the repetitive use of an object, or movements like hand-flapping, rocking, spinning, shouting, pulling hair, humming, pacing, tapping and scratching, amongst other actions.
A person with autism may simply enjoy certain stimming behaviours, so there isn’t any need to discourage them. At other times, these repetitive actions are helping them to cope in challenging situations and regulate their emotions, and they might need more support.
When living with autism, there may be situations that will trigger certain behaviours, this is individual and here we will go over some suggested triggers for changes in behaviour.
- For someone with autism who finds comfort and reassurance in structure and routine, unexpected changes of any sort can be very triggering and cause anxiety.
- Busy environments like shopping centres or parks with lots of noise, lights and people can also be very uncomfortable, even painful, to someone with autism who has difficulty filtering out unwanted information from their environment, and this can lead to sensory overload.
- Communication difficulties can be very frustrating for someone with autism to deal with, as can highly charged emotional situations, and these can lead to a meltdown or distressed behaviour due to extreme feelings that are hard to regulate.
- Physical stressors, like doing a lot of sports or lack of sleep, can also contribute to a situation where a person with autism feels like they cannot cope and result in a meltdown situation.
A meltdown rarely comes out of nowhere and can be the result of stress building up over the course of a day or a week, culminating in a loss of control and extreme behaviours. When you are supporting someone, you will become aware of the triggers to them and be able to put into place strategies to support them.
Strategies for supporting someone who displays stimming and distressed behaviours
When triggers have been identified it is then easier to put into place plans and strategies to manage re-occurring triggers, this will be both a benefit to you as their carer and them.
- Having open conversations with the person you care for to identify their triggers will help you to avoid certain challenging situations, and you can make plans around what to do should a situation ever start to feel overwhelming for them.
- Talking to the person you care for about the signs that might show they are becoming distressed, and asking them what helps them to feel calmer in those moments can help you both to be prepared and feel more confident.
- Having a toolkit of strategies on hand, like particular phrases they find soothing or sensory supports like ear defenders or dark glasses, can also support you and the person you are for to avoid or de-escalate a potential meltdown situation.
- Giving the person you care for advance warning of any upcoming changes to their routine, and approaching any new activities or situations one small step at a time, can support them to take in new information in a way that feels manageable and so avoid stress building up.
- If the person you care for does become distressed, you might start by removing any triggers close by that could be disturbing them. This might include turning down lights and reducing noise levels, supporting the person you care for to change out of any uncomfortable clothes, or supporting them to go into another room if that feels safer.
- If the person you care for is showing behaviour that could be violent and potentially harmful to themselves or to others, staying as calm as you can and redirecting them to another activity in a clear, neutral voice can be helpful ensuring they are safe and not at risk of harming themselves or those around them. Should the potentially harmful behaviour continue, you might try placing a soft barrier like a cushion between them and any object or hard surface that might be causing them harm, or use very light physical contact to gently guide them to another activity.
- If you are ever concerned that they or someone else might be in danger, it’s very important you know you can call on emergency services for support.
Helping someone to manage social situations when experiencing distress
Helping the person you care for to communicate their own needs to others is important, especially in social situations where they may begin to feel distressed. This is something you can prepare for in advance by role-playing certain scenarios, and by ensuring they carry a simple Autism ID card and sunflower lanyard to make others aware of their needs without the added stress of verbal interaction.
If the person you care for is becoming distressed whilst out in a public place or social situation, there are a number of other practical ways you can support them. Seeking out a calmer environment is ideal, and having somewhere in mind beforehand can be a good idea; just knowing you can escape to somewhere else if necessary will support you both in feeling more relaxed.
Supporting the person you care for to develop their own relaxation and support strategies, and recognise which sensory tools work best for them, will also empower them to feel more confident should they begin to feel distressed whilst in a social situation.
Looking after yourself as a carer following a challenging situation
It can be very distressing and demanding to support the person you care for through a challenging situation. Whilst you may have been able to stay calm during the situation itself, afterwards you will need time to process the impact it has had on you.
Making time to rest and allow your nervous system to come back into balance will help you to reset and recharge, and reduce stress from building up over time. Seeking support through connection with close friends and sharing with other carers who will understand what you are going through can be helpful too.