Distressed behaviours arise when our life experiences (sensory, emotional, social, demands etc.) exceed our capacity to cope and we feel overwhelmed and lose control.

Distressed behaviours in neurodivergent individuals may include:

• meltdowns – an ‘out of control’ state which may include shouting, crying, throwing or breaking things
• physical or verbal aggression directed towards others
• self-injurious behaviours
• shutdowns – individuals may hide or curl up in a ball, withdraw to a space that feels safe or stop communicating/moving. Shutdowns can sometimes be for a prolonged period (please see info on autistic burnout and catatonia-like breakdown for more information)
• taking flight – running from the source of distress

It’s important to view these behaviours as being similar to a panic attack, or an external expression of someone’s internal turmoil, that is often the result of an accumulation of factors that leads to overload. Distressed behaviours aren’t under the individual’s control or something that they choose to do. They’re very different to a tantrum, which is usually short-lived, with a clear trigger and purpose, during which an individual is normally aware of their surroundings.

Sometimes distressed behaviours show more in one environment than in others due to masking – when emotions and difficulties are camouflaged they may then be released either when an individual reaches an environment where they feel safe or when they can’t be ‘held in’ any longer.

With PDA, distressed behaviours usually occur after a hierarchy of avoidance approaches have already been in evidence but have not been noted or acted upon.

And usually once things have reached the point of distress it’s impossible for others to intervene, so the priority is then to keep everyone as safe as possible.

• Distressed behaviours are not a ‘battle’ to be lost or won, but a crisis to be managed. This isn’t a ‘learning opportunity’ and the threat of sanctions or offer of rewards will be ineffective at this time (you cannot ‘teach a drowning person to swim’ as the saying goes).
• You are a person’s emotional brakes. How you manage distress makes a difference to outcomes. Try to separate your relationship with the person from the behaviours; and try to remember that anything that gets broken or damaged during distressed episodes can be replaced (if there’s anything precious maybe keep it safely tucked away somewhere).
• Protect yourself and others in as ‘low key’ a way as possible. This might be by stepping back away from the distressed person whilst keeping forward facing/sideways on; clearing the area of any objects that could be thrown and cause harm (ideally in advance) whilst having other soft objects available; or having something like a pillow available to block any possible blows. It’s usually better to remove others rather than try to move a person in distress, but it may be necessary to place yourself between the individual and others in order to protect them.

• Prevention is better than cure. Be aware of possible triggers and look for signs that anxiety is rising. Anxiety might be expressed in many different ways: increased avoidance, anger, shouting, crying, laughing, not talking, boredom, tics, ‘obsessing’, skin picking, withdrawing, masking and lashing out. Act and adapt quickly to de-escalate rising anxiety – ideally have plans in place that you and the person you’re caring for or working with have collaboratively agreed on in advance for times such as this.
• Keep calm and level at all times. Shouting or getting angry won’t help either of you, keep your facial expressions and body language as neutral and non-confrontational as possible.
• Reduce stimuli that may add to the sense of overwhelm – for instance, turn down TV/radio volume, ask others to keep quiet, not intervene and leave the area if possible.
• Keep communication to a minimum: instructions should be short and simple; speak in terms of what you would like to happen rather than what you would like to stop, e.g. “you may feel calmer if you stand still” rather than “stop running around”; try offering simple reassurance, e.g. “it’s OK”.
• Give emotional and physical space. Take a step backward from the situation, rather than forward into conflict.
• Encourage access to a safer place, if possible. Some people may prefer to hide away in a den or under a table or cover themselves with a duvet or coat.
• Physical intervention should be a last resort and only to keep the person or others safe.
• Be aware of environmental risks, for instance scissors, knives or objects that may be used as a weapon. Other hazards may include glass doors, moving vehicles or proximity to a road.
• If someone takes flight whilst distressed, provided there are no immediate safety concerns, following at a distance is more effective than chasing after them (because pursuit increases the ‘flight’ response).

• Recovery time will be required, ideally in a safe space.
• A favourite snack or a drink may help.
• Provide reassurance. Let the person know that you understand they didn’t feel in control at this time and that you still care for them.
• Some individuals may be very upset and may express remorse or be angry with themselves; others may not. Try to move on and start afresh.
• Some people find it helpful to talk and this can provide insight into triggers and causes. However, this kind of debriefing can be too stressful for many and may precipitate further distress. Or there may need to be some considerable time and space between the distressed episode and any discussion about it.

Implementing helpful approaches for children or following the guidance in the self-help and coping strategies page for adults usually reduces the frequency and intensity of distress.

• A recording of our Q&A on the topic of navigating distressed behaviours with guest speakers Jez Harris and Julia Daunt is available to purchase for 30 days via our training hub
• The NEST Approach – supporting autistic young people with meltdowns | Spectrum Gaming
• Parent point of view: We need to talk about meltdowns by Rebecca Huseyin | SEN Magazine

All behaviour happens for a reason . It’s really useful to understand the triggers and/or possible purpose behind behaviours that challenge. Keeping records for a period of time – ideally at least a month – is a good way to build up a picture of what can lead to difficult episodes and points us towards the approaches that may be helpful in minimising them. It’s also useful information to share with clinicians during an assessment process.

One method for this is the ‘STAR Approach’ which is summarised below. STAR stands for Setting, Trigger, Action, Response (it’s nothing to do with reward charts!). Another approach is to use ABC charts (Antecedent, Behaviour, Consequence) although the STAR method is more detailed. It can also be used to record information in the school setting.

For each episode of behaviours that challenge, record the following details …

Setting

This may be environmental or personal and may include:

• the physical environment: how busy/noisy was it? what about lighting levels or sensory sensitivities?
• social interactions and relationships within the environment: was there a perceived lack of control, fear of uncertainty or any conflict?
• the activities that the child was doing
• the child’s physical state: hunger, thirst, tiredness, illness, communication difficulties, anxiety…
• the child’s thoughts and mood, self-esteem, boredom …
• any life events (loss, change, trauma …)

Triggers

These are the things that may ‘set off’ a particular behaviour and usually occur shortly beforehand. However, it’s also important to remember that a trigger can also be something that happened some time previously, or a build up of ‘somethings’. It may not be possible to complete the ‘triggers’ section initially, as the trigger may not immediately be evident. This could be completed later on reviewing several days of recording. Points to consider are:

• had the child been asked to do something?
• were they requesting something from you, something they wanted?
• had the activity just finished/started?
• was something happening that the child dislikes or fears?
• was it something the child associates with a particular event?
• where there any additional factors, like time pressures?

Action

Action is where you record the actual behaviour that challenges (the STAR approach emphasises that these must be observable).

Response

This is where you record what follows the action. These may include

• social result: a child gains attention/comfort or succeeds in avoiding unwanted social contact or successfully avoids a demand
• occupational result: a child gets to do a desired activity or escapes an unwanted activity
• sensory result: a child gains sensory satisfaction or avoids sensory overload
• Did the behaviour result in them getting something they didn’t have before, e.g. object/food?

Results can be positive, negative or neutral and influence the likelihood of the action happening again (i.e. if the results are ‘rewarding’, they increase the chances of the behaviour happening again).

Over time you may begin to see more of a pattern in behaviours and triggers/purposes which may then help in understanding how to reduce the frequency and  severity of escalations. The table below is a sample to show the STAR approach in action.

You can read more information about distress behaviour from Ambitious About Autism and the National Autistic Society.