"Anxiety is what we feel when we are worried, tense or afraid – particularly about things that are about to happen, or which we think could happen in the future. Anxiety is a natural human response when we perceive that we are under threat. It can be experienced through our thoughts, feelings and physical sensations."
“The opposite of anxiety is trust”
Uniquely Human, Prizant, 2015
When we can trust the people around us to be predictable in their actions, and events to happen in a way that we can expect and anticipate, we are all more likely to be calm and able to learn.
This guidance seeks to advise school staff on ways to create predictable social environments for autistic learners, to provide appropriate routines and structures, take account of the learner’s motivations and, where developmentally appropriate, to support the development of strategies for self-regulation and mutual regulation.
Everyone experiences anxiety at points in their life, usually in response to difficult or stressful situations. When such situations pass, anxiety usually reduces over time. Anxiety becomes problematic when it impacts on everyday life and gets in the way of the person’s everyday functioning, seems disproportionate to the situation or continues for a long time.
We know that people with autism experience anxiety more than the general population. In 2017, a review of a number of studies found that children with autism spectrum disorder had higher anxiety levels than typically developing peers: this difference increased with cognitive ability.
Autistic learners experiencing anxiety may have difficulty sleeping and concentrating and may have a sense of losing control or have repetitive thoughts about perceived threat. They may feel worry, irritability or distress. Physical symptoms might include a tightness in the chest, a pounding or irregular heartbeat, light-headedness, a churning feeling in the stomach or feeling sick.
When we take account of
a) communication and social interaction difficulties
b) sensory processing differences and
c) difficulty with social imagination and flexible thinking,
it becomes clear why autistic learners might experience anxiety. In fact, one autistic writer argues convincingly in her blog that it is entirely to be expected given the nature of autism. A copy of the bog is in the Resources section of the Toolbox.
There are many reasons why autistic learners might experience higher levels of anxiety than their peers.
A confusing and unpredictable world
Autistic learners’ daily experience may be confusing and unpredictable. Dealing with a series of unpredictable events, or disrupted expectations can result in increased stress and anxiety.
Understanding people and social situations (social awareness)
Some learners may experience daily events and reactions of people as arbitrary and unexpected, meaning that life is likely to be experienced as random and scary.
Some learners who may be more socially aware might have the knowledge that they don’t understand people the way that other children do and they may realistically predict that they will make mistakes in interpreting emotions, situations or social rules and expectations. They might also be aware that they don’t have effective strategies to manage when they experience the feeling of always ‘getting it wrong’.
Autistic learners are likely to process sensory information in a different way which may make them more susceptible to anxiety. Their everyday environments can at times overload their senses, making an ordinary environment such as a classroom or playground feel like a place of ‘threat’. School can be particularly challenging as the learner may not feel they have any control over their sensory environment or any means of escape.
It has also been suggested that sensory sensitivities may additionally make the experience of the physiological symptoms of anxiety (e.g. stomach aches or discomfort) more extreme in autistic people than in the general population.
Patterns of thinking
Autistic learners can have thinking styles which focus on details rather than the bigger picture (weak central coherence). This thinking style may be linked to heightened experiences of anxiety. It is possible that those with a narrow focus in thinking may focus only on the detail of the ‘threat’ or ‘worry’ and fail to see the elements of the ‘big picture’ that might be reassuring.
Anxiety can manifest itself in a variety of observable behaviours, as well as internal experiences that will vary by developmental stage.
Some learners with more advanced language and social awareness may be able to express how they are feeling with words. Other children and young people, with limited language or even with advanced language, express their anxiety through behaviours. These behaviours should be interpreted as a sign of distress rather than thought of as ‘challenging’.
Some common signs of anxiety and distress might include noticeable physiological signs (e.g. pale, sweating, trembling, restlessness); communication changes (e.g. increased or decreased chatting) or reports of physical symptoms (e.g. stomach ache, headache, nausea or muscle pain).
Those around the learner may not pick up the signs that they are anxious until they see the more obvious signs listed below. Behaviours have been grouped broadly by developmental stage.
Social partner stage - Children and young people who do not yet use meaningful words. They may communicate through actions and behaviour:
- Crying or screaming
- Hitting out or kicking
- Self-harming such as hitting head off objects
- Withdrawing or refusal to take part
- An increase in repetitive movements, play sequences or phrases
- Flight (running away)
- Increased rigidity of routines/topic
Language partner stage - Children and young people using simple language and short sentences to communicate
- Hitting out or kicking
- Directing/trying to control the behaviour of or interactions with peers to make play predictable
- Attempt to control the order of what is happening
- Repetitive questions
- Increased rigidity of routines/topic
Conversation partner stage - children and young people using complex language in a conversational way
- School refusal
- Avoidance of unpredictable situations or those requiring social interaction
- Hitting out or kicking
- Hurting themselves
- Seeking reassurance (possibly in an idiosyncratic way)
- Concern about how they appear to others
- Regression to previous habits e.g. repetitive questions or phrases that they no longer normally use
- Increased rigidity of routines/topic
The above listed behaviours may look different in a younger or older child (e.g. a 4 year old hitting out is very different to a 15 year old hitting out) but the behaviour may serve the same communicative purpose. It is important to note that there is no such things as an autistic behaviour and these are ways anyone can express anxiety.
Anxiety builds up
As anxiety increases, a learner is less able to connect to their coping strategies or to their problem-solving skills and is therefore likely to become more inflexible than their normal presentation. An anxious autistic learner might well be avoidant and may appear oppositional when invited to try new experiences; refusing these experiences might be perceived as keeping themselves safe and less vulnerable than venturing into the unknown.
Michelle Garcia Winner notes that social anxiety is likely to be prevalent in those learners who are very aware of limitations to their social competencies and how they present to their peers. She distinguishes this group from learners who are less socially aware and whose main anxieties are ‘world-based’ relating to living in an unpredictable world.
Ensure all plans and strategies are shared with all staff coming into contact with the learner and are used consistently.
Show understanding - recognise there isn’t necessarily one trigger
Anxiety may be the reaction to a number of low level stressors that have cumulatively built up over time. The last thing that happened may not be the only issue to consider. When adults around a child are reporting that there was no trigger to a distressed behaviour, it is important to review the learner’s whole experience.
See Chapter 6 in Prizant's 'Uniquely Human' book.
Allow for ‘bad ‘days
Expect less on a ‘bad’ day. Just because a learner managed to tolerate a writing task on the previous day doesn’t mean they will cope on a day when things have ‘built up’. For example anxiety might be higher if their mum took them a different way to school and they arrived at school later to find there was another child’s jacket on their cloakroom peg!
Respect the learner’s experience
We should not refuse to accept how big a worry is for a child or young person, instead try to understand how they feel. Autistic learner’s might find it hard to grade how big or small a ‘worry’ is or to match their reactions to the size of the problem. They may misinterpret social expectations or intentions of others and may perceive things other people do as deliberate and therefore more of a problem to them than we may think it is.
Be aware of the ‘coke can phenomenon’
The learner may ‘hold it together’ in school, but show their distress at home. Changing the physical and social environment at school and making reasonable adjustments, which in turn increase predictability and desirability in their day, often has a positive impact at home. This can also work the other way around, with experiences at home leading to reaction whilst at school.
As anxiety rises, reduce language demands. Language that can be processed by the learner in low stress situations can become impenetrable when the learner is more anxious.
Ensure the learner has two key adults who know them well and with whom they can build trust. This should provide consistent points of contact for the parents and learner, allowing for staff absence or one adult being unavailable.
- Use visual timetables consistently. Even when a learner does not seem to need or use them on a regular basis, knowing they are there, accurate and available can be reassuring. They can be helpful for days when anxiety is rising.
- Make expectations and requirements explicit and clear.
- Plan for change and minimise surprises; disrupted expectations can be very unsettling.
Review and adapt the sensory environment taking account of the individual needs and preferences
- Offer planned, regular breaks from any stressful environment. Don’t wait until the learner is showing signs of stress; these scheduled breaks should be proactive.
- Provide a consistently available individual safe space. Select here to access the NAIT safe space guidance.
- A calm or quiet area of the classroom is important.
- Timetable planned movement breaks. The learner should have opportunities to use the safe space when they are not anxious, to get used to the experience of being in the space. This space should be a place they can go to when they feel the need to exit their current setting. Going there should always be the learner’s choice.
- Older learners may be able to use a ‘pass card’ which allows them out of class (with safety protocols considered). Simply having the card may reduce anxiety, even if the learner rarely uses it. Note that some autistic learners may find it difficult to initiate or to ask for help. A system may need to be developed where the learner can leave a class without having to show or use a pass.
Structures and Routines
When a person feels anxious, decision making can become stressful and working out what to do and not to do can be a challenge. Clear, predictable routines can provide predictability and reduce stress.
The learner may be overwhelmed by what seems an impossible task. Break the tasks into smaller, potentially achievable goals. Give instructions one at a time and in the order that they are to happen, e.g. “Put on your shoes. We are going outside.” rather than “We are going outside so put on your shoes.”
- Ensuring that an autistic learner knows what they are expected to do and understands the purpose of a task or activity will support then to engage and be more likely to succeed.
- An autistic learner may have idiosyncratic motivators.
- Finding out what they are interested in and, where appropriate teaching through these can be helpful.
- Learning is likely to be more meaningful where ‘rewards’ are intrinsic to the task rather than something that happens on completion of a task, e.g. counting washing machines in maths or being in the green group and using green equipment in PE.
Once the environment has been adapted, routines and structures provided and motivation taken into account, it may be appropriate to consider direct teaching and support. This is only appropriate for children and young people at conversation partner stage.
How to use a safe space
Simply creating the space is not enough. Learners need to be taught how and when to go to the safe space in a calm moment and they need to learn to trust that adults will use it in a consistent way.
Teach individual anxiety reduction strategies (self-regulation)
Give them the opportunity to experience a range of strategies to decide which ones are calming or alerting for them. They may wish to create a personal self-regulation keyring or toolkit to support them in selecting an appropriate strategy at the correct time. Self regulation strategies might include:
- Chair press ups
- Playing with blu tac
- Going for a walk
- Going to their safe space
- Having a drink of water
Teach that other people can be a source of support and comfort (mutual regulation):
- Support the learner to learn the names of the people around them
- Provide visual cues or a form of words to ask for help and model using this
- Ensure a predictable response when they seek mutual regulation or help from another person
- Create opportunities for them to be with another person when they need this
Mutual regulation strategies might include:
- Playing row, row your boat (provides movement, routine and predictable social contact)
- Touch (a squeeze of the hand or shoulder can be calming for some, at the right time)
- Careful listening
- Offering self-regulation strategies or signposting to calming activities
- Time to talk (if the individual seeks this out).
Scaling levels of emotional regulation
There are a range of branded approaches used to help learners to identify and grade their current emotional state, in order to identify strategies to keep them feeling good or to get back to that feeling if they are under or over aroused.
See here for descriptions of Zones of Regulation.
Helping learners to understand how to scale their worries can be helpful. This can be done through teaching ‘Big Deal / Little Deal’ [as described by Rita Jordan] or ‘the size of my problem’.
Be very wary of teaching emotion vocabulary without understanding and context. Simply learning to label pictures of emotions can be unhelpful. For those at a conversation partner stage, learning about how your body feels and how this signals different emotions by labelling them in the moment, or linking them to personal experiences is a better way to start teaching about emotions.
Social stories, can help conversation partners to reducing anxiety in some circumstances. They can help plan for change and support new experiences to feel more predictable. They can also help in work over fears or phobias (e.g. strategies if I see a dog in the park).
Carol Gray's social stories website can be found here.
There are some useful strategies described on the socialthinking.com website including teaching about behaviours using the concepts of ‘expected’ and ‘unexpected’. It can help individuals to understand that they might find unexpected things anxiety provoking.
Some resources are not autism specific and can be used or adapted to support the understanding of anxiety. These resources highlight that other people also experience anxiety.
Younger conversation partners can be taught about anxiety through stories, e.g.
- ‘The Huge Bag of Worries' by Virginia Ironside
- ‘What to do when you worry too much' by Dawn Huebner
- 'The Panicosaurus: Managing anxiety in children including those with Asperger Syndrome' by k.I. Al-Ghani
- ‘When my worries get too big: A relaxation book for children who live with anxiety' by Kari Dunn.