Understanding and Supporting Regulation

Neurodiversity is the name given to a burgeoning social movement, thought to be first coined by Judy Singer, an Australian sociologist in the 1990s.  Neurodiversity is not a medical diagnostic label, rather an umbrella term to describe the diversity between humans whether they are considered to be ‘neurotypical’ or ‘neurodivergent’. An individual cannot be neurodiverse. 

A neurodiversity informed approach encourages neurodevelopmental differences such as autism, ADHD and Dyslexia to be viewed and understood in a positive way. The neurodiversity paradigm was first embraced by the autistic community, and then by other groups, who use the term as a means of empowerment and to dispel the belief that autism is something to be treated and cured rather than an important and valuable part of human diversity.  

The Neurodiversity movement has helped to challenge how structures within society such as organisations, institutions, attitudes and culture exclude or disadvantage individuals who might be considered to be ‘neurodivergent’, or part of a ‘neurominority’.  Under Singer’s definition, individuals would not be referred to as ‘neurodiverse’, this is a term that refers to society as a whole, and the varying neurotypes within the overall population.  Overall understanding of the concept of neurodiversity and associated terminology is rapidly evolving, often propelled by discussions around the movement taking place on social media.  

A recurring theme arising from this movement, as manifested in the Scottish Government’s ‘Different Minds’ campaign, is the notion of ‘Difference not Deficit’.  This TedTalk considers what is meant by ‘neuroaffirming practice’ and what this looks like in a practical sense for autistic and otherwise neurodivergent children and young people who are supported in educational settings. 

Neuroaffirming Practice | Bryden Carlson-Giving & Katherine McGinley | TEDxAlmansorParkLive – YouTube 

The film below explains more about why autistic children and young people are more likely to experience anxiety and distress in education settings.

According to estimates, approximately 1 in 10 people generally, and 50% of autistic individuals, may be affected by Alexithymia (Ricciardi et al,. 2015). 

Alexithymia is a difficulty around connecting with and describing one’s own emotional state.  It may also affect how the individual shows or expresses their emotional state to others around them.  Often this can result in the physical symptoms of emotions such as anxiety feeling amplified, and can impact on the ability to regulate emotions.  It can also feel very confusing or overwhelming for the individual.  

Alexithymia also affects the ability to recognise and understand how other people are feeling, which can impact on social ability and ultimately, relationships, potentially leading to social isolation and loneliness. 

Unlike autism, Alexithymia is not included within the Diagnostic and Statistical Manual of Mental Health Disorders (DSM-5).  However, it is frequently recognised by mental health professionals and has been linked to conditions such as depression, anxiety and experience of trauma.  

Reference: Ricciardi L, Demartini B, Fotopoulou A, et al. Alexithymia in Neurological Disease: A Review. Journal of Neuropsychiatry. 2015. doi:10.1176/appi.neuropsych.14070169

Alongside our more familiar external senses; hearing, sight, taste, smell and touch, we also have a various internal senses, including our interoceptive sense.  Our interoceptive sense is incredibly important in influencing how regulated we feel and can ultimately impact mental health.  

By monitoring signals from our entire body, our interoceptive sense allows us to notice feelings in our body such as feelings of hunger, thirst, pain, needing the toilet or feeling too hot or too cold.   Our brains also use information from whole body monitoring as clues to how we are feeling emotionally – whether we are perhaps nervous, tired or unwell. 

Autistic individuals often report interoceptive differences. For example, they may not notice bodily signals that might provide clues about their  current emotional or physical experience. Or they may notice those body signals, but not realise their significance. It is also easy for the inner experience of autistic individuals to be misunderstood and/or mislabelled by others around them, despite best intentions, which can cause confusion or uncertainty.  

Further information and guidance

Visit the ‘Sensory Differences’ section of the Toolbox for further information and guidance around sensory processing differences experienced by autistic and neurodivergent individuals. 

Kelly Mahler, Occupational Therapist has created a website dedicated to Interoception 

Research tells us that autistic people are likely to be working much harder than non-autistic people to get through each day. 70% autistic adults experience depression or anxiety (Hollocks et al 2018). 

There is a growing recognition that camouflaging or masking autistic characteristics in social situations is a common social coping strategy for autistic adults (Hull et al. 2017). It has been suggested that camouflaging offers one explanation for the missed or late diagnoses of women and girls or autistic people of any gender who internalise their stress and distress.  
 
By mimicking or copying social behaviours which reflect the perceived social ‘norm’, an autistic individual may give the impression that they are not experiencing any problems, however when they are placed in unfamiliar settings they may struggle to socialise. It is possible that, in the more structured and routine environment of school, an individual may appear to cope whilst parents, seeing their child in a wider range of contexts, may report difficulties. Listening carefully to children and young people and their parents can help to form a picture of ‘the 24 hour child’. 
 
Camouflaging can come at a cost; where it is unsuccessful, or strenuous, it can be associated with high levels of stress. 

It is important that we do not tell people to stop masking but rather we can: 

• Create environments where children and young people feel safe to be their authentic self without stigma or judgement. 
• Support young people to spend time doing things they love and with people who have shared interests. 
• Model neuro-affirming language, actions and mindsets as part of the culture in schools. 

Further information and guidance

View the NAIT Guide to Autistic Masking for more detailed information.   

Enquire have created a guide for parents and carers, Talking to your child’s school about autistic masking  

Dr Hannah Belcher, a lecturer, researcher, speaker and author, discusses  masking in autistic people, based on research and her own personal experience.  

Emotional regulation is key to participation in life and learning.  Times of change or uncertainty can be anxiety-provoking. Furthermore, challenges linked to widespread expectations around social communication and lack of understanding of differences, sensory processing difficulties such as interoception and alexithymia, all contribute to increased potential for feelings of anxiety or dysregulation for autistic individuals.  This section includes some key points to consider when supporting children and young people during periods of dysregulation.  

Anxiety can be expressed in in a variety of ways, varying from one individual to another.  Sometimes it is expressed more overtly, through facial expressions and body language, or through actions and responses such as refusal. Equally, some individuals may also appear smiling and quiet, but not obviously anxious. Many autistic individuals have strong and specific interests, which might become more apparent when anxiety is increased. As a response to stress, anxiety or feeling out of control, children and young people might try to alleviate their anxiety by performing compulsive rituals (e.g., counting or washing their hands repeatedly) Others may withdraw or become situationally mute.  

1.  Think structure, routine, predictability  

A feeling of unpredictability and lack of control is a common source of dysregulation.  Familiar, structured routines are predictable and can be effective in reducing anxiety, particularly at times of increased uncertainty.  Visually presented routines and activities can help. If something needs to change, aim to change one thing at a time.  For example, if the activity needs to change, aim to carry out this activity in a familiar space with a familiar adult.   

2.  Consider the child or young person’s developmental level  

Tailor your language and approach to the child or young person’s stage of development. For example, a child at the conversational stage of communication development may benefit from use of Social Stories™ to explain new or unfamiliar situations, however this would not be helpful to child who is preverbal or has emerging language.  Maintaining familiar routines is more likely to be effective.  When experiencing dysregulation, use of reduced, simple, unambiguous language is supportive for children at all developmental stages.    

3.  Adjust expectations  

Presentation may differ from one person to another and it may not be immediately obvious that the individual is dysregulated. Consider the demands placed on a child or young person and whether they need to be reduced. When heightened, an individual’s ability to process spoken language is often greatly reduced and ability to carry out familiar tasks can also be affected. An individualised ‘safe space’ that the child or young person is familiar with and can retreat to when they want and for as long as they need, can support regulation.  

4.  Distraction can help   

Time spent engaging in familiar activities the child or young person enjoys can serve as a distraction or to help the young person feel regulated. Consider what each individual finds motivating and find ways to incorporate these into the structure of their day.  

5.  Reach out to parents and carers  

Parents and carers offer a unique insight and may well have experiences to share which might be helpful to extend to your setting. Listen to their concerns and consider how a child’s experience during the school day may impact on their presentation at home or vice versa.  Remain open to making any relevant adjustments in your setting, even if a change in presentation has only been observed at home. Equally, you may offer suggestions for any approaches to support you have found to be helpful.  

6.  Look after yourself  

When taking on a supporting role it is important that we all take care of ourselves so that we feel ready and equipped to help others when needed.  Consider approaches you can take to maintain your own mental health and wellbeing and reach out to colleagues regularly and especially at times when things get difficult.   

Further information and guidance

National Autistic Society  Anxiety (autism.org.uk)   

Guidance on setting up and using a ‘safe space’:  https://www.thirdspace.scot/nait/education-resources/   

Further information about supporting transitions can be found on the ‘Transitions’ section of the Autism Toolbox. 

This is a term describing that an individual uses spoken communication in some contexts but does not, does not want to, or cannot speak in other contexts, with some people or in some places. For example, in an unfamiliar or busy environment. It can happen at any age and can come and go. It is a response to being dysregulated and can be a ‘fight, flight, freeze or fawn’ type of response to feeling overwhelmed. It may also have value as a coping mechanism when individuals experience a high stress context for them. 

People who experience situational mutism might be able to predict situations when they will not be able to speak but they might not. Individuals can find that it happens unexpectedly or at times when they really need to speak (e.g., a job interview, an oral exam, phone calls, in an airport etc…).  

Although we see the outward sign that someone is not speaking, individuals may also experience a similar freezing in their ability to understand and process spoken language they hear. You might notice children in your class who sometimes have good language understanding and then at other times don’t seem to follow or take in simple language.  

Understanding and using other forms of communication can be affected but are not always (e.g. writing, using signs or gestures, using AAC). 

You might have children in your school who can speak on some days and not on others, or to some people in school but not others. Some children may speak at home but never speak in school. 

Medically it has been referred to as ‘selective mutism’ but this term is perceived as judgemental as it suggests individuals are choosing not to speak. We know this is not a choice and advise using the more current term ‘situational mutism’.  

Some individuals may force themselves to speak as a form of ‘masking’ but this can precipitate meltdowns, burnout and poor mental health and wellbeing. 

Situational mutism is a common experience amongst autistic people and it can be a sign that autism assessment would be helpful. Children with developmental language disorder may also be more likely to experience mutism because of the link with increasing language load leading to stress and overwhelm. Seek advice from a Speech and language therapist, to establish whether there are additional language difficulties present. 

How to help

Support should be individualised and based on good understanding between the child, their family and the school. You could also speak to a Speech and language therapist or CAMHS professional for advice, or if there are sensory aspects affecting the individual’s regulation, you may wish to consult an audiologist or Occupational therapist. Here are some suggestions. 

• Learn more about and understand situational mutism 

• Reduce demands for communication 
• Consider aspects of the physical and social environment that are affecting dysregulation and make changes 
• Consider how to make every day life more predictable and desirable 
• Involve children and young people without an expectation to talk (never force people to talk, to explain why they had this experience or humiliate them) 
• Help children understand their experience in a developmentally relevant way 
• A card the child or young person can hand over that explains they are not able to talk right now, might be helpful 
• Make adjustments to expectations in school (e.g. oral exams) 
• Ensure there are non-verbal communication means available if this is something the individual can use 
• Practice and prepare for change and support transitions 
• Consider the child or young person may be autistic 

Further information and resources

https://www.autismunderstanding.scot/information-hub/autistic-communication#:~:text=Situational%20mutism%20may%20be%20a,safe%E2%80%9D%20to%20be%20mute%20around.

Anxiety-related absence happens when a child or young person is reluctant to go to school, has reduced attendance or is not attending at all. It is likely to occur more commonly with autistic learners.  Whilst anxiety related absence is more common in adolescence, there are often signs at the primary school stage – it rarely happens suddenly. There are usually signs that being in, or transitioning in and out of, the school environment causes anxiety prior to absence being an issue.  

You might notice: 

• There may be a build-up 
• Pleading not to go 
• Excuses being made 
• Lateness 
• Increased periods of absence 

• Mixed attendance 
• Complete absence  

Reasons for anxiety

There is often more than one factor contributing to anxiety around attendance. Lack of appropriate support can perpetuate these anxieties. It is important to act early, and approaches to support should take into account all aspects of the child or young person’s life.  

Some factors might include: 

• Separation anxiety 
• Transition anxiety  
• Social anxiety 
• Generalised anxiety (worrying about a wide variety of everyday things)  

These are explained in further detail in the NAIT guide to anxiety-related absence. 

Understanding the family’s perspective

Although anxiety related absence is perceived as a school problem, it is important to consider the 24 hour life of the child and the impact on the family. Anxiety-related absence can have a significant impact on the wellbeing of the whole family.   The first and most important step is to take time to listen to the family perspective. Discrepancies between behaviour at home and school are common and may be indicative of a problem building up. It is not uncommon for autistic children and young people to ‘hold it together’ in one context and for the reaction to be observed at a later time and in a different context. If a parent is regularly reporting distress at home, this can be viewed as a need for reasonable adjustments to be made at school.  

It is important to take a non-judgemental approach to listening and understanding challenges faced as home.  Parents/carers may have their own anxieties about being viewed as not doing enough to get their child into school and may also have worries about the potential financial impact, e.g., it can affect whether or not they are able to work. 

Ways to help

We can’t take away all the sources of anxiety for the child or young person but we can try to reduce them. People who know individuals well should ‘listen’ to what they say and do and to observe whether they are initiating and participating confidently.   It is helpful to be aware that individuals might be using self-regulation or coping strategies in the context of the underlying anxiety.  If an individual is showing actions or responses in a way that suggests underlying anxiety, rather than trying to stop the individual engaging in a specific ‘behaviour’, it is best to support them to learn helpful self-regulation and mutual regulation strategies. 

One of the simplest ways to do this is to make the child or young person’s day predictable. Families may benefit from practical help to set up and maintain predictable morning routines. 

A team approach, supported by the GIRFEC National Practice Model, which includes clear planning and commitment to consistent implementation and review over time. The plan should take account of the child/young person’s and family’s views.  Good communication to enable consistency and persistence with the plan is essential.  

Further information and resources

NAIT guide to anxiety-related absence 

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