Supporting pupils through Autistic Burnout (Teacher Guide)

 

Autistic Burnout: A Family Guide is available here: Shop | Autisticrealms


Embracing Monotropism and Supporting Young People To Help Prevent Autistic Burnout (Edgar, 2023) is available via Amazon.

My updated version of ‘Supporting your Young Person through Autistic Burnout‘ is available via Thinking Person’s Guide to Autism website, (Sept 2023).

Autistic Burnout  

Autistic Burnout is widely talked about in Autistic communities. However, it is not yet recognised by the British Medical Journal as a diagnosable condition, and it is even less recognised by many teachers and those within education. However, burnout has been acknowledged by The Royal College of Psychiatrists in their College Report (2020 ), which describes burnout as a state of exhaustion associated with functional and cognitive deterioration and an increase in autism symptoms as a consequence of coping with social interaction (including masking) and the sensory environment.

Many parents, teachers and others working with children and young people have still not heard of this term, and there has been very little systematic research in this field. This leaves many young people and their families struggling in our school system and it leaves many teachers and schools struggling to know what they can do to provide support for pupils experiencing and going through Autistic Burnout.

Autistic Burnout is traumatising and disabling for those experiencing it and also difficult for people supporting those going through it. If a pupil in your class or school is experiencing Autistic Burnout, they will need an understanding, flexible approach, an increase in sensory regulation time and a decrease in demands (family and school).

Ideally, we need to change the school environment so children and young people are less likely to reach the point where they experience Autistic Burnout, as discussed in my article Education Crisis – Neurodiversity Affirming Teacher Training Needed (autisticrealms.com). However, change will take time, and we have children and young people in our education system now, many of whom are unable to attend school and are already missing out on their education due to Autistic Burnout. This article discusses what Autistic Burnout may look like and how teachers and those working in education can support children / young people and their families experiencing this.

Role of teachers and schools

‘School staff are not expected to diagnose mental health conditions or perform mental health interventions’ (DFE Feb 2023). However, teachers are expected to meet the needs of their pupils so they are able to learn. If a pupil is struggling we need to think about how we can support them & their family within our role as teacher and within the capacity of the school setting. This is highlighted in the quote below from ‘Summary of responsibilities where a mental health issue is affecting attendance’ (DFE Feb 2023);

‘The role of school staff is to ensure that the school is a calm, safe, and supportive environment where all pupils want to be and are keen and ready to learn, which is the foundation of securing good attendance. Generally, schools will achieve this by promoting children and young people’s mental health and well-being through a whole-school approach to pupil mental health, and by developing a trusted relationship with parents/carers and families that involves them in the conversation about the school’s ethos, and emphasises the importance of supporting mental health and regular attendance’.

There is very little research about Autistic Burnout and even less about Autistic Burnout in children and young people. Most recently, in an article by Higgins et al (2023), ‘Confirming the nature of autistic burnout’ they concluded that their adult participants felt; ‘autistic burnout leads to exhaustion. They needed to withdraw from being with other people. They needed to stay away from autism-unfriendly places. Many had been misdiagnosed as having depression, anxiety, bipolar disorder… or other conditions. We need increased awareness of autistic burnout. Autistic people need more help.’  

This research supports my own understanding and personal experience of Autistic Burnout as a parent and teacher. From anecdotal observations and my own research from within the online neurodivergent communities, I have found children and young people seem to experience Autistic Burnout in a similar way to adults . I agree with Higgins et al (2023) that ‘more research is needed, we need to have bigger studies to understand autistic burnout’. We also need research to specifically find out about Autistic Burnout in children and young people, and we need it to be officially recognised by professionals so more appropriate support can be provided. This article summarises the limited research I have found and provides some ideas that may help some children, young people and their families.

It is important that if you have any concerns about the mental health of a child / young person in your school, you refer to a mental health professional and discuss concerns with them and their family for further support.

Types of Autistic Burnout

Autistic Burnout and reaching capacity on a cumulative daily basis – This has a cumulative effect and is caused by the demands of social and sensory input outweighing the individual’s capacity to manage. Being in a state of overwhelm and having reached capacity is often seen with children and young people as presented in the typical ‘after school meltdown ‘ or ‘coke bottle’ scenario as I described in my article ‘Ideas for Autistic Children who are struggling at School‘. This is also referred to as ‘constant low-level burnout’ in the AASPIRE Autistic Burnout study by Christian Maslach and Michael Lieter (2007).

Intense Long Term Autistic Burnout – This is described by Kieran Rose as a ‘crash’ where you ‘keep on crashing’. This happens to children as well as adults. If a pupil in your class has got to the point where they are experiencing an “Intense Autistic Burnout”, they will find it difficult to continue their usual daily routines including, going to school, extra-curricular and other social activities. In the AASPIRE study this is referred to as an ‘intense acute burnout’, it can seriously impact mental health and may take many weeks, months or even years to recover from and find new ways of managing life.

Definitions of Autistic Burnout

Raymaker describes Autistic Burnout as; “A state of pervasive exhaustion, loss of function, increase in autistic traits, and withdrawal from life that results from continuously expending more resources than one has coping with activities and environments ill-suited to one’s abilities and needs.” In other words, Autistic Burnout is the result of being asked to continuously do more than one is capable of without sufficient means for recovery.”

Endow describes Autistic Burnout as; ‘a state of physical and mental fatigue, heightened stress, and diminished capacity to manage life skills, sensory input, and/or social interactions, which comes from years of being severely overtaxed by the strain of trying to live up to demands that are out of sync with our needs’.

Signs of Autistic Burnout in Children and Young People

It is likely that parents/carers will be the first to spot signs that their child or young person may be going through Autistic Burnout. Parents/carers may contact you with concerns or you may notice some signs in school.

Possible signs of Autistic Burnout may include:-

• Struggling to attend school

• Withdrawing from their peers or changes in usual peer groups

• More anxious than usual or showing difference in moods

• Changes in response to sensory stimuli (hyper or hypo)

• Changes to sleep patterns (difficulty sleeping /sleeping more / disturbed sleep)

• Changes to diet (more restricted food types, eating more / less)

• Differences with communication (speech may be affected or processing of information)

More details of these signs are mentioned in my article ‘Parent Ideas for Autistic Children Struggling at School’.

Children’s and young people’s mental health is complex, and it is important teachers signpost families appropriately to CAMHS and their local family and mental health teams for further support and professional advice.

Autistic Masking & Burnout

Autistic masking is a safety mechanism where Autistic people consciously or subconsciously suppress their authentic ways of being to fit in.

The AASPIRE Autistic Burnout Study (2006) describes the main features of Autistic Burnout as a loss of skills as defined below:

• cognition, executive function, memory, speech/communication, ability to cope, ability to do things once could do

• increased sensitivity: to sensory stimulus, to sensory overload, to change, to social stimulus

• increased autistic behaviour (e.g., stimming, speech difficulties)

• more frequent meltdowns/shutdowns

• chronic exhaustion

Endow describes Autistic Burnout as the ‘demands of life exceeding a person’s resources‘ which can result in the following:

• progressively losing the ability to speak

• deteriorating executive function

• reduced memory capacity

• loss of self-care capabilities

• loss of social skills

In addition (from my parental and teaching experience), I would add:

• reduced ability to tolerate sensory stimuli

• feelings of social overwhelm resulting in changes in behaviour and dysregulation (more meltdowns/shutdowns)

• more tired / more anxious energy (it could be displayed either way depending on the individual)

• changes to diet and eating habits, diet may be more restricted to try and keep some feel of ‘control’ & autonomy & predictability

• changes to sleep patterns, disrupted sleep, maybe sleeping less as too anxious or alternatively shutting down and just wanting to sleep all the time

  or not being able to sleep as much as usual due to anxiety.
  
• different responses to sensory stimuli – hyper or hypoaware of things
  

• emotional – may be more tearful and seeking extra reassurance, or alternatively, angry and frustrated that they can’t communicate or understand what is happening, feelings over overwhelm

• executive functioning difficulties escalated and brain fog

• routines – may try to control their situation which could result in more demanding and controlling behaviour driven by anxiety (especially for those with PDA profile)

Supporting a pupil through Autistic Burnout

Working Collaboratively with Families

It is essential to work collaboratively with parents/carers, the child / young person and multiagency professionals. There is pressure from government and local authorities to increase attendance data, however adding pressure onto families that are experiencing their child going through Autistic Burnout to attend school at all costs is not helpful for anyone.

Adding the expectation of ‘one more’ lesson/day/week’ is adding to the pressure pot and could result in a pupil needing even more time off to recover long term and the whole family experiencing burnout as a result of living under such stressful circumstances. This can be likened to adults going through work-related burnout, adding more and more pressure and trying to persevere with a high-intensity workload whilst juggling family life without a break or accommodations. It is only sustainable for so long.

A few days off work, when you start noticing signs of burnout, could help prevent a full burnout and mental health crisis where the young person may need weeks or months off school, it is important to keep things as flexible as possible.  

Ideas for School

If a child or young person is experiencing early signs of Autistic Burnout, ideally, they would benefit from some time off to regulate and recharge. However, for many reasons, this may not be an option for the child or young person and their family, and they may be in school but really struggling. One way to support pupils is to lower demands and increase regulation time.

The key points to support recovery highlighted from the study by Higgins et al (2023) include, ‘withdrawing from social situations and taking downtime….participants most strongly agreed that stress and sensory environmental factors led to burnout onset (e.g. “a build-up of life stressors” or “being overloaded by sensory and social information in my environment”)’. This needs to be considered for children as well as adults. Dr. Luke Beardon has written lots about the importance of the environment for autistic children (and adults) summarised in his golden equation; autism + environment = outcome

1. Low Demand Teaching

A low arousal approach is not about ‘giving in’ it is about prioritising and accommodating needs it is about thinking of alternatives, there is always a plan B, similar principles from low arousal parenting can be applied to teaching:-

• de-escalation

• thinking ahead

• avoiding crisis

• reducing demands

• giving space and time to decompress

• putting pupil’s emotional and sensory needs first

• co-regulation with a supportive adult they trust and have a good connection and relationship with

2. Understanding Spoon theory / Emotional bucket theory

I find it helpful to visualise children and young people each having a bucket slowly being filled up by various events and social and sensory experiences throughout the day. I imagine that this bucket is already almost half full when Autistic children wake up in the morning due to their neurotype.

Too many activities, too much change, too much sensory stimuli and too many demands will fill the bucket very quickly. When too many demands and events exceed the capacity of the bucket, it starts to overflow or leak out, this is when meltdowns or shutdowns may happen. It is not the children’s or young person’s fault; it is because the stimuli from the environment and people around them have exceeded their capacity, the energy and overwhelm has nowhere else to go. We need ways to try to keep the levels below capacity so they are more manageable. An alternative way of visualising the energy capacity for your pupils is the Spoon Theory created by Christine Miserandino (2003), which you may prefer or be more familiar with.

Ideas for the Classroom

On a practical level, in school, pupils may benefit from a trusted adult (teacher/assistant / key worker) checking in with them throughout the day to assess how they are feeling and their capacity to manage. Discuss what may help them for that lesson/the rest of the day/week/term, and be flexible. What may work one day may not work the next.

For some pupils, this may be more difficult if they struggle with alexithymia and can not identify how they or others are feeling. Some pupils may also have difficulty interpreting their interoception signals (internal bodily sensations), so further support may be needed in this area. If the children and young people you are working with do not understand their bodily sensations and can notwork out how they are feeling then they will not be able to regulate themselves or discuss ways forward with you, they may feel stuck and get more anxious the more you try and help.

It is important that staff (and pupils, when able) understand alexithymia, interoception and any other co-occurring conditions or difficulties so they can support pupils in the best way possible. Listed below are further ideas to consider to support pupils in the classroom:-

• BE FLEXIBLE

• think about what sensory resources they may benefit from
  
• provide greater differentiation within lessons may be needed to suit needs in the moment
  

• focus on the learning process rather than the closed outcome or end product all the time

• offer time out to regulate – consider the space or environment that best meets their needs (some may prefer a run around a field, others may prefer a quiet den or time in the library
  

• support with communication – if they are feeling tired, anxious, depressed and in sensory overload then their capacity to communicate will be affected and they may need extra support such as visuals within lessons

  
  Be more flexible with time in lessons and around transitions
  

• reduced timetables may help in the short term, however in the long term if the environment does not change, you cannot expect this to lead to a successful full-time placement

• consider more time doing subjects they enjoy that support their personal interests if this can be accommodated (the benefits of following autistic children’s monotropic interests could be immense and lead to re-engagement and recovery from Autistic Burnout as I will discuss in a future article).

Further information about understanding the theory of monotropism and the benefits for Autistic people embracing monotropic flow can be found in the work of Dinah Murray, Mike Lesser, Wendy Lawson – Attention, monotropism and the diagnostic criteria for autism (2005). Fergus Murray has also written many great articles on this subject including, ‘Me & Monotropism a Unified Theory of Autism’ and Julia Leatherland (2018) wrote ‘Understanding how autistic pupils experience secondary school: autism criteria, theory and FAMe™, which also highlights the importance of teachers understanding this theory to support their Autistic students.

3. Understand Neurodivergency

Educate your school team about the neurodiversity paradigm and develop a greater understanding of the neurodivergent experience, including the theory of monotropism.

There are some amazing resources available, I would highly recommend the Learning About Neurodiversity at School (LEANS project). It is a free programme for mainstream primary schools to introduce pupils aged 8-11 years to the concept of neurodiversity, and how it impacts our experiences at school (LEANS-C – Salvesen Mindroom Centre) and also NeuroBears. NeuroBears is aimed at children and covers the main key concepts of what it means to be neurodivergent. There are other neurodiversity-affirming programmes emerging, and many could also be adapted for secondary-age pupils.

4. Enable Flexible Transitions

You need to be mindful of the transition times in Autistic children’s and young people’s lives that can be difficult to manage and may contribute to Autistic Burnout. This includes the big changes you can help prepare for, such as changes to the school setting when moving between primary to secondary school, and also the smaller changes in the school day that you may not be able to prepare for so easily. Such examples could include a change to the seating plan or a short notice change of timetable or teacher; these smaller changes can add up and create a lot of anxiety and stress if not considered and managed carefully.

Events you may regard as insignificant may not be so insignificant to your Autistic or neurodivergent pupils; their response to change is valid in whichever way it is displayed, and they may need significant support before changes occur & afterwards to allow them to process the change. It may help if pupils could be actively involved in any significant changes or so they can have an input on how best to manage it.

All transitions and changes take energy to try and manage; if there is not enough time to decompress and re-regulate as needed, it could contribute to Autistic Burnout. If you consider the impact of all the changes and transitions that occur in school, on top of a pupil’s family and home circumstances and their social dynamics and also the constant physical changes of being a child growing up and possibly going through puberty, too this could all contribute to mounting anxiety and burnout.

5. Understand Fluctuating Sensory Needs

Increase sensory regulation time and decrease demand

Every child and young person (and adult) has their own unique sensory profile regardless of their neurotype or any disability. In order to stay within a ‘window of tolerance’ and stay regulated, we need to support pupils to increase sensory decompression/regulation time and decrease demands from home and school environments.

Find out what your pupil enjoys and their interests, and ask how they regulate and relax at home. If your pupil plays a lot of online gaming, this may mean they need to do this for longer and more frequently, if it helps them regulate at home this could also help in school.

If your pupil finds they are able to relax more through physical activities that give them sensory feedback, such as climbing, jumping, spinning, and repetitive play—that is okay. They are self-regulating; it is their way of coping and should be encouraged, not hindered. This may mean that as a school, you need to change your expectations of what ‘regulating’, ‘relaxing’, and ‘support’ looks like for your neurodivergent pupils and the ways you support them.

Each child is unique. It may be that the ‘relaxation’ space, which may be beneficial for some children (eg. beanbags and sensory bubble tubes), may not be relaxing for everyone, and this space could trigger anxiety further; it about meeting individual needs, this will look different for every child.

If a pupil’s anxiety escalates, it’s good to adopt a co-regulation technique, “let your calm meet their storm” and feelings of overwhelm. It is important teachers and support staff are able to model coping strategies that work for the individual children they are with; breathing and visualisations may work for one child but another child may need a walk outside or to listen to music or use the gym equipment. There is no one-size-fits-all approach.

Risk of ‘Just one more’

If you (or their parents/carer) think a child or young person is experiencing Autistic Burnout, it is essential to know they are already at completely full capacity. If you try and push for just one more day of school, then it is likely at some point, their capacity for being able to manage will burst, they will no longer be able to hold it all in and carry on functioning, something will have to give. This could happen slowly or seemingly overnight, and they will find it difficult to carry on. It may become more and more difficult to keep trying to go into school or to keep trying to go to their clubs, socialising, managing school work and juggling it all, they will reach Autistic Burnout.

If your pupil is in Autistic Burnout, you need to acknowledge this is where your pupil and their family are right now; you can’t rush the healing process; your pupil and their family will need support. It is widely agreed that forcing children into school will eventually only make the situation more difficult and could lead to serious mental health issues. Dr. Naomi Fisher has some fantastic webinars and resources to support parents with this and there is a lot of guidance on the Not fine at School and Define Fine websites.

The recently published Square Pegs book (2023) has a wealth of information for schools to read to support pupils and families experiencing mental health and school attendance difficulties. It is essential to remember this is absolutely NOT a case of ‘won’t go to school’, there is no choice involved, these pupils CAN’T go to school. Autistic Burnout needs to be taken seriously and supported by mental health professionals and caring understanding school staff.

It is essential to work collaboratively with parents/carers, the child / young person and multiagency professionals. There is pressure from government and local authorities to increase attendance data, however adding pressure onto families that are experiencing their child going through Autistic Burnout to attend school at all costs is not helpful for anyone.

Adding the expectation of ‘one more’ lesson, one more day, one more week’ adds to the pressure pot and could result in a pupil needing even more time off to recover long term and the whole family experiencing burnout as a result of living under such stressful circumstances.

If parents need further support in this area, the IPSEA and Not Fine In School websites below offer advice, and the Autistic Girls Network provides some great resources for families and professionals.

Define Fine – Parent Support and Advice

Not Fine In School – Parent Support and AdvicennAutistic Girls Network

IPSEA

Supporting a pupil through an Autistic Burnout crisis

If your pupil is experiencing an Autistic Burnout crisis, reassure parents that this is not their fault. Rather, it is that the demands in their children’s lives have exceeded their capacity to manage, and you will try to support them. The important fact is that you now recognise what may be happening. You can acknowledge that your pupil needs help, provide support, and give them time to heal.

The recent publication ‘Summary of responsibilities where a mental health issue is affecting attendance’ from DFE (2023) provides guidance for school leadership teams and summarises the responsibilities where a mental health issue is affecting attendance and examples of effective practice.

• Be understanding and supportive with young person and their family

• Listen to young person

• Listen to parents/ carers – they know their child / young person best

• Be flexible in your approach

• Refer to CAMHS and Early Help if appropriate

• Suggest parents / carers contact their GP for a referral to CAMHs

• Suggest parents / carers contact the GP themselves if you feel they need support for their mental health. Be mindful there may be long waiting lists for therapy with the NHS

• Local Autism charities may have shorter waiting times and be able to offer support

• Share some of the sign posting links in this article as needed

In addition, recommendations from the AASpire study include:

• Time off from school (if you need support in this area contact IPSEA, Not Fine In School, or Define Fine)

• Reduced self-expectations

• Time stimming

• Time with special interests

• Sensory and/or social withdrawal

• In general, time spent without the “mask”

• Passage of time

It is important that schools consider adopting a neurodiveristy-affirming, neurodivergent-friendly framework so children and young people are less likely to reach Autistic Burnout and ALL children’s and young people’s needs are met in a more inclusive way. However, if you have a pupil experiencing Autistic Burnout now it is important this is acknowledged and recognised.

As a teacher, you have the potential to make a positive difference to a pupil and their family. Schools, multi-agencies, parents/carers and young people all need to work together. Teachers need to understand the needs of their neurodivergent pupils as the effects of Autistic Burnout for young people and their families can be severe.

With understanding and kindness, those working in education can make a positive difference. School staff need to understand the needs of their neurodivergent pupils and the importance of developing positive relationships, creating a neurodivergent-friendly environment and having a flexible approach to try and prevent pupils from reaching Autistic Burnout.

All pupils deserve understanding and support to enable them to thrive and achieve their potential. We need far more research into Autistic Burnout; however, schools are already in a position to validate pupils’ experiences and make changes to meet needs. Autistic Burnout can severely impact learning, mental health, and family life. However, with the right support, over time, children and young people can heal, re-engage, and begin to thrive and achieve their potential.

Autistic Burnout: A Family Guide is available here: Shop | Autisticrealms

Embracing Monotropism and Supporting Young People To Help Prevent Autistic Burnout (Edgar, 2023) is available via Amazon.

Signposting & Information

IPSEA

SOS!SEN

Autistic Girls Network

Not Fine In School

National Autistic Society

Define Fine

Autistic Parents UK Charity

Spectrum Gaming – Autism and Trauma – Barriers to Education

Young Minds Charity

Spectrum Gaming – Support for Neurodivergent Children

Thinking Person’s Guide to Autism – Mental Health and Autism

 

Check out the new website:
Barriers to Education

Barriers to Education – A free, neuro-affirming resource created by the Spectrum Gaming Team, offering practical tools and frameworks to help schools and families understand and reduce barriers to attendance.

It’s built around the WARMTH Framework (Wellbeing, Affirming Practice, Relational Approach, Mutual Understanding, Timely Response, Holistic Support) and includes co-produced guidance on topics such as burnout and recovery, which I was honoured to support alongside many other volunteers.

Check out the website: barrierstoeducation.co.uk