(This is written from lived experience as a parent and teacher, supported by the amazing research of professionals and advocates in this field. I'm not a therapist or medical professional). My Autistic Burnout: A Family Guide 137 page resource is available here
Autistic Burnout is widely talked about in Autistic communities however it is not yet recognised by the British Medical Journal as a diagnosable condition, this does not make it any less traumatising and disabling for those experiencing it or supporting those going through Autistic Burnout. If your child is going through Autistic Burnout, they will need your support. They will need understanding, an increase in sensory regulation time and a decrease in demands (family and school). Children and adults can heal from Autistic Burnout but it takes time and significant changes may need to be made.
Types of Autistic Burnout 1. Autistic daily burnout
This is caused by the demands of social and sensory input outweighing the individual's
capacity to manage and is often seen with children as presenting 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 day to day burnout; it is also referred to as ‘constant low-level burnout' in the AASPIRE Autistic Burnout study by Christian Maslach and Michael Lieter (2007). 2. 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 your child has got to the point where they are experiencing Autistic Burnout, they may find it difficult to continue their usual daily routines including, going to school, extra-curricular and social activities. In the AASPIRE study this is referred to as an 'intense acute burnout', it can seriously impact mental health.
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 Some of the signs your child may be going through Autistic Burnout are mentioned in my article 'Parent Ideas for Autistic Children Struggling at School'.
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 personal parental experience and talking to other parents going through this anecdotally), I would add:
reduced ability to tolerate sensory or social overload changes in behaviour and dysregulation
more tired / more anxious energy
changes to diet and eating habits, may be more restricted diet to try and keep some feel of 'control' & autonomy & predictability
changes to sleep patterns, disrupted sleep, may be sleeping less as too anxious or alternatively shutting down and just wanting to sleep all the time
different responses to sensory stimuli - hyper or hypo aware of things they may be used to tolerate better
emotional - may be more tearful and connection seeking 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 - trying to control
Supporting your child through Autistic Burnout
Ideas for at home
If you are seeing some early signs of Autistic Burnout, then I would suggest you try and implement some neurodivergent friendly lifestyle changes and adopt what is also described as a 'low arousal parenting approach'.
1. Low Demand Parenting
Ross Greene (2005) famously said, 'children do well if they can, when they can'. It is up to us as parents and carers to allow a space for our children to do well, to meet their needs and thrive. Low demand parenting is not about 'giving in' it is about prioritising and accommodating needs, there is always a plan b....or even plan x, y, z!. Low demand parenting is what you need to do if you are in survival mode just to get through the day. If you are not in crisis mode, then adopting a low demand and low arousal approach reduces the likelihood or severity of Autistic Burnout and potential mental health issues. Low Arousal Parenting Approach
de-escalation
thinking ahead
avoiding crisis
reducing demands
giving space and time to decompress
putting children’s sensory needs first
co-regulation
2. Spoon theory / Emotional bucket theory
I find it helpful to visualise children each having a bucket slowly being filled up by various events, 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 child's bucket, it starts to overflow or leak out, this is when meltdowns or shutdowns may happen. It is not the children’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 and keep the levels below capacity where it is more manageable. An alternative way of visualising the energy capacity for your children and your family is the Spoon Theory created by Christine Miserandino (2003), which you may prefer or be more familiar with.
3. Understand Neurodivergency
Educate your family about what it means to be Autistic and develop a greater understanding of the neurodivergent experience. There are some amazing resources available, I would highly recommend NeuroBears. NeuroBears is aimed at children and covers the main key concepts of what it means to be neurodivergent':
Neurodivergence - Autism + environment = outcome (Luke Beardon)
What autism isn’t – co-occurring conditions
Autism and sensory experience
Autistic overwhelm, meltdowns, and shutdowns.
Autistic communication
Autistic Masking
Spoon Theory and Autistic burnout
4. Transitions
You need to be mindful of the transition times in your child’s life that can be difficult to manage and may trigger or contribute to Autistic Burnout (e.g., moving house, changes of teacher, parent separation, changes to school and hormonal changes in puberty).
Events you may regard as insignificant may not be so insignificant to your child. Changes such as events in school and sensory issues can all add up and contribute to burnout. All transitions and change take more energy to try and manage, if there is not enough time to decompress and re-regulate as needed it could contribute to Autistic Burnout
5. Sensory Needs
Increase sensory decompression time and decrease parent demands
Think of your child's sensory profile, increase sensory decompression time, and decrease parent demands. If your child plays a lot of online gaming, this may mean they need to do this for longer and more frequently if it helps regulate them, that is ok don't feel bad about expectations of how you 'should' be parenting. You need to do what is right for you and your family now, equally if your child loves climbing, spinning and repetitive play - that is ok they are self-regulating it is their way of coping. If anxieties escalate adopt a co-regulation technique, let your calm meet their storm and feelings of overwhelm.
Risk of ‘Just’ one more
If you feel your child is going through Autistic Burnout it is essential to know they are already at 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 overflow, they will no longer be able to keep trying to paddle upstream and keep trying to go into school or keep trying to go to their clubs, they will reach Autistic Burnout. If your child is in Autistic Burnout you need to accept and acknowledge this is where your child and family are right now, you can't rush the healing process. 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.
‘They seem fine in school’ Schools often say they don't see a problem and children seem 'fine' in school. Some children mask (subconsciously or consciously), they effectively put a lid on their cup, they try and fit in with their peers, keep their 'autistic self' contained in school. This issue is that there is only so long this is manageable for, masking is exhausting. When they return from school and are back home in their safe environment with people, they know understand them they let it all out, this is often seen as a 'meltdown' or 'shutdown' (an internal meltdown). This is children’s way of asking for help, it is their way of saying it has all got too much for them to manage alone, you need to step in as a parent and lower demands for them, co-regulate with them and give them time to decompress, recover and heal. Schools have a responsibility to provide an education and there is increased pressure for teachers to increase attendance. However, an education at the cost of mental ill health is not worth the risk and in reality, it won't be an effective education if your child is consumed with sensory overload, anxiety and depressed in class. There is advice on the IPSEA and Not Fine In School websites below if you require support in this area.
Supporting your child through an Autistic Burnout crisis
If your child is in the depths of an Autistic Burnout crisis, remember this is not your fault as a parent and it is not the fault of your child, rather it is that the demands in their life have exceeded their capacity to manage. The important fact is that you now recognise what may be happening, you can acknowledge your child needs help, provide support and give time to heal. It may be as a family you need to make some significant changes to your lifestyle and family dynamics, many parents like myself find themselves unable to continue their career due to their children being unable to attend school. Remember this won't be forever but it is where you are now, you will all get through this and move on, it may be that your path is different to what you had envisioned, but that is ok.
Contact your GP for a referral to CAMHs for your child
Contact the GP if you feel you need support for yourself
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
Have a meeting with the school (class teacher or SENCO), they may not have heard of Autistic Burnout, but this doesn't mean they won't be able to help.
Share some of the links in this article and seek out your own research to support your individual needs.
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
Strategies and recommendations for families and friends
Reduced expectations
Acceptance of the person even when they don’t “pass” for non-autistic / acceptance of Autistic behaviour
Emotional support, empathic connections
Direct support for instrumental activities of daily living
Accommodations at work / school / community
Look after yourself
It is exhausting and relentless caring and trying to meet the needs of any child, if your child is also Autistic and is in Autistic Burnout it is essential you get support for yourself too and look after your own mental health. If you have reached the stage that your children are no longer coping with school or playdates or extracurricular activities and you feel like you are on a daily roller coaster living in survival mode, then you need to pause and re-evaluate your family life, where you are and what you can change to help get you through this.
You can all get through Autistic Burnout, but it may take time, you may need to reach out for more support and let go or change some your own parenting ideas and expectations.
There are many wonderful parent and Autistic communities online and in local communities, you are not alone.
In time and with your support and understanding your child can begin to heal and will be able to move through Autistic Burnout.
You will get through this!
My Autistic Burnout: A Family Guide 137 page resource is available here
More Parent Support Groups & Information
**Article written from my lived experience as a parent and teacher. Knowledge gained through various personal research and neurodivergent communities.
Autistic Realms is a space for parent support and teacher guidance.
I am not a medical professional or therapist** I am now honoured to be an affiliate for The Autistic Advocate, Kieran Rose. The following
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