Understanding autistic burnout - The hidden cost of coping

by Helen Edgar

A teacher may say that an autistic child in their class "seems okay" all day at school, but parents or carers report that their child falls apart the moment they get home. An autistic adult may appear to be managing work, family and daily life for months, maybe years, and then reach a point where they can't get out of bed, can't answer messages or are struggling with small things that used to feel manageable.

If you're a parent, partner, carer or professional, it can be worrying and confusing when you can't understand what may be going on for an autistic person you support. It may look as though nothing has changed in their life. There may have been no major life event and no obvious reason why they are finding it harder to cope.

Autistic burnout may be one reason for persistent or increasing difficulties in everyday life. Burnout isn't a behaviour problem to be managed. It is usually a sign that the demands being placed on a person have exceeded the resources they have available to meet them.
 

What is autistic burnout?

Autistic burnout is different from simply being tired or having a difficult few days. Raymaker and colleagues (2020) describe autistic burnout as involving chronic exhaustion, loss of skills and reduced tolerance to stimulus, arising from the demands of living as an autistic person without sufficient support or relief.

Burnout often builds gradually. The demands of everyday life can accumulate over weeks, months or even years, particularly when the environments in which someone lives, learns or works don't adequately meet their needs.

Burnout can look like:

• Exhaustion that doesn't lift with sleep
• Losing access to skills that were previously manageable
• Withdrawing from people or activities
• Memory problems or difficulty thinking clearly
• Increased or changed sensory sensitivities
• Struggling with everyday tasks that used to be straightforward
• Changes in eating or sleeping
• More frequent meltdowns or shutdowns
• Increased restlessness or apparent hyperactivity for some people
• Increased anxiety or low mood

In children and young people, this might show up as increasing difficulties with school attendance, concentration, learning or managing the school day. In adults, it might mean increasing difficulty with work, caring responsibilities, relationships, self-care or routines that were previously manageable.

Sometimes the person continues to appear as though they are coping for quite a long time. The effort involved may simply not be visible to other people.

What may be happening in a person's life?

Autistic burnout rarely makes sense if we look only at what is happening on the surface. There may be no single major event that explains why someone is suddenly finding life much harder. Instead, it can be helpful to look at the accumulation of demands over time.

At any age, a person may be using considerable energy to manage environments, expectations and everyday demands that do not fit well with their needs. This might include coping with sensory environments, navigating relationships, managing uncertainty or change, communicating needs, moving between activities, meeting expectations at school or work, caring for others, or masking distress in order to get through the day.

There may also have been changes that seem relatively small to other people but have had a significant impact on the person. A change of teacher, classroom, support worker, routine, friendship group, job, home environment or family circumstances can add to the demands someone is already carrying.

Sometimes there has been no obvious change at all. The demands may simply have continued for too long without enough opportunity for genuine rest and recovery.

This can help explain why burnout may seem to appear suddenly. A child might manage throughout the school day and then have frequent meltdowns or shutdowns at home. A teenager might increasingly struggle to attend school or take part in things they previously managed. An adult might continue working, parenting or managing everyday responsibilities until tasks that once seemed straightforward become increasingly difficult.

Rather than asking only, "Why can't they do this anymore?", it may be more helpful to ask: "What has this person been having to manage, and what is using up their capacity?"

Burnout and low mood

Autistic burnout can co-exist with low mood or depression, and there can be considerable overlap in how they appear.

Withdrawal, exhaustion, changes in sleep or eating, difficulty concentrating, reduced motivation and losing interest in previously enjoyed activities can occur with both.

However, autistic burnout and depression are not necessarily the same thing. A person may experience burnout without depression, depression without burnout, or both at the same time.

This distinction matters. Assuming that every difficulty is either "just burnout" or "just low mood" can mean that important needs are missed.

Where low mood is present, appropriate support should still be considered. However, commonly suggested approaches may need to be adapted to the autistic person's needs and their current capacity. Suggestions such as exercising more, socialising more, establishing demanding routines, taking on new activities or pushing through difficulties may not always be appropriate when someone is already severely depleted.

Some approaches may be helpful with adaptations. Others may need to wait, or may not be right for that particular person.

Significant or persistent changes in mood, functioning, eating, sleeping or ability to manage everyday life should not automatically be attributed to autistic burnout. Physical health conditions, mental health difficulties, pain, sleep problems and other sources of distress may also need to be considered.

What may help with autistic burnout?

Autistic burnout isn't something that can simply be corrected by asking someone to try harder.

If a person's capacity has been exceeded, increasing demands can make things more difficult. A more helpful starting point is to understand what is taking energy from the person, what can genuinely be reduced, and what support might make everyday life more manageable.

This will look different for every person and at every age.

It might mean reducing expectations for a period of time, making school or work more flexible, allowing more recovery time after demanding activities, reducing unnecessary sensory or social demands, providing greater predictability, changing how we communicate, accepting an increased need for time alone, or providing more help with everyday tasks that the person previously managed independently.

What is restorative will also vary. For one person it may be spending time alone; for another it may be engaging deeply in a favourite activity, spending time with a trusted person, being outside, moving their body, having fewer decisions to make, or simply having periods when nothing is expected of them.

The important question is not what should be restorative, but what actually reduces demands and helps that particular person regain capacity.

Recovery may not mean going back to before

It is important not to measure recovery only by how quickly someone returns to doing everything they did before.

Sometimes burnout tells us something important about what came before it.

If the person's previous level of activity depended on continually pushing beyond their capacity, masking their difficulties, or recovering just enough to do it all again, returning to exactly the same pattern may not be sustainable.

Recovery may therefore involve more than rest. It may involve understanding the person's needs differently and making longer-term changes to their environment, expectations, support or routines.

There may also be ups and downs. Someone might be able to manage something one day and find the same thing overwhelming another day. Increased capacity in one area doesn't necessarily mean that capacity has returned everywhere.

The aim isn't simply to get someone back to appearing as though they are coping.

It is to understand what has been costing them so much, reduce demands where possible, support their health and wellbeing, and help create a life that is more sustainable for them.

Also see our blog post on How to support autistic burnout recovery for more guidance and tips