Autism burnout is much more than exhaustion; overwhelm does not suffice to describe the depths many autistic adults mention when describing the sensory overload, stress and most concerning, the apparent loss of skills associated with autistic burnout.
The first day at a new school or job is a sure way to experience stress, uncertainty, and awkwardness. Trying to figure out how to fit in, trying to understand the culture, and the unique social rules is exhausting at first. For many autistic children the neurotypical world feels like the first day at a new school…everyday. Navigating the strangeness and camouflaging to fit in may be one of the biggest contributors to autistic burnout.
Researching burnout in the autism population is difficult because scientific literature concerning the syndrome is scarce. Burnout consequences and how it may affect autistic adults is increasingly discussed in online forums, but autistic burnout in children is rarely mentioned. For parents this may be of concern as the autistic community often identifies autism burnout as a significant mental health risk (Mantzalas et al., 2021).
Caregivers who are not informed about autistic burnout may interpret a child’s lethargic or zoned-out behavior as laziness, a lack of motivation, or even regression. But, armed with information parents may discover that the unrelenting stress of camouflaging autism to get by in a neurotypical world, could bring their child to the brink of burnout.
Defining autistic burnout
Burnout specific to autistic people differs from burnout as we know it from pop psychology. The idea of an overworked CEO who needs a vacation is far removed from a kind of burnout so severe it is sometimes referred to as autistic regression.
It is an apt description, because autistic burnout may render a person fatigued to the extent that they are incapable of musteing the mental strength to accomplish tasks within their capabilities. In this article the term burnout will be used to prevent confusion, because regressive autism is used to describe a condition where children develop in a typical manner but suddenly start losing speech and social skills.
A burned out brain with no clean-up crew…
“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout, the title from a recent study (Raymaker et al., 2020) paints a vivid picture of autistic burnout. This study provides great insight because the aim of characterizing autistic burnout was achieved by utilizing a community-based participatory research approach with the autistic community at every step of the study.
The primary characteristics of autistic burnout according to the results of the study (Raymaker et al., 2020) are:
- Chronic exhaustion
- Loss of skills
- Less tolerance to stimuli
Burnout in neurotypical people may be characterized as emotional, physical and mental exhaustion due to exposure to intense, persistent/prolonged stress. An autistic person may deal with all of this, with the added stress of masking their neurodivergence to avoid stigma and rejection.
A neurotypical employee may experience burnout due to a heavy workload and unrealistic expectations. For an autistic person, this stressful scenario may be elevated if they are already dealing with workplace bullying, sensory overload and masking of their symptoms to fit into the work culture.
For autistic children school may be an especially overwhelming experience characterized by intense sensory input, a demanding workload (not always in sync with individual developmental levels) and complex social rules.
A taxing environment, where a child feels pressure to hide their true identity, may contribute to a child—especially those with an atypical sensory processing system—experiencing:
- more meltdowns and shutdowns
- increasing reactivity to the sensory environment
- symptoms of a physical nature (gastrointestinal issues, migraines etc.)
- regression; the child may shutdown appearing to lose previously acquired social and speech skills
Autistic burnout is not a medical term and, therefore a checklist of symptoms is not available. Parents, worried about a child who seems to be retreating from the world, need to pay attention to clues like an increase in irritability, lethargy, unresponsiveness, social withdrawal; and as exhaustion escalates, an apparent loss of self-care, social, and speech skills.
Because of the lack of literature, parents may wonder about the difference between meltdowns and autistic burnout. Both may be a reaction to sensory overload, emotional exhaustion from masking, and the pressure to meet external expectations from the neurotypical world. Autistic adults differentiate between the two by emphasizing the longer length and consequences (such as regression) of burnout.
A meltdown may last for hours, but autistic burnout can last for numerous months. According to the above mentioned study (Raymaker et al., 2020) autistic burnout is a syndrome stemming from chronic life stress and a discrepancy between expectations and abilities while lacking appropriate support. The authors also state that the exhaustion is pervasive and long-term; typically lasting longer than three months.
The prospect of a child losing previously acquired skills, becoming overwhelmed by sensory input, and experiencing serious physical symptoms means prevention of burnout is crucial. Paying careful attention to factors leading to fatigue and exhaustion is best suited to parents and caregivers who are often great detectives of small but significant changes.
Causes and characteristics of autistic burnout
There is no single, straightforward reason why autistic burnout occurs. Autism is a spectrum disorder, and accordingly, every person with autism will cope with stress and sensory overstimulation in a unique manner. In many ways, however, the core characteristics of autism may predispose a child to stress and long-term exhaustion that could contribute to burnout.
Challenges with communication and social skills
Social interactions are difficult for children on the spectrum. An everyday social interaction may involve multiple challenges like maintaining eye gaze, small talk, reading body language, and conversational turn-taking. And, while autistic advocates are spreading the message of neurodivergent acceptance, in reality, many children feel forced to mask their autism to fit in socially. These kids admit to forcing painful eye contact and other masking behaviors to belong and be accepted by neurotypical peers.
It’s easy to see how simple social interactions can become straining when it involves camouflaging to accommodate social norms. Society often demands multiple such interactions of children in everyday life: school, therapy, medical appointments, and extracurricular activities are a few examples. Masking autistic traits multiple times a day sounds exhausting; it is little wonder many autistic people feel it is at the root of autistic burnout.
A child’s self-esteem may be negatively affected when they feel pressure to take on a different persona for social acceptance. Masking in autism is not the neurotypical equivalent of managing a positive reputation; rather it’s denying one’s identity, the concealment of a stigmatized identity (Miller et al., 2021).
Such research may not be easy for parents to digest, specifically the idea that their child may feel the need to conceal their identity to manage in the neurotypical world. But, acknowledging the everyday strain of masking may empower parents to recognize and even prevent burnout.
Children on the spectrum often mask their communication differences by copying the way their peers interact and socialize. They try to imitate the way popular kids talk and many speak about adopting mannerisms and a style of dressing to fit in. Dressing in trendy clothes when tactile hypersensitivity is an issue illustrates just how far a child may need to stray from their true identity to fit in.
Communicating, dressing, and joking in a way that accommodates neurotypical society’s expectations must be an exhausting (and unfair) burden for children, but repressing stimming—another characteristic of autism—may just be one of the most fatigue inducing of all camouflaging tactics.
Restricted, repetitive behaviors
A core characteristic of autism is repetitive behavior, which could manifest as self-stimulatory, repeated actions like hand-flapping, finger-flicking, and posturing. These repetitive movements are referred to as stimming, a behavior which many autistic people find soothing and comforting.
Even though most people stim, stimming in autism is more pronounced. Children with autism are often reprimanded for stimming and even when it is accepted by parents, a child’s peers are likely to mock the behavior. One of the reasons autistic kids stim, is to soothe themselves when the neurotypical world becomes overwhelming. But, when the world ridicules such self-soothing behavior, children learn to repress one of their most comforting coping mechanisms.
Masking autism to avoid stigma, repressing stims to steer clear of ridicule…it’s easy to see how burnout may be a reality for children on the spectrum. And that’s before considering the impact of sensory input on an atypical sensory processing system.
Atypical response to sensory input
The Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM–5; American Psychiatric Association, 2013) includes sensory issues as a feature of restricted/repetitive behavior. Research (Ben-Sasson et al., 2009) indicates that the majority of children on the spectrum have difficulty with sensory processing.
An autistic child who is hyper-reactive to sensory stimuli, for example, will be in a state of high alert most of the time. A prolonged state of (heightened) alertness can lead to fatigue and exhaustion over time.
Sensory-seeking children are also often in a deregulated state of being; crashing into furniture, playing too rough, and spinning endlessly—all in search of the sensory stimuli their system craves. These kids may get in trouble for bullying; their school days may be filled with fatigue inducing conflict, hyperactivity, and restlessness.
Being knowledgeable about a child’s sensory challenges and needs can empower parents to help prevent overwhelm, meltdowns and perhaps even autistic burnout. Determining your child’s sensory profile is a great first step (free resources like this Sensory Profile Checklist may be helpful).
Preventing burnout
Parents sometimes mention an increase in meltdowns as a predictive sign of autistic burnout. In addition, children may seem less motivated and it may appear as though they are losing previously acquired skills.
Mental and emotional exhaustion may affect executive function, meaning the skills may not be lost, rather, the child may just be too fatigued or exhausted to perform certain tasks—especially tasks with high executive function demands.
Autistic burnout is better prevented than cured so parents should be on high alert when school and other activities become increasingly demanding. If your child is facing more situations where they feel pressure to mask their autism, recognize the mental and emotional toll of such camouflaging. No child should feel the need to camouflage their neurodivergence, but the reality is that children crave a sense of belonging and acceptance by peers. They may mask their autism to be like everyone else.
While every child’s needs will differ in times of mental, emotional and physical exhaustion, the following may be of help to children at risk of autistic burnout:
- When your child is facing increasing demands at school, provide enough time for rest. Taking a little time off from their usual schedule may be necessary. Spending time doing nothing in nature, or allowing your child a little extra time to indulge in their special interest may relieve built-up pressure
- Advocate for your child and educate others about their different ways of communicating. If your child is surrounded by people who understand autism, they may feel less pressure to mask. If, for example, people know your child struggles to maintain eye contact (and they recognize that it does not mean your child is not paying attention or being rude) it may facilitate less stressful social interactions. When children are mature enough they should be encouraged to self-advocate, children deserve to get the support they need to prevent burnout
- Your child may be overwhelmed or stressed and stimming could be their way to self-soothe. When you ask them to stop (harmless) stimming you may be removing one of their only coping mechanisms. When stimming becomes intense and persistent to the point where it interferes with daily living, recognize that your child may be under increasing pressure, and thus self soothing more to cope. Addressing the source of such stress may decrease stimming
- Meeting sensory needs can provide stress relief. Just watch a hyposensitive child receiving a deep pressure massage; receiving the craved tactile input along with low-demand human interaction often visibly relaxes and revives a sensory-seeking kid
- Creating a sensory room may not be possible for everyone, but even a sensory corner may help your child relax after school, taxing social interactions, and frustrating transitions
- Masking takes a serious emotional toll and erodes self-esteem. Music and drama therapy where children feel free to express themselves authentically may help your child embrace their true self in a safe space
- Most of all, keep in mind your child is doing their best to cope in a world that was not designed for them. When they appear aggressive, stubborn, or exhausted it’s probably because they’re just tired of putting on a mask to conceal their neurodivergent identity
If appropriate, talk to your child about burnout. Children often feel guilty when they are not meeting society’s expectations; knowing the struggle is not their fault will make them feel accepted and supported. Create a space where they feel safe to share feelings, even negative ones. A parent, who knows their child best, is also in the best position to step in with added support when a child becomes too exhausted to cope.
References:
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596
Ben-Sasson, A., Hen, L., Fluss, R., Cermak, S. A., Engel-Yeger, B., & Gal, E. (2009). A meta-analysis of sensory modulation symptoms in individuals with autism spectrum disorders. Journal of autism and developmental disorders, 39(1), 1–11. https://doi.org/10.1007/s10803-008-0593-3.
Mantzalas, Jane & Richdale, Amanda & Adikari, Achini & Lowe, Jennifer & Dissanayake, Cheryl. (2021). What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms. Autism in Adulthood. http://doi.org/10.1089/aut.2021.0021.
Miller, Danielle & Rees, Jon & Pearson, Amy. (2021). “Masking Is Life”: Experiences of Masking in Autistic and Nonautistic Adults. Autism in Adulthood.
Raymaker DM, Teo AR, Steckler NA, et al. (2020). “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout. Autism in Adulthood. 2020;2(2):132-143. doi:10.1089/aut.2019.0079.
