Autistic Burnout: A Lived Experience Perspective
The term ‘autistic burnout’ refers to a condition many have experienced when facing prolonged periods of stress. A person may experience long-term exhaustion (3+ months), loss of function, and reduced tolerance to things in their environment. In this toolkit, autistic self-advocate and author Sylvère Moulanier describes the causes of autistic burnout, how to tell if you are experiencing burnout, and provides tips and strategies to support yourself and work towards feeling better. While this toolkit is written for autistic individuals, it can also be useful for those seeking to support their loved ones who are struggling with autistic burnout.
Contents
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- What can cause Autistic Burnout?
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- How can you tell that it is Autistic Burnout?
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- How can you deal with Autistic Burnout?
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- Steps in Moving Forward
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- How to get help
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- Glossary
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- Resources
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- References
What is Autistic Burnout?
The term ‘autistic burnout’ is an expression used mainly by autistic people to refer to a condition many have experienced when facing prolonged periods of stress. A person may experience long-term exhaustion (3+ months), loss of function, and reduced tolerance to things in their environment. When most people hear the term ‘burnout’, they think of occupational or professional burnout. People experiencing professional burnout describe feeling exhausted and a lack of energy that results in a lack of efficiency and increased struggle in their work, school or other daily activities. Many describe being ‘overworked’ and may feel negative towards their job. Over time they may experience negative health and/or mental health outcomes as a result of the prolonged exhaustion and stress. There is currently no official definition for autistic burnout and it is not recognized as a medical condition by medical professionals. Nonetheless, this phenomenon is something that many autistic adults have described and it is gaining more attention from scientists. Dr. Dora M. Raymaker is a world leader in the field of autistic burnout. She and her colleagues interviewed autistic individuals who had experience with this condition and came up with the following definition: “Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus[1].” It is important to note that autistic burnout can happen at any age, but it usually occurs at major transition points in life, such as at puberty or young adulthood. Any period in which a person experiences lots of changes or stress can prompt an episode of autistic burnout. Autistic burnout may also be more likely to occur in individuals who have multiple diagnoses, also known as co-morbidities[2]. Some commonly associated co-morbidities in autism include generalized anxiety disorder, ADHD, OCD, PTSD, epilepsy, GI issues, and depression[2-4]. It is possible that having multiple diagnoses may be a risk factor for autistic burnout, possibly because they are already having to manage multiple challenges at once[5]. For instance, autistic individuals who also struggle with anxiety disorders or depression may be more susceptible to periods of autistic burnout. In this toolkit, we will:- Describe situations and factors that can lead to autistic burnout
- Provide ways a person can tell if they may be experiencing, or at risk of, burnout
- Suggest changes a person can make to prevent burnout and/or come out of burnout once it has started.
How is autistic burnout different from occupational burnout?
Occupational burnout is said to be mainly triggered by chronic stress in the workplace. Autistic burnout seems to be triggered by a combination of issues in a variety of settings and is not just related to work. It is often accompanied by a loss of skills and a reduction of executive functioning skills. One key element often cited by autistic people experiencing autistic burnout is difficulty to deal with sensory overload, despite once being able to cope with such sensory differences. Additionally, many describe intense physical, mental, and/or emotional exhaustion[1]. Many autistic people say autistic burnout results mainly from the cumulative effect of having to navigate a world that is designed for “neurotypical” people[1]. These issues can lead to sleep troubles, anxiety, and more troubling sensitivity to one’s surroundings. While getting more rest can help, a person experiencing burnout may be unable to get the rest they need. Over time, sensory overload and other stressors can accumulate, and cause physical exhaustion and mental shutdown. Reduction or even complete loss of executive functioning abilities is often the first thing to appear in work or personal environments. An example of the loss of these skills is if a person who was able to manage projects or tasks that have multiple steps struggles to know where to begin when a similar project is given to them. This is often accompanied by the loss of interest in other things, including what used to be the autistic person’s preferred interest or activity. This goes beyond the workplace and/or school, and can impact all aspects of one’s life. For instance, if a person who used to make shopping lists and plan meals for the week feels overwhelmed and can no longer do so. Back to TopHow is autistic burnout different from depression?
Depression is a mood disorder that causes a persistent feeling of sadness and loss of interest, and can interfere with one’s daily functioning. Though there may be a fine line between autistic burnout and depression, there are some important differences. An autistic person may recover more quickly if they know their challenges are caused by autistic burnout rather than assuming their difficulties are being caused solely by depression. During a depressive episode, a person may feel stuck in their sadness or feel numb and lose interest in their hobbies. When a person is experiencing autistic burnout, however, they may not feel sadness at all and may lose abilities that they once had (e.g. may lose the ability to speak). It is not a loss of motivation to do things, but rather a loss of ability. Back to TopDifferences in treatment
Depression is usually treated with a combination of medication and individual or group therapy. When treating autistic burnout, however, it is important to tackle factors related to autism and life stresses in addition to trying to address anything that may be related to depression. Many people experiencing autistic burnout require an adapted environment before they can improve. As such, a first step is for autistic people to remove themselves from the situation that has triggered the burnout. This can be done by themselves or with the help of family, friends or healthcare professionals. Then they can assess which factors are contributing to their burnout. Skipping this step may prevent or impede complete resolution of the matter. Any treatment will have to include education and awareness of what triggers the autistic burnout, and learning the early warning signs to get appropriate environment adaptation. Once those elements are assessed and dealt with, a more “standard” approach can be initiated with better chances of success. Back to TopWhat can cause Autistic Burnout?
As previously described, autistic burnout is caused by a combination of factors. When one or more of these triggers occur too often over a short period of time, a manageable situation can quickly escalate to a crisis. Below is a list of commonly-cited reasons for autistic burnout. Click the dropdown to expand and view a detailed description of each.- To try and identify what caused the conflict (What went wrong?)
- To think about what would have been a better response (What should I have done instead?)
- To imagine what the fallout of this conflict may be (What happens next?)
- If the event was traumatic or similar to a previous traumatic experience, they may replay the events as part of a trauma response (e.g. flashbacks) – it can be helpful to seek the guidance of a mental health professional to address the trauma in a safe manner.
- An Introductory Overview of Some Mental Health Challenges and their ‘Co-Occurrence’ with Autism
- Understanding and Alleviating Anger Rumination and Perseveration
- Understanding and Alleviating Anger Rumination and Perseveration Webinar
- Alexithymia & Autism: When you don’t know what emotion(s) you are feeling
- Rejection Sensitive Dysphoria (RSD): Part 1 – An Introduction
- Emotional Regulation and Dysregulation in Autism: Considerations in Adulthood
How can you tell that it is Autistic Burnout?
There will often be a several signs prior to a period of autistic burnout. Paying attention to those “invisible” things that go unnoticed most of the time for “neurotypicals” is important. Realizing that these signs can present a huge challenge for autistic individuals is a good starting point. Autistic people often know about their own triggers, but may struggle at times to address them or perhaps remember how to deal with them. Below are some questions to ask yourself:- Do any of the possible reasons for autistic burnout described above sound familiar? Do you think any of these are happening for you right now?
- Are you noticing any increases in traits commonly associated with autism? For instance, are you doing more repetitive or self-soothing behaviours than is typical (e.g., rocking back and forth)?
- Are you experiencing increased sensitivity to things in your sensory environment?
- Do you feel tired most of the time?
- Are you having trouble focusing on tasks at work or in school?
- Have you felt a loss in self-esteem? Do you feel like you are ‘not good enough’?
- Are you experiencing a loss of executive functioning skills (e.g., ability to plan, set goals, organize, etc.)?
- Are you shutting down and isolating yourself from others?
- Have you lost interest in activities that used to bring you joy or were soothing?
- Have you lost abilities that you once had (e.g. loss of speech)?
How can you deal with Autistic Burnout?
Instead of thinking that the issue will go away on its own (which rarely occurs!), it is important to pay attention and help yourself or your loved one. Being compassionate and showing empathy (whether to yourself or your loved one), rather than criticizing without understanding, is important and can help. Most people find that being listened to and allowed the space to deal with their issues according to their own needs and direction (whether they are verbal or non-verbal), can help pave the way to improvement and offer a path to well-being. Minimizing demands and creating a safe space for rest and relief from stresses, over an extended period of time, is an indispensable tool for preventing one from falling into autistic burnout or to assist in recovery[1, 14]. Autistic burnout improves when a person feels supported, and is given space and time to feel less overwhelmed. Mental health professionals can be a source of support for individuals at risk of experiencing autistic burnout. Having a therapeutic relationship with a professional with specialized training can significantly help to reduce the likelihood of burnout as well as potentially reducing the length or severity of an autistic burnout event. If possible and relevant, taking advantage of sick leave in the workplace can improve one’s situation. With adequate support, autistic people can learn to find ways to manage their ‘energy reserve’ and eventually increase the amount of time they spend with others and get back to their normal daily activities. They can also find new ways to access resources that will help to control these situations in the future before they get out of hand. Back to TopSteps in Moving Forward
Much work and research are still needed in order to develop better awareness about, and support for, people experiencing autistic burnout. No specific treatment or specific therapy is proven to work efficiently in all cases, but with time, patience, and persistence, help can be found. This may feel like a painfully slow process when searching for a treatment or therapy that is the best fit. But seeking help is a first step toward better understanding and accessing professional and community resources. As mentioned below, if you or the individual you are supporting needs urgent help or is at risk of harm to self or others, call 911 or access the emergency department at your local hospital immediately. In such instances, accessing emergency intervention in easing the crisis is of utmost priority. In the following section, we focus on some potential ways to prevent autistic burnout:Friends and Family: Awareness and support
Awareness is a key factor to prevent an autistic individual from falling into an autistic burnout. Being listened to and heard is important. Having someone that can point out potential triggers before they escalate or cause problems can be extremely helpful. Reaching out to other autistic people who have experienced burnout can help by that individual providing strategies and in turn, helping the autistic person to feel less alone[1]. Identifying ways that people can alleviate or ease pressure at home or work can help the person when they feel ‘stuck’ and don’t know how to proceed. Amidst the importance of support, a caution for friends and family is to avoid jumping right into ‘fixing’ the problem[1]. Being patient and listening to the autistic person allows them to develop their own coping strategies and insights into what they are going through. When we move too quickly into a problem-solving mode, the autistic person may have less control over their own healing and instead may be encouraged to approach the issue with an orientation or view that the ‘helper’ has ‘the’ answer on how a given challenge is to be fixed. The “solutions” presented may be as relevant as pretending that throwing an autistic individual out of a sixth floor will help them learn how to fly! Or throwing them in the middle of the ocean will teach them how to swim! Family and friends can offer support and advice if asked, but should always start from a place of listening and compassion. Remember, no one knows more about what is happening internally than the person experiencing autistic burnout! If there are concerns about self-harm or suicide, it is important to consult with a mental health professional or seek emergency services right away in order to find needed resources or supports. Learn More here:Housing
Stable housing plays a huge role in the stability of autistic people and the prevention of autistic burnout. Changes in habits or daily life and relocating are major factors in triggering anxiety and potential autistic burnout[1, 16]. To prevent burnout if facing a move, prepare for housing transitions long in advance. Talking, training in relevant areas of life skills, and rehearsing beforehand what it will look like in the new location, can help greatly in preventing feelings of being overwhelmed. Remember, a calm, familiar, and secure environment is key to long term emotional stability. Learn More here: Housing and Independent Living Collection Back to TopHow to get help
Autistic people often struggle just to realize they are leaning towards autistic burnout. Just like “neurotypicals”, they may have a hard time to see the roadblocks preventing them from keeping on the path they’re used to; particularly, when they additionally face complex challenges in life. Yet getting the help one needs when they need it, is critically important! This means having access to effective support through family and friends, if available. But as autistic people and their carers get older, help may be needed from community resources and healthcare professionals. Needed services include assessment and care for urgent or ongoing needs. Finally, finding effective support will likely help to reduce the likelihood of, and length of, an autistic burnout episode. In creating a life of quality on one’s own terms, supports and positive engagement in the community are so important! An autistic individual who begins to experience or display the first signs of autistic burnout is advised to seek help and support immediately. Don’t let the struggles fester… there is help! Below are references and resources that may be helpful as you move forward. Back to TopGlossary:
- Co-morbidities: Conditions in addition to autism (e.g. ADHD, anxiety disorders, etc.). Co-morbidities can “mask” and/or amplify autistic traits and challenges.
- Executive functioning: Capacity to physically and mentally accomplish a task or set of tasks and/or to carry out activities such as planning, setting goals or organizing daily activities.
- Neurodivergent/Neuro-atypical: Refers to individuals who are diagnosed with a neuro-developmental and/or mental disorder such as autism, bipolar disorder, attention deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), etc.
- Neurotypical: Refers to individuals who do not have a neuro-developmental and/or mental disorder such as autism, bipolar disorder, attention deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), etc.
- Sensory over-sensitivity: Senses are amplified in an autistic individual to the point where what is typically experienced as a normal, bearable excitation of senses by a “neurotypical” individual, like a rub of one’s arm with the palm of a hand, or a neon light switched on, can be experienced as unbearable. This can trigger strong reactions or shutdowns.
- Shutdown: When a person is so overwhelmed that it generates prolonged withdrawal or an incapacity to respond to others, resulting in an inability to go about usual daily activities.
Resources
- Burnout Collection
- Autistic Burnout – Prevention and Recovery Strategies
- Emotional Regulation and Dysregulation in Autism: Considerations in Adulthood
- An Introductory Overview of Some Mental Health Challenges and their ‘Co-Occurrence’ with Autism
- Alexithymia & Autism: When you don’t know what emotion(s) you are feeling
- Sleep Issues among Autistic Adults: A Review of Selected Literature
- Autism BC: https://www.autismbc.ca
- Autism Edmonton: https://www.autismedmonton.org
- Autism Society of Newfoundland and Labrador: https://asnl.ca
- Autism Nova Scotia: https://www.autismnovascotia.ca
- Autism Ontario: https://www.autismontario.com
- Autism Yukon: https://autismyukon.org
- Sinneave Foundation: https://sinneavefoundation.org
- Miriam Foundation: https://www.miriamfoundation.ca/en/home.html
- Centre for Addiction and Mental Health: https://www.camh.ca
- Children’s Autism Services of Edmonton: https://childrensautism.ca
- Asperger amitié: https://aspergeramitie.org/
- Autism Housing Network: https://www.autismhousingnetwork.org
- Autism Society Alberta: https://autismalberta.ca
- Autism Alberta’s Alliance: https://autismalberta.ca/alliance
- Centre for Autism Services Alberta: https://centreforautism.ab.ca
- Autisme Montreal: https://autisme-montreal.com/en
- https://aaspire.org
- AASPIRE Pilot study on autistic burnout and suicidal behavior
- Autistic Burnout: “My Physical Body and Mind Started Shutting Down” – By Dora Raymaker
- Dora Raymaker:https://doraraymaker.com/
- Autistic burnout, explained: https://www.thetransmitter.org/spectrum/autistic-burnout-explained
- Autism may disrupt the body’s circadian clock: https://www.thetransmitter.org/spectrum/autism-may-disrupt-bodys-circadian-clock
- The Center for Autism Services, Science and Innovation (CASSI™)
- Depressed mood in autism – Dr Kaite Gotham: https://www.youtube.com/watch?v=2my_yYD7alE
- Dr Kaite Gotham: https://www.researchgate.net/profile/Katherine_Gotham
- Erin Bulluss, Ph.D., and Abby Sesterka
- https://www.psychologytoday.com/ca/blog/insights-about-autism/202010/doing-more-doing-less-reducing-autistic-burnout
- https://www.goodtherapy.org/blog/autistic-burnout-an-often-misunderstood-element-of-autism-080620197
- YouTube Channel
- How to avoid autistic burnout (Is it even possible?!): https://www.youtube.com/watch?v=t9mI0NISBQI
- Depression vs Burnout in Autism – How To Tell The Difference: https://www.youtube.com/watch?v=3HE-Q3jMJ38
- Burnout on the Autism Spectrum: https://katiemiaaghogday.blogspot.com/2013/04/burnout-on-autism-spectrum.html
- Ask an autistic/neurowonderful: Ask an Autistic #3 – What is Autistic Burnout? https://www.youtube.com/watch?v=DZwfujkNBGk
- Book: https://www.amazon.com/dp/B0DH1WXBC8
- AsIAm Ireland Interview: Energy Accounting: Neurodiversity-affirming Approach to Stress and Burnout: https://www.youtube.com/watch?v=XXjOIblH1Zk
- YouTube Channel
- Autistic Burnout: https://www.youtube.com/watch?v=fUSUGHWcKt4
- Autistic Fatigue: https://livingautism.com/autistic-fatigue
- YouTube Channel
- Autism Burnout: How To Avoid Autistic Burnout: https://www.youtube.com/watch?v=o4XS6Im4yOo
- Autism Burnout Recovery (5 Tips For Autistic Burnout Recovery): https://www.youtube.com/watch?v=YAFzRUFe1SY
- Autism Shutdown Vs Autism Burnout – What’s The Difference: https://www.youtube.com/watch?v=wdgKacBozh0
- Autistic Fatigue and Exhaustion: https://www.undercoverautie.com/blog/2018/2/1/autistic-fatigue-and-exhaustion
- YouTube Channel
- Dépression et antidépresseurs : mon experience: https://www.youtube.com/watch?v=VVU4veQ5IXcResources
References
- Raymaker, D.M., et al., “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): p. 132-143. https://doi.org/10.1089/aut.2019.0079
- Bauman, M.L., Medical comorbidities in autism: challenges to diagnosis and treatment. Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeutics, 2010. 7(3): p. 320-327. https://doi.org/10.1016/j.nurt.2010.06.001
- Frye, R.E. and D.A. Rossignol, Identification and Treatment of Pathophysiological Comorbidities of Autism Spectrum Disorder to Achieve Optimal Outcomes. Clinical medicine insights. Pediatrics, 2016. 10: p. 43-56. https://doi.org/10.4137/cmped.s38337
- Matson, J.L. and P.E. Cervantes, Commonly studied comorbid psychopathologies among persons with autism spectrum disorder. Research in developmental disabilities, 2014. 35(5): p. 952-962. https://doi.org/10.1016/j.ridd.2014.02.012
- Cage, E. and Z. Troxell-Whitman, Understanding the reasons, contexts and costs of camouflaging for autistic adults. Journal of Autism and Developmental Disorders, 2019. 49(5): p. 1899-1911. https://doi.org/10.1007/s10803-018-03878-x
- Livingston, L.A., P. Shah, and F. Happé, Compensatory strategies below the behavioural surface in autism: a qualitative study. The Lancet Psychiatry, 2019. 6(9): p. 766-777. https://doi.org/10.1016/s2215-0366(19)30224-x
- Mazurek, M.O. and G.F. Petroski, Sleep problems in children with autism spectrum disorder: examining the contributions of sensory over-responsivity and anxiety. Sleep medicine, 2015. 16(2): p. 270-279. https://doi.org/10.1016/j.sleep.2014.11.006
- Vetri, L., Autism and Migraine: An Unexplored Association? Brain Sciences, 2020. 10(9): p. 615. https://doi.org/10.3390/brainsci10090615
- DuBois, D., et al., Interoception in autism spectrum disorder: A review. International Journal of Developmental Neuroscience, 2016. 52: p. 104-111. https://doi.org/10.1016/j.ijdevneu.2016.05.001
- Tierney, S., J. Burns, and E. Kilbey, Looking behind the mask: Social coping strategies of girls on the autistic spectrum. Research in Autism Spectrum Disorders, 2016. 23: p. 73-83. https://doi.org/10.1016/j.rasd.2015.11.013
- Hare, D.J., et al., Anxiety in Asperger’s syndrome: Assessment in real time. Autism, 2015. 19(5): p. 542-552. https://doi.org/10.1177/1362361314531340
- Ibrahim, K., et al., Anger Rumination is Associated with Restricted and Repetitive Behaviors in Children with Autism Spectrum Disorder. Journal of autism and developmental disorders, 2019. 49(9): p. 3656-3668. https://doi.org/10.1007/s10803-019-04085-y
- Camm-Crosbie, L., et al., ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism, 2019. 23(6): p. 1431-1441. https://doi.org/10.1177/1362361318816053
- Pearson, A. and K. Rose, A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice. Autism in Adulthood, 2021. 3(1): p. 52-60. https://doi.org/10.1089/aut.2020.0043
- Soeker, M.S., A descriptive, qualitative study of the challenges that individuals with autism spectrum disorder experience when transitioning from skills training programs into the open labor market in Cape Town, South Africa. Work, 2020. 65(4): p. 733-747. https://doi.org/10.3233/WOR-203127
- Mandy, W., et al., Easing the transition to secondary education for children with autism spectrum disorder: An evaluation of the Systemic Transition in Education Programme for Autism Spectrum Disorder (STEP-ASD). Autism, 2016. 20(5): p. 580-590. https://doi.org/10.1177/1362361315598892


