EMERGING IDEAS IN UNDERSTANDING AND ADDRESSING AUTISTIC BURNOUT
By Connie Wong, MSocSc; David Nicholas, PhD, RSW
Faculty of Social Work, University of Calgary
This document reflects a review of the literature and is not meant to offer professional advice. If you are experiencing elements of autistic burnout or wanting more information, please seek professional advice from your health care provider.
Aim and Introduction
This toolkit reflects a review of the literature from various authors, including helpful input from Autistic individuals. The toolkit does not offer an in-depth understanding of what is Autistic burnout. An earlier toolkit on the AIDE Canada website offers information on Autistic burnout: https://aidecanada.ca/learn/health/Autistic-burnout-toolkit. The authors want to thank reviewers: Christina Devlin, BA (Hons), RSSW; Briano DiRezze, PhD, OT Reg(Ont.); and Adam Glendon who each reviewed the toolkit, and whose input has contributed to this version of the toolkit.
The aim of this toolkit is to briefly offer some practical ideas to consider in moving forward constructively. However, it is acknowledged that much has yet to be learned about Autistic burnout, and how to proactively address it. Profoundly important to this work, there is a critical need for societal changethat reduces stigma and discrimination toward Autistic people. This requires working towards greater acceptance of neurodivergence and accommodation in society.
This toolkit is written with multiple audiences in mind: Autistics, family members, allies, supporters, and service providers. In our attempt to make this applicable to multiple audiences, we’ve frequently used the third person.
We also acknowledge that this information, although important, may be triggering or upsetting. For Autistics, if you need help or support, we encourage you to access your physician or mental health therapist or others who you find helpful, including online or other support through the Autistic community. If you are in need of immediate help, go to the Emergency Department at your local hospital. Other important resources include crisis lines and for some, text-based crisis lines may be particularly helpful due to being more accessible. Calling 911 is an important option if in urgent distress and in cases of emergency.
ACCESSING SUPPORT, AS NEEDED, IS IMPORTANT!
What is Autistic Burnout?
To survive and thrive, we often need to be able to conform to expectations, rules, and schedules that work for some but not for others. Autistic burnout can result from “chronic life stress and a mismatch of expectations and abilities without adequate supports.”1 (p. 133) Accommodations in education or in the workplace often are insufficient for allowing one to do things in a way that personally works; for instance, not being given permission to work from home where you can do the same work, but in a way that might be more accessible. Accordingly, burnout may emerge from continually trying to conform to behaviours in a defined, often neurotypical way. It is characterized by chronic exhaustion (typically lasting 3 months or more), loss of skills for daily functioning, and reduced tolerance to stimulus.1As SylvèreMoulanier speaks about in the AIDE Canada Toolkit introducing Autistic burnout (https://aidecanada.ca/learn/health/Autistic-burnout-toolkit), it is associated with prolonged stress. The concept is not yet widely discussed in the academic literature, but is increasingly being addressed. However, Autistic burnout is being talked about within the Autistic community. Recent research has suggested that Autistic burnout is different from workplace burnout or clinical depression, and may reflect physical and mental fatigue, and strained capacity to manage life and social demands and sensory input. Autistic burnout may be linked to a host of factors, including camouflaging (described later in this toolkit).
Higgins and colleagues offer “preliminary defined criteria for Autistic burnout”, as follows:
“Autistic burnout is a severely debilitating condition with onset preceded by fatigue from camouflaging or masking autistic traits, interpersonal interactions, an overload of cognitive input (defined as ‘thinking and mental processing’), a sensory environment unaccommodating to autistic sensitivities, and/or other additional stressors or changes. Onset and episodes of autistic burnout may interact with co-occurring physical and/or mental health conditions. The following criteria must be met:
Significant mental and physical exhaustion
Interpersonal withdrawal.
With one or more of the following:
Significant reduction in social, occupational, academic, behavioural, or other important areas of functioning.
Confusion, difficulties with executive function, and /or dissociative states.
Increased intensity of autistic traits and/or reduced capacity to camouflage/mask e.g., increased sensory sensitivity, repetitive or stimming behaviour, difficulty engaging or communicating with others.”2 (p2365)
Some Important Reflections…
Christina Devlin, BA (Hons), RSSW,asserted the following important points for consideration:
It is important to, “acknowledg[e] that Autistic burnout does not affect all Autistics equally/in the same ways or with the same causes. For example, my own experience of Autistic burnout is largely the product of ableism/systemic barriers and having to spend so much of my time and energy advocating for my access and inclusion, as well as sexist expectations…, all of which take an inordinate amount of executive functioning, time, and energy, especially after not sleeping and having to function on an unnatural schedule in opposition to my circadian rhythms. However, I don’t have to contend with racism or homo/transphobia on top of that and have to spend too much energy on worrying… because of the colour of my skin or presenting in a way that some find threatening, including having the ability to mask and pass for neurotypical in public. Not all Autistics have this privilege.”
Thanks to Ms Devlin for this insightful input, and for granting permission for this excerpt to be included in this toolkit.
What Causes Autistic Burnout?
Autistic burnout is described to have the following elements:
It often occurs during stressful life transitions or changes that occur throughout the life course, like puberty, early adulthood, and/or major milestones such as going to university, getting married or moving into parenthood. These changes create additional stress and strain on one’s coping resources.3
Gender may have a bearing on the onset of Autistic burnout. Social expectations on women and those socialized as women in terms of role expectations, can increase risk of burnout. Also, developmental processes including changes in puberty, menstrual cycles, moving to childbirth, or menopause may elevate risk of stress and burnout.3
Stigma and discrimination are important societal factors that can increase risk of Autistic burnout.3Autistic individuals likely have learned strategies to manage the challenges of stigma, dealing with emotions and navigating one’s sensory environment and/or sensory overload. But unexpected changes in routine or challenges at work or home may require new and different coping strategies. If the individual or those around them are unable to detect these challenges and/or constructively address them, the issues can become overwhelming and difficult.
Challenges with alexithymia (understanding and navigating emotions) particularly in unsupportive contexts, can add to burnout.2,4However, it is important here to recognize that even if one uses learning or coping techniques to understand, manage and navigate emotions, societal factors of exclusion, stigma and discrimination, are core issues. These areas of injustice cannot be addressed simply by increased coping strategies by an individual. Rather, societal and systemic change are needed
Constant masking or camouflaging can result in or heighten burnout. Many Autistic people make considerable effort to modify their behaviour to conform to conventions and demands of a non-Autistic-oriented environment. Masking or camouflaging is a phenomenon that is widespread amongst Autistic people, with many Autistic adults reporting that they consistently camouflage.5Camouflaging is often viewed as required to engage in education or jobs, and establish relationships in a non-Autistic environment. However, the cost of camouflaging can be substantial. Social camouflaging is associated with mental health challenges, and Autistic people consistently link their camouflaging to experiences of anxiety and depression.6
Unrealistic expectations and stigma can increase the risk of Autistic burnout. Having to navigate the personal and vocational spaces that are designed for non-Autistic people can lead some Autistic people to feel like they “should” behave in a certain way or be able to do certain things with the same ease as those who are not Autistic. Self-stigma is internalized shame and a negative attitude that an individual may take on about themselves. The individual may perceive that they do not belong and are not accepted in society because of who they are. A prolonged period of feeling that one is not meeting their own and others’ expectations can have negative impact on mental health.
Lack of or insufficient support from society contributes to Autistic burnout.3One’s need for support is sometimes dismissed especially among those whose presentation of Autism may be more subtle, for example, one who is performing well in school or employment. Professionals or others who have insufficient knowledge or understanding about Autism may lack sensitivity, and there may be a lack of community support for Autistic youth and adults. Autistic adults may be left to rely on family and friends for support, and in some cases, they may feel isolated. Family and friends can be invaluable sources of support. Connecting with the Autistic community, including online engagement, also can be an important source of support. Notably and of concern for Autistic adults, many of the existing supports currently available are geared towards children rather than adults.7
For more detail about Autistic burnout, see AIDE Canada’s Autistic Burnout Toolkit: https://aidecanada.ca/learn/health/Autistic-burnout-toolkit
Recognizing Autistic Burnout
There is substantial and helpful discussion about Autistic burnout on social media platforms by those who are affected by it4,7, and a growing literature base. It is important to understand what it is and how it relates to, or is distinct from, depression or occupational burnout.
Those affected have described chronic exhaustion, loss of skills and reduced tolerance to stimulus. The distress may present as a threat to one’s job, relationships, independence and overall health, and in more serious cases, may lead to suicidal thoughts and behaviours.2During periods of Autistic burnout, adults report feeling “more Autistic” and experience the loss of previously acquired skills such as self-care and speech, greater sensory sensitivities, and increased social communication difficulties.3The duration and frequency varies from person to person. It can be a one-off episode or it can occur intermittently for some, lasting all day or weeks, months or even years.2As noted earlier, such manifestations are noted to reflect an outward presentation or by-product of internal and external stressors, in this case, exacerbated by burnout from stressors becoming too great.
Autistic burnout shares some similarities with depression and occupational burnout. Researchers have reason to believe that despite its similarities to depression, Autistic burnout is a distinct experience.3 The main differences reported by those who have experienced Autistic burnout include the sensory sensitivity and the need to isolate in order to recover.2,4It can also lead to depression or heightened depression for some people,2,4and reportedly can lead to suicidal ideation when co-existing with other mental health conditions.4Accessing knowledgeable help and support thus is very important! In their recent study, Mantzalas et al. (2022) noted that “many individuals reported that burnout was the catalyst for their diagnosis of autism in adulthood, which gave them a new perspective for re-evaluating their lives. Diagnosis often led to improved self-awareness, self-care, self-esteem and confidence to self-advocacy, which had a resultant positive impact on the adults’ well-being.”4 (p. 59)It is important to note that Autistic burnout goes beyond the workday.
Some Strategies to Consider in Addressing Autistic Burnout
Moving forward from Autistic burnout is possible!Various strategies may be helpful. These strategies can be focused on the individual, as well as peers and the community and support network. This importantly includes employers, university/college instructors and administrators, Autism researchers, policy makers, businesses, etc. to address barriers and equity issues which put Autistic people at greater risk of burnout than non-Autistics.
Here are a few ideas…
Collective advocacy and activism at a societal level is urgently needed to reduce barriers, stigma and marginalization. While self-advocacy is currently necessary on an ongoing basis, it shouldn’t have to be the individual’s responsibility to constantly advocate for their right to access and inclusion. Collective activism is needed to help create societal change.
Engagement with others in the Autistic community has been described as very helpful, and in some cases, life-changing. It is important to share one’s experience and be understood and accepted, although social interactions take energy. Engaging with others who understand some of what you may be experiencing may help you feel supported, and communicating with other Autistics on social media may decrease social demands. Mantzalas and colleagues (2022) described favourable outcomes from, “finding the autistic community, connecting with others who shared their lived experiences, and making positive lifestyle and career changes to reduce stress and live more authentically.”4 (p. 59)Others may offer helpful strategies, and you may have helpful ideas for others.
Seek help from your doctor or a mental health therapist yet Higgins and colleagues state that “routine treatments for depression, such as cognitive behaviour therapy and behavioural activation, may be contra-indicated within autistic burnout, even though these conditions may co-exist”.2 (p. 2366)
Advance knowledge about Autistic burnout, self-awareness and self-advocacy. There is an increasing number of information sources and resources that help us understand the experience.
Learn to recognize the signs and symptoms of burnout. In detecting these signs and symptoms, individuals may be more equipped to ask for help. Beneath this recognition and movement forward, it is important to recognize that many Autistics may not have been able to develop this skill as fully as they could have, due to society’s denial or discounting of their natural needs and expression of self. Conversely, one’s needs truly must be recognized and respected.
Individuals may need to be supported to advocate for themselves and their needs. Strategies could include accessing accommodations and/or changes in work responsibilities that better take into consideration one’s talents, strengths and challenges.
Set boundaries which may involve getting support in how to determine needed boundaries and how to integrate them.
Learn when to ask for help or support from others. This may include getting support at the workplace or in post-secondary education, and connecting with supportive others.
Attending to one’s needs is important. Self-care must be supported and a priority.
If helpful, set up a space in your home for calming.
Consider what are helpful strategies and practice them in times of calmness. Practicing these approaches may assist in applying them, when needed.
If insufficient sleep or rest is a challenge, work to develop healthy sleep patterns. Grappling with challenges is made easier when one is well-rested. Here is a video on the AIDE Canada website focused on means to improve sleep: https://aidecanada.ca/learn/health/developing-healthy-sleep-habits-animated. Seeking help for this challenge may be important.
Consider sensory issues that may be challenging. Reducing stress in your environment or seeking strategies to handle stress or sensory dysregulation may make it easier to deal with daily challenges. For more information related to possible sensory dysregulation, see the following AIDE Canada toolkit: https://aidecanada.ca/learn/sensory-regulation/sensory-processing-differences-toolkit
Allow time and space for interests, and if helpful, self-stimulating behaviours or “stimming”. It is important to consider what contributes sensory and emotional self-regulation and well-being. Such engagement may help one cope during overwhelming and stressful situations.3However, it’s also important to acknowledge that stimming in public can come with risks. For instance, some with various additional marginalized identities (e.g., race/ethnicity, gender identity, etc.) may be at greater risk in public spaces. This point amplifies the need for equity, diversity, inclusion and de-colonization advancement at a broader societal level.
It is important to support an individual to have reasonable expectations for themselves, including recognizing and accepting one’s strengths and challenges. Accepting oneself is a complex yet important process. As one acknowledges their ‘goodness’ including their unique capabilities and challenges, they can develop and maximize strengths to improve their confidence and self-esteem. Identifying and working on challenges can include understanding ‘triggers’, holding oneself accountable for one’s actions, and helping others understand what their triggers are, and how to navigate those. Embracing one’s identities (e.g., race, gender, sexuality), and how they interact with Autistic identity, can help develop resilience and resist burnout over time.8
A strategy has been described as ‘doing less to reserve energy for what matters most’. Energy management is important,3as is finding strategies for managing demands and avoiding overload.4The concept of ‘spoon theory’ (https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) has been advanced to conceptualize Autistic individuals’ experience of limited energy and means to manage that energy.4In this approach, the individual is viewed to have a finite amount of energy and coping resources such that they start their day with a certain number of ‘spoons’. Every task or activity will require a certain number of spoons, and when those ‘spoons’ run low, the individual will need to step back, rest or engage in self-care to replenish their ‘spoons’ before they exhaust themselves. This calls for prioritizing and discovering for oneself – what matters to you.4
Social support, advocacy and education are important! It is crucial to recognize and increase awareness about the potential danger or risk to Autistic people in maskingAutistic traits to help ‘fit in’. Research has found that masking is associated with increased depression, anxiety, and other mental health issues.3This calls for greater acceptance and support from society. It is hoped that changing public perceptions, expectations and attitudes will nurture support and lessen the perception of need for Autistic people to mask.
There may be underlying health or mental health issues,9,10,11some of which may be contributing to Autistic burnout. Proactively addressing those challenges is critical and may be helpful in supporting Autistic burnout recovery. Community, health and mental health supports are important. See examples of some online resources below. Your local Autism society or association may have helpful resources. Finding a physician or mental health therapist who understands challenges related to Autism and Autistic burnout would be helpful. Importantly, refer to Autistic-led organizations and social media groups and pages for resources, including resources for community belonging.
It is important to educate others in our communities – therapists, practitioners, family, friends - about Autistic burnout and its causes, so they can recognize key elements, be supportive, and work to prevent the causes of Autistic burnout. More support services are needed.5,7These efforts can be a part of the important collective effort to dismantle structural factors like stigma, discrimination, inequality, poverty, racism, and inaccessibility.
Universal designrefers to making things “more universally accessible as much as possible, so people do not have to constantly request for individual accommodations. Ideally, environments should be built for all kinds of people from the start, and then adjustments should only be needed for any remaining gaps or barriers.”12 (p. 112)
Prior to facing a crisis, it may be helpful to write out key information to share with professionals/supporters to give them vital information to be helpful. This information could include a brief description of information such as: what overwhelms you, symptoms, triggers, what helps, what brings calm/relief, a list of your medications, other relevant information, etc. You could take this information to appointments and emergency care visits, to decrease missing vital information or needing to go through the same details repeatedly, especially if such interaction is (or would be) challenging. Consistently sharing key information as fully as possible may be helpful as you access support. Some professional recipients of this information may need education about the benefits of such strategies, and how to respond to this input in non-ableist ways, and thus the importance of welcoming, respecting and using this form of information.
If you feel overwhelmed or need help, reach out. If your need is urgent, call crisis lines, 911 or immediately go to the Emergency Department at your nearest hospital.
Know that you’re not alone, and there is help. Reach out and seek support. Drs. Jonathan Weiss and Yona Lunsky and colleagues have developed a helpful online resource entitled, “Mental Health Literacy Guide for Autism”: https://www.yorku.ca/health/lab/ddmh/am-help/. This offers useful information and strategies related to Autistic mental health. We suggest referring to this resource. In this resource, the authors importantly state, “asking for help is considered a sign of strength and maturity, and a sign of heightened self-awareness.”12 (p. 112)
Your local Autism Society likely has helpful resource and support information. Mental health information is on the AIDE Canada website and other sources, as indicated in the reference section of this toolkit.
Steps Forward
There is more we can do to prevent Autistic burnout, and support those who are experiencing Autistic burnout.For example, more research is needed that better understands the role and impact of masking or suppression of Autistic ways of being as contributing to Autistic burnout. Research is also needed to further understand and measure Autistic burnout and validate assessment to identify mental health issues like depression in Autistic individuals.
The call for societal change to reduce stigma and discrimination toward Autistic people is urgent. This requires working towards greater acceptance of neurodivergence and accommodation in society. Such steps forward are vital in getting at the roots of Autistic burnout prevention. In their commentary, Mantzalas and colleagues state, “Positive representation of neurodivergent conditions can help combat the direct and indirect psycho-emotional disablement experienced by Autistic people by reframing stereotypical views about Autism and emphasizing participation, self-acceptance, self-advocacy, and inclusion.”3 (p. 977)
Some Online Resources
AIDE Canada: https://aidecanada.ca/
Canadian Mental Health Association: https://cmha.ca/
Do-Live-Well: http://dolivewell.ca/#sthash.ggHZSxv2.dpbs
Mental Autism Health Literacy Project (AM-HeLP): https://www.yorku.ca/health/lab/ddmh/am-help/
Sinneave Family Foundation: https://sinneavefoundation.org/
Also, please contact your local Autism Society/Association to find out about resources available in your community.
REFERENCES
1.Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining Autistic burnout. Autism in Adulthood, 2(2), 132–143. https://doi.org/10.1089/aut.2019.0079
2. Higgins, J. M., Arnold, S. R., Weise, J., Pellicano, E., & Trollor, J. N. (2021). Defining Autistic burnout through experts by lived experience: Grounded delphi method investigating #AutisticBurnout. Autism, 25(8), 2356–2369. https://doi.org/10.1177/13623613211019858
3.Mantzalas, J., Richdale, A. L., & Dissanayake, C. (2022). A conceptual model of risk and protective factors for Autistic burnout. Autism Research. https://doi.org/10.1002/aur.2722
4. Mantzalas, J., Richdale, A.L., Adikari, A., Lowe, J., and Dissanayake, C. (2022). What is Autistic burnout? A thematic analysis of posts on two online platforms. Autism in Adulthood, 4(1), 52-65. https://doi.org/10.1089/aut.2021.0021
5. Cage, E., & Troxell-Whitman, Z. (2019). Understanding the reasons, contexts and costs of camouflaging for Autistic adults. Journal of Autism and Developmental Disorders, 49,1899–1911
6. Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with Autism spectrum conditions: An investigation of the female Autism phenotype. Journal of Autism and Developmental Disorders,46(10), 3281–3294.
7.Camm-Crosbie, L., Bradley, L., Shaw, R., Baron-Cohen, S., & Cassidy, S. (2019). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health diffi-culties, self-injury and suicidality. Autism, 23(6), 1431-1441.
8.Ghanouni, P., Quirke, S. Resilience and Coping Strategies in Adults with Autism Spectrum Disorder. Journal of Autism Development Disorders(2022). https://doi.org/10.1007/s10803-022-05436-y
9Bauman, M.L. (2010). Medical comorbidities in Autism: Challenges to diagnosis and treatment. Neurotherapeutics: The Journal of the American Society of Experimental Neurotherapeutics, 9(3), 320-327.
10. Frye, R.E., & Rossignot, D.A. (2016). Identification and treatment of Pathophysiological comorbidities of Autism Spectrum Disorder to Achieve Optimal Outcomes. Clinical medical insights. Pediatrics, 10,43-56.
11.Matson, J.L. & Cervantes, P.E. (2014). Commonly studied comorbid psychopathologies among persons with Autism spectrum disorder. Research in Developmental Disabilities, 25(5), 952-962.
12.Weiss, J., & Lunsky, Y. et al. Mental Health Literacy Guide for Autism: https://www.yorku.ca/health/lab/ddmh/am-help/, accessed July 22, 2022.
