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Autistic Burnout

“Autistic burnout” has been used for a long time by members of the autistic community to describe the negative impact of living in a world set-up for neurotypical people. Although it has been discussed within the autistic community for a long time, research into autistic burnout is relatively new (Mantzalas et al., 2022a). The first research study of burnout from the perspective of autistic adults was in 2020 (!!), with the second in 2021. The two studies had differing opinions on what defined autistic burnout, but both agreed that it is a pervasive condition preceded by exhaustion brought on by chronic life stress (Higgins et al., 2021; Raymaker et al., 2020).  A video providing an overview of this information can be found at the bottom of this page. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Factors that Lead to Burnout

One autistic person identified ‘‘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’’ (from Raymaker et al., 2020).

 

Autistic adults have identified several factors as contributing to burnout, including masking, significant life changes, stressful events, alexithymia (difficulty understanding their own emotions), barriers to support, stigma, and discrimination against autistic people (Mantzalas et al., 2022a; Raymaker et al., 2020). Masking is deemed to be particularly draining but is felt necessary to avoid discrimination, bullying, and loss of opportunities due to being ‘unfiltered’ (Higgins et al., 2021).

 

A key precondition for burnout, exhaustion, was characterized as a ‘video game energy bar’ by one autistic adult (Higgins et al., 2021), which can be drained by:

 

  • A lack of understanding of autism, which can result in negative experiences with healthcare, employment, education, and family. The lack of understanding can also impact diagnosis, with many autistic individuals being diagnosed late or missed entirely. Additionally, a lack of understanding of autism can also result in ableist expectations to conform, with unreasonable expectations placed on the autistic person, without accommodations or support

 

  • Disempowerment can contribute to burnout by co-workers making autistic folk think that they are doing the wrong thing at work when they are in fact doing their job (which can also present as gaslighting)

 

  • Masking, which is often employed to avoid negative consequences of stereotypes and discrimination, while facilitating job opportunities and social interactions can contribute to burnout.  Some autistic folks also report internalizing stigma, which negatively impacts identity and confidence to advocate for self. Long term masking also contributes to identity confusion and feelings of not being believed when asking for support (i.e., ‘you don’t look autistic’)

 

  • Feelings of being overwhelmed and experiencing sensory overload also contribute to burnout. Autistic individuals who experience alexithymia and challenges with interception may have difficulty noticing early signs of burnout and may rely on people around them to cue them into the warning signs

 

  • Work demands, such as long hours, tight deadlines, and no support to plan their day and work at their own pace can increase the likelihood of burnout

 

  • Other contributing factors include misunderstandings during social interactions and communication with others, unexpected changes, and being overloaded by demands, where demands exceed capacity
     

(Summarized from Arnold et al., 2023; Higgins et al., 2021; Mantzalas et al., 2022b).

 

Common Features of Autistic Burnout

 

The impacts of autistic burnout can vary from person to person, but can include:

 

  • Impairments in cognitive function, including confusion, dissociation, and concentration challenges, as well as impairments in executive function (difficulty planning or organizing).
     

  • Withdrawing from (i) social relationships, as many people report a loss of trust in others and prefer self-isolation and (ii) work responsibilities, often taking medical or stress leaves

 

  • Increased sensory sensitivities, as many folks may be more sensitive to sensory stimuli and less able to tune them out. This may result in more episodes of overstimulation and dysregulation and reduced engagement in social situations or other events where the person may fear being overstimulated

 

  • Aggregation of co-occurring conditions, including insomnia, anxiety, and GI problems. Thoughts of suicide and suicidal ideation may also increase during burnout.

 

  • Reduced ability to emotionally regulate, which can manifest as increased dysregulation (excessive crying, angry, aggressive, etc) or may cause emotional numbness, in which individuals shutdown, become unresponsive, or dissociate

 

  • Loss of previously acquired skills, such that skills were present before burnout but were lost during burnout, with some people reporting that the skill did not return.  Many areas of life have been identified as being impacted by burnout, including thinking, remembering, creating, and executing plans, performing activities of daily living and instrumental activities of daily living, using vocational skills in school or work, socializing, regulating emotions, and living independently. Difficulty with speech production and understanding have also been reported.

 

  • Impacts on self-image; comparisons to neurotypical experience (“it reinforced that I will never be able to function at the same level as someone without [autism]”)

 

  • Other features include not having energy to engage in preferred activities, an increase in autistic traits, and reduced ability to mask

 

(Summarized from Higgins et al., 2021; Mantzalas et al., 2022b; Phung et al., 2021; Raymaker et al., 2020).

 

Generally thought of as a negative experience, there were autistic individuals who felt their experience of burnout was a blessing in disguise. Being burnt-out led many folks to seek why they were feeling the way they were and, in that search, received their diagnosis. With the diagnosis, self-awareness and self-acceptance came, allowing for validation of why they felt different throughout their life (Mantzalas et al., 2022b).

 

Factors to Boost Recovery from Burnout

 

Recovery from burnout can be a slow process, yet there are factors that can help improve feelings of burnout:

 

  • Stimming, which can be physical (rocking, fidgeting, walking), visual (starting at a repetitively moving object), tactile (rubbing fabrics), vocal (repeating phrases, humming), or olfactory (smelling things). Stimming is an important method to help with emotional and sensory regulation that can help manage stress that can accumulate and contribute to, or worsen, burnout

 

  • Engaging in topics in which one is very interested in or is very knowledgeable in can provide pleasure, familiarity, and calming influence during times of stress and can help facilitate self-identity, emotional regulation, and self-efficacy. During times of burnout, it may be more difficult to engage in interests if one lacks the energy to engage in them, which can exacerbate feelings of burnout.

 

  • Build new knowledge of the self, including recognizing signs that impact the buildup to burnout. Individuals with alexithymia (difficulty recognizing one’s emotions) and challenges with interception (recognizing internal body signals) may contribute to the experience of burnout and developing self-care plans that cues one into their personal experiences of emotion and body signals can help one recognize they are experiencing stress. In this, one can also visit a therapist to help learn emotion regulation strategies and manage co-occurring mental health conditions

 

  • Joining autistic community groups who have lived experience of autism can have a positive impact on wellbeing and advocacy. One can search for groups using autism-specific hashtags (e.g., #ActuallyAutistic) on social media, join self-advocacy groups (ASAN – Autism Self-Advocacy Network), or local groups (e.g., Autism Edmonton) to help promote acceptance and lessen impacts of stigma and discrimination in an ableist society

 

  • Social support: having connections with others who understand autistic peoples’ traits, sensory needs, and communication preferences can support self-esteem, independence, and wellbeing. Also important is spending time with loved pets

 

  • Engaging in routine to ensuring one is eating regularly and maintaining a sleep schedule to restore their body

 

  • Having space to recover and replenish energy, which may look like withdrawing from social, work, and study responsibilities to rest and recover and limit further energy drain. Important is also finding time to be ‘unfiltered’ or unmasked is also energizing

 

  • Engaging in unique recovery strategies, such as finding employment that meets one’s specific needs (e.g., nightshift job with minimal social contacts, or going for walks in nature)

 

(Summarized from Arnold et al., 2023; Higgins et al., 2021; Mantzalas et al., 2022b; Raymaker et al., 2020).

 

Timeline and Frequency of Burnout

 

There is no clear timeline for an episode of burnout, which can range from days, weeks, or months, with some autistic adults reporting feeling burnt-out for years (Higgins et al., 2021; Mantzalas et al., 2022b). The number of burnout’s experienced by autistic individuals ranges from one-off (more infrequent) to several or regular experiences. Others report chronic burnout that they are still recovering from (Higgins et al., 2021; Mantzalas et al., 2022b). First experiences of burnout can occur during adolescence and may recur into adulthood. Many autistic individuals identified burnout as having a lasting ripple effect throughout their life, in that burnout can impact the desire and ability to engage in educational and employment opportunities, can result in relationship challenges (due to challenges with emotional regulation, cognitive ability, and speech), amongst others (Mantzalas et al., 2022b).

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References

Arnold, S. R., Higgins, J. M., Weise, J., Desai, A., Pellicano, E., & Trollor, J. N. (2023). Confirming the nature of autistic burnout. Autism, 0(0). https://doi.org/10.1177/13623613221147410

 

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

 

Mantzalas, J., Richdale, A. L., Adikari, A., Lowe, J., & Dissanayake, C. (2022b). What is autistic burnout? A thematic analysis of posts on two online platforms. Autism in Adulthood : Challenges and Management, 4(1), 52–65. https://doi.org/10.1089/aut.2021.0021

 

Mantzalas, J., Richdale, A. L., & Dissanayake, C. (2022a). A conceptual model of risk and protective factors for autistic burnout. Autism Research, 15(6), 976–987. https://doi.org/10.1002/aur.2722

 

Phung J., Penner M., Pirlot C., Welch C. (2021). What I wish you knew: Insights on burnout, inertia, meltdown, and shutdown from autistic youth. Frontiers in Psychology, 12, Article 4981. https://doi.org/10.3389/fpsyg.2021.741421

 

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: Challenges and Management, 2(2), 132–143. https://doi.org/10.1089/aut.2019.0079

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