By Casey-Lee Flood, RN, HWNC-BC
Autistic burnout, despite being a widely experienced phenomenon among both adult Autistics and Autistic children, is not widely documented or referenced in the medical world. There is no official diagnosis or treatment for Autistic burnout at the time this article was written. Research is also in its infancy on the topic, which can leave Autistic individuals and their families searching for answers.
I am hoping this article will provide knowledge about what Autistic burnout is and why it happens. This blog will also list three ways to begin addressing a person’s Autistic burnout. I am purposely avoiding the words “cure,” “treat,” “heal,” and “get rid of” for a few reasons, mostly because being Autistic means that the risk of burnout will always be present – especially during times of change and/or increased stress.
There is no cure for Autistic burnout, nor is there a way to just get rid of it. There are ways to take care of ourselves during it, and there are ways to move forward. Some people can come out of a burnout episode and go back to their previous level of functioning, but for some people, there will be longer lasting effects.
Autistic Burnout vs. Occupational Burnout
Occupational burnout is defined by the World Health Organization as the following: "Burn-out is a syndrome conceptualized as resulting from chronic workplace stress that has not been successfully managed. It is characterized by three dimensions: feelings of energy depletion or exhaustion; increased mental distance from one’s job, or feelings of negativism or cynicism related to one's job; and reduced professional efficacy. Burn-out refers specifically to phenomena in the occupational context and should not be applied to describe experiences in other areas of life.”
Autistic burnout, on the other hand, was described in a 2020 study as “a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate support. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.”
Just by looking at the definitions, a few things should jump out at us. With occupational burnout, the effects are limited to our professional lives. The W.H.O. goes on to say that the occupational burnout symptoms of energy depletion and or exhaustion are from unmanaged work stress. This means it doesn’t account for other areas of a person’s life that are being negatively impacted.
With Autistic burnout, it is chronic life stress and expectations that do not match a person’s abilities that cause the negative effects on the person’s life. It focuses on Autistic characteristics, like worsened sensory experiences, physical and mental fatigue, and a loss of executive function. It wholly impacts the Autistic person’s quality of life.
What Can Trigger Autistic Burnout?
A big trigger that has been anecdotally reported throughout the community is significant life changes or transitions, such as getting a new caregiver after having the same one for years, starting a new job, or beginning college. It can also come from daily life, from being constantly expected to meet certain standards that are too taxing for an individual.
Lacking formal workplace accommodations or even accommodations in our personal relationships can also trigger Autistic burnout. For those of us that “pass” as allistic (non-Autistic) in society, we often can get overlooked when it comes to accommodations. Day-to-day lived experiences may be enough to trigger Autistic burnout if the expectations exceed the sustainable amount of effort an Autistic person might be able to maintain.
Autistics sometimes have difficulty identifying their feelings and also being able to tell if they are overloaded until they are experiencing severe physical or emotional discomfort. All of these contributing factors both from just being Autistic and from our surrounding environment can be triggers for Autistic burnout.
What Are Signs of Autistic Burnout?
Earlier, we spoke on some main qualifiers or indicators of Autistic burnout. Now, we will look at a few ways it is present in day-to-day life.
- Regression: This is characterized by decreasing function in daily life. This can mean changes in someone’s ability to complete daily living tasks, maintain hygiene, speak, or follow through on assigned tasks, and can correlate with increased meltdowns or decreased ability to manage emotions.
- Increased sensory sensitivity: Increased sensitivity, which can happen with any of our five senses, can often lead to agitation or withdrawal from certain situations that previously might have been enjoyable.
- Exhaustion: This can often be confused with depression or a depressive episode if someone has depression as well as being Autistic, but this is a pervasive feeling of emotional and physical exhaustion that no sleep will help improve or resolve.
- Special Interests are no longer interesting: Something that used to be a favorite topic for an Autistic person suddenly holds no joy, nor does it stimulate those same neurotransmitters it used to.
- Increased stimming: The need for more soothing activities and repetitive behaviors to try and achieve better emotional regulation.
- Emotional instability: This can present as increased meltdowns, shutdowns, worsened mental health conditions, or the development of new ones.
When we see the signs of Autistic burnout, it is easy to see how it can be mislabeled as a whole bunch of other things: depression, behavioral changes, and developmental disability (in younger children), and, unfairly, laziness. I have personally experienced this. You can also see how it is different from how neurotypicals might experience burnout based on the previous definition.
This is not to say that these other concerns could not be co-occurring, so please always ask for your medical providers’ guidance and make sure to be evaluated to rule out any other conditions/concerns. Now that we know what Autistic burnout can look like, let us get into how we can support the person.
How to Support Someone with Autistic Burnout
The biggest things a person going through Autistic burnout needs are validation and support. These are larger concepts, so I am going to give examples of tangible support methods. A little disclaimer: Any support needs to be applicable to the person and consented to by the individual. Never force anything on anyone because someone said or you feel that it would be good for them. If it is unwanted, it will just increase stress and burnout.
- Acceptance and support: Allow yourself or loved one the safe space to “unmask” and be themselves. Give them time to be with peers if possible or desired. Allow safe ways to stim and move energy safely with support. Accept that rest and sleep are essential to recovery. The exhaustion felt during Autistic burnout is unlike any other exhaustion. It can feel like it permeates every cell in the person’s body. Sleep is needed.
- Reduced workload and/or expectations: Understand that what can appear as lack of motivation or simply “not listening” can be a legitimate inability to do the task being asked of the person. Consider if any obligations or tasks can either be postponed or delegated, or provide support to the person while they complete the task.
- Formal accommodations: Whether they are needed at work, school, home, or in the community, formal accommodations not only can help the person in Autistic burnout, they also could prevent it from happening again. Formal accommodations can include working farther from the door in the office, being allowed to wear ear plugs, having fidget toys available, taking more frequent breaks, having different start and end times, enabling variations in dress code to decrease sensory irritation, etc. The world of accommodations is a beautiful place and can be done without diagnostic disclosure. See the ADA website for more information on how to request formal accommodations in a workplace.
Please know that this is a great place to start helping someone get past Autistic burnout. Remember, if big changes cannot be made in the person’s life at this time, do not discredit the power of small changes. Something simple as dimming the lights or having planned quiet time can really decrease stress and support a person and their quality of life.
If you feel like this blog is speaking to you or you identify with some or a lot of what you have read, please do not panic. All is not lost for you, and there are ways to feel better and get through Autistic burnout. Starting here with these three simple steps and discussing your experience with a trusted person, and preferably your medical provider, will put you in the right direction. There are also a lot of Autistic people out there writing content on this exact topic and their experiences. So, please feel free to look for Autistic creators or #actuallyautistic and #autistic on social media to see how others handle burnout. I encourage you to read content from a variety of creators as all people are unique.
My final thought I want to share with you is from my heart. I believe you, I see your capabilities, and I see the beauty in your vulnerability. Thank you for being you, and you are enough.