The Importance of recovery and self-care for autistic adults

The interview for this article was conducted with Dana Andersen, an autistic advocate who has her own YouTube channel where she shares her experiences about being an autistic adult navigating this world that mainly accommodates neurotypical needs. I would like to thank you Dana for sharing your perspectives and experiences with me. Dana suggested the topic: recovery and self-care for our interview, at the end of the discussion, Dana and I agreed that recovery and self-care for autistic adults are essential. 

I am not saying that everything we discussed is the ultimate truth as everyone is different and therefore will have differing opinions and experiences. I will be sharing the conversation we had as well as relevant research on this topic. I hope you enjoy the article and once again please share what has helped you, in the comments or if you would like to remain anonymous, please email me and I can do a follow-up post with that feedback. 

What is recovery?

I asked Dana what recovery means to her and she said “for me it’s unwanted but the necessary time that follows anything stressful or overwhelming. It also means feeling guilty and ashamed for the need to recover from seemingly everything, especially things I’ve enjoyed.”

This is one of the reasons why I think it is important to discuss these topics, the more awareness we create and the more we destigmatize these types of aspects of being neurodivergent, hopefully, the more autistic adults can start to feel less guilty or ashamed for needing to do to something as important as taking time to rest and recover. I said to Dana that this is another societal problem, not an autistic one. 

Due to the fact that this world does not fully accommodate or understand autistic needs yet, it leads to autistic people having these types of feeling such as guilt or shame. In an ideal world, autistic people would be encouraged to and supported in taking this time for themselves.

What is burnout and what causes it?

Burnout has been described as experiencing mental, physical, and emotional exhaustion. Burnout is serious and can be debilitating for some. According to Spectrum News: “Some autistic people experience it as an overwhelming sense of physical exhaustion. Few studies have formally investigated autistic burnout. Autism researchers have only become aware of burnout as a phenomenon over the past five years or so”  (DeWeerdt, 2021).

“Burnout may manifest as intense anxiety or contribute to depression or suicidal behavior.” Some autistic people have described burnout that is so severe its effects have persisted for years. Burnout may occur more frequently and be more difficult to recover from as people get older” (DeWeerdt, 2021).

“It can also result from sensory overstimulation, such as a noisy bus commute; executive function demands such as having to juggle too many tasks at once; or stress associated with change” (DeWeerdt, 2021).

In the previous blog article I discussed masking and its effects, masking is one of the causes of burnout. A recent study indicates:  “for many autistic people, camouflaging is experienced as an obligation, rather than a choice” (Mandy, 2019).

This feeling of needing to mask in order to accommodate others (mainly neurotypicals) has effects on an individual’s overall well-being. 

Below is a description of what Dana explained as things that are stressful or overwhelming:

“Major ones are work and appointments of any type, even when settled into a job every day, feels just as overwhelming as the first and appointments bring a lot of stress about getting there on time what may be expected of me what I’m supposed to take and so on.”

“Meeting new people, family gatherings, days out, and seeing friends are all so stressful and overwhelming despite being enjoyable and things. I actively want to do things and things involving having to make choices like shopping or going out for food also feel like a lot for me.”

Research on the topic

In an interesting study, researchers asked autistic adults to help them to define autistic burnout. This is a positive sign as people who are conducting the research are actually asking the people who it concerns and are asking for the autistic perspective in order to define a term that relates to autistic adults.

I think that the definition of all terms relating to autism in general including the current “diagnostic process/system” should be approached in the same way. As a lot of that terminology is outdated and offensive to neurodiverse people. In this study autistic adults were viewed as the experts and their lived experience helped to form the definition.  

“Autistic burnout is caused by the stress of masking and living in an unaccommodating neurotypical world. Autistic adults who had experienced autistic burnout were considered experts on the topic, in the co-production of this definition. The definition describes autistic burnout as a condition involving exhaustion, withdrawal, problems with thinking, reduced daily living skills (Higgins et al., 2021).

Therefore, looking at the research and Dana’s input, some of the reasons leading to burnout are:

• Stressful environments
• Masking
• Living in a world that mainly accommodates neurotypical needs
• Anxiety

This further emphasizes the need to spread awareness and information about this. 

What do you usually do during recovery time?

According to spectrum news, some autistic adults recover from burnout by “removing themselves from the situation that triggered the burnout” (DeWeerdt, 2021). I do think this is quite a limited explanation as everyone is different and there are various and complex reasons for burnout, so just removing oneself from the situation is not the only recovery option, let’s see what Dana shared about recovery time:

“My recovery time tends to involve a lot of indulging in my special interests many of which for me are TV shows, so I watch them, read FanFiction of them, and generally immerse myself in whatever world I am fixating on at the time.

“I can end up really running away with that and spending too much time and energy on it, so I’ve learned to intersperse it was going for walks in nature spending extra time with my cats, and baking / cooking my favorite things” 

“I try to just keep everything very low pressure and whatever I’m feeling while still maintaining my base routine of yoga and house chores in the morning so I feel somewhat productive still”.

Further research

According to a study conducted in 2020 about defining autistic burnout participants described the reasons for burnout:

• Life stressors added to the cumulative load they experienced
• Barriers to support created an inability to obtain relief from the load
• These pressures caused expectations to outweigh abilities resulting in autistic burnout 
• A lack of empathy from neurotypical people

(Raymaker et al., 2020)

Autistic adults described negative impacts on their health, capacity for independent living, and quality of life, including suicidal behavior (Raymaker et al., 2020).

The following came up in terms of recovery:

• Described acceptance and social support, 
• Time off/reduced expectations
• Doing things in an autistic way/unmasking 

(Raymaker et al., 2020)

The authors concluded: “better understanding autistic burnout could lead to ways to recognize, relieve, or prevent it, including highlighting the potential dangers of teaching autistic people to mask or camouflage their autistic traits and including burnout education in suicide prevention programs. These findings highlight the need to reduce discrimination and stigma related to autism” (Raymaker et al., 2020).

This is what I was talking about at the beginning of the article, we need to be talking about this, we need to be encouraging people and supporting people who need to take this necessary time. Furthermore, there is more information needed to warn against harmful approaches to education and therapy that try to suppress or change autistic traits. 

Prevention and recovery time

Here are some ideas to try to prevent or prolong the time between burnout periods:

• Practicing self-care (will discuss later on in the article).
• Take time for yourself away from triggers or stressors.

-This may require an off day during the week, putting aside time when you can, planning scheduled recovery/rest time (I can’t take a day off this week, so I am going to rest over the weekend and on Wednesday evening). *Burnouts are not planned, but making planned rest time throughout the week may help with preventing burnout.

• Engage in special interests.
• Keeping a journal (tracking triggers, stressors, feelings, and what helps during recovery time).
• Spend time in nature, away from technology.
• Spend time with pets.
• Do something that is relaxing for you regularly and include it in your routine.
• Using strategies to lessen stressors in the work/social environments (accommodations, to be discussed below).

What is self-care?

This is Dana’s experience of self-care:

“I suppose my recovery activities are very similar to what most would consider self-care, I more so see self-care as the things I do to support my future self. I wouldn’t clean the bathroom for example while I’m trying to recover, but I will do it when I\’m having a good day, and consider it to be self-care, because I know I’ll feel a lot better while trying to recover or when having a bad day if I’m walking into a clean and fresh smelling bathroom.”

“So a lot of what I consider to be self-care is cleaning and tidying, getting ingredients in, or pre-making meals before any events or appointments. The self-care we see online like having a bubble bath or using a face mask are things I’d never usually do and don’t enjoy, so the message of self-care I choose to take is that I’m setting up the care I’m going to need.”

So from my perspective self-care for Dana is looking after yourself and preparing for the time when you may need to recover. It is most likely different for everyone because everyone is different. Whatever it is to you, it is important to try to exercise it when you can. 

How often do you practice self-care?

“I  found for me this type of self-care is needed daily in smaller ways. Having it as a part of my routine also is a really useful assistant to starting my day,” says Dana

 I asked Dana if she thinks that other autistic adults practice self-care regularly and she said:

“I think most of us practice self-care in some way or another, but it can look so different to the ways that neurotypicals practice and talk about it that we’re not always aware that it is what we’re doing.”

“I do think it is necessary others know how important self-care is because it really helped me to improve my quality of life in a way that’s independent and catered purely to me, and of course with us all being so different, what I do is unlikely to work for many people, but being aware of how other people, especially autistic people utilize self-care, definitely gave me more resources to be able to figure out what works for me.”

Should employers know about autistic burnout?

I asked Dana if she thinks employers should be informed that autistic employees need recovery time and it may be during the week?

Dana’s response was: “I think it’s challenging to know which things and how much employers should be told about autistic employees, both because we can have such different support and accommodation needs, but also because although the awareness could certainly help some autistic employees, I feel it could also lead to more ableism in the employment process.”

“Although the awareness would of course be spread with the idea we’d receive support and needed accommodations, I feel it’s more likely I’d be considered even more ‘unemployable’ by many employers and companies.”

“I think a minority of employers are already aware of things such as this, and those who are aware tend to be incredibly understanding and accommodating, but in my opinion, many of those who are not yet aware would not use the knowledge to help their autistic employees, nor to employ more.”

What are accommodations?

When Dana and I  were discussing the causes of burnout I asked Dana “do you put anything in place to help you when you are feeling stressed?”

Dana’s response was: “I have breathing exercises I have learned to help prevent meltdowns and panic attacks at the moment and I feel and take around with me to help such as flake armor earbuds to help in noisy places and a small tangle teezer I can fit in within my pocket.”

Do these tools help?

“They definitely make things manageable and I’m hoping to find things that help more as I am trying things out it’s only been the last 6-months so then I’ve been accepting of accommodations like these in my life I previously thought I was better off just dealing with it so I’m still very much experimenting with one actually works and helps,” says Dana.

In the previous blog article, I looked at the workplace, we discussed some ideas to help with stress revolving around office environments and interviews. I found a study that showed some successful workplace strategies for autistic adults which included:

• Minimizing distractions, reducing noise
• Discussing and including predictable job duties
• Environmental considerations related to using technology could play an important role in improving performance and work experience
• Employers’ and co-workers’ support is an important aspect that contributes to a positive work environment

(Khalifa, Sharif, Sultan and Di Rezze, 2019)

When considering what may lead to burnout, actioning strategies/tools/accommodations may help in reducing stress, and having an action plan for when burnout is experienced might be helpful as well. As before I am asking the reader to please share (if they want to ) below some things that may have helped them to reduce stress, prevent burnout, and help during recovery time. 

Again for those who would prefer to remain anonymous but would like to share, please email me and I will share your thoughts anonymously. Thank you again, Dana Andersen, for being so open with me and sharing your experience of recovery and self-care, I appreciate your time and input.

DeWeerdt, S., 2021. Autistic burnout, explained. [online] Spectrum | Autism Research News. Available at: <https://www.spectrumnews.org/news/autistic-burnout-explained/> [Accessed 21 October 2021].

Higgins, J., Arnold, S., Weise, J., Pellicano, E. and Trollor, J., 2021. Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout. Autism, 25(8), pp.2356-2369.

Khalifa, G., Sharif, Z., Sultan, M. and Di Rezze, B., 2019. Workplace accommodations for adults with autism spectrum disorder: a scoping review. 42(9), pp.1316-1331.

Mandy, W., 2019. Social camouflaging in autism: Is it time to lose the mask?. Autism, 23(8), pp.1879-1881 https://journals.sagepub.com/doi/full/10.1177/1362361319878559 

Raymaker, D., Teo, A., Steckler, N., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S., Hunter, M., Joyce, A. and 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), pp.132-143.

https://www.liebertpub.com/doi/pdfplus/10.1089/aut.2019.0079