#AutBurnout

A little over a year ago a colleague of mine slipped a piece of paper across the table with a note scribbled on it, it read “you should write a book about autistic burnout”. I smiled and laughed to myself. I thought, me? Write a book? Yeah, right. Having been surrounded by people who seem to write and publish new books every year, I was a bit intimidated to think that anyone that I admired thought that I might be anywhere near ready to take on such a huge challenge — but the thought lingered. Could I actually write a book?

The meeting ended and I tucked the note away in my filing cabinet and went about my day. I found myself daydreaming as the weeks went on I got a little braver. I started to remember childhood journals filled with stories, essays that made teachers cry, long form blog posts, and extra long twitter threads. Maybe writing was a thing I wasn’t so bad at after all? I floated the idea past my husband and a few close friends. No one really knew what autistic burnout was, hell, I couldn’t even really articulate a full academically-sound definition, but everyone was excited about the prospect of me trying to write a book, even if it was on something they’d never really heard of before. Tentatively encouraged by their support, I felt that familiar spark of hyper focus start to ignite, so I began where I felt most at home, research.

I scoured the internet trying to look for every source I could trying to unpack and better define autistic burnout. Because burnout is such a unique and underrepresented topic, I broadened my scope to include perspectives shared by those with similar neurodivergences as well as those from disabled people who may or may not be neurodivergent themselves. I wanted to hear and read as much as I could about the topic from everyone, everywhere. I taped a note card outline to my office wall. I started to write. Things started out great. I wrote a few chapters. Suddenly nothing felt good enough. I was an imposter.

Maybe it’s from having years and years of formal education drilled into my head but I felt the desperate need for data. I had years and years of personal experience (and anecdotes from others as well) but a loud voice inside kept telling me this couldn’t be just another memoir…no one wants to read my memoir! So as I combed Google for hours, hoping things had improved since my initial encounters with the topic a few years earlier, it was shocking to learn that there weren’t that many more resources available today than there had been when I was in university. While not the first to discuss the topic, blog posts from Musings of an Aspie and Judy Endow were starting to become more widely shared. I also found a YouTube series called Ask an Autistic, created by Amythest Schaber, which discussed burnout and many other topics related to disability and autism in a very approachable way.

Despite these invaluable resources circulating with personal accounts of individuals experiences, there was an astounding lack of awareness or even discussion dedicated to the experiences and impact of burnout in academic and non-autistic/disabled professional circles. When information is (or perceived to be) discussed in primarily in small, online pockets, access and resource sharability is a huge issue. Most of my queries resulted in supports almost entirely related to work-life balance and coping with the abstractly-defined concept of “stress”, with very little connection to disabled life.

Recently, Autism Womem’s Network shared this wonderful infographic summarizing some of the more commonly shared characteristics of autistic burnout on their social media platforms.

IMG_0057
Descriptve Text from AWN: What is Autistic Burnout?
a guide from Autism Women’s Network
Signs:
• Lack of motivation (hard to care about goals when everyday life is overwhelming)
• Loss of executive functioning abilities (decision-making, organization, etc.)
• Difficulty with self-care
• Easier to reach overload or meltdown
• Loss of speech, selective mutism
• Lethargy, exhaustion
• Illness, digestive issues
• Memory loss
• Inability to maintain masks or use social skills
• Overall seeming “more autistic” or stereotypical
• May have period of high energy before collapse
Causes:
• Passing as neurotypical / suppressing autistic traits
• Doing ‘too much’, too much stress
• Aging: needing more downtime, having less energy
• Changes, good or bad (relationships, jobs, living arrangements, belongings, environment, routines…)
• Sleep deprivation, poor nutrition, dehydration
• Illness
• Sensory or emotional overload
Strategies:
• Time
• Scheduling breaks, managing spoons
• Leave of absence
• Stimming, sensory diet
• Exercise
• Massage
• Reminders and supports
• Routines
• Better environment/job/etc.
• Boundaries, saying ‘no’
• Dropping the mask/façade
• Solitude
• Absolute quiet
• Creative projects, passions, special interests
• Paying attention to reactions and your body
Sources:
“Autistic Burnout – Are You Going Through Burnout?” Anonymously Autistic.
Endow, Judy. “Autistic Burnout and Aging.” Ollibean.
“Help! I seem to be getting more autistic!” Mel Baggs.
Kim, Cynthia. “Autistic Regression and Fluid Adaptation.” Musings of an Aspie.
Schaber, Amythest. “Ask an Autistic #3 – What is Autistic Burnout?”
Thanks to Lindsey Allen, AWN Nebraska, for compiling this guide ©Autism Women’s Network 2017
**Please note: it was brought to AWN’s attention that the source credit for “Help! I seem to be getting more autistic!” belongs to Mel Baggs and not the American Asperger’s Association. We made the text correction on this status, and we will be updating the graphic as well. Thank you.

 

After talking with a few of my friends and colleagues, I quickly realized that I had to make a choice. I could write book directed at academia and non-autistic/disabled professionals (not that disabled academics/professionals don’t also exist of course!) or I could create space and perhaps eventually write a book by and for autistic and disabled people about burnout. I chose the latter, put the book on hold, and decided to take a different approach. I wanted to create a space for the community and discussion I felt was so desperately lacking around the topic. So I did a bit of research, revamped my website, and started hosting a weekly twitter chat called #AutBurnout, with topics based in part on the outline I already had written for the book, and partly on whatever I happened to be interested in at the time. The chat grew steadily, with regular participants and new folks stopping by every week. I was so happy it was gaining traction and conversations and about autistic burnout were starting to be shared.

But, looking back now I realize I was avoiding some pretty big red flags and ignoring many of the earliest warning signs my own impending burnout. My sleep schedule, which has never bern great, became completely unmanageable and functioning on three hours or less became the norm. I spent most hours outside of work laying on my couch, avoiding text messages, and refreshing my Twitter feed without really processing any updates. Slowly the amount of food and clothing that I could tolerate became limited to the same two or three outfits and meals in quick rotation (mostly prepared foods, ice cream, and crushed ice). *My friendly neighborhood Taco Bell staff now know my custom order by heart. The list goes on…

Having experienced several longer periods of autistic burnout previously, you’d think that I would have become adept at prevention, however in the moment it’s easier said than done. As the weeks turned into months, life offline began to get more complicated, personally and professionally. I began to strain against supports that no longer seemed to fit. I needed space and time to create something new, knowing getting out of an established routine was going to be really difficult.  As a disabled person with chronic health issues, hosting a weekly anything can be a challenge, so I made a concerted effort to be as upfront as possible when my situation changed, including when the chat moved from it’s regularly scheduled time to it’s current hiatus.

Discontinuing the chat was not an easy decision, in fact the routine and getting to talk with everyone was one of the most positive parts of my week, but my support needs offline had to become my top priority. However, I feel better knowing that for now the hashtag still lives on in the Twittersphere even without a hosted chat, and that people are still using it to share comments and resources related to autistic burnout. While I do plan on returning to the chat or creating a similar community space around the topic in the future, #AutBurnout will also exist for the foreseeable future.

As for me, I am slowly working through things offline, recovering from autistic burnout, adding a few more pages to the book along the way.

how to manage your life

What does it mean really mean for someone to be considered “productive”? For many people, particularly disabled people, determination of our ability to be productive often comes in the form questions centered around our ability to work: Do you work? Can you work? How do you work? How long have you been working? How long haven’t you been working? Can you show us your work? Why aren’t you working? Why can’t you do ______ in ______ way? Experiences like these can be frustrating, feel invasive, and can even impact our ability to receive needed assistance if we are unable to work in traditional employment settings or need an individualized/flexible schedule.

While employment may not be the end goal for everyone — continuously creating, adapting, and revising productivity and organizational systems is a familiar experience echoed by many autistic, neurodivergent, and disabled people, our families, and those who work with and support us. From no tech and low tech solutions like color-coded pill organizers, sticky notes, and dry erase boards to high tech integrations like daily reminders connected to our phones or tablets, as well as health tracking apps that help manage our medical data, each connect and combine to create a network of systems that can help us stay on track throughout the day. However, this takes time, energy, and lots of trial and error to see what works best for each of us across many different settings and available supports.

Recently I found myself in front of a small committee answering questions about project management software. Our team had been tasked with the unenviable duty of going through feature lists and pricing options in the hopes that whatever selection we landed on would go over well with the rest of the company. We were supposed to be efficiency personified — and I was supposed to be an as-yet-unnamed project management software wizard….or at least that’s what they wanted.

What they got…was me.

There was no cram session in the world that could ever prepare me enough to know the intricacies of every system. But, being the sort of person that I am, I was going to try. So I did what I do best — I researched, I read, I watched videos, I tested, I created far too many fake accounts and studied like I had an exam before every meeting. It soon became clear there was no one-size-fits-all software solution that could possibly meet the needs of each member of our team, let alone the entire company (at least not one that anyone outside of a Fortune 500 could reasonably be expected to afford). The bottom line was that even with every integration, app, and premium add-on for me — and everyone else — organization is too personal to outsource entirely.

Live Work Spaces

As time went on I found it difficult to leave meetings where I would be discussing things like the availability of transition and employment supports and then switch focus to researching and testing project management tools. The contrast seemed too stark. These systems seemed to be developed inside impenetrable bubbles where people celebrate things like one hundred hour work weeks, live-work spaces, and books that profess super life hacks that supposedly squeeze efficiency out of every pore. At first glance, it didn’t seem like there was room for chronically ill and disabled people in this world of streamlined, hyper-focused, work-life-work balance. Despite best efforts, most people’s lives don’t fit into pre-planned boxes.

I am not the world’s most organized or detail-oriented person. Any semblance of organization or productivity that may be perceived is based on years and years of trial and error and near-constant adaptation. My spreadsheets are connected to task lists that have been backed up with reminders and a few random checklists thrown in for good measure. This isn’t an accident or good fortune. These are personal strategies for coping with known executive function issues — an umbrella term that I had only vaguely heard discussed in terms of it’s connection to autism until a few years ago.

Sprites or GTFO

Though my search was primarily focused on finding something that worked best on a professional front, I was intrigued enough by the overall concept to dig a little further. I was determined to find something that worked for me on a personal level. One simple way that has helped me become more successful and more likely to use the systems I have in place is through actively testing multiple systems and only keeping those I enjoy using and benefit from. Why keep a support around if it’s causing me even more stress? So I have become a fairly ruthless self-appointed systems editor. If something in my process is not working…it has to be adapted or GTFO.

I have found it particularly difficult from an accessibility standpoint to interface with many personal organizational tools because of the amount of visual information that is presented. There are also huge concerns with navigational options, lack of customization, or accessibility features in general. Accessibility is often an afterthought — if it’s considered at all. On the high tech side, some do not allow for robust organization or app integration, or don’t allow for updating across devices. Not having to enter information in multiple places is a necessity.

One of my new favorite productivity apps is called Habitica, which allows me to not only stay organized, but to do it with a bit of old school gamer flair. After creating an account, users design an avatar which is presented in an 8-bit RPG sprite-style and then proceed to creating lists. The Habitica team starts everyone off with a few template lists to get started and there’s a great Wikia fandom page that is full of helpful tutorials on how to use the app for those who need a bit more information or want to dive deeper into the apps more advanced features. The basic overview is this: Habitica allows users to create multiple lists including Habits, Dailies, and To-Dos, all of which function as reminders with separate customizable spaces for text (or emoji as I tend to use), notes, tags, due dates and timelines. Each time you complete a task you receive points that you can use to “purchase” rewards for your avatar. This is quite literally personal organization meets positive reinforcement meets gamification, — and I’m not mad at it. It’s just the right level of fun without being demanding.

Habitica’s interface is, in my opinion, easier to navigate than most, it has lots of color coded and visual supports and is generally uncluttered — but let’s face it, I’m a sucker for tiny sprites with swords so it was going to be hard to get me not to download this anyway. However, I did find it a bit daunting at first to try and understand Habitica’s differentiation between task lists and the types of reminders and to-do lists that I’m more familiar with. I have found the Wikia pages helpful, but it’s still a bit of a work around that I find more reminiscent of hunting down a decent walkthrough for difficult levels in a video game — something I’m not sure I’ve ever had to do for an app. I’d be curious to hear from others what their experiences have been like.

There’s also a social element to the app which I have not taken advantage of yet, but it looks promising. And even the folks over at Habitica themselves are in on the action. They are active on Twitter and have chatted with me a few times after I had tweeted some initial thoughts on the app. It’s fun to see a social media team that is engaged with their community.

Though my own journey in productivity and organizational management continues, it’s my hope is that the conversation around productivity, work, and organization will evolve and become more aware and inclusive of the needs of those who are lending their voices — particularly of the disabled perspective. Recognizing that no one tool can meet every need, it would be a wonderful to find no, low, and high tech solutions that are specifically designed with multiple accessibility features in mind — particularly with a keener focus on how and why we use and adapt tools in daily life.

sticky notes and siri

Today was hard. Sick, anxious, tired, frustrated, sad. But laying in the dark, listening to the music blaring in my headphones, I finally let myself be…

Sick, anxious, tired, frustrated, sad.

I stretched my arms out wide and felt my weight shift as bones and tendons popped beneath me. Inhale. I relished in each crackling sensation, falling deeper into my body until quick, sharp searing pain rippled across my right side…reminding me that a good day for my shoulder shouldn’t be taunted by impromptu, unsupported yoga sessions.

A few moments later a gentle vibration from my watch reminded me to breathe. I was already downward-dogging [and thinking dinner thoughts about pizza], how much more in the moment did Siri want me to be? Maybe I was still getting used to the idea that my watch was recommending that I take a break…Moreover, I’m now actively welcoming the reminders. Exhale.

 

Notes to Self: Use what works, scrap what doesn’t. You don’t have to do it all on your own.

Inhale. Thoughts bubbling. Is this what the future of self care will be like…communication via our watches? Star Trek was right. My mind continues to wander beyond the likes of Kirk and Spock until eventually I make my way back down Earth where memories of films like Metropolis, Ex Machina, and Her are waiting. I call out to my phone “Siri, remind me to research accessibility and Artificial Intelligence….” Repeat Exhale.

I readjust and move into in child’s pose, hold for a few minutes, inhale, then finally, end in corpse. I want to stay there, laying quietly in the center of my floor, forever.

Siri pushes a new notification – Heart Rate: 68. Exhale.

Despite being told of it’s benefits, meditation has always felt like far too much extra work and the cognitive strain of the practice never quite justified any the outcomes I had experienced in the past. Having struggled with intrusive thoughts and executive function/attention challenges for most of my life, incorporating buzzwords like mindfulness and general meditation practices into my daily routine has always felt like adding full body workouts instead of opportunities to rest — something that up until now, I wasn’t ready for.

 

So, what has helped so far?

With a ever-changing mix of no, low, and high tech supports (and a little prodding from those around me)…breaks have started to get easier. When I’m able to remember, I use my calendar to plan ahead and add them in where I know I’ll need them most. A carefully placed sticky note hanging on my computer monitor reminds me to take a break after a day-long all staff meeting, and reoccurring alerts with helpful personalized instructions on my phone accompany each of my upcoming doctor’s appointments. I’ve also installed an app that automatically dims my screen after a certain amount of time, forcing me to disconnect and look away from the screens I spend the majority of my day in front of. Hell, I’ve even got tattoos that serve as personal reminders any time I need something to look at and recenter quickly. (I’m not sure if tattoos count as low tech or high tech…but getting to watch the tattooist and their machine do their thing was pretty awesome).

I’m also looking forward to continuing to use habit tracking & productivity apps like Habitica that help me stay on track, and incorporating hobbies like video games and paper crafts back into my “downtime” routines. It may seem counterintuitive to actively schedule downtime, but I had to begrudgingly accept that for me, if I don’t remind myself, it usually doesn’t happen – even if it’s something I really want (or need) to do.As someone who regularly forgets to do things like eat, take meds, get up to stretch my legs/rest my eyes from the computer, or even will often ignore or not recognize the signals in my body that tell me that I need to use the restroom…these reminders to take breaks have been incredibly helpful. It was hard to admit, I was stubborn. I felt like needing reminders and sticky notes and lists and alerts everywhere was a fault. Then I learned about executive function and it all made sense. Also the importance of taking breaks, breathing, or “being mindful”….and needing reminders for those too.

 

Slowly I have started to feel space being created around the one or two minutes of me actively choosing to re-center, step away, and for as much as I had originally bristled at things that seemed well-meaning yet impersonal, intangible (and perhaps inaccessible in many cases) like “wellness” and “mindfulness”(what does they even mean, really?). The hardest part for me was learning that getting more in tune with when your body needs doesn’t have to come from attending certain yoga class or by purchasing Apple watch, even if they’d like you to think it does (for a long time, I thought the right tool or right support was the key that was missing…) but getting into the habit of taking breaks even if it’s only for a minute or less, regardless of what gets me to do it in the first place — has been surprisingly helpful for me so far. So instead of trying to adhere to someone else’s ideal setup, I’m doing whatever system works for me, whenever it works, wherever it works (that’s the goal anyway)…so far that’s a lot of sticky notes and Siri.

information overload

As an autistic and disabled person who works in education and resource development, I find myself in the position of being asked to discuss the intersection of science and disability with people often. This can range from prevalence rates, debunking the latest round of conspiracy theories, to defining what autism actually is. I admit, even though disability and autism are two of my favorite topics to talk about, I cannot be “on” all the time. Sometimes, I want to talk about wrestling or the latest comic book movie or the fact that I have maintained a 100% rating in Sim City for over a month, you know?

So when is the right time to ask all of your burning questions if not when you’re with a person who is living the experience(s)? Where can you go if you want good information about disability?

Start by talking to autistic and disabled people. Listen to what is being said. Reflect on how both big and little things can be changed for the better. If you’re so inclined, ask how you can support the work that’s already being done. It’s best to seek out those who have made ourselves available as advocates and educators rather than presuming everyone is up for a game of 20 questions. In my case, if you notice me across the food court with giant headphones on trying to grab a quick bite to eat between breakout sessions…maybe wait a few minutes. I’m probably catching up on a podcast and picking stray bacon bits out of my salad. Or better yet, try shooting me a DM on Twitter.

Keep it respectful. You may be curious, but we’re real live people – not human Google queries. Most of us don’t want to reveal intimate details of our lives including things like our diagnoses, medical histories, details of abuse or trauma, and sexual preferences/activities to people we hardly know. In my case, I usually talk fairly openly about my experiences online and off in front of audiences, webcams, or microphones — but for some, circumstances around disability and disclosure (including personal safety) are very real concerns. Consent is paramount in all contexts, if we decline to answer a question or participate in a conversation at all, respect the boundaries we have set and move on.

Seek multiple perspectives from autistic & disabled people on the issues that are important to communities around the country and the world. I’m only one person and can only share my experiences along with some helpful things I’ve learned along the way.

Check out autistic and disability-centered resourcesAdvocacy Groups, Blogs, Books, News, Social Media, YouTube, lots of amazing people are doing great work putting together information to share and support others along the way.

Seek perspectives from professionals who center our autonomy, dignity, privacy & who fight for better access alongside us.

Take care,

K